Wednesday, July 13, 2016

Our NICU Journey...

On April 21st, around 10am, when the doctor told us he thought we should deliver the baby immediately, in light of the complications I was having, we knew right away that would mean Lincoln would have to spend some time in the NICU.  I was only at the 31 week point in my pregnancy, so they told us to expect him to be in the NICU until his due date which was June 22nd. We thought that was something they just told parents to temper their expectations and prevent them from incessantly asking to take their babies home once they gained some weight and stabilized. We really expected he would spend 2-3 weeks there and get to come home. As it turned out for us, the estimated departure date wasn’t all that far off. I thought, before having Lincoln, that my time on bed rest was my own personal torture. I feel terrible now that I felt that way about my pregnancy (I seriously felt so much guilt about this), because the six and a half weeks Lincoln spent in the NICU were EASILY the hardest six and a half weeks of my life.  

Within minutes of Lincoln being born, the NICU doctors and nurses rushed him into the NICU. They told us immediately he was having some breathing issues and would need breathing support for some time. Matt went down to the NICU to visit him, and said he was looking good but was on breathing support (CPAP), a pulse oxygen monitor machine, a heart rate monitor, he had an IV and the warming lights. I was able to go see him the following day, and it was definitely emotional to see our 3 pound 13 ounce tiny baby with tubes in his mouth, hooked up to a ton of beeping machines and an IV. I couldn't help but cry. It was so hard to see him like that and not know what the future held for us. Once we got over that, we started meeting the nurses and doctors and learning the routine.

For anyone unfamiliar with the NICU routine, for us it entailed scrubbing our forearms, hands, and fingernails with soap and water for 3 minutes and putting on a gown every time we came to see him. Then, we had to sign in and show our bracelets identifying us as Lincoln’s parents.  After checking in, we walked over to Lincoln’s station and met his nurse for the day.  At this point, the nurse would give us a report of Lincoln’s status and if it was "hands on time" I would get to take Lincoln’s temperature and change his diaper.  Most days, I would try to go to the NICU in the morning for a few hours then I would go home to spend time with Andi in the afternoon and Matt and I would try to go together at night, around the time when the doctors would be making their rounds so I could hear what they had to say about Lincoln’s status and I could pepper them with questions. And after the first two weeks, I got to hold Lincoln every time I visited him, which I loved so much but it was also very stressful because of all of the wires and machines that he was hooked up to. Every time I would hold him and a machine would start beeping it would make me so nervous. Feeding him didn’t start until much later, as he wasn’t ready to be fed. He was on strictly IV fluids for a while and then they slowly started giving him breast milk in his feeding tube and decreasing the amount of fluids he was on.

After the first few days, Lincoln’s breathing stabilized and he was taken off of the CPAP and put on a nasal cannula. He was starting to tolerate small amounts of breast milk and his bilirubin levels went down. He seemed to be on the schedule we had in mind for him, meaning bringing him home in a few weeks. In fact, he was doing so good that first week or so, that they quickly moved him out of the front portion of the NICU designated for new and/or acute patients into the back area called “progressive.” It felt weird and scary to me that he got moved out of acute so quickly. I actually really freaked out when that happened because it seemed much too soon. He was only a week old and so small. I knew it was a good thing but I also knew that he wouldn't have as much one on one care and it made me very nervous. But, we were happy he was doing so good.

Then, on the Sunday after he got moved around 10 in the morning (I was getting ready to head to the hospital) the hospital called me and my heart sank. The nurse said that Lincoln was having non stop Bradycardia episodes so something was going wrong. She said they were going to do a septic workup and that I should come in immediately. A bradycardia is when the baby stops breathing and his rate drops to very low levels. This is something you really hope to avoid happening with a premature baby because it is usually a sign of something going wrong. I will never forget that day. I was a mess driving to the hospital. I just kept saying why is this happening. I didn't understand. When I got to the hospital and went to get buzzed into the NICU the receptionist told me they were moving him and I couldn't come in yet. So of course I really lost it and was so incredibly scared. When I finally got in the NICU there were nurses and doctors all around him. And my little Lincoln was laying there lifeless. He looked so sick and was not moving and his machines would not stop beeping. I am crying as I type this, but he almost died that day. The NICU doctor had him moved back to the acute side and started giving him IV antibiotics immediately while they waited for all of the results of the tests they ran to come back. I remember sitting there with him for hours and him just having Brady after Brady until the Dr. finally came over and said if this continues much longer she was going to have to intubate him. My heart sank again. Thankfully it was like Lincoln heard her warning and the Bradys slowly stopped.The next few days were very challenging as we just waited and watched and hoped Lincoln responded to the antibiotics. Finally when the results started coming in, it showed that he had a Staph infection in his blood and would need to be on antibiotics for about 20 days and need to keep getting tested to make sure he was responding to the medicine. I was shocked and confused as to how he got this infection. I was so upset because everything we had worked on (his breathing, tolerating feeds and his billiruben) all went backwards. He was put back on CPAP, back under the lights and they had to stop giving him breast milk.

