Wednesday, January 7, 2004 6:46 PM CST

Good evening,

As far as Kearstin's G/J tube I called first thing Monday moring (8am) to the hospital to set up an appointment (as instructed by the ER department Saturday) the receptionist said she would put in an urgent call to the GI doctor that changes these tubes. Around 10:30 I still didn't receive a return call so I called up there again and the receptionist wasn't to happy that I was calling again but I thought if it was an urgent call I would of heard something before two and a half hours later ? So she more or less told me the call was put in and I need to be patient. (Wonder if she has any children ??) So around 11:45 am the doctor called me back and said they have a date scheduled for Kearstin to come in.....date ?? She said they couldn't fit Kearstin in until Wednesday afternoon. I asked her if she was aware that Kearstin has a "catheter" in her belly to hold open the hole and that all her formula and medications is going in her stomach and not into her intestines like they should be ?? She said she was aware and we would have to wait until Wed. that that is the fastest they could fit Kearstin in....well if you can imagine that just didn't settle with me. I called Kearstin's neurologist (wonderful doctor) because he was the doctor that saw Kearstin in the ER on Saturday and instucted
us to make sure we got an appointment first thing Monday morning if not to call him....I did. After telling him what was going on he called over to the hospital himself and to make a long story short she had an appointment at 4:30. We arrived around 4:00 and waited until 5:30. Once they prepped her (they had to numb her because the hole had closed some) it took about twenty minutes to finish putting in the new tube. Kearstin has been an angel since this was done. She has been catching up on her sleep that she lost all last week and is feeling 100% better....

I had to go to the hospital yesterday for a sonogram. They did an internal and external sonogram of my overies, uterus, and kidneys to see if there may be any reason for the pains I have been having. I won't know anything until the doctor receives the results.

Kearstin goes back to Dupont tomorrow for x-rays of her jaw, a follow-up appointment with neurology, and a follow-up appointment with the plastic surgeon.

The hospital called yesterday to let me know Kearstin's next surgery (to remove the hardware in her jaw) is going to be on January 20th. Please say extra prayers that Kearstin doesn't have all the complications with this surgery as she usually does. She so much deserves a break !!

Please also continue to keep my dear friends in your prayers as well, just because the holidays are over doesn't mean that their heartaches and suffering is over as well. Please say an extra prayer for Kathy Reger and her family that they soon will receive some much needed comfort they deserve. Also if you could keep Meagan (little girl with the same birth defects as Kearstin) in your prayers she will soon be going in for an eye surgery. She is like Kearstin in many ways including getting complications after surgeries.

Well I don't think I am leaving anything out.....I hope all is well with all of you. Thanks for your support and prayers.

Please visit Kearstin's smile quilt anytime you would like again her address to that is : http://www.smilequilt.com/kearstin.html

Sunday, January 4, 2004 8:00 PM CST

I hope everyone had a safe and happy New Year weekend ?

Kearstin had a "ROUGH" week since Wednesday. As I mentioned in the last update she was non-stop crying since Wednesday for unknown reasons ? We tried everything to try to console her but nothing helped. I called the pediatricians office Thursday to try to get her an appointment but with the holiday they were closed. I called again Friday morning, told them all that was going on and they wanted to see her right away. The doctor examined her and couldn't find anything wrong....he said he knows she is in pain but can't pinpoint it, to call DuPont and talk to one of her specialist to see what they suggest. As soon as I left there with no resoluation to her problem I called her neurlogist he said to give her benadryl at bedtime to at least
allow her to get some rest. He thinks it is a combination of pain and exhaustion. He wanted to see her the next day (Saturday) in his office. He is such an amazing doctor to open his office just to see us. He didn't want us to take her to the emergency room with sick people in fear she may catch something. The next morning I called him because even the Benadryl didn't help Kearstin rest.....nothing was working, at this point she had twelve hours of "restless" sleep since Wednesday. Waiting until afternoon to go to Wilmington to see her doctor Kearstin's feeding tube came out of her belly !! I panicked. I called her doctor immediately and he said we didn't have a choice but to take her to the emergency room anyway and that he would meet us there. We left at 12:15pm and got there about 2:30. I sat with Kearstin down the hall from the emergency room where no one was sitting so she wasn't near anyone. And when they did call us, I know people thought I must of been related to Michael Jackson because I covered Kearstin's head with a blanket walking through, but I wasn't taking any chances. Ron waited for her name to be called and came and got us. We were finally called back around 4:30 and they tried putting a tube in (the same size that Kearstin had in) but by this time the hole had started to close ~~ ouch. So they ended up putting in four sizes smaller just to keep the hole from closing anymore. Then they sent us back out to the waiting room until 6:00. Once back in again they tried to see if the tube (catheter) they put in would allow her medications and formula to go through because they couldn't put in a normal feeding tube because there was no GI doctor to take her to x-ray to put one in. More or less they rigged her up just to be able to feed her until Monday when I have to take her all the way back up there to get her feeding tube placed. The only good thing about the whole situation was that Kearstin stopped crying once the tube came out of her belly earlier that day. The doctors said that her tube must of came out of place causing severe pain and finally pressure from her stomach pushed it out ? We finally got back home around 11:30 that night... Kearstin had a rough ride home because she was exhausted and very hungry (she didn't eat anything since 12noon). Once we got her changed, gave her her medications and started feeding her she went right to sleep. She slept until 5o'clock am and stayed up until 8am went back to sleep and stayed asleep until around 3pm... it is like a night and day difference, it's like we got our baby back !! She isn't one to fuss at anything, we knew she was suffering we just wished it didn't take so long to find the problem. Please pray for Kearstin not to suffer tomorrow when they change this tube. I don't know how they are going to put a size 16 tube in her belly when they had a hard time putting a size 12 catheter ?

I will try to update you again tomorrow once we get home.

Goodnight and God Bless !!

Friday, January 2, 2004 12:45 AM CST

Happy New Year !!!!

Whew where do I start... I have had great intentions of updating Kearstin's journal so many times before now but something else always took first priority.

I don't even know where to begin ? I guess I start off with Christmas. I hope Santa thought all of you were good this past year and brought all that you were wishing for ?? He must of thought we were extra good (boy we know how to fool him) because we got the best present we could of ever received by having Kearstin home for Christmas this year !!! Santa couldn't bring Kearstin many goodies last year with her in the hospital but he sure did try to make it up this year and he did a great job. Now I think we need to add on to our house so I have a place to put it all !!

I want to thank all of you that had helped Santa with Christmas by sending Kearstin gifts. Each one is very special and we will cherish them for a long time to come. Also thanks for all the cards, emails and phone calls letting us know that you were thinking about us on such a special day, we are so blessed to have each of you in our lives !!

As far as Kearstin's health. We went to DuPont again this past Wednesday for a follow-up on Kearstin's ear infection. Her ENT doctor called out sick with the flu but she saw another ENT specialist that we really liked. He said that Kearstin's ears look great !! And that when she has her next surgery (mid January) that she will be getting an ABR (brain wave test from brain to ear) hearing test done while she is asleep to determine how well her hearing is. So far her tubes are still in place and working well.

While we were there for that visit Kearstin's plastic surgeon found out we were there and wanted to check Kearstin as well. He said her incisions look good and healing well. He then talked to us about a health newspaper that DuPont puts out yearly about children and said Kearstin would be a great candidate to be in the paper for all that she has been through and to talk about her lastest surgery. We will know more details at a later date. But from what he told us her picture will be in the paper and an interview done by us ? Our baby might make headlines !!

Wednesday morning before we left to go to DuPont Kearstin was crying and very upset. We consoled her and left for our trip. During the trip up there she feel asleep. She was alittle gaggy but did fair. But on our way home she started crying very heavy again, we thought she was just tired. We stopped a little bit and took her out of the carseat thinking she needed a break, she feel asleep but as soon as we put her back she started crying again until we arrived home. Once home we did everything we knew to do to calm her but nothing worked. Kearstin has had the worst couple of days she has endured in a long time. From Wednesday afternoon until about four o'clock yesterday she had about two or three hours of sleep, she constantly cried the entire time non-stop. Her face was so swollen and red from crying it broke our hearts. We think she is teething. Her gums are very red and she doesn't want you to touch them. We called the doctor yesterday wanting to know if there was anything other than tylenol, motrin and gel for her gums that we could give her to help relax her but with the holiday they were closed. We were so worried with her continuous crying that she would begin to have seizures. But we haven't seen any. Right now as I write this she is sleeping. We are hoping she will continue to make up for the much needed rest she truly needs.

I don't know if I am making sense or not I am so exhausted but I needed to update all of you. I'm sure there is bits and pieces I left out to share with you but I'm hoping I think I filled you in for the most part.

Please say an extra prayer that Kearstin gets some relief from that pain she currently enduring and it is related to her teething. We will most likely take her to the doctors tomorrow if we can get an appointmet just to ease our minds that it is teething causing her to be so uncomfortable.

I must end now and try to get some sleep while Kearstin is sleeping, I don't know how long it will be before she wakes up again.

Good night and God Bless !!

Tuesday, December 16, 2003 11:49 AM CST

Thanks to all of you who have been concerned because of my lack of updating lately. I'm sorry to have worried you, all is okay. Between trying to get prepared for the holidays and going to all Kearstin's doctors appointments time has really slipped away from me.

Kearstin had to go to Dupont this past Friday for follow-ups with ENT and the plastic surgeon. The ENT doctor said she wants to continue Kearstin's antibiotic for another week. She cleaned Kearstin's ear out with a long skinny tool (she had a lot of wax build up) this looked all to familiar (I have alot of ear problems myself and know exactly how this feels ~~ not to pleasant)but as usual my tough little girl handle it like a champ ! She goes back for a follow-up on Dec 31st.

The plastic surgeon was pleased with Kearstin's scars and how well she sounded breathing. He asked a lot of questions of how she has been doing. He was pleased. She goes back to get an x-ray of her jaw on Jan 8 and if her bone as mended back together completely then he will set up a date of her next surgery to get her distractors out. We talked a little bit about when the cleft palate surgery would be scheduled and he said he really wants her as stable as possible and he may not want to do it until summer so the bad weather is over. He mentioned though that Kearstin still may need a trach (I thought we would never hear that word again) because with the palate surgery there is a massive amount of swelling involved and Kearstin may need some support breathing and unfortunatly (never thought I would feel this way) she won't be able to have support of the ventilator. We really won't know until Kearstin actually has the surgery and how she makes out during and after surgery~~ please keep this in your prayers, all of you know this has been a long battle trying to avoid the trach and we have come so far not needed it would break my heart if she ends up with it.

I too had a doctors appointment last Tuesday. I don't know if I mentioned it on her past entries or not but I have been having a lot of pains in my chest. The doctor confirmed what I already suspected, that it is anxiety attacks due from stress. I have stress ?? He was going to put my on nerve pills, but I'm not a big fan of medicine and I want to handle it on my own. If I feel I can no longer deal with the stress I may consider it, but for now I want to avoid medications.


Back to Kearstin, she still has a lot of diarrhea due to her ear infection and the antibotics. Everyday she messes up an outfit or two or three....more wash just what I need ! I'm thankful though that her bottom isn't sore, I have been keeping cream on it so it doesn't get irritated. She has been gagging more than she was when we first came home but nothing near as bad as before surgery. We are hoping it is related to the drainage from her ear infection?? As far as therapy she is doing great !! As a matter of fact her therapist that comes out three times a week is decreasing to two times a week b/c she said I do all her therapy with her anyway and she more or less just monitors her on what she is doing and tells me what to focus on. Kearstin rolled onto her belly by herself Sunday night, I was so proud of her !! She is holding her head up with more control and is raising her left hand to wave high in the air with her right arm down.....she is more vocal and tells me when she has a dirty diaper or wants to be held. She sits in her bouncy seat for a hour or longer depending on her gagging....but does much better than before.

I have tried time and time again to put pictures of Kearstin on here but have not been successful ~~ sorry I will keep trying. I don't know why it's not working I'm doing what I have always done ???

Well I would really love to continue to write but Kearstin's therapist is coming soon and I need to get her ready.

I will try to write again soon. Until then thanks for all of your love and support !!

Saturday, December 6, 2003 10:17 AM CST

As I add a Christmas background to Kearstin's page, snow is steady falling, it is so beautiful and peaceful to watch. Its so hard to believe Christmas is only weeks away....

I am sitting in my bedroom with Kearstin as I update today. What is that old saying, when it rains it pours ? Well we have had a flood !!! In the past month both of our vehicles have broken down (Ron's is STILL down, we can't find a part he needs anywhere !!) our house septic has been messing up and find out that we have a failed system (means we need a whole new septic) and now our house heater is breaking down. It stopped working in the middle of the night Thursday. We had a heater tech out yesterday, we thought it was fixed but last night in the middle of the night again it stopped working. So Kearstin and I have been spending our entire day confined in my bedroom with an electric heater ~~ who better to be stuck in a room ALL day but Kearstin......although she is being a sleepy head today !!

On a much better note......Kearstin celebrated her "first" birthday at HOME this year !! She was wided eyed all day until our company came and I guess she was partied out !! She slept the entire time they were all here. I only had grandparents and Godparents, trying to avoid to many people around at once. It was nice. I took pictures of Kearstin during the day that day, good thing I did all the others she was sleeping. Kearstin got a BIG red wagon (that Ron and I picked out) with regular air tires from my dad, Jane, my brothers Gene and Bill and their families, a Fisher price tape-recorder, tapes, and a musical toy from my sister Joan (Kearstin's godmother), an outfit from Ron's parents, we bought her a little tikes car that has a floor board in it and a long handle for us to push her around in, my brother Bill (Kearstin's godfather) also bought her a beanie baby kitten that was has the same exact birthdate as Kearstin's (it is very special) and a saving's bond, my other sister Helen stopped by during the day and dropped off about five outfits for her birthday, they are adorable. My other sister Rose dropped off a cake and outfits from her and her neighbors Mrs. Joan and Mr. Jack. My friends that I request prayers for her daughter (Arianna) Bridget and Matt came to visit us on Wednesday. That meant so much to us, they live 4 1/2 hours away. Seeing them and spending time with them was wonderful. They bought Kearstin a teddybear with her name embroidered on it, a beautiful silver bracelet with her name engraved on it and a clock for Kearstin's room. My other friend Debbie (her daughter works with Ron) sent a a birthday present home with Ron the other day, they were little pink bootie ornaments with her name, birthdate and happy first b-day personalized on them, they are just adorable !! My other friend (you didn't realize I had so many friends huh) Kathy (Nichola's mommy) sent a precious moments doll that when you squeeze her belly she says prayers and a Cd with many great music songs on it, she recieved many cards in the mail to let her know they were thinking about her on her special day and finally ( I think, I hope I didn't forget anyone ?) my other friend (Kathi and Rebbekah) sent Kearstin a music Cd about the love of a child (the songs are just beautiful......All of you thanks so much for making Kearstin's birthday so very special !! Just having your love that you show for her was enough let alone all the wonderful gifts you shared with her !! Thanks !!

Okay now as far as Kearstin's health situation. She was doing great when we first got home.....but as the week went on Kearstin started gagging not being able to sit up (not as bad as before though) fussy, wanting me to hold her (well that may be that she is a tad bit spoiled, okay I can admit it but she deserves it, she has a lot of time to make up for) and coughing. We were so worried she was getting sick on top of everything else. I took her to the doctor yesterday and found out she has a bad ear infection in her right ear. This could be all causing all those problems I just mentioned ? While we were there I addressed a few other concerns, like her immunizations not being up to date b/c of seizure activity (the dr called Dupont and spoke with Kearstin's neurologist about this matter, he didn't want to give them before b/c they could of been more harm than good to her)but they decided with the winter being here they need to make a decision. They agreed to give her shots up to date, this meant SEVEN shots at once !!! This included the flu shot. I was horrified, I didn't know they could give that many at once ?? I questioned it and all she said was to watch her closely for side effects ~~ well gee that was comforting. Then once we got home (four hours later) her nurse was due to come out to give her her RSV shot. I asked the doctor while there if it was okay to give this on top of all the others and she said it was fine ?? So far she has been doing okay, fussy and is very sleepy but other than that I have been giving her tylenol around the clock and keeping a close eye on her temp. She said the first 48 hours are the most dangerous.

I have several prayer request if you have extra time, please keep all my dear friends that have lost their babies this past year in your prayers for some comfort and peace, my sister (Mary) that also lost her son (she is having a difficult time dealing with his passing), my friend Kathy's neice that just had a heart transplant may be rejecting her new heart, her other friend is having a baby in Jan and the baby may have birth defects ? My friend's baby (Arianna) has been having a lot of testing done lately please pray she gets all good reports , our neighbor Kathy that just lost her mother before Thanksgiving, my friend (Debbie) her husband has also been going for alot of testing lately (I don't know how he made out yet but please pray they too get a good report, all the service men and women that are fighting for our country (my nephew Mike West is leaving after Christmas to do his duty, my sister Rose (his mom) needs extra prayers for strength during the time of his leaving and lastly Kearstin for her health issues, we are still praying that she is a miracle baby and overcomes all the obstacles that come her way !!

Okay I feel like I have written a book....and I'm sure you have other things to do other than read our biography so I will end. I hope all of you are enjoying your weekend. I will try to update again soon !!

Monday, December 1, 2003 11:18 AM CST

****added new photos****

I have thought about updating Kearstin's site many of times since we arrived home but each time I would try to sit down for a few minutes to do so, I either had company show up, the phone would ring or Kearstin would need my attention. I have intentions of filling you all the way in, but if I have to cut this short please understand.

Okay, we arrived home Wednesday evening around 5pm. Kearstin was suppose to be discharged early that morning but getting released from the hospital is always a chore. Anyway, Kearstin had the best ride home from the hospital she has ever had, she didn't gag one time (I can brag now that it is over) She was wide awake the whole ride, my son on the other hand rode in the back with her and he is the one that fell asleep (what a good babysitter he was ~~ I had to fired him !!) Once we got home it was unloading the trucks, fixing supper (I tried to tell Ron I forgot how to cook, but he wouldn't go for it ~~ darn )after supper I had to go to the drug store to get Kearstin's new medicines ( I should of taken my sleeping bag and took a nap, it took forever !! ) then off to the grocery store ( I had to get something for Thanksgiving supper) I never thought I would get out of there, I ran into so many people I knew that were asking about Kearstin...I couldn't wait to get out of there, I looked terrible and was so tired. Kearstin's first night home was good. And it felt so good too, just to have her home so I could sleep next to her !! I was with her everyday, but missed her so much......

Thursday ~~ Happy Thanksgiving !! I hope everyone had a blessed thanksgiving day ? We were very blessed in countless ways ~ being home with our daughter for the "first" holiday since she was born, just being home and all the wonderful people that have come into our lives that we will forever be grateful for ~~ thank you !!
My son wasn't taken no chances, first thing in the morning he took our Christmas tree out of the shed and brought it in the house to put up.....we weren't home to put one up last year, so he making sure we had a Christmas tree this year. After bringing it in he put it together, lost interest and left the rest for me (thanks, I didn't have enough to do already....) so I spent hours straightening out branches (when Kearstin would let me ) then the rest of my day was unpacking, tending to Kearstin and cooking.... what a great day !!

Starting Friday night, Kearstin was uncomfortable, crying alot ( wanted me to hold her ~~ as much as it broke my heart to hear her cry (b/c I didn't know what was wrong) at the same time it was music to my ears and for her to want me to hold her melted my heart (she never wanted to be held before) then each night after that she hasn't slept much at all and up most of the day ??? So needless to say we are all pretty exhausted, well except for my son he can sleep through anything !

All in all, besides not sleeping very well Kearstin has been doing good.... she is much more comfortable (she gaggs every once in awhile and can sit up for HOURS with no problems..... she is much more vocal (we think she can hear herself now with her tubes in her ears ) it is so good to hear her !! She loves to be held and will let you know to pick her up (she will stop crying once held)(but that's fine with me !! ) Kearstin is due for her RSV shot this week (actually Thursday on her birthday ~~ what a birthday present that is ! ) then Friday to the doctors for a follow up....

Wow I got more written than I thought I would...now Kearstin is wanting me so I better go for now....I will "try" to update again real soon !!

Tuesday, November 25, 2003 11:29 PM CST

Whew ~~~~ what a week !! I am truly sorry for not writing in all week...... Kearstin needed me by her bedside most of the time. I don't even know where I left off and I'm to tired to look back. To make a long week short I will just tell you that Kearstin was battling pnenommia, staff infection, blood infection, collapsed left lung, fluid in left lung, fevers (103) withdraws, ect.....

I'm pleased to say Kearstin has improved and doing much better !!! As a matter of fact she was moved from the ICU yesterday to the third floor (next step to going home !!)

Her plastic surgeon and ENT doctor came in early this morning to evaluate her airway issues and BOTH were very pleased. They said as far as they are concerned she is released from them to go home if the other doctors all agree....... the other docs came in shortly after and talked to me also about soon going home. I'm excited but worried at the same time....Kearstin is still breathing in the high 80's to 100's per minute (they don't know why ?), she is requiring oxygen while sleeping she drops to 89-90 should be high 90's at all times (they think this will resolve once all her swelling is gone ??) so when we go home she will need to continue with oxygen (when asleep) (yuck) and the pulse ox machine to monitor her rates. Oh well could be worse ........ anyway if all goes well tonight and her x-ray that was taken this evening comes back looking good on our way home we go !!! WOW that means we will actually be home for a Holiday (Kearstin has never been home for a real holiday since she was born, and it couldn't be a better holiday to go home to, Thanksgiving. We have had such a rough year and we know it will continue for a long time to come, but in the mist of all the heartaches we have so much to be thankful for. We have Kearstin ( the toughest and strongest little girl I have ever met, that we admire and love with all of our hearts, our other children that are "healthy", our friends and families and all the wonderful people we have met along this journey of Kearstin's, we are so grateful God put them in our lives to help us through such difficult days (He always knows what we need !!) So Thank you, all of you that have helped us in more ways then you could even begin to imagine, without your support, love and prayers we could of never been able to get through what we have had to endure !!

Well I need to end I have a lot of packing left to do and then try to get a couple of hours of sleep.......Please say an extra prayer that everything goes in Kearstin's favor tonight and that we have a safe ride home tomorrow !!!

