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April
29
2019

Day Number 125

Well everyone, today is the day. Today is the day our little boy is coming home. My last caringbridge post for little Nash and his NICU journey. Lots and lots of emotions happening with us and our friends and families right now as the day we all have waited for over 4 months is finally here. This blog has made me feel extremely close to our network of friends, and really been helpful for my healing after this unexpected turn of events for our family. Let me sum up the last few weeks for you.

Vince and I had to make choices at the end here that dictated Nash’s stay. We were hopeful that our choices paid off in the end, and I believe they did. A few weeks ago, Nash started eating and we were given the choice to send him home on a feeding tube and oxygen and slowly wean him over time (indefinite time and typically slower as outpatients vs inpatient). We were adamant that we did not want Nash home on a feeding tube, as his only consistent issue has been around his lungs, and he never was really given the chance to eat. While Nash began eating wonderfully, last week he had a little set back when they attempted to make some medicine changes. He puffed up and stopped eating completely, and the doctor informed us that we would be going home with a feeding tube.

I can tell you that today we are taking Nash out of here, and he does not need a feeding tube as we leave this hospital. Nash began eating the second they put him back on his medicine, and the last 3 days he has eaten 100% of his feeds orally. We are walking out with our little boy and the only thing he has is 1 liter flow of oxygen. I have tears in my eyes writing that because even on Tuesday of last week, they were telling me that Nash would need a feeding tube, but he pulled it together, yet again, and soon we’ll be walking out of here together as a family of three.

Lots of emotions as I think back. Throughout this journey, I never had the thought that maybe we wouldn’t walk out of this hospital as a family of three. Vince always says “you lived in a fantasy world because it never crossed your mind that Nash could have not came home”. Even when I tell the story of Nashs early arrival to people, it usually offends me when they says “he could have not made it”.  But last week Nash got a special visit, and as the visitor held him she cried and said “I’m just so glad he’s ok”. And it kind of hit me that I got to watch Nash become ok throughout his journey. While you guys got to read about it, or hear about it, I got to watch my little boy go from very little, to very normal baby sized in a matter of 4 months. I got to watch Nash go from maybe not ok, to ok and I never want to take that for granted. I am so overwhelmed with happiness for this little man, for our family. I can’t wait to just share him with the whole world (although we have to take that slower than normal because Nashs little lungs are still pretty sensitive). 

Our little boy is coming home, and he’s not so little anymore. He started at 1 lb 13 ounces, left the NICU at 9 lbs 6 ounces. He started at 12.5 inches long and left at 21 inches long. He started as 25+2 weeker and left as a 43 weeker. We spent 125 in the IU NICU. Leaving today, all of the IU NICU staff lined up and played the graduation song for baby Nash while mom cried and dad “almost” cried. I can’t express enough how thankful I am to the staff at IU North for helping us get our baby home.

I am also feeling extremely grateful for our support system, our little boy, my little family, and all of the support we’ve felt over the last 4 months. We could not have made it without our friends and family lifting us up and being there for us. I can tell you that nothing can prepare a family for the day they bring their premature baby home. We’ve vacuumed the floors, dusted the shelves, assembled all the baby items, and washed all of his clothes, but today as I walk out of the hospital with our NICU life packed in all of our bags and our baby sitting in his car seat for the first time (since his car seat study), the elated feeling I have about getting zero sleep coming up, changing all of the poopy diapers I’m about to change, and getting barfed on in the near future, can not be trumped. We did it! We all did it. The greatest things come in small packages, and we got one of the smallest and greatest gifts of all. 

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April
23
2019

Day Number 119

I feel like we’re really gaining momentum here. Yesterday Nash ate 83% of his feeds orally, and today, he’s eaten close to 100% orally so far! He is inching closer and closer to the NICU finish line, in fact, the doctors were cautiously optimistic about saying that later this week Nash could be home (meaning Friday, Saturday or Sunday). Usually I make up my own timeline for us being home in my head, but today the doctors actually threw out a timeline.

With going home though, also comes lots of things for mom and dad to do. We have to learn to use the oxygen equipment Nash will need for the first few months, and we have to start setting up all of our first doctors appointments. Right now, Nash will follow up with his pediatrician and pulminologist for oxygen as well as a nutrition specialist. He’s at the 55 percentile for weight so I’m thinking that may be the first doctor we get to shed (hopefully). Nash weighs 8 lbs 13 oz now, and is gaining about 2 ounces a day. He’s a big boy.  

We are right there, so close to the finish line everyone. In the meantime feel free to stare at these daring photos of my almost 9 lb baby boy. Lots of prayers for mom and dad as we prep for this little man to make his arrival.


