Day Number 125
Journal Entry by Alli Bailey — April 29, 2019
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.
Help Nash William Stay Connected to Family and Friends
A $30 donation to CaringBridge powers a site like Nash William's for one month. Will you make a gift to ensure that this site stays online for them and for you?
- Diana KrippendorfThank God! What a BEAUTIFUL family!!!!! Yeah!!!! Go Nash!!!!! We love you !!!! Auntie Diana and family4/30/19
- Debbie ZaninotAmen ! You all did it together! Congratulations on a great job! God bless baby Nash and his mom and dad. You all fought the fight and won 💙4/30/19
- carol lameyMy my, what a hapoy ending to a long journey!!! So happy for you all....4/30/19
- Bren ThompsonYeah!!!! Congratulations to all.4/29/19
- Sandy RollheiserAWESOME!!!! So happy for you three!! Congrats for enduring the last 4 months with flying colors!!! May God bless you three everyday with lots of baby love and lots of “firsts “ for Nash!! He is a little miracle! God’s work has gotten you to this day!! Amen!!4/29/19
- Lauren LeamanTears of joy as I read this post today. You did it, Nash! So happy for you guys and will continue to keep you in my thoughts throughout your journey ahead. ❤️4/29/19
- Brycen JohnsonBeing home is the best Nash!! I am sure you are going to love it and do amazing!!4/29/19
- Mike McKeonGREAT entry today !!!! I've been thanking many people for all of their prayers and good vibes. We can't wait to visit our little big guy soon.4/29/19
- Linda BaileyNash looks so good!!! Loving the grad shirt! I'm so happy for all of you!4/29/19
- Lauren YoungYAHHHHHHHHHHHHHHHHHH! The moment we've all been waiting for! :-) So grateful to read this update today! Love and (continued) prayers for your family of THREE!4/29/19
- Cindy FinebergAlli and Vince I am so happy and excited for your wonderful news!!! I can’t wait to visit and meet Mr. Nash in his home!4/29/19
- Sean ArtzWe are so happy that your little Man Nash is heading home! Your are one awesome team of fighters for sure.4/29/19
- Linda ReedBeyond awesome! So happy for you.4/29/19
- kellie dowdWhat great news! Enjoy your little guy at home.4/29/19