Also if you would please remember my friends in your prayers that lost their precious children this past year, I know they could really use extra prayers sent their way during the holiday season......Kathy Reger and family (Nicholas), Julie Kerr and family (Marybeth), Sarah Papacoda and family(Katie), and Michelle Madden and family (Mykenzie) and my sister, Mary who also lost her son a few months ago. I hope their experiences helps many people realize how blessed they are that they have their children to love and cherish...we never know what the future holds.

I pray the next time I write in it's from my home computer !! God Bless and Happy Thanksgiving !!

Monday, November 24, 2003 2:06 PM CST

I am sooo sorry for not being able to update....Kearstin has been going through a withdraw and needs me to be beside her all the time....(its nice to know she needs her mommy)...I don't have but a minute, I will write details of how Kearstin's week went later but I wanted to let you know not to worry, she is doing much better and is on her way to recovery (I'm not bragging !!!) thanks for all the prayers, they are working !!

Wednesday, November 19, 2003 9:23 AM CST

Good Morning,

There is no big improvements with Kearstin since I wrote Monday morning. She is still on the C-pap machine (it's not really doing much for her) She continues to breathe in the 90's and over the 100's when she should be breathing in the low 30's per minute. She is still dropping her oxygen levels in the lower 80's sometimes it's been as low as lower 70's (should be high 90's to 100) She is also going through a withdraw from the sedation medication she was on while on the ventilator. She is making such sad noises, kicking her legs, throwing her arms around and crying .....they have given her another medicine to try to calm her but it's not really doing anything. Another thing making her irritable is the fact that she has a very sore bottom from the diarrhea she is continuing to have along with bedsores from laying for so long. As far as her screws, the plastic surgeon is very pleased how far her jaw has come out so at this point, he has stopped turning her screws (last time this morning) and is now waiting for her to overcome all the other issues before he does anymore with her jaw. Her jaw bone is out 12mm (about a half inch) he was going to go as far as 15mm, but he wants to wait and see how her breathing issues are after she is completely off the c-pap. She still has infection (they are treating her with a different antibiotic to try to kill the germs ) Her lungs haven't gotten any worse but not any better either, we found out yesterday that her left lung has collapsed. I don't know if I am forgetting to mention any other details it's been such a long couple of days with alot going on.....please pray that Kearstin soon gets some relief and on her way to recovery.

I also wanted to thank those of you who tried making my birthday alittle brighter by the phone calls. I want to send a special thank you to my dear friend Kathy Reger. I went over to the Ronald McDonald house for supper that evening and the front desk had called my room and told me I had several presents at the desk. When I went down there I had a plant with a happy birthday balloon , a pocketbook filled with many items and a beautiful baskets with lots of nice gifts inside along with many cards......Kathy thank you SO much, you'll never know how much that truly meant to me and I will forever cherish your thoughtfulness !!!!

Also a special thank you to another friend, Joy. She had sent me a beautiful plant arrangement with a teddy bear attached. Thanks so much Joy !!! And an extra thanks to my Dad, Jane and my sister Joan. They came up on Sunday and took me out to lunch, and to see Kearstin.....

I need to end and get back up with Kearstin, but I will try to update as soon as we know more.....until then God Bless and thanks for all of your love and support.

Monday, November 17, 2003 1:30 AM CST

I was going to write good evening but then as I look at the clock it's 1:30 in the morning....as you probably have already guessed with the time that I am writing it hasn't been the best of days lately....

I am to exhausted so I am going to make this brief and short and write details tomorrow (maybe ??) but Kearstin came off the ventilator Saturday at 2:30 pm, she did great !! She had a good evening and all was going well until this afternoon around 2:00ish ?? She put in a very,very rough evening, she was desatting many times and everyone was running in her room surrounding her bed (very scary) to make a long story short she is currently back on the ventilator but only C-pap at the moment....they are trying their hardest from having to put her completely back on the ventilator but they way things look it's going to happen, she is working sooooo hard to breathe and is exhausted from even trying !

Kearstin is also having problems with fluid in her lungs and has two infections due to the arterial line in her leg and also the cathetar.....she is on heavy meds to try to clear these up as soon as possible.

I will try to write more tomorrow with details .... all I wanted for my birthday was for Kearstin to get well, (I am so tired of seeing this little girl suffer her entire life) I guess I didn't blow out my candles the right way ??

Saturday, November 15, 2003 2:48 PM CST

Okay no snow yet, but as cold as it has gotten it will soon be on it's way (hopefully not until we are home safe and sound).

Kearstin had a terrible day yesterday. They turned her vent settings down early yesterday morning, to get her ready for extubation and she didn't do well at all. We think it was a combination of lowering the settings and also lowering her sedation medication all in one shot. After her struggling and her heart rate rising and going through a withdraw of the seduation medication, they decided to increase her rates back up to get her more comfortable and gave her back the sedation medication for hopes of trying again tomorrow (today now) after the stress she endured for those few hours she started having infantile spasms again (this broke my heart) she has been free of these for close to two months now after having these for a continuous hour (every fifteen seconds~~the worst she has ever had them) they called Kearstin's neurologist and he increased her medication to four times a day verses the two times a day she was on (this will make her more sleepy)I don't feel it was a matter of needing more medicine to control them verses getting her more relaxed, I truly believe it was due to all the stress to her body. She still continued having a rough night, but not as nearly as bad as the day she had.

Today Kearstin is running a fever (was close to 102) they gave her tylenol to try to break it. They won't try to take her off the vent if it doesn't come down. After awhile they checked her temperature again it was still 101.5 so they gave her motrin (they said the combination usually brings it down ?) Later on they started getting worried that with Kearstin still having a fever that she may have an infection....... they found out that the central line that was in her leg to get blood stopped working and they think she may of gotten the infection from this. They took that line out and had to put another line in (took six sticks to get one in ~~ ouch !! ) I asked the nurse about when they would be taking her catheter out (this is my third time asking all week) she said she that was a great question that the infection could be caused by that (urrgh...) they came in after consulting the doctor and took that out as well... they sent cultures of both the catheter and they arterial line to see if it was an infection growing. That's where we are now, waiting for the results..... The doctor said that there is still a chance that they will extubate her later today, depending on the results of the labs ?? Please pray she can come off the vent. She is very uncomfortable and is wanting that tube out !! (every time they take the straps off her hands to re-position her she goes right for the tube, if they won't take it out she will !!)

I will try to update again later....please say some extra prayers that Kearstin soon gets some relief...Thanks so much and God Bless !!

Thursday, November 13, 2003 10:11 PM CST

Good evening...

Kearstin was more uncomfortable today verses the days in the past. They are going to start weaning her off the ventilator tomorrow, if she is ready. So today they wanted her to "wake" up alittle on her own, not giving her as much sedation medicine. It was hard to watch her so uncomfortable.... she kept opening her eyes staring, with a look in her eyes as if she was saying "help me Mommy".....she cried a few times, I know it was pain she was enduring. I held her hand and kept talking to her telling her it will all be over soon.....

The plastic surgeon decided that he was going to turn Kearstin's screws one last time this morning and after that wait until she is off the ventilator and all the swelling is gone to determine if Kearstin's jaw is out far enough to support her airway.

Tonight Kearstin started to have diarrhea, not what she needs !! Her cultures finally came back normal ( the one they took last week) We are hoping it is nothing to worry about, she isn't running a fever with it so maybe it's just all the changes in her medications and trying to wean her off of the ventilator ??? We never know, Kearstin likes to pull some unwanted surprises every now and then.

Kearstin's social worker from early childwatch, Gloria, came to visit Kearstin and I today. I was so happy to see her, she is such a wonderful woman with such a "big" heart ! She baked some cookies for me (she wants me to get fat).... thanks Gloria, your so special !!

Please say some extra prayers that Kearstin comes off the ventilator with out any complications and that she isn't getting sick ( having diarrhea worries me )....

I will let you know the outcome tomorrow, thanks again for all your love and support.

Wednesday, November 12, 2003 9:50 PM CST

Good evening. I feel so guilty not being able to be in touch more, knowing so many of you check in daily to see how Kearstin is making out.

Kearstin is doing as good as expected. She is still swollen quite a bit, but it has come down a great deal compared to what it was like.

The Dr came in tonight and said that he may STOP turning the screws tomorrow morning because her jaw has come forward quite a bit....of course we can't see much of a difference right now with her mouth being all taped up from the ventilator and the swelling she still has. Her last turn of the screws (three times a day) was suppose to be Saturday evening at midnight. He is meeting with Kearstin's ENT doctor tomorrow morning to discuss her opinion of Kearstin's airway after they both review the ex-ray of her jaw. If he stops the turning of the screws he will then talk to the ICU doctors about getting her off or turning down the rates of the ventilator...please say extra prayers on this, we all know Kearstin doesn't do well coming off this machine.

I also want to thank those of you that remind us that your thinking about Kearstin (and us) by sending emails and calling....your support means so much !! I'm sorry if I don't get a chance to get back with each one of you personally, by the time I get back to the room after being at the hospital all day, I have a million things to do and then before I know it it's very late and I need to get a couple of hours of sleep (what is that again ?)

I will try to update again tomorrow evening to let you know what the doctor decided was best for Kearstin.... until then thanks and God Bless !

Monday, November 10, 2003 9:27 PM CST

Boy things have been crazy for us lately....Ron went home to grab some things, check the mail, check on our dog ect......while he was gone I noticed a leak coming from under our truck. When I turned on the truck our brake light was on (not a good sign) ... Ron called later and said he was on his way up and broke down in his truck !!! Our neighbor picked Ron up and took him back home.....thank God he wasn't to far from home when he broke down ! Once he was home my brother came over to help him find out what was wrong...it was the fuel pump. They got the old one off, but the new one takes a week to come in so my brother was nice enough (he will do anything for anyone)to let us borrow one of his trucks to get Ron back and forth to the hospital and work...(he is a lifesavor) once that was done, Ron came up later that night. Today we took my truck to Pep-boys to get fixed....money, money, money !! It had a hole in the brake line, they fix it, but the labor cost a fortune, boy they got their Christmas present from us early !! Ron could of fixed it himself, but with no tools or parts up here we had no choice.


Kearstin is about the same tonight...still swollen, not as bad though, it's SLOWLY decreasing. Still no results in from the culture ?? She woke up twice today crying in pain,(this is very hard to watch) kicking her legs and throwing her arms.....the nurse gave her a boost of her pain medicine immediately. Since then she has been very comfortable and resting.

Two of the nurses (Tammy and Gail) that was in the CICU came over to visit Kearstin. It was so nice to see both of them....we have been in this hospital for so long it seems like everyone is family to us....we are always running into so many fimiliar faces.

I have put a couple of photos on her page tonight, but I will warn you they aren't very pretty.....

Please continue the much needed prayers for Kearstin's recovery, thanks so much !!

Saturday, November 8, 2003 5:33 PM CST

First of all I want to thank everyone that has been letting us know they are thinking of us either by phone calls, e-mails ect.. Your support means everything to us !!

A special thanks to Ron's boss, Kay. I walked into the RMH tonight for dinner and the desk clerk told me we had flowers delivered to us today. Kay has been one of our gaurdian angels since we have began this heartbroken journey with Kearstin.

We have met so many wonderful people since we have had Kearstin......we wish so much it could of been under different circumstances, but we are truly grateful that God sent each of you to us to help us cope with all that Kearstin has been enduring in her life.

The past couple of days Kearstin has had a lot of swelling from the operation. She looks three times larger than she normally is.....it is so sad to see her like this, it breaks our hearts, we just hope it is all worth it in the end.

They believe Kearstin has an infection or pnenommia again. They ruled our RSV but there is something going on....we are waiting for the test results from the culture they sent out last night. Something she really doesn't need while trying to recover from major surgery. Please keep this in your prayers that what-ever she has will quickly disappear and not cause any complications.

I need to end for now, I need to grab a bite to eat and head back over to be with Kearstin. Thanks again for your uncondional love and support. God Bless !!

Thursday, November 6, 2003 8:11 PM CST

I am so sorry I haven't had a chance to write an update until now. It's been a loooong day for both Ron and I, but mostly Kearstin and the Doctors.

Last night Kearstin had the best night she has had in months !! I just know God was allowing her rest for her surgery today. She woke up this morning at 4:00am cooing and looking all around...after getting our showers and getting ready we arrived to the hospital at 6:00 am. They took her back at 6:30 to prep her. All the doctors came around introducing themselves to us and what they are going to be doing in the operating room. I was trying to hold up not crying until ALL the drs came around her bedside then I couldn't hold back any longer. I just didn't want to give her to them for nothing in this world.... as soon as I had to hand her over my heart went with her ! The nurse grab a box of tissues for me and gave me a big hug and was actually crying with me....she assured me that Kearstin was in good hands and that everything was going to be fine.

They finally took her back to start surgery at 8:00 am and nurse came out every hour to update us on Kearstin's progress. From 8am until 10:00 am they still weren't able to start surgery. They had a lot of difficutly getting her art-line in her leg incase they needed to give her blood. (without this in they couldn't do surgery) after the two hours they finally got it in, got her hooked up to the catheter for peeing, and put the ventilator in (they were worried about complications getting this in but that was the easy part compared to the art-line ~~ Kearstin is always full of surprises !!) Finally at 10:15 am Keastin's ENT doctor started her procedure of putting tubes in both of Kearstin's ears. After about an hour she came out and said that they were in and that Kearstin had a lot of fluid in both ears and that she didn't see any signs of nerve damage (Yahoo, we were worried she might of had permanent damage to her ear drums, but she said she forsees that Kearstin is going to be able to hear a lot better now~~ this was our first blessing !!)

At 11:15 am the jaw surgery began......without going into great detail Kearstin's surgery was completed at 4:30 pm !! I believe this was the longest day of our lives !! I think I received many more gray hairs while waiting (good thing for hair dye or the nurses will think I am her grandmother and not her Mommy )

The doctor himself came out to talk to us after about a half hour after surgery. He was pleased with how well the surgery went without any complications. He is confident that this surgery is going to make a big difference in Kearstin's airway issues. (we are still praying for no trach)... Kearstin skipped going to the recovery room and was transported over to the PICU right away. After they got her settled and hooked up to all the machines that drive me crazy to watch, they allowed Ron and I to come and see her.....I knew it was going to be hard to see her with the ventilator in again and all the swelling that came along with the surgery but nothing prepares your heart to see your baby look the way she did. She started having a lot of swelling, but the nurse said the worst is yet to come after a couple of days she will be very swollen and black and blue. She has two incisions under her jaw and two screws in the back of her ears (that were bleeding, they are measuring how much blood she loses to see if she needs any replaced)

We were able to kiss and touch her....and boy did those long needed kisses feel so good !!

My Dad, his wife Jane and my sister Joan was with us all day for support...... thanks we greatly appreciated it !!

We left around 7 pm to go back to the RMH to grab a bite to eat while they finished cleaning her up and going over all of her records (she has many, many folders ......) I am going back over to be with her but Ron is very exhausted we neither one was able to sleep last night, so he is going to try to get some rest, I won't be able to rest until I see her again and how she is doing.....so thats all I have time for now, I hope I cleared up any questions you may of had, I don't know if I made a bit of sense, I am so tired and just want to be with my baby girl......

Thanks for all the love and support from all of you, we so much appreciate every ounce !! Kearstin's telephone room # is 302-651-5492 if you can't reach us at the RMH....

If you have any time for prayers left tonight would please keep my friend's baby Arianna in your prayers she is having a lot of seizures tonight and getting swallon for unknown reasons (they think it may be due to her heart )Thanks again....God Bless !!

Wednesday, November 5, 2003 8:00 PM CST

Where do I begin ?? First, thank you so much for all of the love, support and prayers your sending our way, I can't begin to tell you how much we appreciate all of them....there are a lot of different emotions tonight with getting ready to take Kearstin in for her surgery tomorrow @ 6:30 am.

Kearstin had a very rough ride up to the hospital today. It got so bad we actually had lay her down on the seat, she was gagging so much that she kept losing her breath. So needless to say the trip up here wasn't fun......

First we had the post-op appointment. We still don't know what ICU Kearstin will be in, they are leaning towards the Cardiac ICU, but it depends on the cardiac Dr's schedule. We won't know anything about that until in the morning. After that appointment we had to go and get blood drawn (that they weren't able to get) they tried four different times and then said they would have to contact the Dr and let him know that they will need to put a line in tomorrow before surgery. Kearstin was screaming, kicking her arms and legs so hard that another nurse had to hold her down while they tried getting her blood. It was so sad to watch, she was fighting with all she had to get them away from her...We finally got to the Ronald McDonald House at 3:30 (our appointment was @ 10:30) we checked in and got Kearstin settled. Since then we have just been cuddling and giving Kearstin all of our attention and love.

We are now going to lay down and rest for our "big" day tomorrow....I will try to post an update as soon as I can.

Our number at the Ronald McDonald House is below...I will give you Kearstin's room telephone number as soon as we receive it.

Thanks again, God Bless !!

Tuesday, November 4, 2003 8:52 PM CST

I can't believe Kearstin is eleven months old today...with all that she has been through somedays feel like she should going off to college ! And others seems like I just saw my precious little girl for the first time when she was born...

Nothing really new to report. Kearstin had her last therapy session today until we return home. JB, Kearstin's therapist brought me a baggie full of things for our trip, she is so sweet. Her and I have cried a lot of tears together...sometimes they would be out of joy, when Kearstin accomplished something new that she has been trying so hard to do or like now with her having to endure another surgery.... Kearstin has touched a lot of peoples lives along her little journey......she has and always will steal my heart over and over again until she is old and gray like me !!

I have been packing, cleaning, and stopping to kiss Kearstin to remind her how much Mommy loves her....every time I look into those big green eyes I just cry. She has no clue what is about to happen to her.... I am so nervous, scared, all around an emotional wreck.....I have been trying to keep my faith strong and just know it's in God's hands.

I "think" I am pretty well packed. My husband asked if I was moving. This time is different than all the other times...the other times were emergency trips and we just grabbed what we could, this time I was able to pack what I want (do you think Ron's jeep could pull our home up there, it would be easier than deciding what to take)

I will try to update you after Kearstin's appointment tomorrow and after we get settled in the Ronald McDonald House....Please say a few extra prayers on Thursday for Kearstin, she could really use them !! Thanks and God Bless!!

Thanks to all of you that have been writing to support us, your words mean so much !!

