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Monday, March 3, 2008 9:06 AM CST

Happy 3rd Birthday Ben! Its actually your golden birthday, twice over since its 3/3

Mom and Dad miss you and love you very much. We had a birthday party for you and some buddies on Saturday night where we raised money to help save kids like you in the future. Your brother and sister are well. Alex is in kindergarten and Grace is talking more and more all the time. We only got to hear your sweet voice just that one day, a day we'll always cherish.

With love on your birthday,

Mom and Dad

Saturday, March 3, 2007 10:50 PM CST

Today is Ben's 2nd birthday. Today we celebrated Ben's birthday with a party Kieran's Irish Pub surrounded by family and friends. Ben's caring friends and family helped raise money for his fund by honoring and toasting his bravery and his memory. Events like these keep Ben in our hearts and give his suffering and his death a meaning that we can live with. I can think of no better way to honor Ben's memory than raising money to help other children like Ben. It was a wonderful event and it felt good to be surrounded by such caring people today. Ben lives in the hearts of so many people and we are truly blessed to know so many people who care about our little boy and keep his legacy alive. It was so wonderful to spend Ben's birthday surrounded by family and friends. Thank you to all of you who made Ben's birthday such a wonderful event!

Happy Birthday Ben - we love you!

Tuesday, August 29, 2006 9:33 AM CDT

Just an update for those who may still be reading this journal. First, we will be having our first annual Ben's Buddies golf tournament on Septembe 10th to raise money for Ben's fund. Thanks to Judy Galvin and other members of the Haben and Hanson families, we have been able to put this tournament together in record time and have around 100 golfers - a fantastic turn out for the first year! It has been wonderful to be able to do something positive in Ben's memory - it has been good for our souls. For details, go to www.bensbuddies.org.

On another note, we have been blessed with Ben's little sister. Grace Aurelia Hanson was born on July 28th - healthy and happy. We will never forget our little Ben and God knows we never want to, but since the arrival of Grace, a cloud has been lifted that had settled over this house. The sound of a crying baby is music to our ears that never got to hear Ben cry. Our arms are full of a soft little budle that had ached for our little boy. And after a painful wait, we reveled in bringing our baby home - the dream we had for Ben that never came true.

Someone once told me that prayers are always answered, you just may not like the answer. Although the prayers couldn't keep our little Ben with us, I'm sure they had a hand in bringing us baby Grace. As time passes I'm more and more sure that Ben's destiny was written from the start. His eyes were very old and very wise despite the severe brain damage. Ben had a very old soul. I'm convinced he had to learn about love - the kind of unconditional love he received from so many people. Once he had experienced it, he was free to move on to a better life. Although I miss him terribly, I know that wherever he is and whatever he is doing, he is better off than he would have been here with us given his prognosis.

To all of you who have kept us in your prayers, I thank you. They have given us what we would have been too afraid to ask for.

Kate

Friday, March 3, 2006 1:52 PM CST

Today would have been Benjamin's first birthday. We started some annuals from seed today for his garden. Thank you to those of you whose creations have helped us remember our son. We have a lovely scrapbook from my cousin Jodi, the video montage from my cousin Kim, and Benjamin's memory box that Nathan made just to name a few things.

Happy Birthday in heaven little one! We love you!

Thursday, February 2, 2006 8:54 AM CST

Kate and I wanted to pass along some information we learned about the underlying cause to Ben's condition. Some readers of this blog probably have been wondering if we ever found out more info. We did, it just took a long time to get it. The pathologist who did the autopsy has told us that the cause of Ben's hydrops was a condition called generalized lymphangiectasia.

Ben's lymph vessels were abnormally dialated throughout his body, causing excessive accumulation of lymph fluid and ultimately leading to his death. This problem is quite rare, and very little is known about it. It is difficult to diagnose during life. What causes the lymph vessels to be dialated is unknown, either excessive loss from the bloodstream for some reason or a problem returning lymph to the bloodstream through the thoracic duct. Kate and I did undergo a genetic evaluation and spoke with a geneticist. It is unlikely that this condition is inherited, but it cannot be ruled out since so little is known.

Thursday, December 15, 2005 9:32 PM CST

Brian and Kate are very excited to announce the creation of a charitable fund in Benjamin's name! The Benjamin Walker Hanson Neonatology Fund is now part of the University of Minnesota Medical Foundation.

The fund is a perpetual endowment, meaning the money is invested in order to provide sustained support for the University of MN Medical School forever. Anyone giving to the foundation can choose to direct the contribution to Benjamin's fund. The Minnesota Medical Foundation Endowment Fund is made up of more than 500 funds like Benjamin's and as of June 30, 2005, had a total value of $204 million.

Distributions from Benjamin’s fund will be used to support the Neonatology fellowship program at the University of Minnesota – the program that trained some of the doctors who gave us two glorious months with our beloved son. The University can choose to use the fund to support research or general neonatal education in areas of greatest need to benefit future generations of children. The Neonatology fellows work at the Children’s Hospital NICU as part of their program and provide care to many children like Ben each year. Their services are invaluable and we are eternally grateful to this program and it’s participants for their dedicated care.

We were able to meet the minimum endowment level through the generosity of our respective employers’ gift matching policies, and plan to continue to give to this fund throughout our lives. Over time, hopefully the fund can grow to have a significant impact on neonatal research and help educate more doctors for little ones like Ben.

Thank you once again to all of you whose compassion for Benjamin touched our lives, our family is blessed to know you. The knowledge that Benjamin was in the thoughts and prayers of so many people helped to sustain us in even the most trying days. It is our most fervent hope that through Ben's fund, doctors in the future will have the tools to combat neonatal conditions that are beyond current medical understanding and capability.

If you would like to donate to Ben’s fund, donations are tax deductible, and can be sent to:

Minnesota Medical Foundation
C/O Kari Oeltjen
200 Oak Street SE Ste 300
Minneapolis, MN 55455

Please specify the Benjamin Walker Hanson Neonatology Fund. Sometime next year donations will be accepted online for Benjamin’s fund through the MMF website - http://www.mmf.umn.edu. For now, we ask that donations be mailed to Kari as she will make sure they are directed to Benjamin’s fund. The MMF also accepts gifts of appreciated securities, a great way of maximizing the tax benefits of your charity – more info here: http://www.mmf.umn.edu/ways/story.cfm?id=71.

We would be happy to answer any questions you might have, just call Brian or Kate at 651-493-4826. Or, if you would prefer, you can contact Kari Oeltjen at 612-625-1440.

Thursday, June 2, 2005 10:20 AM CDT

Thanks to the generous support of friends, family and coworkers, we raised almost $2500 for charity in memorials for Benjamin! Some of you gave directly to Caringbridge and Children's so in reality even more was donated.

Of the $2500, $500 was given to CaringBridge, which will hopefully be matched by Brian's employer's parent company, Xcel Energy. The remaining $2000 was donated to the Children's Hospital Foundation, divided into three funds: $1000 to the Mannie Lippman NICU fund that provides equipment and supplies to the NICU, $500 was given to the Charitable Care fund which helps uninsured and underinsured families who are unable to pay for their child's care, and $500 to the Professional Staff Research & Education fund.

We hope to be able to donate significant additional funds once life insurance proceeds are received - and will update this site again then. Thank you once again for your generous support of these worthy causes that help ill children in our community and their families.

-Brian and Kate

Saturday, May 14, 2005 9:14 PM CDT

On Friday, May 13th, we said good-bye to our beloved son, Benjamin. Although saying good-bye was painful and difficult, we took comfort surrounded by the many wonderful people who came to say good-bye with us.

Thanks to the help of our many wonderful friends and family, Ben's memorial service was exactly as we wanted it to be. Posters full of pictures of our beautiful Benjamin made by our loving friends surrounded the Bradshaw Celebration of Life Center. The toys, pictures and blankets that had adorned Ben's room surrounded us throughout the ceremony to help his spirit feel at home. The Chapel was filled with beautiful flowers in sand pails and toy wheelbarrows and the arrangements themselves contained toys from Benjamin's bed. Balloons adorned the Center as a celebration of Ben's life and our treasured time with him. Our friend Nathan made us a beautiful cherry wood memory box to keep our treasured keepsakes that will always remind us of the two months that Ben blessed us with his presence in this world. And for those who had never had the pleasure of meeting him, Brian's cousin Kim Mordal and her husband made a wonderful video montage of pictures from Ben's life that we will treasure forever!

Brian and I were touched that so many came to help us say good-bye to Ben! Our family has been truly blessed throughout this experience to have so many people praying for Ben to recover and giving him strength!

The service itself was wonderful! Reverend Dee Moore - a Chaplin at Children's hospital whom we were privileged to meet during Ben's stay - conveyed phenomenally Ben's spirit and the effect he had on people's lives. She had met Ben on several occasions and baptized him the week prior. She reminded us how strong Ben was and the wisdom his soul possessed. We were privileged to have her as officiant. At the end of the service Alex, Brian and I released a dove - a symbol of Benjamin's spirit released from his broken body to remind us that for Ben, now Everything is possible!

We thank all of you have been with us throughout Ben's life for all you have done for Ben and for us! We are so grateful to have shared Ben's life with so many people and take comfort that Ben's memory will live on in so many hearts! We loved our son deeply and we always will, but it was very clear on Friday that we are not the only ones who love Benjamin!

We thank you all who helped us to make the service a very special good-bye and those who came to say good-bye with us! You are all very special people and we are so very fortunate to have you in our lives!

For those who could not attend and wish to see the ceremony, we will be posting how to do view it from the Bradshaw website once we have the instructions.

Every day is a new day for Benjamin, and EVERYTHING is possible!

Thursday, May 12, 2005 6:53 PM CDT

The webcast of Benjamin's Memorial Service is really a video that can be played at any time from the Bradshawfuneral.com site. It should be ready for viewing late tomorrow night, and I will link to it here, probably over the weekend but possibly Monday.

Click on Journal History to see more info on tomorrow's Memorial Service.

Thanks!

-Brian

Wednesday, May 11, 2005 5:23 PM CDT

Two other items of note and then a repost of yesterday's journal to keep it on the same page. There will be a webcast of the service on Friday. I believe it will be hosted on www.bradshawfuneral.com. Search for Ben Hanson and you should find it. There will be a delay, not sure how long though. I will post more details as I get them.

Also, memorials in lieu of flowers will be donated to charities benefitting sick children and their families. Children's Hospital Foundation and caringbridge.org will be 2 of these charities for sure. We will make it known in this space how the money was donated, hopefully within a couple of weeks.

Yesterday's post:

A memorial service will be held for Benjamin on Friday at Bradshaw Funeral and Cremation Services in White Bear Township. It is located on the north side of Hwy 96 about 1 mile west of I35E, on Greenhaven Drive. There will be a visitation from 1-2PM, and the service will begin at 2:00PM. There will be an obituary in the Strib, probably tomorrow.

All are welcome to come. After the service we are having a potluck at our house - 791 Carla Lane (55109)in Little Canada, MN. Bring a dish, side, beverage, or dessert if you would like to join us at our home to celebrate his life and mourn our shared loss.

We continue to seek solace and support in the guestbook and we thank all of you for your beautiful and kind words!

Tuesday, May 10, 2005 9:29 AM CDT

A memorial service will be held for Benjamin on Friday at Bradshaw Funeral and Cremation Services in White Bear Township. It is located on the north side of Hwy 96 about 1 mile west of I35E, on Greenhaven Drive. There will be a visitation from 1-2PM, and the service will begin at 2:00PM. There will be an obituary in the Strib, probably tomorrow.

All are welcome to come. After the service we are having a potluck at our house - 791 Carla Lane in Little Canada, MN. Bring a dish, side, beverage, or dessert if you would like to join us at our home to celebrate his life and mourn our shared loss.

We continue to seek solace and support in the guestbook and we thank all of you for your beautiful and kind words!

Monday, May 9, 2005 6:15 AM CDT

Benjamin Walker Hanson passed on this morning at 5:20 AM. He fought very hard his whole life and this morning he couldn't fight anymore. Brian and I were here and were able to spend his last minutes with him holding him in our arms. We were truly blessed to have these two months to love and know our son!

