Last Micro Preemie Monday of the Year
Welcome to our last Micro Preemie Monday of the year. I still can’t believe Friday will be 2016. Even though it will be a new year, I will still continue to bring you new Micro Preemie Monday stories as long as you let me, which means please keep reading, sharing, and helping me spread awareness about this important cause and these beautiful, strong fighters.
Today
We meet a baby that is still fighting in the NICU. We’ve met a few babies that have been in the NICU during the time their story was shared, like our first twins Liam and Kaiden, and also most recently Lucky. They have all gone home now, and I wish the same for this sweet baby.
Now, let’s meet John, as told by his mom Kimberly.
1. Tell us about your baby
My son’s name is John Leroy. He was born at 24 weeks 5 days. His due date was November 17, 2015, which I recently found out is also premature awareness day! I had an emergency C-section and will now never be able to have a baby vaginally because of the way I had my C-section. He was 1 pound 8 ounces and was less than a foot long. (For some reason the hospital didn’t keep his length and that is all we were told when he was born.) He was intubated for about 2 months and is now on nasal cannula. The doctors say he will go home on oxygen since he has been diagnosed with Chronic Lung Disease. He has had over 5 infections including NEC. Since being on antibiotics for over a month, he is now a whole new baby. Very happy and easy-going even with the battles of severe acid reflux. Ever since he has been given a bottle, he has done amazing with them. He now wakes up when he is hungry, and is given as much as he wants instead of being woken up every three hours to take a specific amount.
2. How long was your NICU stay? What was the hardest part?
John has been in the hospital for a little over 3 months and counting. The things holding him back at this point are:
- The severity of his A’s* and B’s* (They ALL need to be self resolving.)The doctors chalk this up to his reflux and have given him Prilosec. It has made a HUGE difference but he still has spells on a daily basis. They say he will grow out of them eventually.
- His eyes. He gets an eye exam every week to determine what stage and zone he is in. (Right now he is stage 3 zone 2 but has another exam today. Hoping for improvement!) We have to keep him in the hospital if he is on oxygen with this even though his exams are every week. I am told if his oxygen requirements are not exact then it can worsen his eyes, or worse, make him blind. So even though he is only there for a weekly exam he still needs to be kept there 24/7.
- His oxygen requirements. He is not quite what it needs to be at in order for him to come home.
This whole thing has been the most difficult thing I have ever done in my entire life hands down. But if I had to choose the most difficult parts, I would say either the night I was discharged from the hospital. The fact of leaving my baby there and going home hurt more than words can describe. I kept saying “That heartbeat has never been so far away from me.” I cried myself to sleep just to wake up in an hour and cry some more. It is a tie between that or what is happening now. Before I could justify leaving him because he obviously needed the medical attention that I could not provide. Now that he is better I feel, as his mother, I should be there to give him what he needs. He has turned into a normal baby and it is hard not to feel like the nurses are more his mother then I am because they change him and feed him more than I get the opportunity to. I feel like I am loosing out on moments I will never have. And that hurts bad.
3. Do you know what caused your premature birth?
I actually went to a doctor after my son’s birth to find out what caused it and what my chances are of having another pre-term birth are. So basically I guess you can say it was incompetent cervix.
The events that led up to my son being born are more complicated than that however. The thing that started all of this was one day I was out and about and had felt a gush of fluids coming out. It wasn’t enough to convince me it was my water. It looked like discharge so google eased my mind. A few hours later however I gushed again. So my husband and I went to the emergency room as instructed by my doctor. Well they swabbed me and tested it for amniotic fluid and it came back negative. So they insisted I go home. I wasn’t convinced so I set up an appointment the next day with my OB. She discovered I was actually 3 cm dilated with a bulging bag. So I was life flighted to the university hospital. I found out my bag was still in tact. I never found out about the gushing or what it was. I was on bed rest for almost a week before my son decided to make an appearance.
4. How are you, your family, and your baby/babies doing now?
You know, this is asked from everyone so often it is just a habit to say, “Great!” with a huge smile no matter what is going on. But to be honest, I am overwhelmed. Between work, the hospital, and my husband it has been enough stress to last me a lifetime. I haven’t cooked a meal since my son has been born, and cooking is my favorite thing to do. (We have had nothing but fast food for over 3 months!) I just can’t find the time to clip my nails, let alone shop for groceries!
My husband has his moments but overall he seems to be handling this amazingly. (That is what people say about me though.)
And my baby, he is growing like a champ. He is 5 pounds 8 ounces and 15 inches long. He impresses me every single day. I say this a lot but I never thought my child would actually be someone I look up to. He is my hero and where I find my motivation.
5. What advice would you give to a new preemie or NICU parent?
-This is the hardest thing you will ever go through. The NICU stay is a roller coaster. You will see your child go through things you can’t even imagine. And when they look up at you with tear filled eyes because they are getting poked again and there is nothing you can do about it, your heart will break. But it is worth every single minute. You will get to watch your child go from a gummy bear looking creature to a baby. You will get to know more about them than any other Mom who had their baby full term. It is BY FAR the hardest experience of my life, but I wouldn’t trade it for the world.
-NEVER compare the progress of your baby to another in the NICU. This will make you focus on hurrying his progress rather than doing things for his well-being. You’ll find yourself saying “Jason is taking bottles now, so my kid can too!” Don’t push your baby.
-Trust the doctors. This is your first premature baby you have dealt with, but it is there 100000+. They know a lot and when you doubt them it only slows things down.
-Try to focus on the good things. Your baby will take 5 steps forward and 1 step back. It is so easy to focus on the ONE bad thing that happened, but you will drive yourself crazy. Stay focused on the 5 good things that happened.