It was around this time that I started getting closer with the NICU nurses and requested certain nurses act as Lincoln’s “primary nurses” when they were on shift. What this meant was I would be able to establish some consistency of care with the nurses and relationships with Lincoln’s primary caregivers. To be honest, some of the nurses that he had really did not take care of him as I would expect, and I was already highly emotional with everything going on, so I really needed to know Lincoln was being taken care of when I wasn’t there. It was so incredibly hard for me to leave him everyday and hope and pray that they were taking proper care of him. To this day we don't know for sure how he got the infection but it most likely was from one of his IVs. His veins were so small and week that they were having to change his IV twice a day and they tried to get a PICline twice and they couldn't.

After a few days of the antibiotics, Lincoln showed signs of stabilizing, but then we got some more bad news. The doctors wanted to make sure the infection he had was just a staph infection, and that it didn’t travel to his brain and spine, so they told us they would need to do a spinal tap on Lincoln. This news just broke my heart  Such a hard thing to have that procedure performed on my tiny baby. That was a really really hard day for me especially because I knew any needle entering his body was a chance for another infection. I was literally traumatized. But, thankfully, the results of it came back negative, indicating the infection was in his blood but not his spine or brain.

And yet again more bad news. A day or two after the spinal tap they ran some routine blood work and it came back showing that his blood levels were off. So they told me he would need a blood transfusion. I freaked out yet again. They kept reassuring me that this is very common for premature babies and that they respond very well to it usually. But for me it was very traumatic (oh boy, as I am writing this I realize everything was traumatic for me). It was just one more thing that my poor baby had to go through that I didn't want him to have to go through. I just kept saying that it should be me lying in the hospital bed not me innocent baby. I would have done anything to take his place and to take all of this pain from him. Thankfully it was fine. He got the blood and it did help him. But I will never forget that day.

Everyday I was so scared my phone was going to ring again and it was going to be the hospital telling me something else was going wrong. It was so awful. Everyday driving to the hospital not knowing what they were going to tell me was so hard. I literally felt like something could go wrong again so quickly. When premature babies get sick they get really sick really fast. So I was scared and there were so many times I would just sit there for hours because I was to afraid to leave him.

Over the next few weeks, we started feeding Lincoln some of my breast milk with a feeding tube, and he was tolerating it really well and gaining weight. So once he was tolerating a full feed through his tube they were able to stop the IV fluids, which was a huge accomplishment in his development. Another huge day was when he got taken off of the nasal cannula and just on room air for the first time. I will never forget the first time I saw him without all of the tape and tubes on his face .He looked like a new baby! Once he was about 4 weeks and finished with his antibiotics they moved him back to the progressive section. This scared me, sort of, because I knew this was the part of the NICU where he caught the infection. And once again I knew he wasn't going to be getting as much one on one care. In the Acute section most of the nurses only have one baby (sometimes 2) but in the progressive they can have up to 4 babies. But, it was a sign he was back on track so I was very happy.

          Once Lincoln was finally just breathing room air and was tolerating a full feed in his tube we were able to try and start nippling him. Babies don't learn to suck, swallow and breath at the same time in utero until 34 weeks. So this was a challenge for Lincoln to figure out. I started pumping immediately when Lincoln was born. I pumped every 3 hours and since he wasn't eating at all and then only small amounts I had a huge supply of breast milk built up. Our entire freezer was full. There was no room for food! So when the time came to give him his first bottle I was excited and of course very nervous. I didn't know what to expect. He still had his feeding tube in so that whatever he didn't drink they could give him through the tube. Oh My God feeding him was stressful. The machines would go off because he would start choking and he would always get so tired from sucking and wouldn't be able to finish the bottle. 