Although our hearts are broken and a little bit of us has died today, we must remember that today is a new day and for Ben that now means he has gone to a place where he can play like a normal, healthy boy and experience all the joys that children should - something he would never have experienced in this life. For Ben now, truly, anything is possible!

We will post rememberence service information when it becomes available. Please see last nights posting as it contains a thank you to all of you for your prayers and words of encouragement.

Sunday, May 8, 2005 7:23 PM CDT

Benjamin gave me a wonderful Mother's Day gift today! For my present he let me hold him in my arms (without the aid of a pillow) for an hour and a half. It was a truly joyous experience and not one I have had the opportunity to experience before. Today he was better, he has been urinating again and was able to diurese some of his fluid. He was also tapped on both sides last night to drain the chest fluid that had reaccumulated. He was feeling so good today that in addition to my cuddle, he was held by his father, both grandmothers and his great grandmother. All in all he was held for about four hours today - a record for him by far!

Now the difficult news. It is very evident that Ben's body cannot take the Octreotide and that it has not worked. Yesterday's chest taps were the second in a 24 hour period, a clear indication that the medicine was doing nothing to stop his pleural effusions. In addition, the Octreotide all but stopped his urination which means it was negatively affecting his kidneys and causing more body edema rather than less. He also had multiple siezures much of the night last night, some lasting as long as 25 minutes. His body cannot take the Octreotide, the medicine that was our last hope, it was stopped last evening.

We were given the benefit of a second opinion today from a Neonatologist outside of Children's who works for the U of M. He told us first of all that upon reviewing all of Ben's chart information it was clear that Ben had received excellent care, an opinion that we agree with heartily. Unfortunately, his opinion matched that of the doctors' at Children's - that we have done everything possible for Ben and he could think of nothing else that could be done as a possible treatment for Ben's condition. There is little reason to believe any treatment for his edema and pleral effusions will be successful long term for him at this point. He also felt that his reactions to the Octreotide were clear signs that Ben's body could not tolerate the drug and that it was doing nothing for him. This is not a surprise to any of the doctors, but it was worth a try and something we had to do to give him every oportunity to survive. He also said that he agreed with the grim prognosis we were given had Ben been able to recover. It is very possible that mentally he would forever have been an infant due to the amount of brain damage he has suffered.

Today Brian and I had to make the most difficult decision we will ever make in our lives. Our choice was to try the Octreotide again or to let him go. Ben's body has given us clear indiciations that it does not work for him and we cannot give him something that hurts him more than helps him. We have come to the realization that we have done everything we can for Ben and that the right thing to do for Ben is to let him go. He cannot live a good life on continual morphine, valium, without food, and on a ventilator when there is no hope of recovery. We have never known pain like we have felt today and although we know that it is the right decision, it is the hardest thing in the world to let him go.

Yesterday Brian invited anyone who wishes to see him to please do so and we continue to extend that invitation. We will be spending most of our time there in the coming days and nights to give our son all of the love we can while he is still with us, so calling the hospital is the best way to reach us (651-220-6210 rm 32). We hope to have a few more days with him, to enjoy him and show him how much we love him but the end is very near. Ben only has a few more days at most so we urge you to contact us tomorrow to arrange a time to visit should you wish to do so.

This will likely be the last entry until Ben leaves us. So many have asked us what they can do for us but we hope you know how much you have done for us already! We ask that you continue your words of encouragement on the guest book as it will take more strength and courage to get through these next few days than we can muster on our own. Also, share any ideas you may have for us for preserving his memory during these last special days in the guestbook. We will be taking video, holding him a lot, getting some imprints of his hands and feet, etc. It has been a long journey these last two months and I hope that each and every one of you know that being able to share that journey with you and draw on your prayers and encouragement for strength has seen us through! We take comfort in knowing how many lives and hearts have been touched by Ben and that his memory will live all over the country long after he is gone. We hope that his courageous battle will give strength to someone else in need in years to come giving his journey that much more meaning and purpose. We will update you all with his passing and hope that you will continue to pray for peace for Ben and for our family.

Although we our hearts break at the thought of letting go of Ben and our the tears flow like torrents of rain, we must remember that tomorrow is a new day and for Ben that now means the possibility that he will go to a place where he can play like a normal, healthy boy and experience all the joys that children should - something he would never have experienced in this life. For Ben now, truly, anthing will be possible!

Saturday, May 7, 2005 7:10 PM CDT

Today Ben had several seizures and has virtually stopped urinating. The octreotide medication was discontinued for now since it may be the cause of the seizures and the reduction in urination. We may restart it in the morning at a lower dose, we will have to wait and see what tonight brings. We are awaiting a second opinion from a senior U of M neonatologist that we should have Monday or so. This will address overall recommendations and opinion of his prognosis.

Some friends of ours came to the hospital to see Benjamin today and we had a very nice visit. We realized that there are a lot of people who care for Ben out there, many who read this weblog. We are continually amazed and so very blessed to have so many compassionate people in our lives supporting us. Kate and I would like to invite those of you who care for Ben to come and meet him if that is something you want to do. Just call us at the room, 651-220-6210, ask for room 32, or try my cell at 612-839-2501. We are also learning to feel how we feel, not worry about how we "should" feel. So do not worry about feeling like you "should" visit him. Come and do so only if you want to. Every hour brings a different emotion for us. We had hoped to do this at some point after Ben comes home to Little Canada. The reality is that is an unlikely scenario, and Ben may not have much time left.

We continue to hope and pray for Benjamin to recover. Unfortunately hope has not been the dominating feeling this past week, as we focus on the big picture for our son's life and what he goes through on a daily basis.

-the Hanson's

Thursday, May 5, 2005 7:55 PM CDT

We had a nice long session holding Ben today, complete with a few seoncds here and there of open eyes! He is urinating very well and looks a little less puffy. Down a bit on the vent settings as well even though he has gained quite a bit of weight these past 3 nights. We are guessing he will lose weight tonight. Starting the Octreotide tonight or tomorrow AM. Also, one of the Neonatologists from the U of M is coming tomorrow or Monday for a second opinion on his status. We'll also get some second opinions from the neurology side of things soon.

Today's meeting was very hard. The doctors do not believe Benjamin has a good chance for survival. If he does survive the most likely outcome is moderate to severe physical and mental disability. Mild disability is possible, life without a ventilator at least in his trachea for the next 1-3 years is not likely. Verbal speech is not likely ever going to happen for Ben, and he will almost certainly need a feeding tube for some time should he survive.

There are a lot of things that are still unknown since many tests cannot be performed in his current condition. The range of possibilities is large, and he has a reasonable chance at a respectable quality of life should he start to recover very soon. So we elected to go forward with agressive treatment at this time. As is always, we have to wait and see. Tomorrow is a new day, and anything is possible!

Thanks for all your continued love, prayers, and support for Ben and our family.

-Brian and Kate

Wednesday, May 4, 2005 9:45 PM CDT

Today Benjamin was baptized in a small ceremony we had been planning for a couple of weeks. He did very well and overall had a pretty good day. Benjamin almost got one eye open during his short baptism ceremony, which was wonderful to see. He's been more edematous these past couple of days and gained weight again. If you read the post from yesterday you will see our focus has changed a bit to more big picture stuff than daily numbers and slight variations in condition.

On that note, we had a good long talk with the director of the ethics committee for Children's about how we go forward trying to determine through all the information and opinion that is out there what is in BENJAMIN'S best interest. Our parents and my grandmother were able to sit in with us and support us through that discussion.

I don't feel up to really going through all of it in detail here and now. Tomorrow we will have a meeting with medical specialists, ethics and social workers, and a couple of friends who may have special insight for us about what the range of possibilities for Benjamin are and what the most likely problems he will face will mean for him. We will probably find we do not have enough information. We will probably be seeking outside second opinions. But we can start working toward a better understanding of what he is going through now and what challenges he faces in the future so we can make good decisions for him.

We walked up to the cathedral yesterday, up the long staircase behind the hospital that goes right by Hill House. Its a beautiful place to sit and think, sit and pray, sit and meditate. Thank you to so many of you who continue to pray and hope for a good long life for Benjamin, as we do every day. We thank God for the blessing of the 63 days and counting that we have been able to share of Benjamin's life. Tomorrow is a new day, anything is possible.

-Brian

Tuesday, May 3, 2005 7:47 PM CDT

Today we found out that Benjamin's brain is significantly damaged and is small for his age, what they would expect for a 34-36 week gestational age child. The MRI showed that his brain had an "insult" due to his traumatic birth, and we know he has received very poor nutrition these past 62 days due to his poor overall health. These problems, combined with the many stresses his little body has had to endure during that time and the lack of stimulation he has been able to tolerate, mean he will likely have moderate to severely debilitating physical and mental disabilities should he survive the basic fluid imbalance problem that continues to plague him. Due to long term ventilation and associated lung damage, he will likely need to be ventilated via his throat for 1-2 years should he survive. He also may require a feeding tube for a long time due to oral aversions from the vent tube. The aversion may lead to an inability to feed via normal methods.

These outcomes are what we are told are the likely outcomes - by no means assured. The physical exam performed by the neurologist today had many limitations due to his edematous condition. The MRI is probably more telling though. He may walk someday, he may be able to communicate more than a few signs someday. Those possibilities are farther from what is likely every day that he continues to be unable to feed normally or handle moderate movement. Without reduction in his tissue edema and pleural effusions, feeding him is not good as it may "stiffen" his lungs, increase the fluid in his body, and make it even more difficult for him to breathe, even with the vent.

Unfortunately almost all therapies and treatments for his fluid imbalance have been tried already. In a couple of days, we are probably going to start a riskier treatment with a medication called Octreotide. It may fix his pleural effusion and edema problems, though if his doctors were more optimistic about it I am sure they would have wanted us to try it before now. There are many possible unpleasant, and for Benjamin, life threatening side effects of the medication. We do not know how long it will take for it to work or not work.

Benjamin is an extraordinary son, very strong, and a real fighter. Kate and I are very proud of him and have been blessed to have had these past 62 days with him. We are not going to give up on him - ever. We have to keep his best interests in mind. Terribly awfully disgustingly and abhorrently, at some point those best interests might be allowing Benjamin's suffering to end. This would not be a decision we would make lightly nor is it something any parent should have to decide for their own child. We will keep praying and hope he gets better soon. But what we have learned today is that we cannot wait forever and that soon we will have to work with his medical team to determine just how long we can wait before it is too late for Ben's brain to recover.

Monday, May 2, 2005 6:11 PM CDT

Benjamin tolerated the MRI very well today, slept through the whole thing. Hopefully we will find out tomorrow the results. Weight has been steady, but he is looking puffier today, so we'll see what happens tonight. We saw a geneticist today as they want to go through all the possible diagnoses again and make sure they have covered all bases.

Thanks for all the continued prayers and words of encouragement.

-Brian

Sunday, May 1, 2005 9:57 AM CDT

Benjamin is about 7lbs, 13oz this morning. He has been up and down on weight for the past few days, needing an additional needle aspiration once for fluid in the chest. He looks much better than he did on Monday though. Both chest tubes have now been removed, since they were not working. His pain meds were switched to morphine earlier in the week, which has been a good change for him I think. Most of the week has been spent trying to find a good balance of fluid input and diuretic therapy to acheive a slow weight loss, trying to get him down to under 7lbs.

The last couple of days Benjamin has had problems with fluid actually in the right lung, requiring higher vent settings and oxygen requirements. Various therapies have been tried with some success.

Ben has been sucking on his ET tube some though, which is a good sign, and has had some awake time here and there where he is nice and calm. Since the switch to morphine he has had less agitation. He may have an infection, they were able to grow a very uncommon bacteria in one of his blood cultures from the 20th. Its hard to tell if the sample was contaminated though, and he may not actually have the infection.

Alex, Kate, and I pray for Benjamin every day and think of him often. His maternal grandfather arrived last night to meet him for the first time, and we are headed up there to visit again this morning. Today is a new day and we continue to have faith that big improvement is coming for Benjamin.