Tuesday, October 28, 2003 7:25 PM CST

~~~~update at bottom~~~~

I received the call today that we have been waiting for from the surgeon's office with a date for Kearstin's jaw surgery. She will be having surgery on Thursday, November sixth. We have to take her for Post-op on Wednesday, November the fifth to make sure she is in good health to undergo this surgery. I don't have a set time as of yet, we will know more details on the fifth. I was told today that she may be having surgery in the cardiac OR because of her past heart history as well as the current conditions with her heart. (large heart murmer and narrowing of her aortic value) Especially since this surgery is going to be a minimum of four hours long.

We have been praying for a date so Kearstin will hopefully get some relief of suffering so much. But now that we have it, it has put butterflies and knots in my stomach. I have been an emotional wreck since I received the call....it breaks my heart to have to take her back to the hospital for another surgery. I know it needs to be done but I am scared at the same time. All I keep thinking about is my friend's little angels that have gone to heaven now. They too had their precious babies home and had to take them back for surgery and never brought them home again....I am trying to think positive and trying to keep my faith that she has been through so much and she will get through this as well....Please say extra prayers for her and for us for the strength to get through this surgery successfully.

I don't know if I will have time to update this again before we have to leave. I have so much to plan ahead for. We don't know how long she will be in the hospital after surgery but I am taking my laptop to keep you posted.

Thanks for your love, support and prayers without those we would of never been able to get this far !!

If you haven't checked out Kearstin's smile quilt I had made for her please do so by clicking on http://smilequilt.com/kearstin.html

Also Kathy (Nicholas's Mommy) had a memorial quilt made for her little angel that is now in heaven looking down on us....please if you have a moment add a patch to his quilt to let his family know your thinking of him!
his address is
http://smilequiltmemorials.com/nicholasreger.html

Thanks and God Bless !

Tuesday, October 28, 2003 7:25 PM CST

I received the call today that we have been waiting for from the surgeon's office with a date for Kearstin's jaw surgery. She will be having surgery on Thursday, November sixth. We have to take her for Post-op on Wednesday, November the fifth to make sure she is in good health to undergo this surgery. I don't have a set time as of yet, we will know more details on the fifth. I was told today that she may be having surgery in the cardiac OR because of her past heart history as well as the current conditions with her heart. (large heart murmer and narrowing of her aortic value) Especially since this surgery is going to be a minimum of four hours long.

We have been praying for a date so Kearstin will hopefully get some relief of suffering so much. But now that we have it, it has put butterflies and knots in my stomach. I have been an emotional wreck since I received the call....it breaks my heart to have to take her back to the hospital for another surgery. I know it needs to be done but I am scared at the same time. All I keep thinking about is my friend's little angels that have gone to heaven now. They too had their precious babies home and had to take them back for surgery and never brought them home again....I am trying to think positive and trying to keep my faith that she has been through so much and she will get through this as well....Please say extra prayers for her and for us for the strength to get through this surgery successfully.

I don't know if I will have time to update this again before we have to leave. I have so much to plan ahead for. We don't know how long she will be in the hospital after surgery but I am taking my laptop to keep you posted.

Thanks for your love, support and prayers without those we would of never been able to get this far !!

Sunday, October 26, 2003 6:23 PM CST

Happy "First Halloween Kearstin " !!!

Kearstin is going to be Minnie Mouse for her first Halloween....Daddy wanted her to be a little pumpkin because we always seem to call her "Pumpkin"....

I haven't written in this past week because I haven't really gotten any answers to when Kearstin's jaw surgery is going to be. I called several times this week, because no one called at the beginning of the week like they were suppose to. I finally couldn't wait any longer and on Wednesday I called and the lady that does the surgery schedules said she would call me back later that afternoon once she talked to the doctor to see what and when the surgery will be. Needless to say I have clung to the phone and no return call was given. I called again on Thursday (feeling like a pest) and she then told me that they are working on trying to get Kearstin in to OR that her surgery is going to be four hours or longer and trying to "fit" her in for that long of a time is very hard, but she is on the priority list and she will call with a date as soon as she knows something.....

Kearstin hasn't been doing well this week at all. She is gagging more and more as the days go by. I feel as though (and I'm not a Dr by any means) but the bigger she gets the harder it is for her to breathe. If her jaw isn't growing along with her body like it should be, her airway isn't growing as well causing more and more airway obsruction. Or we also think she may be teething along with everything else. And the extra secretions are adding to her gagging more because she's not able to swallow them as we would. She hasn't had a good night sleep in over a week (she seems to be worse at night with gagging ?) and is very uncomfortable.

Her therapist came out twice this week and didn't work with her due to her sounding very junky.....Friday night Ron was in the living Ron with Kearstin and screamed for me to come in because Kearstin couldn't catch her breath and was turning blue. She was struggling again tonight doing the same thing.

Please pray that we soon get a surgery date. We don't want her to have to go through another surgery, but we know it needs to be done to make her more comfortable. She has been really struggling this week and it's the hardest thing to watch your baby doing all she can just to breathe.

Thanks and God Bless !!

Friday, October 17, 2003 5:23 PM CDT

Sorry I haven't written until now to update you on how Kearstin's DRs appointment went on Wednesday.

As you know we went for a reevaluation to Kearstin's ENT (ears, nose and throat) Dr to see what her opinion was on what should be the next step on Kearstin's airway issue. She agreed that Kearstin is at to high of a risk to do her cleft palate surgery before doing something to fix her airway issue. The DR said that she agrees with the platic surgeon that the jaw expansion should be done. She also said that when this surgery is being done that she will be putting tubes in Kearstin's ears. Then she mentioned something we didn't want to hear. She said that Kearstin may still need the trach after this procedure to take care of her mucus issues ?? We are praying that this procedure will benefit Kearstin enough where she wouldn't need the trach, but Ron and I talked about it and after setting our on feelings aside we decided that if this surgery does't help her completely and she is still very uncomfortable to where she still isn't able to sit up for long periods of time without the gagging, then we must do what is best for Kearstin. Please say some extra prayers ! Kearstin's plastic surgeon was on vacation this past week but will be back to work on Monday. He will call us with a date and answer any questions to the surgery we may have (lots) ..... the nurse that works along with the plastic surgeon told us that Kearstin will be put on the priority list because this surgery is holding her from getting her cleft palate surgery done and they wanted to do her cleft palate repair before she was a year old and she will be a year soon !! As soon as I find out the date I will be sure to post it....

I guess I am getting paid back from what I mentioned in the last journal entry about Kearstin being a Mommy's girl(not Daddy's)......I don't ever go anywhere other than to the grocery store once a week and would you believe I went up town to get Kearstin some more tylenol and while I was gone she SMILED for her Daddy !!!!!! I came home and of course Daddy couldn't wait to tell me the BIG news.... I couldn't believe it, I have been trying and waiting for ten months for this day and she did it when I wasn't around !! I didn't know to cry or be happy so I did both !! I tried for over an hour getting her to smile again, but she wouldn't give me even a smerk.....

Kearstin has been being a good girl (as always) with her bath time ! She seems to enjoy getting her baths now. I want to promote her and give her a bath in her tub, but I don't want to reuion what is working (a sponge bath) it took me this long for her to tolorate these ?

Kearstin has also been very active with her legs and arms while she is laying on the floor or in her bouncy seat. It is cute to watch her, we think she realized that her body has moveable parts !!

I have a couple of new prayer request, I hope you don't mind ? Nicholas's Mommy (Kathy) her friend, Mary is pregnant and they found out that the baby has the same heart defect as Kearstin (hole in the heart and aortic value is to small) plus they think that the baby may have some chromosome (22) problems ? Please pray for this family, Ron and I know the fears they must be enduring and as you can imagine knowing something is wrong with your unborn baby is extremely stressful.

Also, Marybeth's Mommy (Julie) her husband's friend at work just lost an unborn baby that I believe was due in November. Please keep this family in your prayers that they receive comfort and peace.

I need to end Kearstin is sitting in her bouncy seat as I write this and she is starting to gag....I need to go and lay her down.

I hope all of you have a great weekend, I will be in touch the first of the week. God Bless !!

Monday, October 13, 2003 11:23 AM CDT

Good Morning !

Kearstin has had a couple of good awake days lately !! We were so glad to see those big, beautiful "green" eyes (they have changed completely now)(Daddy thought she was going to have his brown eyes, but I told him she was going to take after her Mommy and she did ! (Mom's know everything)(don't tell her Daddy I said that !)

Kearstin has also been back to babbling a bit lately as well...this has been music to our ears !! We missed that cute little voice of hers....

She isn't rolling on to her side or her belly anymore, this upsets us. But she is still lifting her head up off of the floor by herself and turning her head back and forth with no assistance so we will take that !! When she's ready she will go back to rolling over.

Ron has her doing this other little thing now, he puts his hand out and tells Kearstin to put her hand into his and she does it !!! He is such a good Daddy, I am so proud of him !! And Kearstin loves him so much, she moves her legs and arms all around as if she is excited to see or hear his voice...but no matter what Ron would like to think, she is still Mommy's little girl...

We go to DuPont on Wednesday to see Kearstin's ENT Dr so she can reevaluate Kearstin's airway issues. She will then give her opinion to the plastic surgeon and they will make the final dicision on what operation is best for Kearstin. We are praying that they decide to go for the jaw surgery, we feel as though this would be the most bentificial for her.

I have been in close contact with Kathy (Nicholas's Mommy)(www.caringbridge.org/pa/nicholasreger) she has become a very dear friend, I feel so blessed that God has brought us together. Please continue to keep her and her family in your prayers for they are still having some difficult days with the loss of their sweet baby boy.

And if you have some extra time for prayers please continue to pray for Katie's family, Marybeth's family, Mykenzie's family and Arianna (she is getting alot of test done lately, please pray they get the news they are hoping for)....they could use some extra prayers sent their way.

Thanks again for taking time out to check in on Kearstin, we are forever grateful !!

Thursday, October 9, 2003 4:07 PM CDT

Good Evening !

I still don't have any answers on Kearstin's surgery date nor what procedure they decided would be best for Kearstin as this time. I called yesterday but the surgeon was in surgery and then had a meeting in the afternoon. I called again today (I need to know something, waiting for the final decision is worrying me) the nurse said that they are still waiting to meet with the other Drs to see what their opinion was on what would be best for Kearstin. I don't know when I will have an answer, I just pray it will be very soon.

Kearstin's week has been uneventful. She is still the same on the breathing issues (can't sit up for long periods of time without having trouble).

She has also been very sleepy all week for unknown reasons. Yesterday she slept the entire day, this worries me. But today she has been up the entire day so that made me very happy !

Kearstin received her RSV shot on Saturday. She did very well getting it. As a matter of a fact, she slept through the whole thing !! The nurse couldn't beleive it, she said she wishes all the babies she does was as good as Kearstin. She will be getting a shot a month until around April, lets hope she does as well with them as she did this time !!

I need to end Kearstin took a little cat nap, and she is now awake......

Thanks for checking in and for all of your unconditional love and support !! God Bless !!

Saturday, October 4, 2003 1:36 PM CDT

It is so hard to believe that Kearstin is ten months old today, at moments it seems as though I just had my beautiful little baby girl and at other times it seems as though it's been so long ago with all that she has had to endure in her short little life.

We went to Dupont on Thursday for the follow-up appointments with plastic surgery and neurology. The plastic surgeon spent a lot of time doing his examination of Kearstin's cleft palate (taking pictures) along with watching Kearstin's breathing issues. After the examination, he decided he wants to meet with Kearstin's lung specialist and her ENT Doctor to see what their opinions are of Kearstin's breathing issues. He feels as though Kearstin is at very high risks (with already having small airway), of having complications if he does the cleft palate surgery before fixing her airway issues first. He said that there are several options, but is leaning towards one and wants the other Doctor's opinions. He said the first one is a trach (that will be our last option), tieing her tongue to her lip (to help her lip from blocking her airway) or (this is what he would like to do) put extensions in her jaws (your tongue is attached to the back of your jaws) doing this would bring her tongue forward. He would have to cut her jaw bone on each side, put extensions in and put two screws on each side of her face. Each day after the surgery (in the hospital) they would tighten the screws and this will make her jaws longer. After all is said and done, her airway should no longer be an issue. She will have to fully recover from this surgery and then he would do the cleft palate repair. He said the cleft palate repair is a serious surgery for Kearstin and wants to eliminate anything that would cause her any further complications.

The neurologist appointment was just a follow-up appointment. He said that if Kearstin has any more "bad" seisures as she did on Tuesday, we will have to increase her medicines.

Kearstin's therapist (Jamie) is still sick. She was out of work all of last week, please pray that she is feeling better soon.

Kearstin is due to get her RSV shot tonight at home (they do them at home trying to avoid any contact with anyone that may be sick) please pray she doesn't get any side effects to this shot.

I hope everyone is having a wonderful weekend, God Bless !!

Monday, September 29, 2003 3:45 PM CDT

~~~~Tuesday Update at the bottom~~~~

Thanks to all of your prayers Kearstin is feeling better today :) I have had her sitting up in her bouncy chair a few times today, one time in her swing (she didn't tolerate this very long) and then in her high chair while I cooked supper. She is back to her normal of only being able to tolerate sitting for about an hour at at time, but it's better than not at all like yesterday.

Kearstin's therapist, Jamie, had to cancel her appointment with Kearstin today due to being sick...please pray she gets well soon and that she is completely well before she comes to the next visit...

Kearstin did part of her therapy on her own today !! I layed her on her back, she immediately rolled to her side and then on to her belly !!!!!! I missed her doing this so much and I was thrilled to see her do this again !! Then to top it all off she was still on her belly and she lifted her head up off the floor turning it back and forth by herself (she has ALWAYS needed assistance doing this) I layed on the floor next to her encouraging her to look towards her right (she favors her left side and won't turn to the right by herself) she turned her held towards me to the right the whole time with no help !! Okay at this point I am shouting with excitement and crying all at the same time....after about a half hour she was exhausted, I held her and told her how very proud Mommy was of her and can't wait to tell Daddy what a Big girl she was today. It took me awhile to stop the tears from falling down my face....and here they are again while I share the news with you ......

Thanks for all the prayers you have been sending to Kearstin, God is listening !!

~~~~Tuesday Evening~~~~

I don't have much to add to the journal today so I thought I would just leave yesterdays posted for those whom didn't have a chance to view it yet.

Last night after the exciting news that I posted Kearstin did something else to bring tears to our eyes.

I was in the bedroom doing housework while Ron was laying on the floor playing with Kearstin and he came to get me and said come here I have something to show you. He was smiling from ear to ear so I knew it was something to due with Kearstin. Kearstin was on her belly and Ron put her one leg up towards her belly and and his other hand on the foot lower down and she pushed her leg and SCOOTED !!!! She kept doing this for about fifteen minutes. Ron stopped and put her back on her back she rolled back on her belly (by herself) and started crying because she was "trying" to scoot herself and wasn't able to. So Ron continued working with her and as soon as he stopped she would cry ~~ she loved it !!!!! After awhile she got very tired and cried herself to sleep (in my arms of course :) Talk about PROUD parents, we couldn't of been more proud of her as we were at that very moment !!!

I also wanted to mention that I had an on-line smile quilt made for Kearstin. If you would like to see how beautiful it turned out please go to http://smilequilt.com/kearstin.html
I want to say a special thank you to Gloria who made the quilt possible !!!

Okay, I said at the beginning I didn't have much to add tonight ~~ sorry. Once I get started on Kearstin's accomplishments it's so hard to stop !!

Thanks for sharing our excitement with us !! God Bless !!

Sunday, September 28, 2003 6:42 PM CDT

HI !

I'm asking for special prayers for Kearstin tonight. She has been under the weather last night and all day today. She is more congested than normal and can't tolorate to even sit up minutes without gagging. She was running a slight fever but we did manage to get that under control. We know Kearstin isn't feeling well.......she doesn't have much pep and she is pale looking. Please pray that she isn't getting sick, the slightest cold could put her in the hospital. Thanks and God Bless !!

Thursday, September 25, 2003 12:20 AM CDT

HI !

I'm thankful that most of you survived the hurricane with minor problems. Many families were not as fortunate, I ask that you keep them in your prayers.

Kearstin is about the same since the last entry. She is still having days where she will sleep the day away (like today:( and others where she will be up alot more than usual.

I don't know if I mentioned this before, but she is absolutely against getting a bath.......she will not only cry but scream the entire time I am trying to give her one. It breaks my heart when the time comes for her to get it....but today I don't know what happened (I think she was very tired) but she didn't even whimper the entire time !! So needless to say I took my time and enjoyed her bath time with her :) Let's hope she is turning around and going to like them from now on!!

I have heard from Nicholas's Mommy yesterday (www.caringbridge.org/pa/nicholasreger) and she is having some very difficult days dealing with the passing of her little baby boy, if you wouldn't mind please continue to pray for her and her family that they along with Mykenzie's Mommy (www.caringbridge.org/nj/madden), Marybeth's Mommy (www.caringbridge.org/mi/marybeth), and Katie's Mommy (www.caringbridge.org/ct/papacoda)that they will be given some peace and comfort in the days ahead with the missing void in their lives. Some of them are continuing to keep us posted (on their child's website)on how their family is doing. I ask also that you would continue to read their journals and please add a message to let them know we are still supporting them, they need to know people not only care about the babies but as them as a family too !! Thanks :)

Well I need to run Kearstin just woke up and time is precious not knowing for how long she will be awake so I best spend the time with her while I have it !!

Thanks for checking in and God Bless !!

Friday, September 19, 2003 4:20 PM CDT

~~~~New pictures~~~~

HI everyone !

As I am writing this I am hoping that none of you were effected by the Isabel Hurricane these past couple of days. I am grateful to report that our family wasn't effected by the storm except for being without electric for about an hour. This was minor compared to many other families that have lost "everything".....please keep these families in your prayers. I just could not imagine what they are enduring this very moment.

Kearstin is about the same. She is still sleepy from all the medicines but seems to be easing up somewhat ?? She is still gagging quite a bit sitting up, this is still a problem for her after about an hour of sitting ??

Her newest accomplishment this past week is putting "one" hand up in the air to wave "HI", she is doing great at this !! I keep saying hi to her and waving my hand and she will put her left arm up and not wave yet but put it in the air and back down as to know she is saying hi too !!! I am SO PROUD of her !!

I have heard from both of my friends, Sarah (Katie's mommy) and Julie (Marybeth's mommy) both are doing as well as expected..please continue to keep them in your prayers ~~ thanks !!

I need to end Kearstin is gagging........

Tuesday, September 16, 2003 12:19 AM CDT

Good afternoon,
I haven't written in a few days because there hasn't been any big changes with Kearstin......

I have been in close contact with Kearstin's neurologist this week. We are trying to find the "right" dose of medication she needs to control these infantile spasms she is having. She is still having an average of two to four a day.( they are slowly diminishing) He has increased her medication once again, but sadly this makes her very tired. He also has decreased her seizure medicines hoping this will help with the drowsiness ?? I have to call him with an update on her condition on Thursday.

I pray that everyone will be safe and ready for the hurricane conditions we are expected to have in a few days. I will keep each of you in my prayers !!

Thanks and God Bless !!

Wednesday, September 10, 2003 8:19 PM CDT

Good evening,
For the "first" time in the past nine months I was eager to sign on to give you some "great" news..... Kearstin went to her cardiologist appointment this morning. She had an EKG and an echo cardiogram done. I am pleased to tell you that her left venticle is "growing !!" (we were fearful of this not happening and Kearstin needing further surgeries) but at this point everything looks great and working properly....she is due to go back in six months for a follow-up appointment and are hoping to receive the same great news :)

I am still asking that along with Kearstin you keep my friends and their families in your prayers...Katie Papacoda's family, Marybeth Kerr's family, Mykenzie Madden's family, and Nicholas Reger's family for they are grieving the loss of their children.

Also if you would continue to pray for Arianna Stull (she has multiple health issues and upcoming surgeries), Rebekah Nester & Jordan (they have their third stage surgery for their hearts coming up soon)and for Kearstin's inspiration friend, Meagan (the little girl that has all the same medical problems Kearstin has) that she will continue to thrive :)

All these people have become not just friends of ours, but also have a very special place in our hearts and feel more like family than friends......

Thanks for all the extra prayers they mean so much !! God Bless !!

Monday, September 8, 2003 7:52 AM CDT

~~~~Monday evening update at bottom~~~~

HI !

WE are off again to Dupont for another Drs Appointment. Today is a follow-up appointment with the lung specialist. Then Wednesday we follow-up with the heart Dr. Please keep Kearstin in your prayers that both are improving :)......

I will try to update when we get home, but as you already know this is usually an all day affair !!

Thanks and God Bless :)

~~~~Monday evening~~~~
I am happy to report this visit was much more comfortable for Kearstin than the one last week :) She did very well on the ride up (she slept the whole time) and on the ride back was awake but no gagging.....

This appointment with the lung specialist was just a check-up, he examined her and said that everything is about the same, he wants her to be pretty much homebound and limited visitors especially with the change of weather coming our way. He said that this winter is going to be rough on Kearstin if she gets sick... that the average cold is so much more to her (as we have already found out once before) she isn't going to be able to fight it off as easily as an average child her age....He also ordered for her to have a pulse ox machine at home so I can check her oxygen level and make sure she isn't in need of having the oxygen on ......her level today was okay but if she gets sick her oxygen level will go down and this will let us know she needs some extra help breathing. Please keep her in your prayers as you have been so kind in doing, your prayers and thoughtfulness have meant so much to us !! Thank you !!

Saturday, September 6, 2003 12:25 AM CDT

Hi !
I received Kearstin's new medicines this morning for her infantile spasms (I pray this will help) she has been having these spasms more frequently than she has been ?? Other than that Kearstin has been having some sleepy days, to where she will sleep all most the entire day away...this concerns us, but what doesn't anymore :) We are hoping it was just the nasty, rainy weather and not that something is causing this to happen !! (getting sick) Yesterday she had a better awake day and so far today she has been okay so maybe whatever it was is gone, we hope !!

I received more bad news today. Little Nicholas Reger, the little boy that I had been asking for prayers for that was recovering from his open heart surgery, past away yesterday. Nicholas is one of the last (Arianna is still fighting all her battles, please keep her in your prayers as well) of the families that we had gotten to know from Dupont. Katie,(www.caringbridge.org/ct/papacoda) Marybeth (www.caringbridge.org/mi/marybeth), Mykenzie (www.caringbridge.org/nj/madden) and now Nicholas's (www.caringbridge.org/pa/nicholasreger) passing is so hard to endure the thought of what each of these families are going through....I ask that they remain in your prayers that God will give each of them the strength to get through each new day. These families were once strangers to us, now they live in our hearts daily....

Wednesday, September 3, 2003 7:36 PM CDT

****Thursday update****

Nothing new with Kearstin, but please keep my friend Michelle (Mykenzie's mommy) in your prayers. Mykenzie passed away yesterday morning....this is the third baby that was in the hospital with Kearstin that we have gotton to know and love that has passed away....Please pray for each of these families for they are enduring the hardest situations of their lives !! Thank you !!



Hello !

Our trip to Dupont was loooooong !!! We left here at 10 am and never got back home until 7pm without stopping to even eat.

Kearstin's ride up there was horrible. Ron was sitting in the back with her and we had to pull over and switch because she was SO uncomforable, gagging and turning very red and having a hard time breathing. Ron couldn't stand to watch her like this and was getting so angry with how uncomfortable she was... (for some reason Kearstin can not sit up for long periods of time without gaging and feeling uncomfortable ?? )

Once we got to the Dr.Office ( the one for her seizures) she fell asleep and was fine ?? The Dr. told us he thinks she may be having infantile spasms and not seizures.....he sent us to the hospital for an EEG. This is a test that watches your brain activity. Kearstin was SO funny, the tech has to put many wires on Kearstin's head and each time she did Kearstin let her know she didn't like what she was doing !! She wasn't crying, she was making a "Mad" noise at her and all we could do is laugh !!! The tech said she thinks Kearstin is cussing her in baby talk !! It was just so cute !!! Then after the tech was finished she was fine and just looked around until she fell asleep. The test took an hour and a half. The doctor was to call me today with the test results.

After that we went to see the GI doctor, this was just a follow up appointment..... no problems. It's bad when the doctor asks you why are you here ?? Regardless, he said he was happy with her growth and there is no changes to be made. I asked him about the episodes of when she is in a upright position, he doesn't think it is reflux and thinks it more of a respirtory issue ??? Next Monday she is to be seen by the lung specialist so we'll see what he says !!!

Today the Dr. did call confirming the results of the EEG. Sadly to say she DOES have infantile spasms that we were praying she wouldn't have. These are very hard to control and if they aren't could be serious.......

Please continue to pray for Kearstin, if it isn't one thing with this poor baby it's always something else....I feel so terrible for her, when does the list of things wrong stop ???

Also if you don't mind saying extra prayers please continue to pray for my friends : Sarah (Katie's Mommy), Julie (Marybeth's mommy), Michelle (Mykenzie's mommy), Nicoloas (still recovering from open heart surgery), Arianna (is having multiple health issues) and last but least Meagan (the little girl I recently met that was born with almost all the birth defects Kearstin was born with) she is an inspiration to us she gives us hope....

Thanks for checking in and for all the prayers !! God Bless !!

Sunday, August 31, 2003 7:57 PM CDT

Hi !
I hope all is having a wonderful holiday weekend (regardless of all the rain)

I went to my first outting yesterday. I helped my sister cater a wedding.....I stayed to the reception for about an hour but in all honesty it was to hard to be around a crowd just yet. Everyone was asking about Kearstin and ones that I haven't seen since she was born was saying how sorry they were to hear about all her medical problems...I tried my hardest to stay strong but .......once I started feeling as though it was getting to much I knew it was time to leave. Besides, I missed my baby girl :).....

Nothing really new with Kearstin she is "still" having seizures, actually more than before ?? I have to call the doctor on Tuesday morning to see if he will need the EEG done ?? The increase in medicine isn't doing the trick !!

I heard from both Julie (Marybeth's mommy) and Sarah (Katie's mommy) they are both doing as well as to be expected...... it was great to hear from them, I think about them each and everyday wondering how they are doing ?? Please keep these dear families in your prayers !!