-Keep a journal of what is happening. Write down medications, infections, and smiles. I would make a point after my daily entry once all of the medical term were written to put happy moments of the day too. “John smiled big for Mommy today.” was written more times than I can count. But I can’t wait to go back a year from that day and read the positives.
-Get to know your nurses. These people will be spending a lot of time with your baby. It helps a ton when you know exactly who is handling your child. Even after 3 months I still feel uneasy when I don’t know the nurse. And during shift change when a nurse who knows my baby walks in, I know I will sleep better that night. Don’t just talk to them about your baby. Ask them how their day is going, get to know them on a personal level. They will become your new best friend. (You will be surprised how many nurses have had premature babies of their own.) Also, don’t be afraid to ask for primary nurses. You definitely won’t regret it! It is okay to be a little selfish and ask for the primaries you get along with. You will be interacting with these people on a daily basis. And if your personalities don’t click, it will only make things more difficult for everyone.
-It is okay to ask for a hug. Everyone knows that you are going through a rough time. And you will get asked 6000 times how you are, how the baby is doing, etc. It will become habitually natural to just perk right up and say how wonderful life is. (Even though you don’t feel that way on the inside.) But eventually you will have a break down. And at that point, you will need someone there. (This is a lesson I still need to learn!)
*A’s and B’s stand for Apneas and Bradycardias. From About.com, Apnea means a period in which breathing stops. In premature babies, apnea is any pause in breathing that lasts longer than 20 seconds, causing bradycardia, or a drop in the baby’s blood oxygen level.Bradycardia means a slowed heart rate. In premature babies, bradycardia is a heart rate of less than 80 beats per minute.
Update!!!!!
John is at home now! Hooray! Keep fighting and making your parents so proud John. We are all so proud of you!
From Kim:
He came home the 16th of this month (December.) He spent a total of 4 months, 136 days in the NICU. The day he came home was the best day EVER!
Please leave any questions or comments for Kim and her family below. Thank you so much, Kim, for sharing your inspiring story.
Kimberly you son is beautiful! I’m so happy he is home and I hope he continues to do well. I really love your advice about journaling everything.
Oh my goodness! That precious little one’s head by his daddy breaks my heart but also makes me so happy becaus I can just feel the love <3 I love that you bring awareness about premature babies <3 Your passion is so inspiring.
Congratulation. May you continue on a blessed path.
This is such a difficult situation for any parent to go through. I’m glad you are sharing these stories for those parents who are currently going through this and those who may go through this in the future.
What a beautiful little boy! Your story is one of faith and love. I can’t imagine a baby that small. I’m glad that he is finally home with mommy and daddy and pray he continues to get stronger. Great to meet you, Kimberly and your son, John. God bless.
WOW I’m sure it is incredibly hard to leave your baby at the hospital when you are discharged. So thankful my baby was full term and so happy this little guy is doing well!!
I will keep this little fighter in my thoughts, I’m so glad he was home for Christmas!
This is a beautiful story and I’m crying tears of joy that the family is now together at home! Kim, you are such a strong and loving momma – your story will be one of inspiration and your advice could be sooo helpful to any future NICU/preemie mothers.
Thank you everyone for your comments! I am so glad to inspire and get my story out there! You all are so wonderful!
Oh what a sweetie! So glad he was home with you for christmas!
I am so glad that everything turned out. You guys were blessed with a true fighter. Can’t wait to meet the Lil trooper. Love and miss you guys. This is a great article and very helpful to parents with preemies.
I’m so happy for this family! And all of the families that are home and doing well. I imagine they had a wonderful Christmas!
I can’t even imagine how tough it must have been to have to leave the hospital without your child. I’m happy to know that you’re all doing well – and you’re here to inspire other parents going through a similar situation.
He is adorable. God bless you! I had triplets who spent 76, 103, and 108 days in the NICU. So happy he is home!
I am so glad that everything is going well with him! I didn’t have a preemie, but I did bleed at 37 weeks on the dot a lot! I was put on a mild “bedrest” for the rest of my time just in case, since both me and baby were fine, and induced at 39 weeks but they never found out the reason I bled!
So happy to hear he was able to go home for the holidays! What a great gift 🙂 Thanks for sharing!
Thank you a year of Micro Preemie Monday. It was so heartwarming to read the stories of the little fighters and to see how they’re doing now. John is such a cutie and I thank Kim for sharing her story. Wishing them all the best.
Cori
I am so relieved to hear he is now at home with his family. I can’t even imagine what a difficult journey this has been. Praying for this sweet family.
Wow. What a trooper! It must be wonderful to have him home now.
So glad that sweet boy is home and doing so well!! XOXO
So glad to hear that he’s home now- what a precious gift he is!
I can’t imagine having to go through that. Your baby is a fighter and looks great.
What a touching story. So glad John is home now – that is certainly the best Christmas present ever!
I can’t even imagine what the parents go through in these situations. This little baby is such a hero & a fighter and absolutely adorable! So glad that he is back home and the family is complete now :). God bless and always keep this family together!
Shann Eva,
Thanks so much for bringing such a touching story. I am glad to have stopped by! Thanks for adding meaning to the blogosphere 🙂
Thank you so much! 🙂
Aw, what a little cutie! So glad that John is home with his family!
Oh, I am so happy he came home. What an amazing story. My son has that exact same Christmas outfit and this whole story gave me all the feels. Hugs to you, Kim! I am thrilled to hear you have the little man there at home with you. <3
He’s so precious and a tremendous fighter! So glad he was able to go home right in time for the holidays. Kimberly, you gave such beautiful advice. Wishing continued growth and health.
I’m happy sweet little John is home! I know I’m a bit late since this post has been uploaded, but I’m still really happy he’s home.