-Brian

Thursday, April 28, 2005 1:25 PM CDT

Today and yesterday Ben has pretty much been status quo from a fluid standpoint. He looks about the same as he did on Tuesday. Although he is not smaller, we are happy he is not bigger. Yesterday Ben was exhibiting signs of some distress in his lungs. This is not uncommon, the question always is what is the cause, fluid or small lung collapse. Ben frequently has small areas of his lung collapse and usually they resolve themselves within 8 hours or so. Because they could not discern if the problem was fluid or not, they decided to assume it was due to collapse and treat with a nebulizer and electric massager. Well, as the doctor said - there was a big no thank you from Ben - on that treatment. Ben required 100% oxygen after the treatment for quite some time. By 9:30 PM the doctors decided to tap his right side to see if there was any fluid they could pull and improve his oxygen. They were able to get a little but lots more leaked out the site for the next several hours.

Today Ben is going to get an ultrasound to see if that will tell them if he has fluid in his chest. His chest tubes have not been draining so the doctors will decide if they should leave them in, take them out and if they should replace them with new ones. Ben could end up having a pretty busy day today, we will have to see. New chest tubes are never fun.

Ben will definitely have a busy week next week. The doctor has decided that we need to look at Ben's brain. It will have been two months and she feels strongly we have to see how his brain has fared through birth and all the trauma associated with his hydrops. This will be on Monday and it is a very difficult procedure for a baby in Ben's condition. There can be no metal in the process so he will be detatched from his drip medications and he will need to be bagged the entire time. MRIs take a long a time so this is going to be very traumatic for him and scarry for us. Although we are nervous about what we may learn, it will be good to have these answers and not have it looming in the background anymore. Ben will get one day to recover then he will be baptised on Wednesday and we will celebrate his two month birthday at the same time (Ben will be 2 months on Tuesday).

Today Ben opened his eyes for me for about a half hour. We had a great time playing and interacting and he really seemed to enjoy it. He has had several stories today as well as some physical therapy using one of his toy elephants and, of course, no day is complete without a few renditions of "this little piggy".

Thank you all for your continued prayers! Today is a new day and anything is possible today!

Tuesday, April 26, 2005 9:50 PM CDT

A few days ago I wrote that "Today is a new day and anything is possible". Last night and today we have seen the fruits of our prayers and hopes. Brian wrote this morning that Ben had lost 60 grams, but that was just the beginning. When we entered Ben's room this morning we were greeted with one of the biggest positive visible changes we have ever seen in Ben - it truly was a wonder to behold! Ben's edema was visibly much smaller than it has been in a very long time. This morning he opened his eyes wide to see us, something he has not been able to do for a couple of weeks. The last few days he had swelled to the point that he could not open them at all. He even opened them at least three times today while I was there - I don't recall ever seeing that before.

Yesterday the doctors took a gamble and went back to a treatment that had worked early on but stopped working for Ben right after his surgery. His edema had reached a critical point and although there was a risk it could make him worse, he could not continue on the course he was on. Miracles do happen - this time the treatment worked and allowed Ben to begin pulling the fluid from his tissues into his vascular space so he could pee it out. Yesterday Ben was extremely swollen and his oxygen needs were at almost 100%. In the evening it was discovered that both of his chest tubes were clogged so from 4-7 PM he had two new chest tubes inserted as well as a larger ET tube. The ET tube was necessary because he has grown in the last 8 weeks and the old tube was not large enough and oxygen was leaking around the tube and not making it to Ben's lungs. Once he received the new chest tubes and the new treatment which began at about 8 PM, fluid just starting pouring out of him everywhere! At midnight he had lost the 60 grams Brian wrote about this morning but that was only the beginning. By 8 PM tonight he had urinated over 700 ml and at least 500 ml had drained from his chest tube sites. I can't wait to see what he weighs in at tonight when I call and I'm hoping to see Ben looking better tomorrow!

This has been a truly wonderful day! God is hearing all of our prayers and last night's transformation was truly miraculous. I am amazed every day when I read the guest book just how many people are praying for Ben and sending him strength. I wish all of you could have seen the difference between yesterday and today! Although you cannot see it I hope you can revel in the progress with us and that I am able to convey the amazing effect all of you are having on our family and especially on Ben! We thank you so much for your prayers and for words of encouragement!

Tomorrow is a new day and EVERYTHING is possible!

-Kate

Tuesday, April 26, 2005 8:08 AM CDT

Benjamin gained 55g the other night and lost 60g last night. So he is about 8lbs, 7oz as of midnight. We are very hopeful for a big weight loss tonight as the report this morning is favorable. His nurse thinks he looks less puffy today and he has a lot of urine and chest tube leakage since midnight.

Yesterday afternoon he was in some respiratory distress, needing 100% oxygen on the vent. His chest x-ray looked bad and his chest tubes were not draining. Both chest tubes were replaced and he was reintubated with a larger breathing tube. Albumin has been restarted every 6 hours to go with the Bumix diuretic, and we are hopeful that it is working this time.

So we are happy this morning, and give thanks that so many people have been touched by Benjamin's story are out there giving him their love and compassion every day.

-Brian

Sunday, April 24, 2005 8:48 AM CDT

I'm afraid there really isn't much to report. Friday to Saturday Ben only gained 20+ grams - in his world that is akin to status quo. After speaking to his doctor and seeing the very low weight gain I was very heartened that we may have reached a state of stabilization that could lead to eventual recovery over time. Unfortunatley I am still prayig for that state. At weigh in last night Ben gained a great deal of weight (well over 100 grams) despite being given an additional dose of diuretic from the day before. They have added yet another dose of diuretic daily after last night's weigh in so we can hope that today is the day Ben will begin to lose weight. Ben's nurse also pulled blood from his stomach via a feeding tube which is very concerning. Ben's oxygen needs are increasing and more pressure is needed to expand his lungs due to the stiffness and heaviness of chest from the swelling. We are doing our best to stay positive and help Ben fight and continue to pray that we will see the first signs of improvement.

On a more positive note, yesterday was a break from the downward plunge of the roller coaster and it felt good to be encouraged. Yesterday Ben's grandmothers got to hold him for the first time and feel the weight of their grandson in their arms. Ben even opened his eyes just a tiny bit (all he was able) to see who was holding him. He was much more responsive than we have seen him in several days, moving and kicking without looking distressed. The past few days Ben has been sleeping all day and wasn't responsive to us. Yesterday he wanted attention. When he wasn't spoken to directly his heart rate would increase dramatically but as soon as you spoke directly to him his heart would slow to a more calm state.

Every day is a new day with new possibilies. Although Ben gained a lot of weight yesterday, today could be the day that he begins to turn the corner and lose weight. We pray many times each day that this will be the day that God will make Ben better. I am heartened every day when I look at the guest book and read all of your inspirational words and realize just how many people are pulling and praying for Ben. All of your comments are a source of inspiration and are so instrumental in helping us stay positive when our hope starts to waver. We have to remember that although we found out about the weight gain this morning, it actually happened yesterday and that today is a whole new ball game and anything is possible today. -Kate

Friday, April 22, 2005 10:30 AM CDT

Benjamin has not progressed much in the 48 hours since our last update. His diuresis has slowed and he has gained almost 200 grams the past 2 nights. His face is very swollen with fluid, I doubt he can open his eyes. Ben's vital signs are still good, using oxygen in the 25-35% range, heart rate has lowered to 130-170, BP has been more stable. He has required more fluid to keep the BP stable though, and more pressure from the vent to breathe due to the edema. Hopefully now that his intervacular fluid balance is somewhat better he will urinate better and the lymph system will figure out how to handle the excess fluid in his tissues.

It has been a difficult couple of days, seeing him this morning look more like the baby in the first pictures. Ben has not been very agitated, Kate and I each got to hold him yesterday, and the plan today was for Kate to be holding him about now. He has tolerated this well.

Thanks for all the continued prayers and support.

-Brian

Wednesday, April 20, 2005 10:50 AM CDT

Its been an eventful couple of days in Benjamin's world. Though difficult for him, it may be that we are seeing some improvement. Hard to tell for sure. The basic message we got on Monday was based on a lot of factors obviously, but focused some on his edema and lack of response to diuretics. He is now responding to the diuretics in a big way, which yesterday evening caused him to get extremely low blood pressure on several occasions. From about 4:00 PM to midnight was a rocky road of saline flushes, a blood transfusion, vast increases in BP meds, increase in pain meds, heart rate, agitation and discomfort for him.

Since midnight, he has done very well, needing half the diuretics to produce 2-3 times as much urine. His BP meds have come down, oxygen needs and vent pressures have come down, BP has normalized for the most part, and he appears less uncomfortable and slightly less edematous.

Luckily we missed the call last night so were not aware of much of this until I went to the hospital around 8:00, when he was over the worst of the problems. To a certain degree, I think we expected this may happen as it is similar to what happened the first time when he began responding to diuretics. We hope it leads to improvement in his edema as it did back when he was only a few days old.

On the other side of the coin, his heart rate is still quite high, probably due to being "intervascularly dry", less fluid in the bloodstream. This is how babies compensate where as adult hearts just squeeze harder when low on fluid. Also, his chest tubes have stepped up output again, around 240mL yesterday and the same path today. Most of this is actually leaking around the tubes rather than flowing through them, which we don't really like but at least it is coming out and not staying in his tissue or pleural space.

They stopped feeding him yesterday morning as he was not tolerating it, vomiting and having residual amounts of food in his stomach most of the time. He lost 85 grams when weighed Monday night, gained 85 when weighed last night, but that was around midnight after all the saline flushes and blood transfusion, so we are hopeful for a big weight loss tonight.

We are pretty positive overall today. Monday's message focused on the edema. The doctors admitted at the time it might just be due to surgery, malnutrition, and lack of movement due to the fentanyl drip. It still may not be an incorrectable metabolic problem for him. We just don't know. Since it has been almost 7 weeks, and had been several days without good response to therapy, the medical team felt we should prepare ourselves for the likelihood that it may not be correctable and he may be getting worse. Part of their role is to prepare families for the worst if they suspect it. While that is still very possible and he is still extremly fragile, Benjamin is responding to the therapy today. Edema is not the only thing he has to conquer. But there are other treatments they can use for the pleural effusions, he may well tolerate food better in a couple of days, and if he can beat the edema he has a much better chance of being extubated.

So we remain hopeful. Thank you for the many positive messages so many of you have left us the past couple of days and throughout this ordeal. We do thank God for Benjamin every day, and give thanks that there are so many compassionate people who keep him in their prayers and who send him positive spritual energy.

-Brian

Monday, April 18, 2005 8:31 PM CDT

Today was one of the days you dread as a parent of a sick child. We were told there is nothing more they can do for Ben medically that they are not doing now. There are no more tricks, drugs or procedures they can find to make him better. Today was the day we were told that we have to prepare ourselves that he may be getting worse and that he may not survive. No one has said out loud since his birth and the first days following that Ben may never come home. To hear it was the most painful thing I have ever heard in my life.

By no means are the doctors and nurses giving up on him. They, as well as us, will continue to monitor him closely and treat him appropriately. Unfortunately his prognosis is not good at this point.

Ben's body is not able to process fluids correctly. Instead of moving fluids through the vascular system so they may be evacuated via urine, he leaks them into his soft tissue causing edema. Ben has been gaining weight and is getting puffier. Right now he has at least a pound of excess fluid sitting in his tissues. The doctors say that if this continues it will lead to more fluid infiltrating his lungs. They consider any day that his edema stays the same to mean that Ben is worse. If this continues and he cannot correct it himself, he will not survive. Ben is receiving the highest dose of the strongest diuretic available but he is not responding to it the way he used to. Since they do not know why his bloodstream is so leaky, the have no idea how to fix it. His pleural effusions have improved but his tissues appear to be leakier than they were before.

We have been told that it is now up to Ben. Since they can do nothing else to get rid of the edema and they don't know how to make him less leaky, he has to do it himself. Now we pray harder than we ever have before. We have to remember that Ben is a fighter and defied all odds just to live the first night and he has continued to defy the odds and stump the doctors. There is every reason to believe that he can do it again and heal himself. Ben is nothing if not a medical mystery and it would be very in-character to defy the odds yet again and leave them shaking their heads.