Mykenzie is doing better, she is still in the ICU but stable. And Nicholas is doing a little better as well so the prayers your sending out to them are working ~~~ Yea !!

Kearstin goes to Dupont on Tuesday for an appointment with Upper GI .......I will let you know when we get back how things went.....

I have finally met a woman that has a daughter with many birth defects as Kearstin.....I met her online. I have been talking to her about her little girl Meagan. She is seven now and a real cutie :).....it is so nice to talk to someone that truly knows what I am enduring, someone I have needed for the past nine months.....

Well, again I hope your enjoying your time off of work and time with your families.....

Thanks for checking in and God Bless :)

Wednesday, August 27, 2003 9:49 AM CDT

Good Morning !

Since I last wrote Kearstin has rolled on to her belly five more times !! Yea Kearstin !!! I'm so proud of you !! She is rolling from her back to her left side.....she doesn't roll to her right, yet that is !!! She is also doing much better head control everyday...the therapist was out this morning very pleased with how well she is doing. She made the comment that this time two weeks ago she never imagined her doing this well....alot of work, but it does pay off !!!

Mykenzie (my friend's baby) is improving little day by day. She has come along way, but still has a long road ahead. Along with Mykenzie there is another little baby boy, Nicholas that is two months old trying to recover from heart surgery as well. He is such a little cutie and his family is amazing, his kidneys aren't working as of yet and that is a big concern for this family. Please keep both of these little people in your prayers ~~ thanks so much !!

I haven't heard anything from Julie (Marybeth's mommy) I know her services are all this week. This family has been through so much it's so heartbreaking !! I still haven't heard from my other friend, Sarah (Katie's mommy) I pray she is doing well.....Please continue to pray for these families, I can't imagine the pain they are currently enduring with their losses.

Well I must end, I'm allowing Kearstin a break from therapy while I write to you but now it's time to go back to work !!!

More later.... God Bless !!

Sunday, August 24, 2003 12:23 AM CDT

Hi !
We are still trying to control Kearstin's seizures, but so far no luck. She is having an average of four to six a day. The doctor has increased her medication once again.....it may take awhile for her body to adjust to the new doses ??

Kearstin has been working very hard this past week, she is getting much better head control. I don't support her head at all now, I hold her back and belly and she raises her head and tries so hard to keep it in the middle. And now she is rolling from her back to her side much easier and puts alot of effort into trying to roll to her belly (she has managed to do this one time) she is very determined to accomplish this goal and I know soon she will with no problems !! Its amazing how hard she tries to do these things... I cry each time with so much pride in how far she has come !! I am so proud of her !!

My friend's baby (Mykenzie) is doing fair. (www.caringbridge.org/nj/madden) She has a long road to travel yet and isn't out of the woods, but so far she has come through the second stage of the heart surgery and is trying her best to recover...please say some extra prayers for her ~~ thanks !!

I haven't heard from Sarah (Katie's mommy) since her last update on Katie's webpage (www.caringbridge.org/ct/papacoda) but please continue to pray for them as they are enduring the loss of their precious little girl. Also please remember Julie and her family (Marybeth's mommy) the services of her passing is this coming week and they need as much support as they can recieve (www.caringbridge.org/mi/marybeth) ~~ thanks so much, I greatly appreciate all the prayers !!

Ron's parents are coming over for dinner and I'm not getting anything done being on here so I will be in touch soon !! God Bless !!

Thursday, August 21, 2003 7:44 PM CDT

Just when we think we have tough times !! My friend (Julie)that I have been asking you to pray for lost her daughter (Marybeth) today. I just can't imagine this happening to them once again. They lost two other children prior to losing Marybeth due to the same heart defect. Please keep this dear family in your prayers that God will give them the strength to get thru this difficult time once again. My heart is broken for this wonderful family !!

Also if you don't mind saying extra prayers, for my other friend Michelle, her daughter is having her second stage surgery tomorrow and with all the other children not being able to handle this procedure she is really scared please keep her daughter (Mykenzie) in your thoughts and prayers that she will be one to beat the odds !!

I am really not up to writing, but I wanted to ask for you to keep these families along with Sarah (lost her daugther last week) in your prayers that each of them will be able to get through such difficult days that lye ahead !! Thanks so much. God Bless !!

Wednesday, August 20, 2003 5:39 PM CDT

Good evening,
I haven't had the heart to write in sooner. My problems seem so small compared to what my friends are currently going through. As I mentioned in the past journals, Marybeth is one of the little girls that just had her second stage open heart surgery, she isn't doing very well and needs alot of prayers !! Please pray for her and her loving family. (www.caringbridge.org/mi/marybeth) I spoke to her Mom, (Julie) last night and was so shock to hear that she may not make it through the night !! After getting off the phone with her all I could do is cry, all I wanted to do was to hold Kearstin feeling so blessed to have her !! First my heart was broken for Sarah, losing her sweet little baby girl last Tuesday now this week it's Marybeth.....

Kearstin's doctor didn't call us today about her seizures...the increase in medication seems to be working. She did have one, but it's better than five to six !! I'm just praying it is going to take time for her body to adjust to the new dose of medicines ??

Kearstin's therapist came out early this morning. Kearstin wasn't a happy camper during her visit but JB (therapist) worked with her anyway. She was very impressed with Kearstin's head control getting much stronger. I am too !! She is really trying hard and has come a long way !! Good girl Kearstin we are so proud of you !!!

I just did more therapy with Kearstin and she was doing even better with holding her head up (this is a lot of work for her) so I am pretty excited !! I am going to try to catch a photo to share her big accomplishment with all of you as soon as I can....

Well thats all for now, Kearstin is sleeping (she gets tired out from all the hard work)....I will update again soon. Good night !!

Monday, August 18, 2003 12:38 AM CDT

~~~~~Tuesdays update at the bottom~~~~~

I want to thank you so much for the extra prayers that you have been saying for my friend Sarah (sweet little Katie's mommy) Katie's funeral went as well as could be expected I wasn't able to attend, but my heart was with them. I am still crushed about the whole situation and still can't believe this has really happened. I would appreciate it if you could keep Sarah and her family in your prayers, now that everything is finalized and everyone goes on with the everyday routines of life I am scared this is when the family is really going to have a difficult time dealing with the loss of their sweet baby girl. I think about them so often throughout my day and feel so saddened by it all.....

As far as my other friend's baby, Marybeth, she is doing much better than she has been. She isn't out of the woods as of yet, but she is slowly showing progress, we will take that !!

Now about Kearstin, our weekend wasn't at all the best. Kearstin has been having seizures all weekend and they have been coming more frequently. I called the doctor this morning and he increased her medication. This I am afraid will make her more drowsy, but there isn't any other soluation. I am praying that the cause of her having them is due to her gaining weight and getting older making her outgrow her dose ?? She is now 13lbs. !! Yes, she is still very small for her age, but she has come along way !! She hasn't been acting herself the past couple of days either. She has been sleeping like crazy and not as alert as she has been. Then while she is in a sleep, she whines alot as if she is in pain ?? This bothers me alot, not knowing what the cause of this could be ?? I know it isn't just baby dreams, it's much more than that. At times she really wakes up crying out of a deep sleep and it takes alot to console her ??

On a much better note, I called the hospital for the test results of the Cystic Fibrosis test and it was negative !!! Thank God !!! Ron and I really haven't had much discussion about this, we are just drained out from the fears of something else going wrong with our little girl and tried to not to dwell on it until we received the results but we were both so relieved of knowing she didn't have it !!! Now I can't but help to wonder why she has all of the symtoms and what could all this mean ??

Kearstin's therapist is on her way so I better end here please keep Kearstin and my friends in your prayers, they mean so much !! Thanks !! God Bless !!

~~~~~Tuesday~~~~~
I'm sad to say that today wasn't another good day for Kearstin, she has continued having seizures all day even after I contacted the doctor yesterday and he increased her dose of both seizure medications but sadly that didn't resolve the problem. I called again this afternoon and the on call doctor returned my call and increased her medication one more time and she said she would let Kearstin's doctor know the situation. She said that most likely her Dr. will want us to bring her to Dupont Hospital tomorrow for further testing (EEG test of her brain activity) to see what is going on ?? These seizures are nothing like the ones she has had in the past and are scary to us......please continue those much needed prayers. I will try to update you as soon as I can until then thanks so much for your prayers !!

Friday, August 15, 2003 10:33 AM CDT

I want to thank all of you that have shown concern and prayed for my friend that lost her daughter on Tuesday, it means alot to me. I have been having a hard time dealing with this situation, I can't seem to get my emotions together. I didn't know Sarah (Katie's mommy) until Kearstin and her daughter had their open heart surgeries at the same time, but we built a close bond in the short time I have known her. I feel so terrible for Katie's family, I know this is God's plan and he has a purpose for all of this. Please continue those much needed prayers for her family this weekend, Katie's funeral is Saturday.

Also if you don't mind along with all the other prayer request I am asking for, please keep another dear friend's baby in your prayers as well. Her name is Marybeth Kerr. She is recovering from her second open heart surgery as well and is having complications. This family has lost two other child due to this heart defect and I pray this time they are blessed to take their sweet little girl home with them where she belongs.

We still have no answers as for knowing if Kearstin has Cystic Fibrosis. I am waiting for the doctors to call me with the results and it may not even be until the first of the week, but I will be sure to let you know once we find out.

Kearstin had a very long day on Wednesday. She first had the sweat test done to check for Cystic Fibrosis, which she had to sit in a room that was 85 degrees and they put bands on both of her arms to gather the sweat for the test. She had to sit in this room for fourty-five minutes. Kearstin has no problem sweating, she sweats awlful with no help needed so this was somewhat uncomfortable for her. She cried alot, I had to walk her around to calm her down and finally she was exhausted from the long ride and from crying she fell asleep about twenty minutes into the test. From there we went to her next appointment to the ENT doctor, where they did an updated her test and found out the Kearstin has fluid built up in both ears. This means she needs to have tubes put in both ears,or she could develop hearing loss. They wanted to do this procedure the same time she has her cleft palate fixed so she isn't put asleep twice, but after visiting the plastic surgeon he said he doesn't feel comfortable operating on Kearstin until she is more stable, we have an appointment to see him back in a month and at that time if Kearstin stays out of the hospital and is gaining weight and no complications then he said he would give us a date. The ENT doctor is going to follow her thru the plastic surgeon and if two much time passes she said she has no choice but to have her get the tubes before her cleft is fixed and not at the same time.

Kearstin hasn't been feeling very well yesterday and so far today. She has been coughing alot and gagging more than her normal, we pray she isn't getting sick !! Going out of that hot room into the cold hospital on Wednesday and then out in the heat, in and out of the car didn't help matters but she had to have this done...... I have been giving her tylenol hoping that I can catch it if she is headed in that direction !!

Thanks for all the prayers you are sending Kearstin and my other two friends, I so much appreciate them !!

Tuesday, August 12, 2003 4:15 PM CDT

I'm sorry I haven't written in a few days....Kearstin hasn't been doing the greatest, but she is still home. Sunday Kearstin we believe was having seizures throughout the day, these seizures are different than her past history ?? This is so upsetting, she was seizure free since May 11 other than the breakthru she had coming off the ventilator... Then last night Kearstin's breathing was rapid and from time to time she stopped breathing, gasped for air and then started breathing again ?? Needless to say I was up all night watching her.......she goes to Dupont tomorrow for three appointments and to determine what to do about this situation, please pray this will just be a visit and not an admission !! Today she seemed to be breathing a little easier, and not having the seizures....Kearstin is having a test done tomorrow to determine if she may have Cystic Fibrosis....she has most of the symptoms of this disease. I found out today this test needed to be done. I won't have any results for up to three days, please pray she does not have this, it is a serious disease with no cure.

Today hasn't been a good day for me finding out about the possibility of Kearstin having something else wrong and a dear friend of mine that I meet when Kearstin was on the cardiac floor lost her daughter this morning. This beautiful little girl, Katie Papacoda, had two open heart surgeries and after the second surgery had complications that lead her to be taken away from her Mommy and Daddy....please keep this family in your prayers that they will have the strength to get through this difficult time in their lives ~~~ thank you !!

Tuesday, August 12, 2003 4:15 PM CDT

I'm sorry I haven't written in a few days....Kearstin hasn't been doing the greatest, but she is still home. Sunday Kearstin we believe was having seizures throughout the day, these seizures are different than her past history ?? This is so upsetting, she was seizure free since May 11 other than the breakthru she had coming off the ventilator... Then last night Kearstin's breathing was rapid and from time to time she stopped breathing, gasped for air and then started breathing again ?? Needless to say I was up all night watching her.......she goes to Dupont tomorrow for three appointments and to determine what to do about this situation, please pray this will just be a visit and not an admission !! Today she seemed to be breathing a little easier, and not having the seizures....Kearstin is having a test done tomorrow to determine if she may have Cystic Fibrosis....she has most of the symptoms of this disease. I found out today this test needed to be done. I won't have any results for up to three days, please pray she does not have this, it is a serious disease with no cure.

Today hasn't been a good day for me finding out about the possibility of Kearstin having something else wrong and a dear friend of mine that I meet when Kearstin was on the cardiac floor lost her daughter this morning. This beautiful little girl, Katie Papacoda, had two open heart surgeries and after the second surgery had complications that lead her to be taken away from her Mommy and Daddy....please keep this family in your prayers that they will have the strength to get through this difficult time in their lives ~~~ thank you !!

Thursday, August 7, 2003 4:52 PM CDT

I am very sorry I haven't had the time to keep you posted as often as liked the past week or so..... I'm glad to report Kearstin is home !!! We went home very late Tuesday evening. Our hospital stay this time was mostly alot of testing, finding nothing new except we did find out Kearstin has asthma. She is now getting treatments twice a day for this. Other than that she is still breathing heavy (they think it is a combination of asthma and reflux ?? ) As far as her crying out in pain, they are certain this is reflux as well even though the test she has had done shows no sign of reflux ?? She has also passed another blood clot yesterday in her stool......this makes me very nervous !! There must be a reason for this happening and how many more does she have ?? I know that blood clots travel and it scares me they may travel to an area they may cause her problems.... when they discharged us, they made alot of doctor appointments for her to be followed closely to be monitored to make sure she doesn't get any worse. Please pray that Kearstin is soon feeling better....she is still uncomfortable......I will update soon but right now Kearstin is awake and I need to do her therapy with her.....thanks and God Bless !!

Saturday, August 2, 2003 11:13 AM CDT

Good Morning,
It is the weekend and usually we just hang out until the first of the week to get any test or answers from the doctors of what step will be taken next ??

This morning Kearstin started coughing and gagging alot more than usual....I pray she isn't getting sick on top of everything else going on !! She was running another fever which doesn't help matters any !!

Besides that, her and I have been cuddling all morning (my favorite thing to do)sitting watching television and waiting for Daddy to come and visit with us.....we miss him !!

I hope everyone is enjoying your weekend. Please keep Kearstin in your prayers as always ~~ Thanks !!

Friday, August 1, 2003 12:14 AM CDT

Hello,
Nothing really new.....they are still running every test they know to run trying to figure out what is causing Kearstin to be uncomfortable but no luck just yet. She is still having periods when she gags alot (they are thinking it's reflux but can't pinpoint the soluation to it ??) They are trying other medications to see if changing those will make any difference ?? On Tuesday she is having an upper G-I test done to see if that may give them some answers ?? She is still having fevers up and down as well that they aren't sure what to make of those either ?? Last night her fever went as high as 102.5 and then went down after they gave her some tylenol ?? Also Kearstin is having periods where her upper body from her stomache to her head turns blood red with no explaination ?? They have no idea what this is about as well ?? Kearstin also has been seen by a blood specialist due to having a blood clot in her stools on Tuesday night ~~~~ still no answers !!! Kearstin is really making them work for their money this time so many different issues and no known reason for any of them ?? Well I must end, the doctors are once again in the room....

Wednesday, July 30, 2003 3:55 PM CDT

I'm very sorry I haven't had a chance to update in awhile......Kearstin is once again back in the hospital. She was admitted Monday morning..... the reason was being her respirtory status was very high (she was breathing heavy) she has been going through alot of testing to see why she is having breathing issues.....I don't know a whole lot at this point. I hope to update you as soon as I know more but right now I only have a minute, there are a number of doctors in and out of Kearstin's room and I don't want to miss any updated results of her testings.....until then would you please keep her in your prayers, thanks, God Bless.

Wednesday, July 23, 2003 7:20 PM CDT

I'm so sorry I haven't been able to update in awhile....I did update this very long journal last night and my computer shut down on me before I received conformation.....and I was to tired to rewrite everything again ~~~ sorry !!

Kearstin is doing fair. She isn't sleeping to well since the doctors changed her medication schedule on Friday. She is now sleeping alot during the day and up half the night ~~ not good !! So needless to say between being up giving her medicines and now her not sleeping, I'm exhausted.

Kearstin this past week, has discovered her face. Its so cute to watch her trying to suck her thumb.... this was so hard for her, but she is getting the hang of it :) I was able to capture a picture of her doing this to share it with you...

Kearstin is also full of baby talk, especially four am in the morning. I don't know if you have ever seen that tee-shirt for baby's with the low-go on it saying "party in my crib @ 4 am" well Kearstin sure has, I don't know what she is saying but she is none stop !! As tired as I am that time of morning, I just lye there treasuring every word !!
She also has gotton a bit of an attitude at times, she is firm on her cry and kicks her feet and throws her hands, as to tell me she is not at all happy, I don't like to see her upset, but to see her do this, it is so funny !!

Kearstin may not be able to do what the average child does at her age, but each day she touches my heart in a different way and as much as I thought I could love her no more than I already do, I somehow fall in love all over again with her..... she is such a sweet little girl that I wouldn't trade for nothing in this world !!!

I hope all is doing well ?? Good night, God Bless !!

Friday, July 18, 2003 5:28 PM CDT

Good Evening,

What a long day !! We had to get up 4:30 am (this isn't so easy when I get up every two hours to give medication to Kearstin) and we got off to start our day of doctor visits by 6:00 am We arrived home around 4:45 pm......

Kearstin's first appointment was with her neurologist, Dr. Bean. This was just a check up appointment to update him on her seizure activity. He was pleased to find out that other than the break through she had due to the withdraw of the ventilator medication, her seizures have been under control. He was also pleased to see Kearstin "active" which she was.... she was kicking her legs and trying to push him away from touching her while he was examining her.... she let him know by crying very loudly that she didn't want know parts of his examination !! Soon as he was finished and I picked her up she stopped crying and started cooing....Dr. Bean was glad to see that as well. He said today was the "best" he has ever seen her look !!! Yeah Kearstin ~~~ keep up the good work sweetie !!

The second appointment was with the eye doctor. She was actually pleased as well. She did her tracking test with Kearstin and Kearstin followed !! And she was pleased to see that when Kearstin followed the toys both eyes worked together. She said at this age there is no way of telling if Kearstin has vision impairment but from her exam and with Kearstin's eye control it's looking positive !!!! Yay, we were so nervous about the findings on her vision, although we aren't out of the woods, we did have some relief with the postive information.

Third we had to see the genetic doctor. This appointment was our longest. The doctor still hasn't been able to come up with an over all syndrome for Kearstin, with all of the birth defects she has. He stated again that it may be a one of a kind and may be called the "Kearstin syndrome" because it is very rare and they haven't found any match of anyone else every having all that is wrong with Kearstin. He went over basically everything about Kearstin's conditions up to date. And said he is still working on "trying" to figure out what Kearstin may have ?? He told us that if we were to have another child, he feels as though we would be fine. He says he couldn't completely rule out birth defects with a future child, but our chances are 2

Tuesday, July 15, 2003 12:55 AM CDT

Good afternoon,
Kearstin is napping, I don't know for how long she is starting to wiggle a bit ??

Yesterday Kearstin and I went to get her bloodwork done. This was the first time since she has been born that I rode a lone in the car with her. It was a short distance. Of course I was worried, her in the back by herself but she did great..... she was baby talking as I was driving. She was probably telling me to keep my eye on the road instead of her !!!

The past couple of days Kearstin has been crying and as soon as I hold her the tears turn off....Ron says I have her spoiled..... all she wants is her mommy. That's fine with me, I love being as close to her as she does with me....we have been through alot together !!

Kearstin has ANOTHER doctors appointment tomorrow. She has to see the GI doctor about her feeding tube. The medicinces are still not going in very well without giving me trouble ?? Also Kearstin is due for another set of shots ~~ouch !! Poor baby, she is constantly getting poked on !!

Thursday Kearstin's developmental worker is coming out to the house to update Kearstin's file for therapy. I pray they are soon able to come out to start her therapy, this is much needed !!

Friday Kearstin has three doctors appointments up Dupont. The first one starts at 8:30 am so we have to leave home around quarter after six !! And from past experience, it will be an all day trip !!! We usually never get home until late evening.... I will try to update you as soon as I get a chance on how Kearstin makes out....

Thanks for all the prayers and concerns so many of you have shown they are so much appreciated !!

Saturday, July 12, 2003 11:57 AM CDT

Good Afternoon,
Kearstin is napping so I thought I would give you a quick update and then try to clean up this house a bit....being away again for a month I feel like I have to start all over from top to bottom....

Today is Ron and I sixth anniversary ~~ boy how time flies by.... some days I feel as though I just met him and then somedays it feels as though it's been a lifetime :) Regardless, I am so grateful that God blessed me with such a wonderful person to share my life with !!

I was on the phone most of the day yesterday making appointments for Kearstin with all of the follow-up doctors she needs to see, my calendar is filling up very quickly !! After speaking to one of the doctors yesterday she wants Kearstin to have bloodwork done every two to three days due to potassium being so low and also the doctors are suppose to be having a meeting to figure out what to do about Kearstin's blood....I don't know if you remember reading awhile ago when Kearstin was hospitalized for her heart that they have to give Kearstin aspirin to maintain her blood level ? Well anyway, this seems to be more concerning to them now than before, she may have to been seen by a blood specialist for blood clots ??? I don't know what else could be wrong with this little girl's body ??

Kearstin didn't have a very good night, she was cranky. I couldn't settle her very easily, nothing was consoling her... today so far has been much the same. I don't think she is feeling very well, she is running another fever of 101.