             At this point his ability to take all of his feeds from the bottle was the only thing keeping him in the NICU. I was so frustrated because I was worried that while he was there learning to eat he was going to get another infection or catch something. Everyone just kept telling me don't worry its normal. He is still so weak and gets tired easily, etc. They all said I would see that all of a sudden its like a light bulb goes on and they learn how to eat. Well it felt like that was never going to happen. Then I remember it so well. One Saturday I went in for the entire day to make sure I could be the one feeding him and what do you know that day he took all of his bottles. I got so excited and was sure we would be going home in a few days. 

       Well, I got a little ahead of myself! The next day I went in and he wouldn't drink anything and we had to give him all of the feeds through his tube again. I was so discouraged and of course I thought something was wrong. I thought something was going on that was making him week and tired. But of course they all just said its normal its fine. So I tried to just accept it! A few days later I went in and was trying to give him the bottle and he was fighting it. He wasn't too tired, he just didn't want it and was making a face like it tasted bad. So out of frustration I just asked the nurse to give me a bottle of formula because I just wanted him to come home. Well, what do you know - he chugged the whole bottle and that day we only gave him formula and he drank every single bottle. 

           Turns out that my breast milk had a lot of lipase in it which makes the milk smell and taste bad so Lincoln did not want to drink it. That meant all of the breast milk that I had in my freezer was bad. He would't drink any of it. I was obviously a little disappointed but at the end of the day I was just happy we figured out what the problem was and Lincoln was eating and growing. And what do you know, a few days later he was able to come home!

         I will never forget the day we brought him home. It was so special and so scary all at the same time. We were so excited to see how Andi would react. But with him being premature we were even more nervous than we were when we brought Andi home. It was the best day and we were finally home as a family of four. There were so many times when I didn't know if or when he would come home. It seemed so far away for so long. 

        Having gone through all of this changed us in so many ways. Nothing else matters to me accept my family. I realize that things that I used to get caught up in just don't matter. Life is so precious and it is so easy to get caught up in everyday things and forget that. I feel so lucky and blessed everyday that I get to call Matt, Lincoln and Andi mine and that God has given me the chance to be a mom, something that a few years ago I didn't think would ever happen. I am so thankful everyday that we are all healthy now! I am forever changed because of this and I know we are stronger as a family. 

       I am so thankful for all of the doctors and nurses that played a part in this journey from the time I was put on bed rest until the time Lincoln was discharged from the hospital. What they did for him and for us we will never forget. They saved his life and I am forever grateful! Lincoln's primary nurse will always hold a special place in my heart. She made a world of difference in our experience and I could sleep at night when I knew she was there with him. I still keep in touch with her! I am just so thankful for everyone that helped him! 

      Thank you all so much for all of the support through all of this. I would always look through all of the comments and messages and I would always cry because I felt so grateful to have all of your support. It really meant so much to us. 


  1. This whole experience of yours and your family just breaks my heart, but also makes me soooo happy that everything turned out okay! I am so happy your family is complete and all home together! Thank you for sharing such a personal, and scary experience! I would have been traumatized by it all, too!

  2. Wow what a story! As a mother, I can't imagine the pain and heartache you went through watching Lincoln. But your story is so touching! As I read it, I could just tell the strength you gained through all of this. One of my favorite pictures you've posted of Lincoln was on your Instagram and he was laying on a blanket that said God has you in the palm of his hand. I think that is so accurate to say with everything all of y'all went though during this time! So thankful sweet Lincoln is home and doing so well now! You are such a great mom and inspire so many each day.

  3. Hello Jade, I am not even close to be a mother and your story had made me cry all over. I am seriously a mess right now but at this point of the story, it is tears of joy for that little baby and your family. I followed your story on instagram and even on your blog (all day I would come to see if there was something new) but wasn't even close to imagine all of this.
    I wish you the very best and cheers to all the beautiful moments to come.