We are now peforming more of Ben's cares - changing diapers, taking his temperature, etc. and I was able to hold him for over an hour today. We are continually telling him that we believe in him and that we know he can get better! We truly believe in his ability to fight and we are not giving up! I can't bring myself to beleive that we would have defied all of these odds and fought so hard for nothing.

Thank you all for your prayers and your words of encouragement - God can't possibly leave this many prayers unanswered!

- Kate and Brian

Sunday, April 17, 2005 8:56 AM CDT

Benjamin is doing a little better today. He has remained quite edematous over the weekend, but lost a little weight this past day after gaining the previous day. Yesterday he digested just over an ounce of formula for the day! Hopefully he can continue to improve on that day to day, we are already off to a good start today. He is on a high dose of stronger diuretic, and they restarted dopamine last night as well to further the goal of reducing the edema in his whole body. The attending neonatologist is most concerned about his edema for now. Ben has been needing higher vent settings and oxygen was pretty high last night (40-50%) when they decided to go back to the dopamine. Hopefully he can tolerate being taken off the Fentanyl drip today and going back to a shot of it every 4 hours. This will help him move around more and hopefully get the fluid off him better.

Of secondary importance is the chest fluid, believe it or not. They removed a tube on the right yesterday and the other 2 only drained about 60mL all day. Today they may restart the suction on them though, depending on how his x-ray looks. The big question is how will the food affect his chest fluid? Its basically been the reason he has been TPN (IV nutrition only) for the past 6 weeks, because food can exacerbate pleural fluid. So we shall see.

Obviously, Benjamin is in our thoughts pretty much constantly. We try to balance time at the hospital and time with our other son, Alex, as best we can. We call for an update from Ben's nurse every few hours that we are not there. I don't know if its easier or harder having "goals" for him. It gives us something to cheer for since its hard to interact with him much, but it is tough when there isn't much progress. Gotta keep thinking that he is only a few days past major surgery and that has to have a profound effect on him.

Friday night, I got to hold Benjamin while his bed was being changed. We are trying to be more involved with his care now. I guess we didn't realize there were some things we can do even in his condition. So we also got to give him a little washing, put some lotion on his skin, and change his diaper on Friday. We're going to try to get a nightly routine together that we can be a part of.

-Brian

Friday, April 15, 2005 7:16 PM CDT

Benjamin has been able to digest 13mL of fluid today, so not too bad. He has been pretty stable and quiet, the Fentanyl drip keeps him quite sedated. This morning they turned off suction on his chest tubes in anticipation of pulling at least (and probably only) one of them tomorrow. They want to keep one in each side for now in case the food causes more effusions.

We had a good long talk with some of his doctors this afternoon. The big issue for Ben right now is his weight is too high due to his edema. His diuretics were changed today and a catheter inserted to help drain more urine. Hopefully that will bring down the weight some, which should in turn help get his vent settings more toward a point where he can be extubated. Along with that we reallhy hope he can keep eating real food.

Ben is also extremely vulnerable to infection right now due to his suppressed immune system and the loss of lymphocytes in his chest fluid.

Thanks for all your continued kind words, prayers, and support

-Brian

Thursday, April 14, 2005 5:37 PM CDT

Benjamin is doing pretty well today. No news on the pathology of the lung biopsy, it is being sent to other experts for consultation and additional tests are being done. We will now probably not hear until next week :/

He still has all three chest tubes as of right now, but has drained very little in the past 18 hours, which we hope is a good sign. 44mL out of the left in that time, 8mL and 14mL out of the right tubes. His chest x-ray looks somewhat hazy, with maybe a small area on the left that the tube has been unable to get (not a big deal)

They tried to feed him again today but he was unable to digest anything. The hazy x-ray, lack of digestion, and low chest tube output may all be somewhat related to the post-op recovery. Also, the feeding problems are probably directly related to the Fentanyl drip they had to put him back on for pain after the surgery.

So we are in a bit of a holding pattern here, probably for a few days. We hope in the meantime he goes down on the pain meds and can successfully digest the special formula they are giving him. They probably will not pull the chest tubes for a while yet, they want to make sure when he feeds it does not create more effusions.

On a positive note, I got a call from my friend Mike Howe yesterday with some great news - a perfect donor match has been found with umbilical cord blood! Mike will probably have the BMT in about 4 weeks, at the University of MN. They have had great success with this type of BMT in leukemia patients and we are very hopeful for Mike and thankful that a match was found. For those of you who did not know (myself included since about 9 months ago) the Red Cross has an umbilical cord blood bank that is free. Mercy Hospital in Coon Rapids is one of the 2 hospitals in the Metro where it is collected.

Thanks

-Brian

Wednesday, April 13, 2005 7:45 PM CDT

Today was quiet day for Ben. He is on lots of pain medication but he did open his eyes for a little while before I left this evening. We still have not heard anything from the patholegist yet, we should have some information tomorrow. We will update when we know. Thank you all for your prayers and thoughts!

Tuesday, April 12, 2005 5:59 PM CDT

Benjamin's thoracotomy surgery went well today. The surgeon took a small piece of lung tissue for biopsy, placed 3 chest tubes, (2 one the right, 1 on the left), and did a partial pleurectomy. 50 ml of fluid was removed from the left side and somewhat less from the right, which was the side where the surgery was performed. There is a small air leak that should resolve in a couple of days and be taken care of by one of the right side chest tubes. Benjamin is heavily sedated and resting in about 40% oxygen right now. The chest tubes are a larger gauge than the previous ones, and are going to be more uncomfortable for him.

The lung tissue did not look too bad for the most part. There was a part of the lung that appeared characteristic of atelectisis, pnemonia, or BPD (chronic lung disease). However, the pulmonologist said that there did not appear to be enlarged lymphatics characteristic of lymphangiectasia or some other nasty congenital problem. He stressed that this info is very preliminary, it has not been examined under a microscope yet. Cultures have been sent to search for viral and bacterial problems - results may be some time on those. The tissue is being prepared for examination and preliminary results should be available tomorrow afternoon.

The partial pleurectomy is basically a form of pleurodesis where the pleural tissue itself is removed. The hope is that the lung will adhere to the chest wall, effectively denying space for fluid to form and compress the lung.

While the chest tubes are painful for Benjamin, they are necessary for the drainage of his pleural space to help his lungs. We are very hopeful that the right side tubes will be out in a few days as there hasn't been much accumulation there for several weeks, and the pleurectomy may prevent more fluid from accumulating. Any time a thoracotomy is performed chest tubes are inserted, regardless of the reason for the procedure. The left side chest tube we'll just have to see how much it drains. Hopefully less slowing to none soon. If not we could see this same procedure on that side in a week or two, depending on how successful it ends up being on the right and what they are able to make of the lung biopsy.

We are very happy with what the surgeon and pulmonologist had to say after the surgery, we think its a pretty good sign that less of the lung tissue was compromised than originally suspected based on the CT scan. Benjamin's respiratory status should get better over the next few days, and the Neonatologists want to start feeding him again this week!

Just before surgery, Benjamin opened his eyes and had a great conversation with Mom, Dad, Mimi, and Grandma. It was a bit four sided though, he didn't say much ;) He was calm and we got the chance to tell him how much we love him and how proud of him we are. Tonight his nurse is going to keep him comfortable and sedated. Its been a stressful couple of days here at the hospital, with a lot of prayers said for him. So far so good though.

The comments in our guestbook have meant so much to Kate and I, we read them every day. Thank you so much for all the prayers, support, and love so many of you have shared with our family.

-Brian

Monday, April 11, 2005 8:20 PM CDT

Today Ben had a CT scan of his chest. Since his effusions have continued for almost six weeks, he is now outside of the range of normal for a Hydrops baby. The doctors felt it was time to take a look at his lungs to see if it would give them any clue as to what is causing all of his leakage. Although the CT scan itself did not show us anything specific, it did show that there are problems with Ben's lungs. I was told today that they were "structurally abnormal". What this means, we still do not know yet. Tomorrow Ben will go to surgery to have a biopsy taken of his lung tissue. In addition, they will put a new chest tube in his right side which now seems to be accumulating more fluid than the left. It is possible, based on what the lung and plural space look like, the surgeon may decide to perform a pleuroldesis where the wall of the lung is adhered to the wall of the chest. This is a possible therapy to stop the leakage of his tissues into his plural space. The decision will not be made until the surgeon can look at the lung tissue.

The lung biopsy may or may not show us much, but there are some pretty bad causes of effusions that they want to rule out. There are congenital defects of the lymph system that are not curable that they want to rule out. The doctors feel, based on the what they saw on the scan, that the lung issues are caused by either a congenital lymph defect (highly rare and VERY bad), viral or bacterial infection or chronic lung disease. A viral or bacterial infection may be tough to spot, especially if it is viral since you can't test for a viral infection. They have begun a regiment of antibiotics just in case it is a bacterial or viral infection. Chronic lung disease is a scarring of the lung tissue due to long term intubation. None of these can be diagnosed from a CT scan so they need a piece of the lung to see exactly what is causing the "structral abnormaliy". In addition, the surgeon will be able to view the lung during the procedure to see how the lungs look and how much of what we saw on the scan was actually due to unusable lung versus fluid. Ben has quite a bit of fluid today so it is possible the CT scan looks worse than it really is.

The next few days are going to be a very scary time for our family. Aside from the fact that Ben is going to have chest surgery tomorrow, it will take time to get the results of biopsy and a possibility that the results will tell us that Ben will not get better. Now more than ever we need your prayers and positive thoughts! How ironic that Ben will be undergoing surgery on the very day the C-section was scheduled to bring him into the world.

-Kate

Saturday, April 9, 2005 2:14 PM CDT

Sorry for not updating for so long. Benjamin has been without a chest tube for 5 days now, which is wonderful. On Wednesday night, he showed signs of respiratory distress and had to be needled for chest fluid on the left side. After the thorocentisis (basically, stick in a needle and draw out fluid) he did much better for a while, even though not much fluid was withdrawn. He lasted another 48 hours or so before needing another thorocentisis last night on both sides. A bit more fluid came out this time, and is still leaking out the dressing site. This morning he is back to room air oxygen and low vent settings. He had a chest ultrasound the other day which showed very little fluid and only one pocket of loculated fluid that has been there for some time on his lower right side.

So what has been going on we wonder? So do the doctors. Ben has also gained about 13 ounces in the past few days, and is definitely a bit more edematous. Even if we consider the 13 ounces mostly fluid gain, this amounts to much less per day than what was coming out of his tube each day last weekend. This morning I think we had a pretty good meeting with the doctors and its possible with closer monitoring of the albumin and carnitine in his blood (he has been dificient in both) the leakage may be controlled. He is on a regimen of higher carnitine in his TPN, and will get four daily doses of 25% albumin shots and Lasix for a diuretic. We are very hopeful that this regimen will begin to slow the pleural effusions and the obvious edema in much of the rest of his body.

Since the chest tube was removed on Monday, Benjamin has had a surgery and more edema, so has required more pain and sedation medication. We have not been able to hold him for some time as he has been very sensitive to touch. Perhaps tonight or tomorrow we might be able to. Ben will be in the hospital at least another month to wean from the Fentanyl, among many other things he will need to do. He will get a plan for physical therapy soon and we hope to be able to help him do some "baby calisthenics" to help his muscles grow. Last night Kate got to change his diaper for the first time!

So overall we think things are looking up a bit but its hard to say for sure as often times new information comes up or Benjamin does something to surprise us. The basic issue is the fluid in his body and until it is resolved its hard for us to gauge real progress. Without chest tubes, its hard to tell how much is actually coming out. If the regimen they are putting him on does not work he will probably get tubes in each side so they don't have to keep sticking him with a needle every couple of days.

Monday night - new pictures. I will make a commitment to get them up. Thanks for the continued support and prayers from so many of you, they mean the world to us

-Brian

Wednesday, April 6, 2005 8:56 PM CDT

Ben is doing pretty good today, still no chest tube for 2.5 days now. He has been needing higher pressures on the ventilator and needed oxygen percentages usually in the low 30's, but they have not had to adjust vent settings at all. Benjamin is very sensitive today to stimulation, occasionally having little panic attacks that make him fight the vent and struggle to breathe. Usually this happens during his cares every 4 hours - they have to listen to his chest, change his diaper, suction his ET tube, and change his position.