I'm sorry to have to end here, Kearstin is waking.......I hope all have a wonderful day, God Bless !!

Friday, July 11, 2003 2:20 PM CDT

I am so sorry I haven't had a chance to write an update for days now...but the good news is we are home once again !! We arrived home midnight Tuesday evening. We would of been home ALOT sooner,but unfortunately when my brother and Ron came to get us our truck broke down on the way !!! The alternator went bad and needed to be replaced..... two days before Kearstin was released Ron called and told me that our home air conditioner went up and he had to call a service man in to get it fixed ~~~~ we just can't seem to catch a break !!! If it's not one thing it's always another !!

Being home with Kearstin this time has been a real challenge...the doctor told us when Kearstin was discharged that she is no means well and it may take a long period of time for her lungs to be healed. They advised us not to have company and not to take Kearstin anywhere except to her needed doctors appointments.... Kearstin is getting medication every one to two hours around clock( fourteen different ones) and breathing treatments. We have also been trying to control her fevers. She has a fever almost everyday and they are hard to keep under control. She is still having alot of diarrhea....

I'm sorry I must end here Kearstin is coughing and I need to suction her. I will try to update you again later.

Monday, July 7, 2003 2:31 PM CDT

Good afternoon,
As I mentioned in my last journal there is talk about discharing Kearstin.......well the doctor came in this morning and said he would discharge her tomorrow if her lung x-ray comes back okay ?? So far, she hasn't had an x-ray done so I don't know how things are going to go ?? Also, the GI doctor came up just a few minutes ago and and is also scheduling an xray to be done on her J/G tube to make sure the tube is in the right place because when we give her medications now she is gagging and she spits up some ??? So going home tomorrow ?? I really don't see it happening ?? I will keep you posted.....

Sunday, July 6, 2003 8:54 AM CDT

~~~~ Sunday evening update at the bottom ~~~~

Good Morning,

The lung specialist came in to check Kearstin this morning and said that he needs to meet with the other doctors about when Kearstin will be getting discharged. Discharged ?? I don't know if I feel comfortable with her condition to take her home ~~~ I don't want to go home to soon and end up right back here again. He said that how she is being treated here I can do at home, he made the statement I'm used to being her nurse anyway ??? He wants her to go home on oxygen (not what I wanted to hear) a pulse ox (machine used to montior how her oxygen level at all times) a nebulizer machine to give her breathing treatments every four hours and I have to learn how to do chest therapy to loosen up the junk in her lungs and then suction her secretions....... As much as I want her home is she really ready being she has to go home with all of this stuff ????? I feel like we are back at square one ?? Besides all of that she is still having diarrhea badly and just as of two days ago she is now vomiting her medication when it is given and the GI doctors are suppose to come up to make sure her J/G tube is in the correct place ??????? I'm confused and concern !!!! Please pray that the doctors aren't rushing things just a bit to soon and that if she is discharged she is ready to be .......Thanks, God Bless !!

~~~~ Sunday Evening ~~~~

Hello,

Had a moment while Kearstin is sleeping so I thought I would write alittle note. Kearstin's day was okay, not impressive..... She has been swollen today in her face because they changed the dose on her lasix (fluid medicine) and when they cut her doses of this certain medicine she ALWAYS seems to have this same problem....when she is swollen like this it is harder for her to breathe, she works so much harder ?? She has also been very tired today, she hasn't been awake much of the day at all....this is something else that concerns me somewhat ?? Maybe I'm reading into it to much, I'm hoping she is just having an off day ??

While she was sleeping I had to take back some clothes I bought her up here....she is growing out of everything. Not that she is putting on the weight she is getting long. So anything like sleepers that have closed feet, I had to take back.....She is now wearing six to nine months sleepers !!! She is actually in her right size for her age.....except for none feet outfits she still wears three to six months...some zero to three, depending on the make.

While I was at the store I picked up a few things for Christopher for back to school....I have to grab things when I have the chance. When I get home I am usually isolated from the world and don't get out other than to doctors visits....

Well, I guess I better end. Kearstin is squirmming (she knows when I am on the computer and doesn't like it )....good night. God Bless !!

Saturday, July 5, 2003 9:34 AM CDT

GOOD MORNING,

I HOPE ALL HAD A WONDERFUL AND SAFE 4TH OF JULY WEEKEND ??

KEARSTIN IS DOING ALITTLE BETTER TODAY. THEY HAVE BEEN TRYING TO WEAN HER OFF OF THE OXYGEN ALL WEEK BUT SHE HASN'T BEEN ABLE TO MANAGE WITH OUT THE EXTRA SUPPORT. SHE WAS CURRENTLY ON FOUR LITERS, NOW SHE IS DOWN TO ONE LITER ~~~WAY TO GO KEARSTIN !!! THIS IS A "BIG" ADJUSTMENT.... SHE IS ALSO DOING ALOT BETTER AS FAR AS GOING THROUGH THE TERRIBLE WITHDRAW SHE WAS ENDURING. SHE IS MUCH MORE PLEASANT TO BE AROUND :) I FELT SO SORRY FOR HER, NOTHING WAS WORKING TO HELP KEEP HER FROM CRYING...SHE IS ALMOST BACK TO HER NORMAL BEHAVIOR~~~THE SWEET LITTLE GIRL GOD GAVE US TO LOVE !!!!

RON WENT HOME EARLY THIS MORNING, HE IS HAVING A "GUYS" DAY OUT, HIM AND THE GUYS ARE GOING OUT ON THE BOAT WEIGHTBOARDING. HE FELT BAD LEAVING KEARSTIN AND I SINCE SHE IS STILL IN THE HOSPITAL BUT HE "NEEDS" TIME TO HIMSELF JUST TO RELAX AND HAVE FUN AWAY FROM "EVERYTHING"..... I REALLY HOPE HE ENJOYS HIS DAY ~~~ HE SO MUCH DESERVES IT !!!
IF IT WASN'T FOR HIS SUPPORT THROUGH ALL OF THIS WITH KEARSTIN I DON'T KNOW HOW I WOULD OF MANAGED...HE IS SUCH A STRONG PERSON THAT I TRUELY ADMIRE AND RESPECT WITH ALL OF MY HEART !! THANKS HONEY :)

WELL, KEARSTIN IS WANTING MY ADDENTION SO I GUESS SHE IS TELLING ME IT IS TIME TO GET OFF OF THE COMPUTER ~~ SORRY SHE IS THE BOSS !!!

HAVE A WONDERFUL DAY AND GOD BLESS !!

Friday, July 4, 2003 9:44 AM CDT

Happy Seven Month Birthday Kearstin !!!!

Yes, Kearstin is seven months old today ~~~~ sad to say she has been in the hospital all but seven weeks out of all these months....

There is not a lot to report about on Kearstin's health, she is still about the same. The doctor told me Thursday it could be awhile before she is well again because of the way her lungs are taking so long to improve ?? It will be another three weeks that she has been in the hospital tomorrow. The days are getting longer each day.....

Kearstin was having seizures again all this week due to all the stress she was having with the withdraw she is going through. It seems to be getting better but she still cries more than her normal and is very uncomfortable.

I hope all is having a wonderful and safe 4th of July.

Please continue to keep Kearstin in your prayers, we so much appreciate them !!

Monday, June 30, 2003 3:51 PM CDT

~~~~ Tuesday update at the bottom ~~~~

I am so sorry I haven't written but these past couple of days have been a nightmare ~~~~

First the good news, Kearstin is "OFF" the ventilator, she was able to come off of it Saturday ~~~ Praise God !!! She has been doing great as far as breathing on her own. She still has alot of secretions, and with her throat being raw (it has been bleeding) this makes Kearstin very uncomfortable...but we are hoping the less they have to suction her the better she will feel.

Now as far as the other issues, Kearstin is going through very bad withdraws of the drugs they used to sedate (help keep her alseep) her while she was on the ventilator. She was given this for two weeks and unfortunately, it may take up to two weeks for the withdraw of this drug leave her system ?? I pray not !!! This little girl HAS NEVER cried the way she has these past couple of days and NOTHING is helping ease the pain she is enduring !!!! I can not imagine a baby born to a mother that was a drug addict ~~~ It breaks my heart to see Kearstin like this !!! Kearstin was seizure free for almost two months until all this stress of the withdraw symptoms have started ~~~ now she is having them again !!!

Besides all that she is having extremely bad diarrhea and her little bottom is raw and sore ~~~ everytime I change her diaper it is no time before I have to turn around and change her again. This is caused by the antibiotics that she is on for her pneumonia. Her lungs are still very sick but improving slowly each day.....

I am sorry to end here but I really must get back to Kearstin, she finally fell asleep an hour ago (first sleep she has had in two days ) so I thought I would update you while I had a chance.

Please pray she soon gets some relief ~~~ she so much deserves some good news !!!

~~~~ Tuesday ~~~~

I don't have much to report for today, Kearstin still had a rough night last night...when I left her this morning at one am she was sleeping, I didn't want to leave her then but I was so exhausted....

Today she was a bit better than yesterday, she was still miserable at times but she managed to get a couple of quick naps ~~~ poor baby !!! She has been so restless these past three days, nothing I do seems to help ??? I pray this is over SOON !!!

Please keep her in your prayers that she will recover from this terrible withdraw !!! Thanks so much !! God Bless !!

Thursday, June 26, 2003 9:41 PM CDT

Good evening,
I'm sorry I haven't written in a few days, but I have been spending most of my time over to the hospital and then by the time I get back to the Ronald McDonald House I am to exhausted to even write in ~~~ sorry to keep you all waiting for the updates !!

There hasn't been much improvement, but I guess I need to just be thankful she isn't getting any worse.... The one thing they are really concerned about now is the high fevers she has been running. Again today they have been trying to fight off fevers of 103.5 !! To high !! They said these fevers are due to the newest bacteria infection she got from the IV line ?? They did run more test tonight just to make sure it isn't anything else causing this to happen, I pray not !!! She has more than her share going on already !! She also has had real bad diarrhea the past two days....due to the high fevers, one thing causes something else, where is the end of the tunnel ???? I hope we find it very soon !!!

Well, I am very tired, I don't get much sleep these days I just lye there wanting to be over with my baby....I miss her already and we just left !!

Goodnight, please continue those much needed prayers that are SO much APPRECIATED !! God Bless !!

Monday, June 23, 2003 5:40 PM CDT

~~~~Tuesday update at bottome ~~~~

I'm sorry I haven't written ~~~~ Kearstin hasn't been doing to well and I have been spending most of my time with her.... she is very uncomfortable and restless.

Besides the pneumonia that caused Kearstin to be hospitalized, she now has a secondary infection which may be double pneumonia ?? Or a collapsed right lung ?? The doctors are certain it is more a secondary pneumonia. As if that isn't bad enough, Kearstin has been getting fevers that are now being checked for "other" factors...the cultures have just been sent out so we won't know the results for a few days ?? Kearstin just can not catch a break !!!

Well I am really sorry to end here but I need to get back to the hospital, Kearstin's condition is worrying me !!

Please keep Kearstin in your prayers, they are much needed ~~thanks and God Bless !!

~~~~Tuesday ~~~~
Kearstin has not improved today, as a matter of fact on top of all that is going wrong they found out that she now has another infection coming from the IV in her leg.... They took the IV out and put it in her other leg. She is on more medicine to "try" to get rid of this new infection ~~~~ she is once again running a fever (103) due to this new bacteria.

All I can ask is to PLEASE keep her in your prayers continueously and if you don't mind please keep Ron and I in your prayers as well, each day is getting harder and harder seeing her suffering !!! Thanks and God Bless !!

Saturday, June 21, 2003 11:27 AM CDT

Hello ~~~

Sorry I didn't write in yesterday, I am still battling this cold and not really up to doing much other than being with Kearstin. I wish so much I could just cuddle with her in her bed and make her feel better...I go to the hospital, wear a mask and sit across the room so I don't get close enough to her for her to catch what I may have !! I don't even think she knows I am even there....

Kearstin "was" doing much better yesterday, they were weaning her rates down on the ventilator and she was able to tolorate that well ~~ they even said that by eight am they hope to have her off the ventilator, "but" around one am this morning she started breathing very fast and working so hard again and they had to go back to the rates to the beginning ~~~ Poor baby, I tell ya it just makes me so upset seeing her like this !!! She lyes there looks up at us with those "please help me eyes" and there is not a darn thing we can do to help her !! It just tares my heart in two !!

Please Pray that she can get some relief....I can't bare another day of her suffering ~~~thanks and God Bless !!

Thursday, June 19, 2003 3:46 PM CDT

I really don't have a lot to update as far as Kearstin's health. I wanted to write in because I know some of you are very faithful at checking in daily. The doctor tried to wean her ventilator rate again today and it caused Kearstin to be very uncomfortable so they had to put it back to the setting they had it at. The doctor said that he was hoping that today would be a good day to take the ventilator off of her but she isn't ready.......he said it could take a few more days or so ?? Meanwhile they are keeping her sleepy...so she can get enough rest to get stronger and be able to come off the ventilator with no problems ??

As far as my cold, I still don't feel 100 % but how can I complain when my little girl is lying in bed just trying to be able to breathe on her own ?? I just don't want to be away from my baby because I'm sick....I was able to visit with her today, I stayed my distance and wore a mask....the nurse said I would be fine to stay ?? I hope, I don't want to cause her to get more sick !!! She looks so helpless, and "very" sick. This is probably the worse she has ever looked !! I pray that she overcomes this very fast and is feeling up to going home where she belongs !!

Wednesday, June 18, 2003 9:22 AM CDT

Good Morning,

Kearstin is about the same, they have been trying to adjust the rates on the ventilator but she isn't quite ready for that yet. They have been keeping her sleepy so she isn't as restless. She woke up once yesterday looked at me and then went back to sleep. I feel so bad for her !!!!! I just cry thinking all that she has had and continues to endure in her short six months of life----it's not fair !!! I left her bedside last night earlier than I wanted to but I started coughing and my throat started hurting. As the night went on it only got worse, I had no sleep due to the cough. I called the nurse this morning and told her I wouldn't be over today until I knew I was feeling better. It breaks my heart not to be beside her......even though she is drugged and sleepy I still want to be there just incase she may wake up. I am probaly driving the nurse because I call over there often but this is the "first" day I have not been with her since she was born and it bothers me to no end. I went to the drug store to get cold/flu medicine to try to get rid of what ever I have ?? Please continue to pray for Kearstin to get well and come home and for me too that I soon feel better to be with my little girl again..... I miss her so much !!! Thanks and God Bless !!

Tuesday, June 17, 2003 8:45 AM CDT

I'm sad to report Kearstin is back in Dupont Hospital after only being home for three short weeks.....All day Saturday she was cranky and restless, I prayed she wasn't getting sick but I had the feeling she was headed in that direction and I was right. Saturday night around midnight we were having to suction her alot more than usual and she was getting congested. We took her to our local hospital. They put her on the monitors and called Dupont to come and get her, she was having trouble breathing. Dupont came to pick her up around 6am. We followed them up to Dupont where she was admitted for respirtory failure. She was taken to the ICU where they were giving her breathing treatments every two hours that shortly went to every hour. They were doing their best to try to avoid having to put her on the ventilator. They were taking alot of blood and xrays to run test to see what was going on and to make a long story short she once again has pnemmonia.....Sunday night at eleven they had to put Kearstin on the ventiltor, she was in trouble and "couldn't" breath on her own anymore. I was so upset to see her back on all those machines and tubes....knowing how long it took us the last time to get her off of the ventilator. The doctor said yesterday by the looks of her past history and the way her lungs look she may be on the ventilator for weeks or months ?????? I pray not !!!!! She is so uncomfortable. They have been trying to keep her sleeping but she is still so restless.

I will try my best to keep you posted if there are any changes.....

Please keep Kearstin in your prayers, she doesn't deserve to be enduring all of this pain.........

Saturday, June 14, 2003 8:05 PM CDT

Good evening and Happy Father's Day to all you wonderful fathers ~~~~~~

Ron's dad is HOME and doing well....he came home today. They unclogged his artery that was clogged in his neck yesterday and the doctors say he should feel 100etter.

Kearstin has been doing okay, but I think she may be getting sick ?? I have been keeping close tabs on her temperature; praying she isn't !!! She has been very cranky all day today (that is how she started the last time we ended up in the hospital) and she has been gagging & coughing more than her usual ??? Please keep her in your prayers !!

During her therapy workout today she held her head up several times....I was so proud of her !! She also put pressure on her legs again while I tried standing her up :) Her therapist haven't gotton back with me to let me know when they are going to start her therapy three times a week....I'm hoping it will start next week ??

It's time to get Kearstin's PJ's on and get her medication ready......Good Night and God Bless !!

Thursday, June 12, 2003 5:57 PM CDT

***Fridays update at bottom***

Hello,

Sorry I didn't write yesterday but we have had alot going on these past couple of days.

Ron's Dad is still in the hospital, he had another mild stroke. This makes two in less than two days. Ron took off work yesterday and spent the day up the hospital. They ran all kinds of test trying to find out what is causing these strokes. They are concerned because mild strokes can turn in to a major stroke. Today Ron's Mom called and said they finally knew the problem. They said it is a clogged artery in his neck. Tomorrow he has to have surgery to unclog the artery. We are hoping this was the problem ??

Last night after Ron came home from the hospital we took Kearstin to get her pictures taken in her Christening gown. She slept through the whole thing, but she looked so beautiful and peaceful....I can't wait to see them when they come in. I will be sure to post one or two on here so everyone can see. (and I can show her off) It felt so good to actually go out into the real world with her, besides to the doctors office. After taking her pictures we shopped in the store and bought her some new clothes (she is getting so big, she is outgrowing everything )......I don't mind clothes is my favorite thing to shop for anyway :)

Today I had to take her to the hospital to get bloodwork and xrays done of her heart. On our way I stopped by her Daddy's work to show her to everyone. They have been wanting to see the real thing (they have only seen pictures)
They were all excited and of course Ron was grinning ear to ear showing her off to everyone :) After we left we went and had her bloodwork and xrays done. They had a difficult time getting the blood. They poked her four times before getting it. They said after the third try that one more try and I would have to take her to Dupont because they werent have much luck. Finally they were successful. But everyone there knew who little miss popular was....they remember her from her benefit dinner that our friend held for her. They were pleased to be able to meet her. After we left there my son, Christopher was hungry. So we stopped by Arbys and we were sitting there and a couple beside us had asked me how old Kearstin was I told them and I was telling them she was small for her age because she has been through so much....then they asked if her last name was Milligan and sure enough they knew about her too !! She has touched many people's lives and doesn't even know it....I feel blessed.

Well, Kearstin is now napping and I need to throw some laundry in the washer....good night. God Bless.

Friday~~~~~~
I didn't want to change the journal just for a quick litte update but I needed to share this picture with all of you....she smiled !!!! I don't really know if it was a true smile or if she was getting ready to start crying but hey I'll take it !!!! I also forgot to mention in the journal yesterday that Kearstin is "trying" to rollover !!!! When she is lying on her back she rolls to her side !!! And sometimes after she rolls to her side she will cry, we think it is because she wants to roll completely over ?? I am so proud of her !!!!!

Tuesday, June 10, 2003 11:23 AM CDT

Hello,
Today wasn't off to a very good start....around 8:30am my sister-in-law called asking for me to call Ron at work to tell him that his Dad was rushed to the hospital due to waking up not being able to talk or walk very good. Ron is at the hospital now and I am waiting to find out how he is doing. The last update I was given was they were running test, they think he may of had a mild stroke ??

Kearstin's therapy evaluation was done this morning....four doctors came out occupational, physical, speech and an over all doctor. They each did their "testing" to see what she can and can not do. After each were finished they gave me an overall result. They were each impressed with how well she was doing. She isn't doing what a six month would, actually in all areas she is at a one month level, but she is "trying" and that is so important. They said she does need intense therapy, three times a week, due to being in the hospital for five months out of six. I was hoping that she would get at least that. The days she doesn't have a therapist coming in our home she will be going to the doctors,so there won't be much time for much of anything else, but it will all be worth it !! They also said that I have done a wonderful job with her, that they didn't expect her to be doing what she is...She isn't doing much, but what she is doing is a "big" accomplishment for her and I am SO VERY PROUD of her !!! I didn't know to be happy or cry after each gave their result, so I held strong until they left and then cried and thanked God for not so bad news. I am asking you for the continued prayers for Kearstin, I am praying that she overcomes everything and proves all the doctors wrong, she is so strong willed and tries so very hard !!

Well, Kearstin took a slight nap (I think it was just to fake everyone out so they would leave) it worked and now she is up :)

Thanks and God Bless !!

Monday, June 9, 2003 6:33 PM CDT

Hello :) Sorry it's been a few days since I have updated but what a busy weekend !! Friday, June 6 was Ron's (Kearstin's daddy) 40th birthday I felt so guilty but I didn't even have a chance to go and get him a present for his special day, but I know he understands. His Mom and Dad came over for icecream and cake...then Saturday my pastor came over to our house for a prayer meeting and to go over the details of Kearstin's Christening held on Sunday. After he left I was very busy going shopping for food and then coming home and making food for the dinner for after the Christening. The Christening went very nice. I was so nervous about taking her around so many people....her immune system isn't very strong and I just feared of her getting sick. So far so good, she hasn't pulled any new surprises yet....Today I have spent most of the day trying to take advantage of putting everything away while Kearstin was content or napping. This afternoon Kearstin and I took a short walk in her stoller (it was so hot I didn't take her far) She loves her stoller rides, I do too it gets my out of the house :) Tomorrow three doctors are coming to our house to evaluate her for therapy. I am hoping they agree to give her three or four times a week of therapy, she really needs it !! Well I need to finish cleaning while Kearstin is napping. God Bless !!

Wednesday, June 4, 2003 6:24 PM CDT

HAPPY SIX MONTH BIRTHDAY KEARSTIN !!!