April
19
2019

Day Number 114

I’m almost to the point where we aren’t counting days anymore! We are somewhere in the hundreds, maybe that’s all I’ll start saying. Nash has truly and honestly blossomed these last few days and I can say that without hesitation. After Nash’s swallow study, he was allowed to feed orally with queues (meaning he looks around for food and sucks) for 15 minutes each feed. At IU, they allow 30 minutes for babies to finish their bottle typically, but due to Nashs long and rocky road, Nash got a time restriction for his first few days of feedings.

Even with the time restriction, Nash has dramatically outpaced expectations in the eating department. Yesterday, he took 65% of his feeds orally. That is huge for only his second day of feeding! So explained differently, Nash gets 67 mL per feeding. Yesterday, he averaged taking 67% of his 67 mL per feeding for all 8 feeds during the day! Today, he took one of his feedings 100%, meaning he orally fed 67mL! He also breastfed today for 20 minutes. It’s really cool to watch him eat and watch him be so happy to eat.

I’m going to be honest, I have struggled with his time limit on eating because he passed the swallow study, and I know he was wanting to eat bad. But, Nash has been completely zonked out these last few days. He wakes up, eats, falls asleep while eating, and doesn’t wake up again until it’s time to eat (and sometimes that’s with mamas help that he’s waking up). Today, however, I finally saw him wake up and stay awake after a feeding. In fact this was after his biggest feeding. I was very proud of our boy today, and I know his dad was proud too. 

They’ve been reiterating that this is the hardest part of the NICU stay for most parents and I believe that this has been extremely hard for both Vince and I. In the beginning when he was sick, I understood why I couldn’t take him home every night. But now, he’s so interactive and fun and eating and just a term baby! It’s harder to comprehend why I can’t just take him home every night. With that being said though, I am truly witnessing him doing better each and every day! It’s really inspiring to watch a 3 month old baby impress me every day, every feeding. At this point, we’re prepping to bring the boy home on oxygen, but hopefully no feeding tube. There’s still potential no oxygen as well, we will just have to see what the next week brings. The family is feeling great about Nash, and we’re starting to check off the boxes on the hospital to do list so we’re ready when the doctors say it’s safe to bring him home. We’re loving the time we’re getting with him, and I’m feeling overwhelmingly thankful for this journey right now. I love sharing Nash’s personality with everyone, and I just have this feeling that everything is going to be ok.

Thank you for your prayers and love and good vibes. We’re feeling them right now and need them to keep coming :)

April
15
2019

Day Number 111

Another day, another test passed for Nash William McKeon! Today Nash had his swallow study, where the speech therapist ran a continuous X-ray while Nash bottle fed to ensure his food is going down the right pipe and not aspirating into his airway (similar to when you take a drink and it goes down the wrong pipe). Nash passed with flying colors, no aspirating, no pooling, no anything just normal baby status. Therefore, the speech therapist approved Nash to orally feed at every feeding with queues which is no problem because every 3 hours Nash wakes up and roots around like a crazy man. 

Nash weighs 8 lbs 1 oz now, and he also passed his hearing test this weekend. Therefore we only have a few more hurdles to get through before his grand appearance at home! Nash gets the chance to work on his feedings and get a little faster, and then in the 2 weeks we’ll probably be walking him through our doors! They’re going to try to get him to 1/2 a liter of oxygen versus the 1 liter he’s on now, and I’m going to try desperately to get him to full feeds so we don’t have to mess with any NG tube at home. Wish me luck! 

Mom and dad are very happy and very proud of our precious baby today. We woke up this morning knowing our little man was eating just fine and he just needed to do a little proving of himself to the doctors around here. Now we’ll spend the next week or two working on these feedings and then BREAKING OUT OF THE NICU. We are so so so so close!

-Nash’s mom

April
12
2019

Day Number 107

What a great day Nash and I had today. Nash got his first true practice feeding with a bottle, and I can honestly say he exceeded all expectations (of everyone except his mom and dad and family who knew he’d blow this one out of the park).

I woke up this morning and I knew today was going to be great. I came into the hospital at 1030 to wake Nash up and prep him for his eating observation. Today was the day speech therapy would observe Nash taking his first ever bottle, and I needed to make sure he was awake and ready to show his skills. He didn’t really wake up for me, per usual. But he did wake up once respiratory did their semi violent patting of his back that they do every 3 hours (and that Nash creepy loves).

The speech therapist seemed, skeptical to say the least, of Nash’s eating skills, while mom here was excited to cheer him on from the sidelines. The speech therapist fed him his bottle and watched his mouth movements as he ate. I was standing on pins and needles the whole time because this is hurdle 1 Nash has to jump through to go home. He passed with flying colors, and he did not look like he was aspirating (aka milk going down the wrong pipe). The doctors are, however, still worried he is silent aspirating so they are doing a swallow study on Monday. 

In the meantime, we get to feed Nash by mouth 10 mL of his 60 mL for two of his feedings per shift all weekend. Yay for Nash. Please pray that the boy is not silent aspirating. If he is, we will get to bring him home sooner, but it will be with feeding tube in tact. If he’s not aspirating, we may wait a little longer to get him taking full (or close to full) feeds.