Some of it is that he is becoming more alert and angry about being disturbed like many babies do when they are very young. Some of it is also due to the effusions still in him, which appear to be more loculated, or cut off from each other in the chest cavity. He is definitely a little more puffy in the face today, although his lower body looks better. The loculated effusions are the body's natural response to try to reabsorb the fluid, but they present a challenge to treat since they are more difficult to drain.

Ben still is without a chest tube and is definitely doing some healing. So we are thankful for that and hopeful his condition continues to improve.

Thanks for all your prayers and support.

-Brian

Tuesday, April 5, 2005 6:58 PM CDT

Today has been a good a day for Benjamin. Ben is now 33 hours without a chest tube and continuing to do well. We measure that he is doing well by his O2 needs and his oxygenation. His O2 has been sitting in the mid twenties to low thirties (21 is room air) and his oxygenation has been between 85-95% (the higher the number the better). When he is full of fluid his oxygen needs go up and his oxygenation goes down. We are still trying very hard not to get too excited since it is still highly likely that he may need the chest tube again in the near future. However, it is a definite sign of progress that he has been able to last this long without one. It does tell us that he is either producing less or his body is reabsorbing more of his fluids than he was four days ago. Even if he does need the tube later on, he is in a better place now than a few days prior. . All we can do is wait and continue to hope and pray that he is able to continue healing himself

Ben came through Broviak surgery beautifully, he even opened his eyes and looked at me shortly after the procedure. He looked comfortable and received extra doses of pain medication to ensure that he would sleep well the rest of the day and continue to heal.

Ben has been very irritable with being touched the last couple of days. Even a simple diaper change has sent his blood pressure sky-rocketing today - a clear sign from him that he is annoyed. It almost seems as though he is concentrating so hard on healing himself that he cannot tolerate any interruptions. Those of you who know Alex well know that he is someone who needs to think about things a while. Well, I hope that Ben is exhibiting similar traits. After a month he has finally decided that yes, he has been born and no one asked him first but he isn't going to get to go back in so he might as well get better and start life in earnest.

Thank you all for your continued support and prayers! They have helped us and Ben tremendously!

Monday, April 4, 2005 8:35 PM CDT

Well, all fingers and toes crossed - Benjamin is still without chest tubes as of 7:30 PM, 10 hours after his tube fell out. We are trying not to get "irrational exuberance", but are feeling pretty good tonight. His oxygen needs have been stable, and he has had a very quiet, sleepy day. The exact kind of day we have been praying for. Most likely he will still need the chest tube in the near future, but the longer he does well without it, the better.

The past 10 days have been difficult for our family, almost without exception. Many of you know some of the people I am going to talk about next so I hope the rest of you don't mind my passing along their stories and info in this space.

The Thursday before Good Friday we found out my cousin Corey's baby was about to come, at 26 weeks gestation. Rachel was on bedrest at United, across the hall from Benjamin. Sophia Rose Baum was born the following Tuesday, and is a neighbor of Benjamin's at the Children's NICU. She is doing well, and her parents have set up a Caring Bridge page accessible from the following link for more details.

http://www.caringbridge.org/mn/sophiabaum/

The next day, I found out my good friend Michael Howe's leukemia remission ended. He started chemo this week and will need a bone marrow transplant. His prognosis is good but a transplant will be necessary in the near future.

Many of you have asked what you can do to help Benjamin and our family. We are very thankful that we have such wonderful people in our lives who truly and sincerely want to share their time and love with us. Its difficult to pinpoint what helps the most. Our parents have been there for us every minute and helping a ton with Alex and around the house. Benjamin receives around the clock care now from the NICU, although there may be more challenges for us when he comes home.

Mike however, badly needs a PBSC donor. With advances in technology, they essentially take blood out of one arm, spin the stem cells out of the blood, and then give your blood back in the other arm! No more surgery! Getting registered as a bone marrow donor is relatively easy, it just takes a blood draw. You can call Memorial Blood Centers at 612-871-3300 for locations and scheduling. Karen Uhrig is the Marrow Coordinator through Memorial and is also available to answer your questions at 612-871-4617. Please designate MICHAEL HOWE as how you heard about the program. It may cost $25 to register, although I heard there is a "coupon" in Family Circle magazine. BMT info is here: www.marrow.org

Thanks for reading and keeping us in your thoughts and prayers.

-Brian

Monday, April 4, 2005 1:00 PM CDT

Benjamin is resting comfortably this morning. He did have a new clog and got a new kind of chest tube inserted last night around 8:00 PM. This time they tried a straight tube, and a harder plastic. The new tube did not drain well, only about 25mL in 14 hours. However, that may actually be a sign of improvement, as it was a thicker gauge tube and it was not clogged. We know that because this morning around 10:00, they turned him onto his right side for an X-ray and the chest tube came out. His X-rays show that perhaps there is not much effusion on the left side, so they are leaving it out for now. Some air got in, causing a small pneumothorax. His right side showed issues this morning, as did his blood gas. But it appears that he is working on absorbing the fluid, which is a good thing.

So many changes in such a short time. Also, they need to send him to surgery tomorrow to place a new venous catheter to administer his nutrtion IV. He has run out of good veins for them to use, and they can only leave PICC and peripheral lines in for a couple of weeks at most. So the surgery thing is scary, but probably pretty safe. We have yet to talk to the surgeon and anesthesiologist though.

We are waiting and praying fervently that he is indeed getting better. At the same time, trying not to get our hopes up too high and be disappointed again. Most likely he will need the chest tube again. They are going to closely monitor his oxygen needs, lung sounds, and other stats today (well, even more closely than usual I guess). They will not wait for the chest x-ray to show effusions because that can often not show the problem for 24 hours after it started being a problem.

He was stable the first 2 hours without chest tubes, in 25% oxygen, so we keep hoping that keeps up. Even if they have to put it in again tonight or tomorrow that still is a sign of great improvement.

Sunday, April 3, 2005 2:41 PM CDT

Today has been a roller coaster for us. Benjamin was extubated this morning and did very well at first, but ultimately needed to go back to the mechanical ventilation about 4 hours later. He worked very hard at breathing and we are very proud of him. He had trouble falling asleep and just got too tired.

It was wonderful to hear our baby cry for the first time on his 1 month birthday. Unfortunately its a sound we won't hear again for a little while.

His chest tube continues to drain a great deal of fluid from his pleural space. Last night it clogged again and needed to be flushed with the TPa drug. If it happens again they will put in a bigger gauge tube. The new tube will be straight, not pigtailed, and not as flexible, so it will not be as comfortable for him.

We will continue to pray for him and comfort him as best we can, trying to be patient for the better days we know are ahead. Thanks

-Brian

Saturday, April 2, 2005 6:51 PM CST

Benjamin's status is pretty much the same today, his chest tube clogged again last night but they were very quick to administer the anti-clotting drug. The drug goes right into the chest tube and worked pretty quickly to dissolve the fibrous material and get it flowing again.

The amount of drainage is still high, but its hard to really figure it because of all the mechanical issues with his chest tube system the past 4 days.

They may still decide to take him off the ventilator tomorrow morning, we will see. Oxygen use continues to be in the 25-30% range, which is good. Kate got to hold him for about an hour today as well. Last night his nurse took some pictures of him with his eyes open, we'll get one of those put up on the site here early next week.

Thanks for your continued prayers and support for Benjamin.

-Brian

Friday, April 1, 2005 4:43 PM CST

The last couple of days have been another roller coaster ride, something that we will have to get used to. Yesterday afternoon Ben's new chest tube began to clog. By 3 AM this morning it was barely draining, causing Ben's oxygen needs to go up dramatically and his body to retain a great deal of fluid. This morning Ben was very edematous and likely did not get all of the fluid drained that had built up from last weekend. Although the possibility of replacing the chest tube yet again was discussed the doctors were able to try a drug, TPG, that breaks up fibrous clots. Happily, this effort was successful although Ben did not react well to the treatment. His oxygen saturation became very low at times and he had to be bagged a few times while we were waiting for the medication to go through his body. Since the chest tube was turned back on Ben has been draining very well. We are hopeful that this will continue but there is no guarantee that he will not develop another clot in the tube in the near future. The good news is that everyone learned from last weekend's episode and this time the chest tube clog was recognized much quicker. The doctors have learned specifically what signs to look for in Ben to when his chest tube is starting to clog. This will allow them to address the issue sooner and keep Ben from building up so much fluid.

Depending on the chest tube drainage, they may still attempt to extubate Ben on Sunday. At this point we are just hoping that his tube stays clear so that he can continue to drain through the weekend and have a weekend of healing. Extubation would be nice but it is not as important as the chest tube drainage.

Although it was a tough day for Ben, he did have his eyes open for about 45 minutes this morning. I spent much of that time talking to him and he squeezing my finger with his little hand. He is a tough little boy and continues to fight and cope with his condition every day. Now that he has drained a lot of the excess fluid I guarantee he feels much better now than he did this morning. Please keep the prayers going that Ben will be able to stop his effusions on his own soon so that he won't have to battle with the chest tubes anymore. Thank you for keeping Ben in your prayers and for all your continued support!

Thursday, March 31, 2005 7:12 AM CST

Happy 4 week birthday Benjamin! Yesterday Benjamin got a new chest tube in a new location. The other one was pretty well clogged and fluid was building again in his pleural space. Although it was very painful for him, it was definitely necessary. In the 16 hours or so since the procedure was completed, he has drained about 350ml of fluid out and is much more comfortable.

Last night when I went to visit him, he opened his eyes and looked at me for a good 30 minutes or so. It was wonderful to talk to him and see him react calmly to my voice and the touch of my hand on his head.

As for extubating him, I think the doctors are leaning towards not doing that for a while, and hoping to see chest tube drainage reduce (for the right reasons - not because it is builing up) first.

Ben has been growing some good growth too, he is up to about 6 pounds now.

The wonderful encouragement and support our family has received these past four weeks has really helped us keep the faith and be positive for Benjamin. He is definitely in a much healthier place than he was a couple of weeks ago.

Thank you!

-Brian

Tuesday, March 29, 2005 9:08 PM CST

I got to hold Benjamin today for the first time, which was very nice. He was very calm tonight, and even looked at me while I was holding him. New pictures are posted from yesterday if you haven't checked them out yet.

Not too many changes for Benjamin, his oxygen is down nicely in the 20's. Chest tube drainage continues.

Thanks!

-Brian

Monday, March 28, 2005 7:41 PM CST

Today was as wonderful a day as yesterday was difficult. After yesterday, I went to the hospital this morning with trepidation. Although I had prepared myself for a tough day, I certainly was not looking forward to it. I could not have been more surprised when I walked into his room and saw Benjamin sleeping peacefully and his nurse telling me that it would take about 20 minutes for her to complete the preparations for me to hold him!

I waited three weeks and four days for the moment that I could hold my child and it was worth every second of the wait! The nurses gathered his tubes and taped his ventilator tube to my shirt and I held my little boy for the first time settled on a pillow on my lap wrapped in a blanket. It was one of the most glorious experiences of my entire life! Benjamin was so peaceful as I held him. They made no promises as to how long the session would last, it depended entirely on how Ben tolerated the experience and how his stats looked. Ben not only tolerated it, he thrived on it ! As soon as he was placed on my lap he nestled into a comfortable spot and slept peacefully. His oxygen needs went down to a level they had not been for several days and his blood pressure, saturation and heart rate stayed just where they needed to be. Ben knew that this is where he belonged and we cuddled for an hour and a half! He was absolutely beautiful and Ben, Brian and I had our first glimpse of what it will be like to be a family when he is well enough to go home.

I can't describe the range of emotions the last two days have brought. Yesterday began with hope and excitement that Ben would be extubated and quickly distingrated to feelings of helplessness and pain as I watched my baby cry silently for a solid hour uable to pick him up, cuddle him or ease his pain. Yesterday's tears were replaced with euphoria today as I was finally able to cuddle Benjamin and let him feel through touch just how much he is loved.