What a big day, Kearstin is six months old today and has been home for TWO WEEKS today as well !! This is usually her limit of staying home, but I think she enjoys being here now ?? I sure hope so :) Kearstin had a very fussy day today, I'm not to sure why ?? I think it may be due to her shots on Monday ?? Or maybe with all the rain she just had a miserable day ?? I still haven't heard from the therapist as of yet. That is concerning to me. Kearstin needs her therapy as much as possible. I do all that I can, but I am limited to what to do next ?? One good report on that subject, today during her therapy workout she put pressure on her legs !! She was standing up and putting weight down on her legs. Something she never would do before. Yay Kearstin :) I was so proud of her !! I also started giving her freezer teethers during her speech therapy. She loved it !! I didn't think she would like it, because it is so cold. But she sucked and licked on it for awhile. Something new for her. Tonight after dinner I put Kearstin in her highchair for the first time, while I did dinner dishes. She looked so cute :) Well, it is time to get Kearstin's PJ's on....goodnight !! God Bless !!

Monday, June 2, 2003 8:21 PM CDT

Hello,
Sorry I haven't written before now but we had a lot of company over the weekend and then today Kearstin had another doctor's appointment. She has been doing okay. She has had a few restless nights lately, I'm not to sure why ?? I think it may be the reflux hurting ?? She will be in a deep sleep and wake up like something hurt her ?? Today was not a good day for her at the doctor's....she had three shots OUCH !! I don't know who they hurt worse me or her ?? I felt so bad for her, I cried. After about five minutes she calmed down and has been sleepy ever since. I have been keeping an eye on her tempature, there is a risk of running a high fever with these shots...I pray not !!! I really think she knows when I am on this computer updating...this is when she decides to wake up...sorry I will write more tomorrow. Good night, God Bless !!

Friday, May 30, 2003 6:45PM CDT

Hello,
What a beautiful day outside....it really felt like a summer day, it's about time. I thought we were going to skip over it this year :)

Being home is starting to feel like we are living in the real world again. Kearstin and I took advantage of the weather and took her "first" stroller ride down to the mailboxs today in our development. She loved it !! Me too :) I walked with pride down the street showing her off !! (although the only thing anyone saw was me pushing a stroller, I could of had a teddy bear in there and they would of never known the difference....but I did !! It was such a good feeling. I have my baby back !!!

We "finally" received our suction machine today, it is only eight days late but I called my friend Gloria (Kearstin's therapist) and she made a call and the next thing I knew they came an hour or two later, thanks Gloria !!

My plans for the weekend are going to be picking up my step-daughter, I really miss her. We haven't seen her in such a long time !! Then her and I are going Christening shopping for Kearstin's Christening next Sunday (June 8). She was suppose to be baptized the week she ended up back in the hospital...but she had other plans :) I have been trying my best to make her as happy as I can so she won't want to leave home anymore :)

Well, I better end here I haven't started dinner as of yet. I wanted to update before Kearstin wakes up. She has been up again all day today since 7 am and just fell asleep around 6:30 !! She was just moving around so I guess I better go and start dinner or we might not eat :)

Good night and God bless !!

Thursday, May 29, 2003 6:55 PM CDT

Hello,
Kearstin had her first "real" bath this morning :) She had her stiches taken out of her leg yesterday at the doctor's office, now she is able to get completely wet. She didn't really like it to much. At first all was going well and then shortly after, I think she realized something was different than she has ever felt and started crying until I took her out..... maybe after a few times she will realize it is a good feeling and like her bath time ?? I hope so, she looks so cute in her baby bath tub !! We still don't have the suction machine, so she is still uncomfortable at times when she can't cough strong enough it get it all up....I have been battling with the company everyday letting know how important having this machine is....sometimes she can catch her breath. They told me today it will be delivered tomorrow, we'll see ?? Other than that Kearstin had a good day, she is really learning to baby talk......she sounds so cute :) I just love hearing those beautiful sounds coming from her.... she is such a sweet little girl. She is starting to focus alot better now. She has looked at me more today than ever. She was also tracking her toys alot better today while I was doing her therapy with her. Right now she is napping, lately she has been trying to stay awake ALL day and crashing around dinner time....then she'll sleep until around nine and wake up put her jammies on and then shortly go back to sleep. Last night she had somewhat of another sleepless night due to trying to get the mucus out of her throat. I pray tonight she has a more peaceful night. Well, I am going to take advantage of my time while she is sleeping and try to catch up on somethings around here.....Good night, God Bless!!

Wednesday, May 28, 2003 11:46 AM CDT

Hello !! Sorry I haven't written in a few days....being home is great but I can't find enough time to get everything done !! I have been having a lot of company almost everyday....between doctor's appointments. Speaking of which Kearstin had one of those just this morning in Dover. To the heart doctor. He said everything looks and sounds good (she had an eeg done) and he still wants to keep a close eye on her. We go back in two weeks. Yesterday the terapist came out to evaluate her...she couldn't believe how big she got !! The last time she saw her she was only 2 1/2 months. WE are hoping to be able to get therapy three to four times a week to get Kearstin doing things she should for her age....Kearstin is actually doing better than what she thought she would for lying in the hospital five months out of six....she commented on the therapy I have been doing with her own my own. She feels as though Kearstin has alot of potiental...it will take alot of time and hard work but she'll get there !! I have seen a big change in her just since we have been home...I'm so proud of her !! Just like yesterday when I was doing her therapy she grab a toy with both hands.....I cried for a half an hour.....each little accomplishment means so much to me !! Like today in the doctors office she was cooing like a baby does.... to me that was one of the most beautiful sounds in the world !! Well I'm sorry to end here but Kearstin is on my lap as I write this, holding my one hand so you can imagine how time consuming that is....we need to do her therapy and then down for her nap :)
***new pictures****

Sunday, May 25, 2003 1:36 PM CDT

Good afternoon,
Kearstin is napping so I thought I would take advantage of that and update. The past couple of days Kearstin hasn't been feeling all that great.....at night is the worse. I was hoping that it was just the change in the air she was just trying to get used to ?? But I believe she has gotton a cold ?? The past two nights she hasn't had much sleep and when she does she is restless. Last night was a little better, we put a humidifier on in the room to loosen up the cold or what ever it may be ?? It did seem to help. I have also been giving her tylenol around the clock.... I want to get a jump start on what ever it may be !! During the day I have been doing therapy with her...she doesn't want much to due with it. I'm hoping it is just because she is alittle under the weather.....One of the therapy exercises she needs to do is to stick out her tongue to use her mouth muscules so she can one day soon smile, I can't wait !! I enclosed a picture so you could see her big accomplishment :) Trying to get that picture took me a whole roll of film, but I finally got it !! I have loved having Kearstin home .....alittle scary, not much sleep but still love every minute !! I'm hoping she will thrive now that she is home. We have had lots of company, which is great to finally see everyone. I missed them so much. Ron is at his Dad's birthday party today. I didn't want to chance taking Kearstin out already, I want her to get stronger before risking to many germs around her. Christopher is taking advantage making up lost time with his friends....I don't think I see him other than to eat or sleep !! I'm sorry to end here, Kearstin just woke up crying...

Friday, May 23, 2003 8:38 PM CDT

We are finally "HOME" !!!! I am sorry for not writting for a few days but as you can imagine we have been very busy. We left to come home Wednesday. My brother Bill and Ron to pick us up. I thought we would be leaving early that morning but it wasn't until 3:30 that afternoon. After living there for three months what is an extra few hours ?? Kearstin had a IV in her leg that went to a main artery so they had to put her to sleep and put a few stiches in her leg. They had to watch her for a few hours after the procedure. After that we said our good byes. What an emotional time that was....we were excited, happy and crying all at the same time. The nurses were even crying....they didn't think they would see the day Kearstin would go HOME !!! They kept telling me what a true miracle I have.... that she is !! God gave her to me for a reason, so far she has proven everyone wrong, and I pray she continues on that path !!! The day we left it rained all day, I know most of you are "tired" of the rain, but when my Mom passed when I was fifteen I decicated a song to her "Tears in the floor of Heaven" and each time something good happens in my life and it rains I know that is a sign of her presence with me.....I know in my heart she is one of Kearstin's gaurdian Angels......Thanks Mom !! We arrived home around 5:30 Ron had to rush out to go pick up all Kearstin's procreptions (eight) and I had to get Kearstin settled but as you can tell from the top photo, it wasn't all that hard :) Shortly after we got home a few of my family members couldn't wait to visit Kearstin....they stayed until around 10 pm... the first night home felt great to be in our house as a family once again. Then the next morning we had more company. Ron's parents came over to see Kearstin. They haven't seen her since we left. They couldn't keep their eyes off of her. They couldn't believe how big she had gotton !! They stayed until it was time to leave to go to the peditrician....one day home and off the the doctor's already !! Kearstin wasn't a happy camper. I think she just wanted to stay home for at least a day :) All we did was update her on all Kearstin's medications and weight. She has to go back a week from Monday to start her shots..ouch !! Once we got home we had more company....until late last night. Today I finally had a chance to clean up "alittle", while Kearstin was napping. I think it will take me a year to catch up. Today was Kearstin's first full day at home. We had a lot of fun. I layed her on our bed this morning. Ron and I just layed there admiring her. Then I gave her her bath, that she didn't want no parts of ....she was in her swing, in her bounce seat, on the floor with her activity gym.... after lunch I went up town to get some groceries. I don't know how Ron didn't waste down to nothing....there was no food in this house. Kearstin slept the whole time I was gone and woke back up just as I got home :) we played alittle more...well now it is time to get her night clothes on and head to bed. I believe I am having more company tomorrow..... please continue those prayers you have been faithful to give to Kearstin....she has proven they are being answered !!! Thanks and God Bless !!!

Tuesday, May 20, 2003 9:02 PM CDT

Good evening...
I wasn't going to update this journal until all was said and done because everytime I brag, something takes that excitement away.....But, I know each of you that faithfully check Kearstin's website is wondering what is going on...Well, this morning the nurse came in and to my surprise she said it looks like we are leaving to go home tomorrow !! Tomorrow ?? I just looked at her and asked her to repeat what she said because I thought I heard her say we were actually going home ?? Well, what she said was what is in the plan !! Today has been a very busy day. Alot of nurses, doctors and phone calls all day....getting me "prepared"....today was a very emotional day. I cried most of the day out of happiness and fear.... I can't believe the day is actually here. Besides that exciting news, I have more !! Last night Kearstin's nurse started weaning Kearstin off her oxygen...she stayed off for two and a half hours straight with no problem. They didn't want her off all night when they are just trying it...so this morning they took her off again at eight am and I am happy to report she is "still" off !!! I am SO PROUD of her....I just pray she remains off of it !! Well, I am sorry to end here but as you can imagine I have alot of packing to do,
We are moving back home !!! Thanks for all your prayers, and please continue those much needed prayers, Kearstin has come a long way, but she still has a bumpy road ahead of her. Thanks and God Bless !!!
****New pictures of Kearstin "OFF" oxygen****

Sunday, May 18, 2003 5:15 PM CDT

******Monday update at bottom******

It never fails, as soon as some good news comes along....set backs always seem to follow ?? I didn't write yesterday, I am sorry, but Kearstin had a rough day as well night. As I wrote on Friday she was getting sick, throwing up green bile....she continued but got worse. The GI doctor was called, they decided to put a bag to catch what was coming out so they could measure it. If the volume was greater than six ounces in twenty four hours then there was a problem. Sadly to report her volume was more than the allowable six ounces in twelve hours !! As the night went on yesterday the volume got worse, she was refluxing formula as well as her medication. They stopped the bag this morning because she was losing everything that was going in......Today the GI doctors came to see her again, to see what the next step would be. Not what I wanted to hear. There could be a number of things going on. One thing they are thinking is that the tube is still not in the right place, but in the same respect they put the tube as far as it would go down. If the tube is not down far enough this means there may be some sort of blockage ??? Could be malrotation again !!! I pray not....she had surgery for this when she was two weeks old. I pray she doesn't need another surgery !!!! The doctors too are trying to avoid any surgeries.....Kearstin has already been through too much !! Tomorrow they are thinking about doing a upper GI test to see how her system is working, if there may be a blockage or if her bals are not working like they should?? She does have trouble going to the bathroom by herself, this was one of my concerns for awhile now, but they keep reassuring me it was okay ?? So as far as coming home, it's left the picuture.....Please pray that this little girl gets a break that she so much deserves !!! Thanks and God Bless !!

Monday @ 7pm :
I don't have to much to report on....we are still waiting for test results to come back to see if Kearstin has a blockage or if something else may be causing the reflux issues ?? She seemed comfortable most of the day except the times she was getting sick (four times as of now) she is resting now, taking her evening nap, she will wake back up around 9ish...stay up to about midnight. She has her own schedule, she's already the boss :) but that's okay with me !! I will try to update as soon as I know something futher. Thanks and God Bless !!

Friday, May 16, 2003 12:07 AM CDT

The other day I wrote in the journal that I had hopes to be able to write an encouraging update soon verses the findings of something else going wrong with Kearstin's health. Well today is the day, I am writing the best news I have received in two and a half months... We are coming "HOME" !!!! As I wrote those words, tears are falling down my face.....it's been such a hard, emotional journey this time. They said if everything goes well over the weekend that would could be leaving Monday or Tuesday !!! I am excited and scared half to death all at the same time, but with all your continued prayers I know we will be okay. I will continue to keep this web page going so you can still keep close tabs on Kearstin's progress....

Please continue those much needed prayers. Again thanks so much for everything, we couldnt of made it this far without you !! God Bless !!

Friday night update .....
Again sorry for the short update earlier, Kearstin woke up crying and I needed to tend to her. Today wasn't a good day for her. She was getting sick again, throwing up that yucky green bile junk again. And the new tube that was placed on Tuesday has been leaking some nasty stuff from it as well. They ended up calling a GI doctor to come and look it over. The GI doctor had to adjust the tube again..this really hurt Kearstin. Then there was also some skin growing around the site that she had to remove---ouch !!!! Kearstin is such an amazing little girl, she has been through so much and still remains so strong :) Then the doctor that I have been waiting to come and check her "dimple" came in to night and reassured me that yes, it's only a dimple and not to worry. Thank God !!! I also asked about the blood disorder and he said they are keeping an extra close eye on the blood platelets but right now it is not to concerning !! Today is a day I have needed for such a long time.....a day full of blessings !!

Thursday, May 15, 2003 11:19 AM CDT

Sorry about my message yesterday, I don't mean to burden anyone with the pain I have been enduring. I "try" so hard to remain strong for Kearstin, but in all honesty this is the far most painful situation I have EVER had to experience. With the support of all you and my faith, I will get through. Somedays are just so much harder than others. Anyway, Kearstin had a better night last night, she didn't get sick at all. I am hoping that the medication is starting to work and helps relieve the pain she has due to refluxing the contents in her stomache ?? She woke up crying really hard around three am and I consoled her and she went back to sleep... the nurse said she may of had reflux, it burned although it didn't come completely up ?? But other than that she did a lot better than the night before. Today she woke up around 8:30, had her therapy around 10:30, and then I gave her a relaxing bath after all the "hard work" I am so proud of her, she may not do much but she "really tries" and that's all that matters. In time I know she will do a lot more !! I better end here, I thought she was napping it's only been fifteen minutes since I layed her down, but she is wide awake again..I don't mind I love when she is up !!! Thanks and God Bless !!

Thursday evening...6:45 p.m.
Sorry I had to go so quickly earlier but as I said my little angel didn't sleep very long. Actually she just did fall asleep fifteen minutes ago !! Other than that short nap for fifteen minutes she has been up ALL day :) She was alittle cranky due to being over tired but alittle over an hour of that she stayed awake very alert and just content listening to her music (she loves music) Today, Kearstin's nurse came in and told me that this weekend they want me to act like they are not here and that I am home....they want to prepare me for when I go home. They want the reassurance that I feel comfortable. I do basically everything now other than give the medication and weigh her each night. So no big change :) But that's okay, if they are wanting me to do "everything" I believe it's a step closer to "HOME" !!! I can't wait !! It has been a VERY LONG ten weeks !! Yes, I am going to nervous but when aren't I ?? This little girl keeps me on my toes:) Well I will end here, while Kearstin is snoozing I think I'll go and grab a hot shower. Good night, God Bless !!

Wednesday, May 14, 2003 1:33 PM CDT

I don't know when I am going to be able to sit down to write this journal and be able to give good news ?? Kearstin had a rough night last night, throwing up and being very uncomfortable. I thought the procedure she had yesterday would of solved all this ?? But they say not. Now instead of spitting up formula, it's now green bile in her stomache. When this comes up it burns and gets her so upset.... I finally got her settled around 2:30 this morning. She has gotton sick three more times already today so they are going to "try" a medication to try to coat her stomache and get the bile out of her stomache faster ?? Then on top of everything else, Kearstin has a dimple on her back at the end of her tail bone that I have been concerned about. When she was first born they said it all it was was a dimple and now that I have questioned it once again, just for reassurance, they are not sure it's just a dimple ??? I am so nervous again !!! The one major thing that it could be that I have great fears about is spina bifida..... a doctor is suppose to come and examine her to see if further test will be needed or if he feels as though it is only a dimple ?? But from the doctor and nurses expressions and the way they have responded after looking at it gives me great concerns. I don't know what is "not" wrong with this baby ??? She has so many things wrong, it's just not fair !!!!

Tuesday, May 13, 2003 6:30 PM CDT

Sorry it has taken me until now to update, but I haven't had a chance until now. Kearstin had her J-tube procedure today as scheduled. There were a few complications...the tube they first put in didn't work so they ended up having to take it out and use another kind of tube. Then it didn't work either so they finally decided that they would take out her g-tube she currently had and replace the whole thing with a completely different system. Her stomache is tied off now, nothing other than acid will be in it. She has to be on medication for the burning caused from the acid. Over all she was a champ, when she finally came back to my room she was sleepy. And then woke up for a couple of hours, I held her until they had to take her back down to the lab again. The x-ray they did didn't show the tube in the right place so they had to check and make sure everything was okay. She got back in my room again around 6:30 and is again sleeping. This really took a toll on her....but hopefully she will feel alot better without the reflux issues !! They haven't started her feeds back up yet, she hasn't had anything other than IV fluids since 7:30 this morning. She must be starving... I am glad that this procedure is over with, I was really worried. This poor baby has really had her share of medical problems. I pray the worst is behind her, and that she can start to enjoy being a baby instead of enduring pain all the time. Please continue to keep her in your prayers, I greatly appreciate them so much !! Thanks and God Bless !!

Monday, May 12, 2003 3:50 PM CDT

Hello, this morning after the doctor's had their rounds (where they all have a meeting on each child) it was brought to me that they have decided that Kearstin is going to need a J-tube placed in her belly. This will hopefully solve her reflux issues ?? Then the hit me with another wammy.....Kearstin needs to be seen by a blood specialist, she may have a blood disorder !! Her blood platelets have been to high and they need to find out why. They said that if this is ignored that she could get blood clots....and cause futher problems for her. So needless to say today was not another good day, but which ones are anymore ?? Everyday seems like we get hit with something else !! So all day today I have been waiting to find out when this procedure is going to happen. They told me that it would be today, the sooner the better to try to get all this under control. Finally at 3:00 they came and told me her scheduled time would be at 4:30. So we got all ready, went down to have it done and they told us that we would have to postpone it until tomorrow at 11:30 am due to an emergency that came in and they don't do surgeries after 5:00pm so that is where we stand.....please pray that this works and makes her more comfortable. It breaks my heart to know she has to have something else done !! When is she going to get a break ?? I will update you as soon as I get a chance. Thanks and God Bless.

Sunday, May 11, 2003 3:54 PM CDT

Happy Mother's Day to all the special Mother's reading this !!

My mother's day was really nice. My husband took me out to dinner last night at my favorite restrauant (Red Lobster). Christopher my son, brought me a surprise up with him ( a goodie bag filled with bath items shower gel, lotion,ect.)....he gave that to me yesterday (he can't hold on to surprises :) then today he went down to the gift shop and bought me a vase filled with candy and it has a mother's day balloon on top, very cute) he bought this with his own money. He is such a thoughtful young man :) Later in the afternoon my two sisters and one neice came up to visit and brought me additional gifts....just them coming meant so much. They too are mothers and they chose to share their day with me !! After they left we had the chance to take Kearstin on a ride in a wagon around the unit ....first time she really did any baby fun activity :) We all were so excited !! Then our nurse did a hand and foot print of Kearstin...for my Mother's day present. I will cherish that forever !! We had a nice eventful day, now our little angel is pooped out and resting. Daddy and Chris went home and I couldn't wait to share my day with all of you. I put new pictures of my "first" Mother's day events on here to share...I hope you enjoy :) God Bless !!

Sunday evening update :

As I mentioned in the past, it's so hard to get excited when Kearstin has a good day because something bad usually follows. Well, needless to say today was no exception. After I updated about how wonderful our day went, Kearstin was very cranky and was having her usual cranky hour...I was doing everything I knew to console her but nothing was working. I don't know if she was trying to prepare me for the next moment or not but I was holding her in my arms and she totally stopped breathing !!!! I tried doing everything I could to get her to respond but nothing. I immediately went to the door and called the nurses in. They couldn't get her to respond either, they had to "give" her breaths....the doctor was called in to help. She was turning bluer and bluer as time went on. They got her to breath on her own after about two minutes and then she had a seizure due to the stress. I was so scared!! This whole sitution just brought back memories of when I had to do CPR at home on her. I am still shaking and it has been an hour and a half ago. Please pray for her.....if it's not one thing, it's another !!

Saturday, May 10, 2003 9:27 AM CDT

Good morning,
Nothing really new to report...Kearstin is still being tested for reflux. I won't know the results until most likely Monday or even Tuesday ?? She had a really good night last night, only got sick a couple of times. She slept great, all night until about five am and then I changed her, changed her position and she went right back to sleep. I actually woke her up to do her therapy with her..she was half asleep so you know how good of a work out she got :) now she is sleeping again !! I am worried she is sleeping to much, I asked the nurse and she said don't worry babies sometimes have really sleepy days.... but I want to play :) her therapy workouts are going great, she is really trying !! The more we do the better she gets !! The therapist comes once a day thru the week and then I do what they do two other times throughout the day....I am going to try to work on some laundry while my little pumpkin is sleeping. I hope everyone has a good day, God Bless.