Lots of love and thoughts are appreciated going into the weekend and Monday. Were so close I can taste it (pun intended).

- Nash’s mom 

April
10
2019

Day Number 105

Things are starting to roll for little (not so little) Nash. The game plan for this week is as follows:

Today Nashs blood gas came back near perfect so he was officially moved down to 1 liter! This is the second time Nash has been on one liter so let’s hope this time, he stays. We are waiting until Thursday to attempt feedings again (pending a blood gas). Nash has to be observed by a speech therapist on Thursday to see if he looks like he is aspirating. 

If you all remember, last time he got to 1 liter, we also attempted non-nutritive breast feeding the same day. Therefore, when Nash’s blood gas came back elevated the next day we weren’t sure if it was weaning him to 1 that threw him off or the breast feeding. Taking a blood gas Thursday then having him observed while eating should isolate if one / none / or both are the issue. 

The nurses and doctors have all commented that Nash is really starting to look amazing. He’s filling out, weighing 7.5 lbs now! He is a pretty calm baby who rarely cries and loves his pacifier more than I think he loves mom and dad. He got an echo today of his heart and it is perfect. Therefore, his head ultrasounds are perfect, his heart is great, his eyes are good now, and we are just waiting on little mans lungs and eating to move into his room at home. 

Lots of prayers for the next week, this is a big one for Nash! 

April
8
2019

Day Number 103

Tomorrow is the day I would have been waiting for 3.5 months ago, my due date. Tomorrow starts the official countdown for my family, the countdown for milestones, the start of a new phase of us. We have a term baby now, right?

Semi-right. Nash will be term tomorrow officially, but we still have a road to dismiss the prematurity label he’s received to date. Tomorrow Nash will officially be “newborn” as far as gestation. Isn’t that weird? A newborn who holds his head up, holds his pacifier in, and walks and talks (kidding but wouldn’t that be a good one). To me, as his mom, It’s been wild to see him grow! He was 1 lb 13 oz and to me he was perfect. I’d freak out when people would call him the little guy and I was offended when people said preemie around me. Now, he’s almost 7 1/2 lbs of awesome. His cries are loud, and adorable. His clothes are tight (at least his preemie ones), and he’s been known to give the nurses the stink eye one too many times, which I think he got from me.

Tomorrow marks a milestone for me. My due date, the date I so wanted to come sooner rather than later but not as soon as he came. Tomorrow marks his 104th day in the hospital. He’s doing amazing, and we can’t wait for the little 7 lb 5 oz, 19.25 inch long baby to get here :) 


April
2
2019

Day Number 97

We are inching our way forward here in the NICU. Nash officially weighs 7 lbs today! He currently sits at 3 liters of oxygen, and we are waiting (impatiently) for him to get back to 1 liter. At this point, the nurses have told us that the NICU doesn't often keep babies too far past 42 weeks gestation, so we are in THE FINAL COUNTDOWN. That being said... Nash has continued to keep us on our toes as to his timeline of coming out. Nash will be 42 weeks gestation on April 22nd, therefore I have that date marked, circled, highlighted on my calendar. We're 20 days away people!

Now that Nash's lung disease has continued to rear its ugly head, we are on the slow weaning path. We are going to do a blood gas on Friday, and at that point if the numbers don't disappoint, we'll wean him to 2 liters. Then hopefully Monday / Tuesday we can get him to 1 liter and work on oral feeds. Nash did not disappoint when he got to try oral feedings the first time, and the way the boy loves his pacifier tells me that he'll have no problems with oral feeds the second go-around. The doctors and nurses have started to prep Vince and I for taking Nash home on oxygen and potential an NG tube, but our hope is we can eliminate one or both of those in the next 20 days. 

This has been an extremely trying time for Vince and I. Every day, I try to keep the positive vibes coming, but next Monday is my due date, and we will have been in the hospital for 15 weeks at that point. 15 weeks in a hospital, not taking your baby home every day is actually excruciating. Vince has done a better job maintaining his positivity than I have, that's for sure. I'm pretty sure the nurses are on edge every time I spend the day in Nash's room, because I can be pretty temperamental at this point. That being said, all the times I am holding and loving on him, I feel much better. Its more when anyone tells me he needs to get to 1 liter, if anyone mentions what my life will be like when I take him home, or when I'm at home at night that I feel the sadness. I feel like its Vince and I versus the world right now, and its been hard for me to try to open up to others about my sadness. You'd think we were passed the sad part, seeing as how NASH IS ALMOST HOME!! But still, not taking him home when he looks so great has gotten to me, and chipped away at what little sanity I had left. 

He looks great, acts great, and I really just can't say enough about his awesomeness. We are on the right path, so pray for no more set backs, and Nash's lungs to continue to grow and grow so that nasty lung disease clears up sooner rather than later :)