Benjamin slept peacefully all afternoon after our cuddle session without the need for extra doses of sedatives and pain medicine. I like to believe that holding him provided as much healing for him as it did for me. When I asked what prompted finally being able to hold him his Resident said, "We decided it had been long enough". Tomorrow will be Brian's turn and I can't wait for him to have the same wonderful experience that I had today. For now Ben can have one session per day and when he is finally able to shed his chest tube we will be able to go to two.

The last time Ben had a truly bad day it was followed by three days of amazing recovery. We hope and pray that this will happen again. His oxygen needs are back where they were - he is breathing room type air - and his chest xrays are much improved. We won't be able to tell until tomorrow if he has reduced his chest tube output. Since this is currently his most important battle, we are keeping our fingers crossed that we will start to see the output reduced tomorrow and his oxygen needs stay where they were today.

Please continue your prayers and I thank you for them from the bottom of my heart! They made this glorious day possible!

Sunday, March 27, 2005 9:35 PM CST

Benjamin appears to be resting comfortably tonight, using about 38% oxygen. Today was a difficult day for him and those of us around him. This morning his care team decided not to extubate him, as his chest x-rays had been looking worse and his oxygen use was avergaging in the 40% range since Friday night.

Around noon, he appeared very uncomfortable, and another x-ray was ordered. While positioning him for the x-ray, his ET tube slipped down a bit and his SAT's dropped to the 30% range, heartbeat down to the 70's. Kate and I were standing outside his room as about a dozen people came scurrying to his room to the sound of the emergency alarms going off. Needless to say, we were very scared. Luckily it resolved quite quickly, and the chest x-ray showed the ET tube had slipped downward inside him and his pleural effusions had continued to worsen.

Later this afternoon they discovered a problem with his chest tube that explained the ever slower flow of drainage over the previous 36 hours or so. What we had hoped was the beginnings of resolution of the pleural effusion problem was instead causing him problems internally. They were able to resolve it and the flow of fluid is much more brisk again.

Its harder in some ways now that he is more alert and aware of his surroundings. We can see him scrunch up his face and cry, but hear no sound, and cannot pick him up to comfort him. This evening the nurse (probably wisely) told us we should just let him be, and not talk to him, sing to him, or touch him. He needs the rest and had been resting comfortably up to the point we came in and started to interact with him a bit. Eventually he settled down with us sitting silently by.

They will do another chest x-ray in the morning and hopefully the chest tube will have done its job and cleared him out more by then so that he is in the 20's again for oxygen. Although it will probably take longer than overnight. And so it goes and we wait...hoping that with time, love, wise care, and prayer he will overcome these problems.

Thanks.

-Brian

Sunday, March 27, 2005 9:45 AM CST

Happy Easter!

Steady progress the past few days on lessening the drainage from Benjamin's left side, which is great news. Unfortunately his oxygen use has been up somewhat, so they are going to wait on the extubation (most likely). Which is disappointing emotionally for us, but its probably better for him to wait until he is really ready.

Benjamin has been much more alert the past few days, even gracing us with his beautiful eyes for almost 40 minutes on Friday night! He was mostly calm as well, studying his surroundings. Every four hours or so he seems to wake up a bit.

His Fentanyl is down to about 10% of what it was a couple of weeks ago. He is still on IV feeding since fluid in his stomach tends to exacerbate the chest drainage issues. I hope that he can come down on oxygen use soon so they can try to extubate him, its been hanging around 40-50% the past few days and I think they want to see it under 30% ideally.

Thanks for your continued support and prayers this month, it has been a tough one. We wish all of you a very happy Easter.

Thursday, March 24, 2005 4:58 PM CST

Today was a very good day for Benjamin! This morning as I arrived they were taking out his right chest tube. Since we are told that the chest tubes are his major source of pain, it is wonderful to at least have one out. This also reduces a possible source for infection, something the doctors worry about when the chest tubes are in the baby for a long period of time. Later in the afternoon, Ben also woke up and looked around again today. He seems to be waking up more at the end of his fentanyl dose and opens his eyes much more. It's wonderful to see his lovely eyes drinking in his surroundings!

Ben's left side is still pouring out quite a bit of fluid, but we are hopeful that he simply needs to heal one side at a time. He has dramatically improved his right side healing the hole in his lung and reducing the effusions to the point that his chest tube could be removed. Now he will have two days of rest and healing. Tomorrow he will begin a steroid treatment for 48 hours to reduce swelling in his windpipe. On Sunday they will attempt to extubate him again. The doctors feel the first attempt was likely not successful due to swelling so they are hopeful that the steroid treatment prior to the next attempt will allow for a better outcome. Keep your fingers crossed - it would be great to see the tube come out and stay out!

Today Ben is three weeks old and he looks better and better every day. It is astounding to look at him today and realize how far he has come in the past three weeks. I can't thank all of you enough for your prayers and your words of encouragement, they have made the difference for Ben and for us to be able to enjoy his three week birthday!

Thank you all so much and hope and pray with us that Sunday's extubation is a success!

Wednesday, March 23, 2005 8:32 PM CST

Benjamin is resting comfortably tonight. They may remove the right chest tube tomorrow as it has been draining very little. The left tube has been draining more though, and its becoming more chylous (different chemistry, not great but not terrible). That and a lack of bowel sounds meant they had to discontinue his tube feeding in favor of IV based nutrition again.

So not the best of days today, but not bad really. He is now getting Valium instead of Ativan, still getting the chloral hydrate for addtional sedation, and getting some fentanyl still.

He's a special little guy though, and he'll keep fighting. His doctors will want to continue to conservatively treat the chylous drainage from his left chest, hoping it will start clearing up in a couple of weeks. So we'll keep hoping and praying for that outcome.

Thanks.

-Brian

Tuesday, March 22, 2005 8:54 PM CST

Benjamin is resting well tonight, taking 6mL of food at a feeding and digesting it all as well. Blood gases and oxygen use are good. So good things there. It appears the air leak issue may have resolved as well. Still sending out a lot of fluid from his left side every day, no real tapering off of that. They may condsider clamping off the right one soon as a trial though, since minimal fluid is now coming through there and no more air.

Kate and Sue had a bit of a long day at the hospital, they tried to extubate Benjamin but it didn't quite go as well as they had hoped. Notice I said hoped, not expected. So they had to intubate him again after about 10-15 minutes. It went well but took a long time so very nerve wracking. Everything else being equal, will probably try again this weekend.

Kate says he has a beautiful face, her unbiased opinion of course. It was easier to see what he looks like with the tube out obviously.

Thanks for all your support.

-Brian

Monday, March 21, 2005 9:48 PM CST

Benjamin's condition is holding pretty steady. He is down to a 1mcg drip of Fentanyl and is getting chloral hydrate regularly and ativan as needed for sedation and anxiety reduction. He is not digesting very quickly, had to skip a few feedings today because still undigested stuff in his tummy. Hopefully once he starts having real stools that will quicken up.

Thyroid tests came back normal today, so things are good there. Some of the color changes might actually just have to do with his bed heater. When its on for a while he will get red and when he is paler it seems to always be cool.

They turned down the setting for breaths per minute, down to 35, to make him work at doing it himself more. Seems to be going well, his blood gases have been good and everything else is pretty much the same today.

Its hard to sit there for a really long time when you can't hold him or interact with him. We talk to him, sing, and read stories sometimes, but we don't want to overdo it either as he gets poked and prodded plenty as a matter of daily routine. So I end up interacting with the numbers on his charts and on his monitors, waiting as patiently as I can to hold him.

Time to go to bed and pray for Benjamin. Thanks for reading and keeping his story close to you.

-Brian

Sunday, March 20, 2005 8:28 PM CST

Today was another wonderful day! Ben was very stable all day. His breathing was regular, his blood pressure was good and he spent much of the day sleeping. He is receiving a new oral sedative to help him as he gets used to lower doses of fentynol. The doctors think that part of his agitation the last couple of days may be due to the reduced fentynol doses so this takes the edge off a bit. It had had been several days since either Brian or I had seen Ben open his eyes. In fact we asked his nurse today if she had seen his eyes open since we were concerned that we had only seen him that alert once. She told us he had had his eyes open briefly that morning so we felt better. Later in the afternoon we received the wonderful surprise of seeing Benjamin's eyes wide open for about 10 minutes - far longer than we had seen before. He looked at both Brian and I and moved his eyes as we came into view. It is very clear from today's experience that Ben knows our voices. Since Brian was on one side and I on the other, he would move his eyes to whoever was talking. He looked around for a good ten minutes and we were just ecstatic! It was so good to see him awake and alert. After about ten minutes it was time to rest and go back to sleep but we were so happy to see his eyes for that long!

To make the day even better, our meeting with Ben's doctor was equally positive. His breathing has improved to the point that they are hoping to take him off the ventilator by mid-week (keep your fingers crossed). This is wonderful news! He will be on a different apparatus that connects to his nose and does not breath for him - it will merely make sure that his lungs stay open between breaths. Moving to this apparatus will have Ben breathing on his own and will allow him to breath normally. We hope that this will let his right lung heal so that he can stop leaking air. Since his right chest tube is pulling very little liquid but lots of air, if we can get his lung healed we may be able to see the right chest tube taken out sooner rather than later. The left tube is still pulling a great deal of liquid so it will likely be the last thing to go. The doctors are hoping it will stop on its own but they don't know what is causing the fluid. They will let the fluid drain continue for a month before they will look to more drastic measures to stop it.

Hearing he may be off the ventilator this week is wonderful news! It will make it easier to hold him - an experience we are still awaiting.

Ben is not yet three weeks old and has made such amazing progress! Thank you all for all of your words of encouragement and prayers! The encouragement helps us stay strong for our little boy and the prayers must be helping, just look how far he has come!

Sunday, March 20, 2005 10:44 AM CST

Benjamin is holding pretty steady the past couple of days, he is now getting 4mL of food in his feeding tube every 3 hours, and tolerating it well. His doctors are cautiously optimistic about removing the ventilator soon and letting Ben breathe on his own. Still quite a bit of fluid coming out of the chest tubes daily, and that will probably take a while to resolve. They have tested the fluid and it is mostly serous fluid. There really is no explanation for it right now. The doctors say it will probably be a while before they consider options for interventions on the chest fluid issue. Occasionally he gets mad and his stats suffer a bit, but not to the degree they used to. His skin color changes frequently from pale to healthy pink, to a more ruddy red. Some tests are being done today to try to explain this and they are also retesting his thyroid today.

We are trying to mentally cope with this new phase of slower progress and keep reminding ourselves that Benjamin is in a much better place physically than he was a couple of weeks ago. Thanks for all your continued support of our family.

Friday, March 18, 2005 3:20 PM CST

Today Benjamin developed a pneumothorax (air in the chest cavity) that required some chest tube maneuvering and higher vent settings for him to overcome. Bit of a rough night and morning, they had to skip a couple of feedings but were back on them this afternoon. He needed a shot of Lasix diuretic this morning to get his urinating up a bit, and some platelets in a transfusion. Also, the fentanyl wean was slowed as well, which is OK. He is doing better this afternoon though, back to regular air levels of oxygen and appears to be resting comfortably. A pulmonary doctor saw him today as well.

In the investigation of potential causes of the hydrops, they have eliminated a long list of genetic causes, don't think it was cardiac, and don't think it had any sort of anemia reason. So they are continuing to look at causes but are leaning toward an idiopathic etiology....which simply means unexplained cause. Benjamin's blood at birth showed no viral, baterial, or fungal infections. The resident is going to give us a good rundown of everything on the investigative front tomorrow.

We have been to the hospital to see him every day and he is a beautiful little boy. Sometime this weekend we'll get some more pictures posted. We'd be happy to introduce more friends and family to Benjamin. We should be around the hospital quite a bit as well for those who want to come visit. You can call the room by dialing 651-220-6210 and asking for room 32. The phone just flashes, it doesn't actually ring so as not to wake sleeping babies. Please refrain from visiting if you are feeling under the weather, preemies are extra suceptible to stuff like that.

Thanks for all your love, support and prayers these past two weeks. All the caring folks sending their love and spiritual strength our way has helped our family more than you know.