Thursday, May 8, 2003 4:27 PM CDT

Hi everyone,

As soon as those words "HOME" are mentioned something else happens to take those words out of the picture. As I mentioned yesterday Kearstin is having some reflux issues. All day today and some more last night the reflux has been getting worse. The GI doctors were called today and they paid a visit and confirmed from what we had told them has been happening that yes, most likely it is reflux. Now how do we solve it ?? The GI doctor automatically suggested putting in a fundo. This requires surgery and once again being put on a ventilator. I told them I couldn't allow this, after all that we had just been through to get her off the vertilator I can't take those risks. I know if this is the only way I have no choice, but as soon as I wouldn't agree to have this procedure done they came up with doing a twenty four hour reflux test (starting tomorrow) to determine how bad the reflux really is , this will determine the next step. He said if the test comes back that something has to be done then he suggest that another tube (besides the g-tube she already has for feeding) would have to be put in her stomache to try to avoid any reflux from occuring ??? This is an outpatient procedure that will be done while she is here, I am assuming Monday or Tuesday ?? She has to be put to sleep for this and they said she will be very uncomfortable for a few days until it heals.... I just don't understand why she has to keep going through so much !?!? It breaks my heart that she continues having problem after problem and never seems to get ahead !!!! Please pray that this works, I can't bare seeing this precious child in such uncomfort all the time. Thanks and God Bless.

Wednesday, May 7, 2003 1:30 PM CDT

Hello, sorry for not updating yesterday. It's been another emotional rollorcoaster lately. As I mentioned in the last journal they were once again talking about putting in a trach. The doctors had a group meeting, and decided that it wouldn't be in Kearstin's best interest at (this time) do put in a trach. Our prayers once again answered !! They said that they are trying their best do avoid another operation and trying to resolve this issue in other ways. They have decided to try positioning Kearstin flat on her back or side. They said they don't normally want babies flat that have reflux, but it's a no win situation.... she needs to be able to breathe and not struggle. After repositioning, Kearstin seemed to do well, that was up until last night. She was up from 12:30 am until 6am due to reflux...everytime she got sick, it hurt her and she couldn't calm herself down. I spent most of the night rocking her back to sleep...as tired as I was, I enjoyed the quailty time with her.She woke up around 9:30 this morning and has been up until 3:30....she is now resting !! She was SO tired today due to not sleeping well last night. She was so tired she couldn't fall asleep. I really hope this nap will take the edge off.... They have spoken the past couple of days about when to we would be going "HOME" but they said they need to first make sure she is out of danger with her breathing and is it going to be "safe" ?? Please pray that Kearstin will turn around once again, we really miss home...it will be nine weeks Thursday !! Thanks again for all the prayers...

Sunday, May 4, 2003 1:51 PM CDT

****Happy fifth month birthday-- Kearstin !! ****

Good afternoon,
For those of you who went to Kearstin's benefit dinner, I can't put into words how much your support has meant us !! Thank you from the bottom of our hearts !! Having a child go through as much as Kearstin has had to endure already in her short life, is one of the most heartbreaking, painful situations we have ever had to experience. Having all the support, kindness,love,and most importantly prayers each of you have expressed through all of this is a reflection of God's work shining down on Kearstin !! Without God, I don't believe Kearstin would have made it this far, with God, Kearstin has overcome more than the doctor's ever thought she could !! I'm not willing to give up on the miracle that is performing through her....no matter what happens she will ALWAYS be our "little miracle child". Thanks again, God Bless !!

Monday Morning.....
My family and friends called me last night to tell me how well the benefit dinner turned out. Thanks again to each and everyone of you, without your support it wouldn't of been possible !! Just knowing so many of you were there in honor of Kearstin, showing your support brings tears in my eyes just thinking about it !! I can't wait to see the pictures and videos that many were so nice to take....Thanks again you will never know how much all this was so much APPRECIATED !! God Bless !!

Kearstin is once again not doing the best.... as I write you this update I am waiting for the doctors to come in and talk to me about the plan for her. There was talk AGAIN about her needing a trach....She is still have some breathing issues, and needs to be suckshoned a couple of times a day. Then her one doctor came in to see her this morning (the one that controls her seizure activity) and said from his stand point she is being released by him to go home. He knows that she will have seizures, but staying at the hospital isn't going to change that, it's a matter of keeping her levels up on her medication to try to maintain them. Then he mentioned that she still is having issues with her heart and lungs....not that I am aware of !!! I was upset when he mentioned that, not knowing a thing about it. So now he is going to have a meeting with all the other doctors to see what is going on ?? Please pray, please pray her heart and lungs aren't an issue and that the trach isn't going to be an issue either !! This whole situation is so HARD, as soon as I think things for her are coming around something else knocks us down again !!!

Friday, May 2, 2003 3:49 PM CDT

Boy, having Kearstin in my room sure does pass the time by.... and I am enjoying every minute of it !! She is sleeping at the moment so I thought I best update while she is resting. Last night she continue to have a good night. She woke up from her nap from 3pm til around 6pm and stayed awake until 12:30am !! She is making up for all that sleep she has done in the past !! Today she woke up around 8:30am (this seems to be her schedule ?? ) and therapy came in around 9:15 and did their little exercises with her until she said enough is enough I am going to sleep !! And I don't know if she was faking, but honest to God as SOON as they walked out the door her little eyes opened up and she was just as bright eyed as could be !! She stayed up until around 1pm and started getting tired, but she tried so hard to fight it off... she lasted until 4pm and now she is snoozing... I took some more pictures......they should be on here by now (sometimes it takes awhile for them to go through ??)

For those of you going to Kearstin's benefit dinner this coming Sunday, there is no words to describe how much we greatly appreciate all the love, support, and prayers given to us in this difficult time in our lives. Thank you so much and God Bless !!

Thursday, May 1, 2003 5:58 PM CDT

What a wonderful day !!! This morning when I went to visit Kearstin the doctor came over to me while I was bathing her and told me that she thinks I am a wonderful mother and that I take such good care of Kearstin..... you can just imagine the smile it brought to my face to hear that :) Then she did her daily examination on Kearstin, left and shortly after came back and asked me how I would feel if Kearstin came into my room ?!?! How would I feel, no words to describe such a feeling, after two long months I am finally able to be her Mommy again !!! I don't have to ask to hold her, bath her, or even change her diaper, it's all up to me !! Kearstin is still hooked up to the same things as she was in the step down unit and I can only take her out of the crib and sit closely by all the hook ups, but I will take it !!! I called Ron and told him the great news and of course he was thrilled. It will be a different world for him when he comes up this weekend to actually have her "back" again !!

Other than our "big" move today, Kearstin had a great day. She was awake from 8:15 this morning until 3:00 this afternoon !!! Very content, just looking around,I held held her, I was doing my own little thearpy workout with her to try get her stimulated... she has been lying in bed for two straight months, not to mention the other two months in and out of the hospital so she "needs" alot of exercise to get her muscle strength back. She is five months old on Sunday and still is like a newborn baby because of all she has had to endure over these past five months....I pray she will be able to catch up. I don't mind how long it takes her to reach her milestones, I just pray she is able to !!!

I want to thank each of you again for all the prayers sent our way, please continue they sure are working !!! Thanks and God Bless !!

Wednesday, April 30, 2003 7:23 PM CDT

Good evening. Again, not to much to report about tonight. Kearstin is still doing well as far as not having any more seizures, that I am thankful for. They are going to start "weaning" her off of the "other" seizure medication tomorrow, please keep her in your prayers that it works !! If that holds true that she comes off of the medication okay, I "assume" we will be coming home soon !!! Boy does that sound so good !! I am really homesick... but I wouldn't trade being with Kearstin for anything in the world.
Tonight I asked for a tv,vcr to allow Kearstin to experience the real world. She didn't do to great with watching it. At first I was disappointed, but minutes after it was introduced to her she fell asleep so in all honesty I don't know how much of her not being attentive to it was her being tired. We will try again when she is more awake :)
I wanted to ask if any of you plan to attend Kearstin's benefit dinner on Sunday, would you do me a favor if possible, and take pictures and/or video ?? I regret not being able to attend, but greatly appreciate all that do and for everything everyone has done to make all this possible for Kearstin. We are so blessed to have such wonderful people in our lives !! Thank you all so very much !! God Bless !!

Tuesday, April 29, 2003 6:10 PM CDT

Good evening,
Nothing really "new" to report. Kearstin is still on the new medication for her seizures and it is working well so far. Once the level is up in her system they are going to wean her off of one of the other seizure medications. I am praying once this starts to happen she doesn't start having seizures again ?? Only time will tell.... other than that she has had several awake periods today, I am really shocked because they told me she would be extremely tired all the time, until her body got off one of the other medicines ?? I don't mind....I was alittle upset due to her not focusing to well today, although how much of that is due to all the medicine she is taking (eight different ones).... Please continue those much needed prayers, I'm not giving up on that miracle waiting to happen !!! Thanks and God Bless !!

Monday, April 28, 2003 10:06 AM CDT

Good morning,

Kearstin had a good night. They gave her the "other" seizure medicine and so far so good !! No seizures since yesterday at 5pm. Although she is much sleepier on this medicine, it does work and her sat's are looking good. I'm hoping once they try to take her off of the other seizure medicines that she won't be as sleepy... She was moved out of the ICU back to step down this morning, I pray this was the last time she had to see the ICU !! My heart fell to the floor this morning when I walk in the ICU to visit her. From a distance it looked as though the ventilator was next to her bedside...I was so scared !!! I prayed before walking up closer and thank God it was just my emotions getting the best of me, I'm now seeing things I don't want to see !! Thanks again for all the prayers, please keep up the good work !! God Bless !!

UPDATE THIS EVENING.....
Kearstin had a sleepy evening. This new medicine really does the job keeping the seizures under control but....she isn't awake very much. Hopefully, once the medicine is up to the level in her body to manage the seizures, they will be able to take her slowly off one of the other seizure medications ?? This is the plan anyway !! She was also getting sick early this evening, they thought it might of been reflux starting again, but she is having trouble going to the bathroom so they said it may be caused from from that ?? She was given some medication to "help" her go and she did, so maybe that will make her feel a lot more comfortable. Tomorrow is a new day and I pray it is full of blessings for Kearstin !!!

*** New pictures***

Sunday, April 27, 2003 6:41 PM CDT

Sorry about not writing yesterday, as "long" as these days are in the hospital I didn't even have the time to update the journal, I try to stay by Kearstin's bedside to watch out for seizure activity. Kearstin was still having seizures all day yesterday. Towards the end of the day they did become "shorter" lasting ones, but she still had an average of about twelve. The doctor came in and increased her medicine "again" hoping that would treat them ?? This makes her very tired. From midnight until five am she didn't have any. She had one at five am, three pm and again (the worst one of all) at around five pm. With the last seizure her oxygen level didn't come up very fast so they ended up putting her back in the ICU !!! There they are going to try another kind of medication that "could" cause some breathing problems and since she just came off the ventilator they wanted to keep an extra close watch on her. I pray she doesn't have any complications !!!! I can't bare even the thought of her having to go back on the ventilator !!! If you would have seen her today you would not believe me telling you she ended back in the ICU. She looked wonderful, she was wide awake for about four straight hours looking all around and moving and kicking her feet........ it's so hard to even get excited with the good she does when you have fear something bad will follow.... so far that's how it's been for her. Please pray she will recover from these seizures and soon be able to go "HOME" (what is that ??) It will be two months Thursday, this time around not mentioning we have only been home four weeks out of five months....... please continue the much needed prayers, thank you and God Bless !!

Friday, April 25, 2003 7:52 PM CDT

Sorry I haven't written in a couple of days, things have been touch and go...... Kearstin is still off the ventilator. She is now in the step down unit. But, we had a few scares. Kearstin has been "fighting" off seizures....... she has had an average of ten yesterday on and off and today about twelve (so far) I have to stay close by her side at all times to keep track of how many she is having and make sure she comes through them okay. Her seizures are worse these past few days then any she has had in the past..... it really concerns me. She is turning blue with these seizures and they are lasting alot longer than the past ?? The doctor was called about four times throughout the day and he came to visit her tonight and increased her medication even more, it will hopefully stop the seizures, but at the same time it makes her sleep even more.... This poor baby can't win for losing. She gets over one hurdle and has to cross another. Please continue the much needed prayers, she still isn't out of the woods..

Wednesday, April 23, 2003 7:42 PM CDT

Thirty four hours and STILL COUNTING !!! When I am not with Kearstin I am at the chapel or in my room praising God for the miracle he is performing....please pray with me that our prayers continue to be answered !! She is doing well. I think I am worse off then she is ...... my nerves are in pieces !!! But, she's worth it !! Today I was able to hold her again from 11am til 1pm and then again from 1:45 til 6:15pm we are "both" making up for lost time !!! It feels so good when the nurse "calls" me to ask me to come in and hold her because she is fussy and as soon as I do she stops crying and falls asleep in my arms, then I start crying..... she melts my heart !!

Thanks again for all the much needed love, support and prayers....... God Bless !!

Tuesday, April 22, 2003 10:37 PM CDT

I'm still "praying" every minute I can that Kearstin continues "to stay off the ventilator without any complications".... It has been 14 LONG hours. Today was a touch and go day..... not to mention, very emotional day, but as I've said before it will be worth every minute if she is able to stay off the ventilator. She has had two seizures today, worse than ever, she turned blue each time and they lasted longer than ever before. They told me it was because her body was so stressed from taking her off the ventilator. I was able to hold her from 1:30pm until 6:45pm, the longest I have held her yet, today was full of blessings !! I am so proud of her !!! She is an amazing little girl, I asked God for a miracle and he gave me Kearstin !! What more could I ask for?? I've never seen a baby go through as much as she has had to endure and still have the will she has, I am so grateful !!! Please, continue those much needed prayers, she isn't out of the woods just yet, but God sure is answering some of our prayers !!! Thank you so much, and God Bless !!

It's me again...... it is now four o'clock a.m. and as you can imagine another restless night...... But, I am happy to report Kearstin is STILL holding her own !!!! Thank God !!! It has now been nineteen hours, her blood gases seem to be fine and she is "finally" comfortable !!! I would be too without all those tubes shoved down my nose and throat !! As a matter of fact, the "talk" in the ICU unit is when they are taking Kearstin down to step down?? (step down is a step down from the ICU unit, she will still be closely watched, especially by myself, there is no "asking" to visit in there you just come and go when you want !!) Wonder if they could bring me a bed next to her ?? Okay, maybe not but hey I will take what I can get....the most important thing is she is moving ahead in the right direction!! Praise God !!!

** New pictures... WITHOUT THE VENTILATOR-- YEA KEARSTIN !!!! **

Tuesday, April 22, 2003 11:26 AM CDT

I have been asking each of you to pray for Kearstin everyday, I am asking to please stop and pray this very moment and praise God ..... "She IS OFF THE VENTILTOR"....... but is still touch and go. As long as she is calm or sleeping everything is good, but when she gets upset or crying she has trouble breathing. They aren't sure which way things are going to go with her, but all we can do is pray that God continues to heal her, she has made it futher this time than any other time in the past..... I pray and ask you to pray that this is all going to work out in her favor !!!! Thanks and God Bless !!!

Monday, April 21, 2003 6:30 PM CDT

After a restless night,(I wish they wouldn't tell me the day before they are going to do anything "tomorrow", I get all worked up knowing the "plans") they didn't take out the tube. They said most likely "tomorrow". Although they did go down lower on the C-pap to a rate of three. (was at five) and she is doing well so far?? They said that this is the lowest they can turn the machine down, good sign !! She was a little fussy tonight around five (her normal fussy time)... they did a blood gas test just to make sure everything was okay and she wasn't uncomfortable due to them going down on her rate and that came back fine, thank God !! Maybe she was fussy because they didn't allow me to hold her and she was mad !! I agree with her, I was getting used to having her in my arms.... So it looks like "tomorrow" will most likely be her "BIG" day. So please keep her in your prayers that after taking out her tube she will do well on her own...... she's come along way this time, I pray she continues !! Thanks and God Bless.

Sunday, April 20, 2003 6:37 PM CDT

Happy 1st Easter Kearstin !!

Good evening, I hope everyone had a Blessed and Happy Easter Day ?? Today is the day for miracles and I'm praying for all of our prayers to be granted to us. Tomorrow is Kearstin's "Big" day, please keep her in your prayers......they will once again attempt taking out her "last" tube in her nose. This will determine if her airway is being obstucted due to her cleft palate/small chin and if so she will need a trach or if God willing, she can do it on her own !!

Kearstin had a good weekend. She has lasted three days so far without the tube that was down to her lungs. This is the longest she has been able to do this in six and a half weeks.... we'll take it !!!!

The best part of the weekend was that I "finally" have held my little girl. What a feeling having her back in my arms !! (I held her two other times but only a few minutes) this time Friday I held her for an HOUR, Saturday another HOUR and today TWICE, once for and hour and the next TWO HOURS !!!!! The last time I rocked her to sleep, and then I just continued staring at how "big" my baby is getting !!! (9lbs.2oz.)I am "missing" so much of her babyhood even though I am with her each and everyday. Oh, "AND" I finally was able to change her diaper !!!! Was this a good weekend or what !!! I have thanked God a thousand times for blessing me with all of this improvement !!!! I so feel blessed that things are turning around for Kearstin, all we want is for her to continue getting better and to be happy. She deserves it !!!!

Okay I will stop bragging, but please Pray tonight for Kearstin's "big" day tomorrow. And also she was sneezing some tonight, please pray she isn't catching a cold she doesn't need any more set backs. Thanks and God Bless !!

**** New pictures in view photos ****

Friday, April 18, 2003 7:14 PM CDT

Sorry I haven't written until now, but things have been going great today and I didn't want to write in and then something happen.....I have had experience in the past with that, I start bragging about something good and it seemed something bad would follow. But I feel confident that things are finally looking "up" this time !! Yesterday afternoon at 12:45 they took "part" of Kearstin's ventilator tubes out. (the part in her throat, just like they did a few weeks ago and after 26 hours she got week and needed them back in for support) It has now been 31 hours and 15 minutes !!!! (not that I am counting) All the doctors are hoping this is the "real" thing !!! They feel positive that it just may work this time. (I'm praying hard) For them to say something positive allows me to be excited. Today they were suppose to take out the "rest" of the tubes out of her nose.... but they said this is the best she has done and they don't want to rock the boat. So they decided to allow her to rest over the weekend and Monday will be the "BIG" day for her. This will determine whether or not she will need the trach. Please Pray continuously for her over the weekend please !!! Our prayers are being answered, God is so good !! I pray this is a sign of that miracle he is working on that I have been praying for !!!

After they decided not to take out all the tubes I was so relieved. As badly as I want all this to be over, I want them to take baby steps with taking away "everything" I want it to be the right time. This is her "last" chance....

When I went in there this afternoon it was the best feeling in the world, she was wide awake "looking" all around, "looking" up at her mobile hanging up above her, and best of all "looking" right at me !!!! Just what I needed !!!! These past couple of days have been overwhelming with emotions, finally something good !!!! She really does look great today, the best she has looked yet, I think she is coming around. I am SO PROUD of HER!! Again, please keep her in your prayers that she will continue on this path , it's so important to me --- thanks !! God Bless !!

Wednesday, April 16, 2003 7:14 PM CDT

I'm sorry I didn't write an update yesterday, but I was to upset to even put anything into words. Kearstin's genetic doctor came in to see her for her appointment yesterday in the ICU and was updating me about her. He feels as though the trach is going to be needed due to her small chin and cleft palate. So of course that is the last thing I wanted to hear, but that wasn't the worst of the day. After talking to him about the findings of the syndromes that I have been researching about, he said that he would do the required tests to hopefully rule them out. He ordered more bloodwork and put an order in to the pediatric ophthalmologist to check Kearstin's eyes. Well, the ophthalmologist came in yesterday and the results of the test was not at all what we wanted to hear !! She has what they call optic nerve hypoplasia and septo optic deplasia. With the two together and all the mid-line birth defects that Kearstin has they classified her syndrome as being De Morsiers Syndrome. This syndrome is a very rare syndrome. I researched on this syndrome and found out that most all the children that have just "one" of the optic problems (but Kearstin has to have "both") have vision impairment. The worst of it all alot of children are blind or if they do see their vision is limited. And there is nothing, no operations or glasses to help !! I am so scared for her !!! It's bad enough we are on the edge with her maybe needing a trach, but now this !!! She has had one major thing go wrong after another !!! It's just not fair. We have been trying so hard to remain strong for her, but in all fairness how strong can one set of parents be when it seems every part of their child's body is affected !!!!

Monday, April 14, 2003 9:43 PM CDT

Good evening......sorry it's late in the day for the update, but I spent most of my time with Kearstin or sitting by the phone for the nurse to call me to allow me to see her (Mondays are very busy in the unit) Today Kearstin also had an appointment with the genetic doctor. Sadly to report he thinks that most of her airway problem is due to her small chin, caused from her cleft palate. He feels as though the trach may be the only soluation ??? Not what I wanted to hear !!! Then he ordered more test to rule out some syndromes that I have been researching about. I have been trying to find her "syndrome" that they say she has, but can't indentify. I'm studing to get my degree in the medical department. Ha ! Ha ! They most likely aren't going to attempt to take the tubes out until the first of next week?? So until then, please continue to pray for a complete healing so that the trach is "not" needed.

Also, if you already haven't read the past journal I wrote (Saturday, April 12) please read it, it gives information about a benefit dinner being held for Kearstin. Thanks and God Bless !!

Saturday, April 12, 2003 12:40 AM CDT

Last night we found out that Kearstin "once again" has an infection.......they don't know what kind as of yet. They did a culture and it now has to "grow". They started her on another kind of breathing treatment to try to resolve it ?? She also for the past couple of days has been throwing up here and there. This morning again. I'm not to sure if what she has may be some sort of virus ?? I don't know now just when they are going to attempt to take out the tubes ??? Please pray, please that she can come off the ventilator real soon, with no complications. Thanks.

I don't know if all of you know or not, but I wanted to let you know that on May 4, 2003 there is going to be a benefit dinner held for Kearstin at the Amercian Legion Post #28 on Rt.24 from 2PM until 8PM. The cost of tickets is $6.00 at the door. There is more details in the Sussex Post on the front page !! My little girl was on televison (the Christian channel)for much needed prayers and now has made the front page of the newspapers..... she doesn't even know how much people care and love her by taking the time to arrange all this for her. I want to say a special thank you for all that have come together in the help of making all this possible for Kearstin....your time, kindness, love, support and prayers will never be forgotton !! May God Bless You !!!

Saturday, April 12, 2003 12:40 AM CDT

Last night we found out that Kearstin "once again" has an infection.......they don't know what kind as of yet. They did a culture and it now has to "grow". They started her on another kind of breathing treatment to try to resolve it ?? She also for the past couple of days has been throwing up here and there. This morning again. I'm not to sure if what she has may be some sort of virus ?? I don't know now just when they are going to attempt to take out the tubes ??? Please pray, please that she can come off the ventilator real soon, with no complications. Thanks.

I don't know if all of you know or not, but I wanted to let you know that on May 4, 2003 there is going to be a benefit dinner held for Kearstin at the Amercian Legion Post #28 on Rt.24 from 2PM until 8PM. The cost of tickets is $6.00 at the door. There is more details in the Sussex Post on the front page !! My little girl was on televison (the Christian channel)for much needed prayers and now has made the front page of the newspapers..... she doesn't even know how much people care and love her by taking the time to arrange all this for her. I want to say a special thank you for all that have come together in the help of making all this possible for Kearstin....your time, kindness, love, support and prayers will never be forgotton !! May God Bless You !!!

Friday, April 11, 2003 9:56 AM CDT

Good morning. I don't have any updated news on Kearstin's health as of right now, but I wanted to write a thank you note to all that have been reaching out with all the much needed prayers and concerns. These past couple of days have been tough for me emotionally, as you may of sensed reading the journals. I guess I need to just take a breath and pray for some patience. I know the hospital is doing all they can do for her one day at a time. I just so badly want all this to be "over" for her. I want to take her home and watch her grow to be the beautiful little girl I was blessed to love. Thanks again for all the support, prayers, and love so many of you have shown through this difficult time in our lives. People we don't even know have reached out to us with prayers for Kearstin's healing, I am so very grateful to many !! God Bless.

Thursday, April 10, 2003 12:57 AM CDT

Hello everyone. I really have nothing new to post on Kearstin's health. No changes as of yet. I couldn't get in the ICU until 11:30 am due to them working on other children......boy was that a long morning !! Anyway, once I finally went in, Kearstin was crying (she was laying on her not so favorite side)....she seems to be very restless on her left side. She was so upset she actually was picking her head up off the pillow towards the middle !! I have never seen her lift her head !!! I was so happy to see her gaining strength enough to do that, but at the same time the more she did it the more mad she was getting !! This lasted for about a half hour before she got her way and the nurse had to turn her over to where she wanted to be !! Now she is resting...... the doctors haven't made any "plans" that I have been told. It kinda makes me upset that she is on the back burner in there for the past three days, I do understand that there are other children that may be more sick than Kearstin at the moment, but regardless she is still there too !!! Patience, Patience....they are running low !!! Please pray for Kearstin to be able to get off the ventilator soon....without any support. Thanks and God Bless.

Wednesday, April 9, 2003 9:14 AM CDT

Today is not a good day so far. I'm praying it changes very fast. I went to go see Kearstin this morning and found out she is running another fever, has a lot of decreassions, and breathing very heavy again. The nurse said she may be getting "tired" breathing at a rate of 4 on the CPAP, I pray not !!! Not that I want her to be sick, but I can't help but to think she may have something else going on?? The past couple of days she has been throwing up from time to time and sneezing. A lot of the nurses have also been coming to work sick !!!! (makes me so darn angry) I know I can't protect her from the world, but why would a nurse come to work around children fighting for their lives in ICU !!!!!!! I'm sorry I guess I am a little uptight over this situation. Kearstin takes a step forward and now has to take two steps back !!! I don't know what the plan for her is as of yet, on top of finding all this out I am not allowed in to see her because they are extremely busy today. Please pray that she doesn't continue on this path and that things turn around for her. Thank you and God Bless.

Monday, April 7, 2003 8:12 PM CDT

Hi....not a whole lot new with Kearstin today other than they turned down the rate on her Cpap on the ventilator (from 8 to 6 ) She seems to be doing okay so far. Although tonight before I had to leave for shift change she was getting sick. She kept getting sick and throwing up all night Sat. and stopped on Sun. morning ?? Now again ?? I'm hoping she doesn't have some kinda virus going on ??? She isn't running a fever tonight. She did over the weekend. I don't know what to think ?? The nurses all say don't worry about it her stomache just might be upset. How don't you worry when she is fighting so hard to get well ?? She also has a lot of gas. All the nurses think it is funny (they keep saying it's not me, it's Kearstin again !!) but my little girl is suffering a bellyache while they are making light of the situation...it's not to funny to me. Well, I must go for now it's time once again to go and visit my little pumpkin ( I take advantage of every minute I am able to be with her, she is growing so fast she is now 9lbs !!) She keeps this up I am going to miss her baby stage before she gets out of the hospital. Please pray tonight that tomorrow is a good day for her, they may attempt to take out the ventilator "again". Thanks and God Bless.

Sunday, April 6, 2003 10:04 PM CDT

Good evening everyone,
Sorry about being so late in the evening to update but we have had a lot of company today. And I also wanted to spend as much time with Ron (my husband) as I could due to him needing to go home to go back to work tomorrow. He was upset knowing he wouldn't see Kearstin all week and with her still not off the ventilator and still in ICU but he knows he needs to go back, his time is running out at work besides not wanting to abuse how understanding they all have been supporting him through all this with Kearstin being so sick. (he works with wonderful people) But hopefully when he returns Kearstin will surprise him and being doing much better. At least off the ventilator....Speaking of which, today they turned off the ventilator, but left in the tubes to see how she tolorates that (so far so good, they did that at 3pm) she is still on the CPap (supports her airway and gives her breathing support) but she is doing all the breathing on her own, now the real test is once again to take out the tubes. We need prayers that she can still breathe on her own with no support. Please continue those prayers, we still have a chance !! Thanks, and God Bless.

Friday, April 4, 2003 9:17 PM CST

Well tonight wasn't a good night for Kearstin...the only highlight was I was able to hold her for fifteen minutes (this is about 30 minutes in a month ) the whole time I held her she was trying so hard to move her head to get those tubes "away" from her.....she is also not feeling well. They said that the culture they sent off starting "growing" which means she does have an infection. They won't know exactly what kind it is until more time goes by, but they have already started the antibiotics to hopefully get it under control. She is so congested, runny nose, and very uncomfortable .........something she did not need on top of everything esle !! I can't understand why she is suffering so badly, she is such a sweet baby !!!! The nurse told me tonight she most likely had gotten this from them.....they carry things from one child to another !!! I guess it's something they really can't control, but Kearstin is already so weak from fighting everything else off !!! Will she ever get better ?? I cry just thinking of all this little girl has had to endure already in life, this isn't how it should be.....

Friday, April 4, 2003 5:37 PM CST

Hi everyone. I really don't have a lot to write because they aren't doing much of anything new right now except waiting for the results to the culture they sent out yesterday to see what kind of infection or virus she has now ??? It takes about twenty four to seventy two hours for the results to be in. They did turn her ventilator settings back down today. When they put her back on it they had to put it at the starting rate. I don't imagine they are going to try taking her off the ventilator again until Monday, they usually do much of nothing over the weekends. Please continue to pray for her as so many of you have been faithfully doing...thank you !!

Thursday, April 3, 2003 10:12 PM CST

Hello sorry it is late in the evening before I could write. I went home to go pick up Christopher (my son) so I could spend some time with him. He is staying with me at the hospital until Sunday. I am hoping to be able to pick up my step daughter on Saturday to spend some time with both of them (I know how they must feel being on the back burner right now with having to be focused so much on Kearstin at least until she is out of the woods) It's hard being pulled in so many different directions, but if it was anyone of our children we would be there for them as well. After returning to the hopital tonight I found out that Kearstin now has "another" infection !!!! I was so upset. Now she will be on antiobotics for seven days. WE spoke with the doctor this morning, the plan on Kearstin is now to try little baby steps on taking her off the ventilator instead of heading to the trach direction. (Thank God ) as much as I want her off of the ventilator too, having her on that verses the trach is much better. They decided that the trach has "risks" they want to try to avoid if possible ?? She isn't clearly out of the woods with not getting it but they said we need to take one day at a time and hope and pray for the best.....

Wednesday, April 2, 2003 12:10 AM CST

Sadly to report Kearstin is not doing well today. At 10 am they decided they had no choice but to put her back on the ventilator. She was working to hard breathing on her own. I am so proud of her, she tried so hard, but sometimes it's totally out of her control. When I went back in to see her after they put her back on it....I lost my strength and cried to the point I had to leave to control my feelings (she needs me to be strong, and as hard as I have been trying I can't control my hurt anymore.....she looks terriable !! She is so puffy in her face she can hardly open her eyes, she is bleeding again from her mouth and nose. They said she is aslo in need of another blood transusion today. The doctor came over to me and said they had no choice but to help her. They are going to let her rest for a day or so and then try again. If she does the same thing again, no choice but the trach. So many of you have asked if there is anything you can do for me, the only thing is to please pray continuously for her....the only thing that is going to change anything is our prayers being answered.

Tuesday, April 1, 2003 4:32 PM CST

What a very long day. Sorry I haven't had a chance to update you sooner, but I didn't want to leave Kearstin in case anything had gone wrong. She is sleeping now so I thought I would try to update you. Today was like walking on egg shells. They took "part" of the ventilator off of her this morning at 9am and she has tolorated it for 8hours so far.....I am not bragging because as soon as I do something always seems to happen. I really didn't want to even write this just in case. But... They took the part of the ventilator out that is in the back of her throat, so all that is left is the part in her nose supporting her tongue. Tomorrow is the real test to see if she can handle coming off it completely.....Please pray as you have been, our prayers are being answered !! I heard my baby cry for the first time in a month !!! It was the most beautiful sound in the world....I am tearing up just thinking about it. Please continue to say extra prayers, God is listening.

Tuesday, April 1, 2003 4:32 PM CST

What a very long day. Sorry I haven't had a chance to update you sooner, but I didn't want to leave Kearstin in case anything had gone wrong. She is sleeping now so I thought I would try to update you. Today was like walking on egg shells. They took "part" of the ventilator off of her this morning at 9am and she has tolorated it for 8hours so far.....I am not bragging because as soon as I do something always seems to happen. I really didn't want to even write this just in case. But... They took the part of the ventilator out that is in the back of her throat, so all that is left is the part in her nose supporting her tongue. Tomorrow is the real test to see if she can handle coming off it completely.....Please pray as you have been, our prayers are being answered !! I heard my baby cry for the first time in a month !!! It was the most beautiful sound in the world....I am tearing up just thinking about it. Please continue to say extra prayers, God is listening.

Monday, March 31, 2003 6:56 PM CST

Sorry it took me until now to write but we had spent as much time with Kearstin as we were aloud....it's not to often that we can visit with her for long periods at a time so we took advantage of it. The doctors told us around lunch time that they decided not to do the scope test. They said they really believe it is her airway that is the problem. Her lungs and heart are doing much better. They decided to turn the pressures down on her airway to see how she tolorates that ?? She is doing well so far and maybe tomorrow they said they would go even lower. If that works then they are going to try taking her completely off the ventilator....if she needs it back in then they are going to have a ENT doctor to examine her airway and see why she is having an air obstruction problem. They were leaning towards the fact of her small jaw and chin but since she hasn't had trouble breathing before her operation and didn't have a trake up until now they are puzzled ?? They have mentioned the trake again today but reassured us they are going to try every test they can before resorting to that....please continue to pray for her tonight, tomorrow we should have the answers. They are giving her steroids every six hours for twenty four hours to rule out swelling ?? I pray it works !!!! Thanks again for all the much needed prayers !!!! God Bless.

Sunday, March 30, 2003 6:28 PM CST

I apologize that it took me until this evening to update you on Kearstin, but we had a lot of visitors today and this is the first chance I have had. Kearstin is about the same, she is still very uncomfortable with the tubing still in her throat. They have been trying to keep her as comfortable as possible. It will be three weeks tomorrow that she has had her heart surgery, she seems to be healing fairly well. I know it takes a long time for her chest bones to grow back together and I am certain that she is still very sore. Tomorrow is the "big" day. They are going to go down her throat with a scope and look to see why she needs support keeping her airway open ?? I pray very hard that all it is is swelling from taking her tubes out and back in. (she already has a small airway, caused by her cleft palate) so both of them together might just be enough that she needs help until the swelling is gone ?? Please pray tonight and tomorrow that we recieve good news..... I am scared to death the thoughts of a trake, I want so badly to be able to hear my baby cry....Thank you and God Bless.

Friday, March 28, 2003 11:53 AM CST

I thought I would be able to give the good news that Kearstin is finally off the ventilator but I can't. The doctors took her off and an hour later she was back on. I went to see her and she looks worse than ever. I pray she is not giving up. She was bleeding from her mouth because of them taking out the tubes and replacing them again. She is so miserable, I can't say I don't know why, she has been through so much !! May heart is hurting for her. I wish so much I could trade places with her, she deserves so much more than all this pain. I spoke to the doctors just a few minutes ago and wasn't pleased with the upcoming plan. He said that they are concerned that there may be an airway obstruction ?? How they are going to determine this is by keeping her on the ventilator over the weekend to support her airway and turn off the pressures from the ventilator so she has no support coming from that but that allows no blockage in her airway. If having no support coming from the ventilator that will then show them that either she needs help with her airway or if they need to turn the pressures back on that she has a problem in her lungs. Please pray for her continuously that her airway is not the problem....if it is, this could cause her to need a trake and a long term stay in the hospital....she has been through enough, she doesn't need this on top of everything else !! Please Pray, please !!!

Thursday, March 27, 2003 6:24 PM CST

Hello everyone. Again thanks for all the prayers and support all of you have shown as we go through this difficult time in our lives. Late last night I was told that they were going to take Kearstin off the ventilator in the morning. As I waited the doctor came to me at one o'clock and told me they wanted to wait one more day. That is what they said the day before ?? As badly as I want her off, at the same time I want her to be ready. (she's been ready since they put it in, I guess it's more like when her body is ready) She was asleep a lot of the day until mid afternoon when she started crying more than her usual. We tried everything to console her, but nothing was working. I think she finally gave up and went back to sleep, I just hope she wasn't in any kind of pain ?? I know she will be so much more relaxed when all those tubes are out. Please pray that tomorrow brings her a better day. God Bless.

Wednesday, March 26, 2003 4:30 PM CST

Hello, no exciting news to report..... all they did today was lower her ventilator just a smidge, the doctor hung around for about a half of an hour to see how she tolorated it and so far so good. I pray tomorrow they can go lower. Right now it's another waiting game. But as long as she is on the road to recovery I will wait as long as it takes !! The seizures are still hanging around and they are now considering it may be caused from the ventilator, don't ask me to explain that one because I don't know how having a machine breathe for you would cause siezures but ??? I just listen and pray they know what they are talking about.
Ron and I went up town last night to get Kearstin another tape to listen to (she only has one ) anyway, I found this teddy bear that was made for a little boy that has a rare brain disorder (not what Kearstin has, but we can relate) anyway it has a heart on it that you press and the heart beats and on the paw if you press it it plays a beautiful song about him. Each one that is bought contributes to him and finding a cure. I wish I could afford to buy everyone of them off the shelf. I did buy a few to share with some of the children that I have gotton to know in Kearstin's unit. It made me feel like I was able to give that little boy something other than my prayers.
If anything changes tonight I will be sure to keep you posted if not I will update you again tomorrow. Thanks for your prayers and thoughts. God Bless.

Wednesday, March 26, 2003 4:24 PM CST

Hello, nothing all that exciting today. The only thing they really did today was lower her rate on the ventilator a smidge to see if she would tolorate that. And she did, the doctor hung around for about a half hour to see how she reacted to the change and so far so good. I will keep you posted if any changes occur tonight, if not I will update you again tomorrow. Thanks for the continueous prayers and thoughts. God Bless.

Tuesday, March 25, 2003 8:55 PM CST

I would like to start off with apologizing for not being able to keep everyone posted a lot more and a lot sooner, but the problem is that there are only two computers available and hundreds of people wanting to use them..... so as soon as one is available I'm right on it. I also want to thank everyone that is praying for our little angel. One of our prayers were answered today. As I wrote yesterday they wanted to do a heart catherization...well they did and the outcome was great !! Her heart is not the problem of her not being able to come off the ventilator. What a huge blessing !! She is in pain since the procedure, but they are trying to keep her as comfortable as possible. Now what is the problem ?? We don't know the answer. They do know part of it is the ammonia but she has been on heavy antiobotics for ten days now and it has only slightly improved her lungs. They are going to try different breathing treatments to try to at least get her off the ventilator...not to sure if any of them will work or not, but they said they have to at least try?? As far as her seizures, they are not being controlled very easily. They have been trying to change her medication levels for two days now to keep her from having them but that's not the answer. They are assuming that all the medication she is on for everything may play a factor in her having them ?? Not sure on that situation either ?? Lots of questions still no answers ?? All we can do is continue our prayers, God will answer them in his time. God bless and thank you.

Monday, March 24, 2003 10:02 AM CST

Today started off to a great start. Sadly to report it wasn't great for long. When I went in to see Kearstin she was fully awake, looking all around with those big, beautiful eyes of hers. She wasn't looking right at me today, but she was very alert. She also glimsed at me for a short second and gave me a half of a smile !!! Talking about something melting your heart-- that did it !!! She hasn't smiled at all yet so that was an extra bonus... but shortly after she fell alseep, she just had her seizure medication and that really poops her out. Her nurse and I were talking and I began to brag about her not having a seizure in weeks....well I will learn to shut my mouth because no sooner than our conversation was over sure enough she had one !!!! I was so upset. Her blood pressure went up to 160 !!! So they now have to do a blood level check to see if she has outgrown her volume on her medication ??? Then on top of that here comes the doctor (scared to death of talking to them, no news is good news, right??) Well, he procedes to tell me that there were no imporvements on her x-ray and that they are going to have to do that heart catherzation that was praying she wouldn't have to go through. They aren't sure at this point why her lungs are not improving. She has been on antibotics for eight days now for the ammonia and it's not clearing her lungs up so now they are leaning towards something else is going on in her heart !?!? Today is not what I thought, I had hopes for a brighter day.....

Sunday, March 23, 2003 4:00 PM CST

Nothing really new on Kearstin's health, but I did want to write in on about my visit with Kearstin last night. She had an awake period for about an hour and the whole time she focussed on me !! ( She has never focused well so this was exciting to me ) I could of stared into those big, beautiful, blue eyes all night long, but I will take whatever I can get !! Then the nurse asked me if I have held Kearstin since she has been in here and of course I haven't. But she broke the rules and allowed me to hold her while she changed her bedding. These past two and a half weeks have been very long, but having that precious baby back into my arms again just for those few minutes made every minute worth it !! Some of my family came to visit us today. It was nice to see some familiar faces. Kearstin's daddy will be back tomorrow. I can't wait, Kearstin and I aren't used to him being gone for so long. But those bills just won't stop coming in for some reason !?!? Well, I best end here I don't want to stay away from her to long....please pray that tomorrow will be the day the vertilator will be able to come out. It is really bothering Kearstin, she tries her best to wiggle her head to get it out but it doesn't work. She has been so restless latley so maybe after this is out she will feel much better ?? Again, if this is your first visit to Kearstin's web page please read her journal.....God Bless.

Saturday, March 22, 2003 12:36 AM CST

Hi everyone. Thanks for taking time to check on Kearstin. Today is a new day, but nothing new. I spoke with one of the doctors this morning and she said that they aren't going to make any changes until Monday. At that time they are going to try to once again to take her off the ventilator. I pray that it works this time !! She also said that her lungs don't have much improvement.....they may have to end up doing a heart catherization to see how much the heart plays a factor in her not being able to breathe on her own ?? I pray that she doesn't have to have this procedure done, from talking to other parents it's very painful. If this is your first time reading about Kearstin please read her journal (you'll learn more about her) and can view her pictures as well. Thanks for continuing to pray for my little girl.... God Bless !!

Friday, March 21, 2003 6:58 PM CST

For those of you who don't know Kearstin she is my little angel, a gift from God. She was born with multiple birth defects. She was born with heart problems (aortic valve smaller than should be, and a hole in her heart) a cleft palate (she had to have a feeding tube placed in her stomache for feeding, she can't drink or have anything in her mouth she is also missing her corpus callosum (missing link that communicates left side of your brain to your right) without this some children are perfectly normal, others are not as lucky. Some children may have learning disabilites, have problems even walking and talking (things we take for granted each and every day) (I don't anymore....you learn to appreciate every little thing that God blesses you with) At two weeks of age she under went stomache surgery. Her bows were twisted and her appendix were on the left side instead of her right so they removed them. She was in NICU until she was a month old. We took her home for two short weeks and then she was flown back to Dupont. I had to give her CPR at home because she stopped breathing and turned blue and then the ambulance took her to our local hospital where she turned blue two more times.....once at Dupont she started having seisures. She had an average of 15 that night. She is currently on medication to treat them. During this time she underwent her first open heart surgery. She was born with a hole in her heart that they repaired. She was in the hospital three weeks. Before going home they told us that she could have problems with another part of her heart (left ventricle) that if it doesn't grow that she would need a complex and dangerous operation that they don't recommend to put her through because the outcome could make her worse instead of helping. They told us there was no "right" decision, that either was not good. So we went home and all we could do is to pray that God allows it to grow. We were home under three weeks before Kearstin had been admitted back in Dupont. She was almost in heart failure before we got here. Needless to say she had to have another open heart surgery. The hole they repaired the first time opened back up. They had to repair that and also work on her aortic valve to make it work better to help her breathing issues. She is still in the CICU because on top of having the surgery she now has ammonia and may have a virus on top of that ?? (they are running test) and has an ear infection. She has had numerous blood transfusions. She has been on the ventilator for two weeks this past Thursday. They keep trying to take her off but shortly after they do she ends up needing it put back in. The last surgery she was off the next day, so of course this is scary to us. Please pray that God answers my prayers for a miracle and heals her.the only thing She has known since she was born is pain and suffering and that her mommy and daddy love her.......

Friday, March 21, 2003 6:51 PM CST

Kearstin is about the same tonight. She had another x-ray done at 6:30 to see if there have been any changes in her lungs, I will let you know as soon as I know something.

Friday, March 21, 2003 6:45 PM CST

Friday, March 21, 2003 11:13 AM CST

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