Thursday, March 17, 2005 8:02 PM CST

Happy 2 week birthday Benjamin! He is doing well, coming down a bit on use of the ventilator already. And today he got his first food into his stomach! He gets 2 whole ML every three hours. I think an ounce is about 40ML, so not too much to start out with, but we'll take it. Busy day for him though as he has the lines removed from his umbilical area and new ones put into his wrists, they also moved the IV on the top of his head to another spot nearby.

Still lots of fluid coming out of his chest tubes, looks like his medical team is going to be concentrating on that next. I talked to the cardiologist today and he does not believe that there was a cardiac cause to the hydrops in the first place. He also is very pleased with Ben's progress and his heart is doing really quite well. Only a couple of small issues still, so will do another EKG in a week to be sure.

Benjamin had a great color when I went to see him earlier, nice and pink. He was quiet when I was there although the nurses say he has been a bit more active now that they are weaning him from the Fentanyl.

Thanks for all your love and support.

Wednesday, March 16, 2005 7:52 PM CST

Today was another good day for Ben. He had a little bit of a set back for a while but we figure it was due to his change in position. For a while he was moved from his back to his tummy and all of his stats seemed to show him not in favor of this change. Although, I have to say, he looked absolutely peaceful and adorable laying on his tummy! Ben has changed so much in the last several days. Brian has shared all of the medical changes that have happened, all pointing to him getting better and better. But there are have also been changes in behavior that punctuate his improvement. Ben now lays with his hands up by his head instead of limply at his sides. He moves his arms and legs and startles like all little babies do. Today he even showed signs of a rooting instict and frequently will try to suckle his oxygen tube when he hears my voice. Ben reacts more to sounds around him and will even squeeze your finger if you place it in his hand. Every day he looks more beautiful and seems to be more aware. He has not opened his eyes for me since last week but I am confident that as he is weened from sedation that I will see much more of them in the days to come.

I was hoping to be able to hold him today but that was not to be. Every day that goes by simply means that it will be that much sweeter when we do finally get to cuddle our baby boy. To me it is not a question of if but rather when. Although he still has a long way to go and anything is possible, I can't help but be positive with the changes I've seen in him these last two weeks.

Tomorrow at 7:00 PM Ben will be two weeks old. Your thoughts and prayers have helped him beat tremendous odds to see his two week birthday. Thank you so much for all your heart felt prayers and words of encouragement. I can't tell you what they have meant to us these past two weeks. You have helped a beautiful baby boy get that much closer to the day that will be one of the most wonderful days of our lives - the day when can bring our little boy home!

Wednesday, March 16, 2005 12:16 PM CST

Another good day today for Benjamin, it feels like he is making good progress. He is off the Dopamine, Milrinone, and the Nitrous. He did need another shot of Lasix diuretic today for better urination, and a saline flush for blood volume. They did an EKG this AM, but we haven't heard results yet. Also in the works is a culture of his chest tube fluids to try and get some more info on that. Ben has been tolerating the move to the ventilator very well, his oxygen use has been just above the normal 21% that the rest of us breathe.

We can actually move around in his room now that the ocillator is gone. Which is good because as Benjamin heals and weans from the Fentanyl, he will become more alert and aware of his surroundings. Kate and I will want to spend more time with him as that progresses to bond with him.

Kate and I are blessed to have 2 beautiful little boys, and wait hopefully for the day that they can be together at home with us. Until then, we are adjusting to this new life, balancing time at home with Alex, at the hospital with Ben, and at work. We have so many questions about the future, and we need to hold onto our patience and faith. We are lucky to have such supportive parents, who have been such a great help to us, along with all the wonderfully supportive people whose comments we read and draw strength from every day.

-Brian

Tuesday, March 15, 2005 11:38 AM CST

Today has been another great day for Benjamin! He is reaching some milestones quickly. He was removed from the ocillator today and put on a regular mechanical ventilator, his Nitrous use is down to 5ppm from 20 a few days ago, they hope to have him off Milrinone soon and start weaning from Dopamine tomorrow. He still gets hydrocortizone shots but is off the Lasix diuretic completely. They are slowly weaning him from Fentanyl as well. No echo today, they want to wait another day or two now. He is still urinating well, and his blood gases look good. His oxygen use has been nice and low. Ben is also down to almost exactly 5 pounds, half his birthweight.

All of this good stuff! So we asked a couple of the bigger questions since he is doing so well. His doctors would be very surprised if he is home a month from now, so we still have a long road. He has overcome many of the worst hurdles though. The chest tubes (one on each side) may be in for a while yet, and the ventilator probably will go hand in hand with that. The tubes continue to drain quite a bit of fluid, it has varied from 85-200mL or so each day for the last week. Once they can hear gurgling activity from his intestines we'll try food in the stomach via a feeding tube.

Benjamin opened his eyes for daddy last night! He has dark blue eyes right now, but doesn't open them very wide or very often. Our family is trying to get used to life with a baby in the NICU, and we have been blessed by the wonderful support of our family and friends. Thank you all so much!

-Brian

Monday, March 14, 2005 2:18 PM CST

Benjamin is doing very well today. They are working on weaning him from the ocillator, and the goal is 48 hours on that. He will have another echo tomorrow, and endocrinology is going to see him today to check on low thyroid hormones (a possible cause of the hydrops, but probably not) His doctors are also going to cut back a bit on the pain medication, thinking he may not need so much now. His oxygen levels are down to 30%, and were there all night as well.

Posted a newer picture last night and a better one from when Ben was 3 days old. So you can really see the difference. Ben was probably about 3 kilos in the 3/6/05 picture, he is about 2.5 in the 3/10/05 picture (and still is about there), and was 4.5 at birth.

I am back to work so I haven't been able to see him yet today, but will go up tonight. Kate is there with him now though.

Thanks for reading and keeping Benjamin's story in your hearts and minds, we'll continue to love him, pray for him, and keep those who care for him updated on his progress.

-Brian

Sunday, March 13, 2005 5:17 PM CST

Benjamin is doing pretty well today. Kate and I spent several hours at the NICU with him and saw the staff there able to decrease some settings on his ventilator - hoping to try to wean him from it at some point, as well as decrease the dopamine medication he is getting. It was a pretty quiet day, which is nice. His oxygen use is still up at 95%, but we are really not sure that he needs it there because his blood gases are really quite good. So they are going to try slowly turning it down and see how he responds.

Overall a pretty good day, not much in the way of response from Benjamin while we were there, though we each got a squeeze of our pinky fingers when we put them in his hand. Nice to feel. Got a chance to read his chart too and look at the doctors actual reports. Its encouraging to look back and see how much progress he has made. It also was a bit scary to see how bad off he was to start. His Apgar score was 1 the first 4 times they took it. (1, 5, 10, and 15 minutes after birth). Almost a full liter of fluid was drained from him before he was transferred Childrens the night of 3/3.

I keep telling myself that babies are remarkable creatures, and very resilient to hardship. Benjamin's cells continue to grow and his organs to repair themselves, as evidenced by the lack of blood in his urine, better blood chemistry from better liver function, and much improved heart contractility (about double from the first EKG to the one done on Thursday).

Thank you once again to all our family, friends, and coworkers who have been so kind and helpful through these past 10 days. I WILL get a newer picture up tonight, and will try to get a better one from his first few days of life posted as well.

-Brian

Sunday, March 13, 2005 9:03 AM CST

Yesterday was truly a miracle day. Ben, after receiving a big dose of fetinol (sp?) began to be more responsive than we have ever seen him. This is a little strange since the fentinol is supposed act as a seditive/pain killer. The most amazing moment was when Ben opened his eyes for the very fist time! He opened them several times for both Brian and I and it was truly wonderful! He has very dark eyes but since he cannot open them completely due to the swelling in his face it's difficult to see what color they are. He also spent some time kicking his whole legs and moving his arms just like babies usually do and would suck on his oxygen tube whenever he heard my voice. It was so heart warming to see him more awake! We were not expecting to see him open his eyes so soon and it was a beautiful surprise.

Ben's fever has come and gone a bit these last couple of days but he is still receiving antibiotics while they wait for the results of the cultures. We should hear by the end of today or early tomorrow if there is a bacteria causing the fever. He has also had some difficulty with his right chest tube. It has been leaking air inside his body for a couple of days. They tried to stitch the skin around the tube yesterday but it proved ineffective. This morning they changed the chest tube to see if they can stop the leaking. The extra air in his chest cavity makes it difficult for his lungs to expand so his oxygen needs go to 100%. We are hopeful that this will fix the problem.

Ben has a ways to go yet, especially with fluid balance. There is no guide for the doctors to use to know how much fluid to give him versus allowing him to evacuate the fluid caused by the hydrops. He often gets dehydrated and it will take some time for his body to regulate it's own fluid intake/out-take.

Regardless of his road ahead, I consider it a miracle that yesterday my baby looked at me and saw his new world for the very first time. I can see his little face every time I think of him and I can't help but smile. He continues to look better and better every day and we will try to post a more recent picture later today.

Please continue your thoughts and prayers - I know they are helping!

-Kate

Saturday, March 12, 2005 12:30 PM CST

Benjamin seems more stable today, no blood transfusions needed today, blood pressure quite stable. He has a bit of a temp still but we won't know aout infection for another 24 hours or so, it may be just a reaction to stress. His oxygen use has been lower all morning, but he gained 280 grams yesterday, so he has a bit more edema today. Today the plan is to work on getting his fluid balance better. He is getting 2 doses of diuretics a day, down from 4 a couple of days ago. Some tests have shown possible thyroid issues, but it may be an effect of the hydrops that could very well correct itself. Most medications and ocillator settings are pretty much the same, and I think the plan is to keep them that way until they can get his fluid balance better. Yesterday he needed 5 saline flushes into his bloodstream due to low BP and got platelets once as well. No more talk of moving him off the ocillator today.

There is a duct in your heart that closes on birth, allowing much greater blood flow to your lungs to pick up oxygen. Benjamin's is still open, and he also has pulmonary hypertension, (constriction of vessels in the lungs) both of which impair his ability to process oxygen. His doctors are hopeful that the ductus will close on its own, without surgical intervention. But it may be some time before that happens. It may also be a while before his fluid balance is better.

We are continuing to visit Benjamin every day and tell him how much we love him and how proud of him we are. A few minutes ago it looked like he was trying to open his eyes for the first time! Thanks for your continued support of our family during this time. We wait and pray patiently for better days, when Benjamin can be at home where he belongs.

-Brian

Friday, March 11, 2005 6:27 PM CST

Ben is doing a little better this evening. He no longer has a fever but he continues to need a great deal of oxygen. He is receiving two new antibiotics that are quite powerful while they wait 48 hours to determine if there is a bacteria that caused the fever. He is also continuing to receive saline flushes as his body works to maintain a balance of liquids. The doctor thinks it is possible that his oxygen readings are decptive. As the body fights infection it wants to protect the vital organs so the blood vessels constrict and the extremities receive less than normal. This is also an affect of low blood pressure which Ben has had most of the day. It is possible that this condition is making it difficult to get accurate readings from the monitors. There is reason to believe that this may be happening since his last blood gas this afternoon showed very high levels of oxygen while the machines show him needing oxygen at 100%.

While we are dissapointed in today's set back, it is a good reminder that we can't expect the kind of improvement we have seen the last few days every day and that there will be good days and bad days. We look forward to tomorrow in hopes that it will be a good day.

Friday, March 11, 2005 1:45 PM CST

Benjamin has a bit of a fever this afternoon, 101 something. He probably has an infection but we won't know for sure for another 48 hours. Some of his meds have been turned back up a bit and they are giving him more fluid as he is a bit dehydrated (imagine that!). The doctor says this is pretty common and not exactly unexpected, he has many tubes and IV's and not a great barrier to infection. She also says this is more of a bump in the road, even with a temp he is better off than he was three days ago. His oxygen use is way up and has stayed there for a while. He has received a big dose of antibiotics and we are hoping that helps. They are not going to be making any big changes anytime soon until we see how he does over the weekend.

So we are feeling a bit down here today but are trying to keep our heads up. We knew intellectually there would be down days but that doesn't seem to make it easier.

So say a prayer for Benjamin if you would, he has yet another challenge and can use the spiritual love and guidance.

Thanks

-Brian

Thursday, March 10, 2005 8:38 PM CST

Today is a day to celebrate, Ben is a week old today! And to top it off, he looks wonderful!!! The last two days have been a true miracle. Every time we see him he looks better and better! He has almost halved his body weight and now we can see his face. He is making facial expressions now, his favorite face is scrunching up his face and sticking out his lower lip. Nurses who have cared for him over the past week continually stop by to see how he is doing and are just amazed at the change!

It amazes me that only a week has gone by since Ben joined our family - it has been the longest week of my life. Things that happened as early as a week and a half ago seem like they happened months ago. Although this week has been an emotional roller coaster, we can't ask for a better end. Ben has improved dramatically the last few days. His heart is improving, his liver seems to be working well and his kidneys have been producing urine - likely the key to his improvement. Yesterday a doctor told me that she had assumed it would take at least two weeks for Ben to shed the fluid but now even his head and face have become much smaller. He looks more and more beautiful everyday. Last evening I was even able to help do some baby calesthenics to help reduce the stiffness in his limbs.

I can't thank all of you enough for all of your prayers and positive thoughts! Although Ben has a great deal more healing to do, with so many people praying and thinking of him God just had to listen. All of you have helped Ben get through this very difficult first week of life and beat tremendous odds to enjoy his one week Birthday!

Thank you all!

- Kate

Thursday, March 10, 2005 4:07 PM CST

Today has been a wonderful day.

Benjamin looks like a regular preemie today, and you could feel the excitement of his doctors and nurses this morning because of the wonderful progress he has made. He is being slowly weaned from many of his medications, looks like he doesn't have much extra fluid left, is not creating as much fluid, his heart looks twice as good than the echo done on Sunday, and he will probably be moved from the ocillator to a regular mechanical ventilator tonight or tomorrow! Dramatic improvement in the hydrops itself and good baby steps in the right direction everywhere else.

Benjamin's maternal grandmother met him for the first time last night and his big brother Alex got to meet him for the first time today.

I will post another new picture soon. Give us a call or email if you want to come visit Benjamin. We have been there mostly in the late mornings and over the lunch hour, and might be around some more this weekend. Guidelines: no kids under 13, and if you are sick please wait until you are better before coming. Chicken pox exposure within the last 3 weeks is no good either. Visits are usually kept pretty short as Benjamin is still very fragile and we want to be careful to protect him from being overstimulated.

We have so much to be thankful for today. Thank you so much for all of the positive thoughts and kind words we have got from so many of you. We tell Benjamin that there are many people who care for him and pray for him every day. His progress is so encouraging and the power of your prayers and positive thinking has shown through. We also continue to be amazed at the amazing people and resources of the Children's Hospital NICU. They have truly done an amazing job managing Benjamin's care.

Thursday, March 10, 2005 9:29 AM CST

Benjamin is down to about 5 lbs 12 oz this morning, good news. Much of the fluid has gone through. There is still blood in the urine which may be due to some kidney damage sustained around the time of birth. Basically all his organs probably were somewhat damaged due to lack of oxygen at birth. So he is getting some packed red blood cells in a transfusion this morning. Overall his doctors seem pretty happy with how he is doing so far.

Yesterday I totally messed up what I said about the medications he was on. He is on 4 heart medications, a diuretic, and pain medications. He is being weaned from a lot of things though, including the diuretic. He is also getting protein, vitamins, and minerals via IV. They are probably going to remove another chest tube today as well.

We are anxiously awaiting the chance to talk to the cardiologist after the EKG they will be doing today. Hopefully the heart medications and healing process have had a positive effect on his heart.

We continue to draw inspiration and strength from the wonderful comments and prayers that so many of you have offered to our family. They mean so much to us, thank you.

-Brian

Wednesday, March 9, 2005 1:09 PM CST

I keep forgetting to put in here that Ben was 34 weeks gestation when he was born. We came in this morning to a different baby - his face has lost so much of the extra fluid, it is great to see. He has eyebrows now! We'll take some more pictures today and post them soon. There is a good deal of blood in his urine today, but it may not be a cause for too much concern, and there will be a specialist here to look at the problem this afternoon.

Ben's BP and oxygen use are looking better, he is being weaned from the BP increasing medicine and will be taken off antibiotics today. Once those are gone he'll be down to 5 things they are continually pumping into him: a sedative, a diuretic, sugar, a heart hormone called Nisiritide, and I think a protein and sodium solution. He will have another echocardiagram tomorrow and we pray that it will show better heart function this time. That would be very encouraging.

Ben is down to about 6lbs, 10oz from his birth weight of just under 10 lbs. This is good! We believe its mostly fluid he has lost. The back of his hands look like raisins from the skin being strected so much by the edema (hydrops).

Reading all the encouranging comments is wonderful therapy, thank you all! We have been here at Childrens several hours each day spending time with Benjamin, singing him lullabies and talking to the nurses and doctors.

-Brian

Tuesday, March 8, 2005 8:29 PM CST

Today was a much better day, leaving us with a much warmer feeling as we wind down the evening. Benjamin looked much better today. His skin tone was a much healthier color and his oxygen requirements were down considerably from the last couple of days. In addition, he tolerated his daily procedures so much better today than he did Sunday and Monday. Even the evening nurse said he thought Benjamin looked much better this evening than he did the previous evening. They are giving him more constant pain medication and although this will make him a little less responsive, I'm glad. Now that he is evacuating more urine on a daily basis his old pain meds were not lasting long enough. It's hard to heal if you are in pain so we are all for the additional relief for Ben.

The crowing moment for today was that the nurses let us kiss him today. Ben is 5 days old and we were able to give him his first kisses - one from Mommy and one from Daddy - today! I can't tell you how much that meant to us! To finally be able to bestow such a basic symbol of love as a kiss to Ben was the most wonderful feeling. Today will live forever in my memory and I will go to sleep tonight clinging to the memory of how wonderful it felt to kiss my baby boy.

We have been reading all of your wonderful notes of hope and best wishes and please know that they do help! We read them every day and they lift our spirits and gave us hope to see how many people are sending their thoughts and prayers to Ben. We are so lucky to have so many wonderful people who care! Thank you all!

-Kate

Tuesday, March 8, 2005 12:43 PM CST

Thank you so much to all the positive thoughts and prayers, offers of help, and kind words. Today has been a good day. Benjamin is urinating much better today, already well over what he did yesterday. They tell us that is key for him. His color looks better, and he is needing less oxygen as well. One of the 4 chest tubes he has draining fluid is being removed today, although just because its not draining anymore.

We finally got some pictures up this morning, so check em out. I just got around to reading the guestbook comments, and it was very inspiring to see all of your kind words. We are forunate to have such wonderful friends, family, and coworkers who care for our family, not to mention the world class caregivers here at the Children's Hospital NICU.

For those of you who want more in the way of detailed medical info, I give you the following:

Benjamin has had a couple echocardiagrams, which show poor overall function of his heart - the second one (done on Sunday) showed slight improvement though. No specific heart problem, such as arrythmias or structural heart defects have been found. Ultrasounds of his brain have showed no structural defects as well. He continues to be hydropic, in that fluid continues to leak through his circulatory system at basically the same rate it did in the womb.

We learned that there are 2 other cases currently in the Twin Cities community that share a lot of similarities to Benjamin's, such as a very fast onset of severe hydrops with no readily apparant cause. Although we can't find out more about these families because of privacy reasons, we are keeping them in our prayers as well.

Because of these cases, and the abscence of structural problems is leading Benjamins doctors to speculate that it may very well be a fetal infection of some sort at the root of the problem. Again, this is very speculative at this point. We should have some preliminary genetic info soon and test results from Kate late in the week. We believe from what we have read that the prognosis is better for Benjamin if an infection is the underlying cause of the hydrops. One other thing to note for those of you who have been reading up on hydrops, Benjamin has never been anemic, which is important to be able to rule out a whole bunch of possible causes.

Monday, March 7, 2005 6:46 PM CST

Monday, March 7, 2005 6:46 PM CST
First I want to thank all of you for your well wishes, comfort and thoughts and prayers over the last few days. Although it is true that Benjamin has a lot to overcome, they say that in cases of extreme illness, positive thoughts by those who love you can make a tremendous difference in recovery. Sine he has already surpassed huge odds and has spent the last four days fighting, I think there is definitely truth in that philosophy and each and every one of you are helping him to fight and live another day. We certainly aren't fooling ourselves into thinking this is going to be an easy road - Ben has a hard fight ahead of him. However, there are some very lovely things about him already that are important to share. Although he is still swollen from the fluid, he is still a beautiful baby! He has perfect feet with wonderful little toes and amazing hands with beautiful fingers. He's soft and warm to touch just like any other baby and looks just as sweet and innocent as all babies do. Although he spends much of his time sedated so that his body can heal itself, he can still hear and he does react to his surroundings. Every time Brian and I talk to him he waves a little foot or little hand at us as if to say "I'm here Mommy & Daddy and I'm glad to be here". I go to sleep each night seeing him wave his little feet in my mind's eye.

Today was not a day where we were looking for improvement or change. We mostly prayed for a calm day with few procedures so that he could rest after yesterday's difficult day and evening. For the most part, that is what today has been - status quo. We will look and hope for improvement on another day when he has been able to rest. Ben is a fighter and luckily gets stubbornness from both sides of the family. I take comfort in knowing that any child of mine will fight for what he wants tooth and nail and won't give up easily. This gives me faith that although the odds are tough, Ben can fight his way through.

Please keep the positive thoughts coming; they can do nothing but good! Thank you again for your love and support as we hope and pray day by day.

Monday, March 7, 2005 1:45 PM CST

Checkout day for Kate today. It will be hard to leave with Benjamin here. Thank God we have Alex to lift our spirits and give us something to look forward to going home to.

Benjamin is fairly stable today. Good signs are that he is urinating more, but still not as much as they would like. He is getting some calories now to help him grow too! His face is still very puffy and he still weighs about 3.5 kilos, which is probably 1-2 kilos of fluid. True weight is likely 3.5-6lbs, very hard to tell.

His blood pressure is good today, but his oxygen needs have gone up today. They have to suction his lungs regularly to remove fluid. The ventilator pressure is up as well today. His heart rate is good, but he has poor myocardial function, so his heart is somewhat weak.

They still do not know what has caused the hydrops, and in up to half of the cases, they never find out. From what I have had time to read (thank you to those of you who have been so kind to weed out the chaff and send on the good articles!) that is probably a good sign. When they can pinpoint a cause, it will often mean an even poorer prognosis.

A lot of the treatment he is getting is basically to keep him alive and relatively comfortable, hoping his systems can recover and start working better; and to drain the excess fluid from his body where possible. By systems I mean his heart, lungs, kidneys, and liver.

They say it is not a vain hope, if they thought he was beyond help they would say so. So we continue to watch over him, sing him lullabys and tell him what a good, strong boy he is, and how proud of him we are. We are allowed to touch him very gently as well. Every few hours brings more challenges for Benjamin to overcome, and he has been doing well so far.

Sunday, March 6, 2005 9:30 PM CST

Ben is just over three days old now. The past few days have been a real roller coaster for our family. I am going to use this as a dump of thoughts and information. I'm sure I'll forget important things and its not going to be real organized.

Benjamin came into the world on 3/3/2005 around 7:00 PM, very unexpectedly. His heart rate was very low, and a decision was made within about 5 minutes by the staff at St John's to deliver him via emergency caeserian. He was recusitated at birth and was diagnosed immediately with a severe case of non-immune hydrops fetalis. This condition caused Benjamin to be swollen with excess fluid. His birth weight was 9 lbs 15 oz, most of which is excess fluid. Ben's prognosis at birth was about a 10% chance of survival, and we don't believe that has changed much yet. Ben is a real fighter though, and has responded to treatment well. We hope to get some pictures up on this site tomorrow. Kate will be released from the hospital tomorrow.

Ben is breathing with a ventilator, and receives constant care from the fabulous staff here at Children's. He is on many medications to help him stay sedated, control his pain, and to treat the many organ problems he has due to the hydrops.

Thank you to all our family and friends for their love, prayers, and support these past few days. We are doing our best to stay positive and give our son Benjamin the love and support he needs to grow and survive.

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