  4. Hi Jade, such tears reading your post. I was a very sick preterm baby and my mom still tells me stories like this...everyday after birth being a miracle. I prayed for you and Lincoln during your journey. I can only imagine what you went through. So thankful he is home and safe! I wanted to share that while I was working on becoming a lactation consultant I worked with a few moms that had a similar high lipase milk situation. I wouldn't throw out your stash yet. Some babies accept the milk when mixed with freshly pumped milk. You can also scald the milk prior to storing if needed. I know pumping is hard work and didn't want you to feel that it had to get thrown away. The La Leche League has a tip sheet on ideas (I'll share below). You may have been told these at the hospital, but just wanted to share in case. :) Love and prayers

  5. I cried as I read this, Jade! My son was also in NICU, but only for a short time. My experience was similar in that every change/update was traumatizing. He's almost 1 now and I will never forget those feelings. You feel helpless and not sure what to do or how to help. And when you're on the other side, your focus and insight has definitely changed. So thankful your sweet boy is now!

  6. Oh yes--I knew reading your story you had lipase issues--what a pain but there are tricks if you need any (I went to college with Matt and he just shared this link). So happy you are all home!--Maria

  7. I'm thankful we both have a happy ending to our story. I've seen all three of my babies be born premature and survive for their life (one set of twins). It's the most helpless I've ever felt. So many emotions of guilt, sorrow, happiness, sadness. It can only be understood by those that have felt it.

  8. Omg! Jade I was crying when I was reading this. Im son happy is he doing fine. God bless your family.

  9. God bless your beautiful family!

  10. What a terrifying but incredible story! I'm so happy he's home and doing good!

  11. I could not stop crying reading your story, Jade! I'm so sorry for all you and your family had to go through, but I thank God that your story has had a happy ending and you're all together and healthy! I think God must have some pretty amazing things planned for that baby boy! Love & prayers, Megan

  12. Thank you for sharing this! We went through the NICU rollercoaster 2 years ago and this brought back so many memories. I didn't realize how much I had forgotten until I read this! I totally felt the same way you did being worried over every phone call and constantly worried about getting bad news. It seems like they have 1 awesome day and you get super excited only to take 2 steps back the next day and feel like your baby will be in the NICU forever. I remember those drives to and from the hospital and thinking how I didn't care about anything in this world except for my family. Another thing I remember is when I would be out running errands or something while my boy was in the NICU it was weird to see everyone around me just going about their day normally while my world felt shattered. It's a good reminder to always be kind to everyone because you never know what the strangers around you are going through. Having a baby in the NICU just gives you a totally new outlook on life and a new appreciation for your babies. I actually had our second baby right after you had Lincoln. And I was totally traumatized and scared because of what happened with my two year old. When I saw your instagram and that you had Lincoln early my heart just ached for you and I'm so glad he's home now and healthy! What a true blessing! Again thank you for sharing your story. It reminded me that I need to sit down and write down my own. You are a great mom!

  13. Thank you for sharing Lincoln's story with us. I can't believe all that he and your family went through! You are such a genuine and beautiful person (inside and out!) and you and your family deserve all of the best!

  14. Such an incredible story. Thank you for sharing. I was never fortunate to have children, but I lived this story right with you. You are braver and stronger than you think! What a little blessing you have now. Love seeing all your photos and snaps of Lincoln and Andi. So adorable! Much love to you, Matt and your little ones! God Bless. PS: Don't forget their sunscreen. xo

  15. Thank you for sharing your story!! It's such a personal experience for you and your family and many of us wonder what that situation would be like. But there is strength in knowing you were able to prevail. I'm a mommy to a Lincoln (who is almost 2) and expecting another little boy in less than 3 weeks. This pregnancy hasn't been easy and I've struggled with a lot of mom guilt over having to share my love with another but it's so great to see how you have handled it from reading your blog posts and watching the snap stories! Thanks for including all of your followers in your journey! So glad little Lincoln is growing big and strong!

  16. Impossible not to cry reading this. I'm so glad Lincoln is okay. I simply cannot imagine going through that. Xoxo

  17. Dear Jade,
    This is such a heartbreaking story. I Hope that you now have always sunny dass with your family.
    Your Little ones Are so handsome. Enjoy every Moment with them.
    Kisses from Germany

  18. Sending big hugs to you and your family and I'm so extremely grateful to hear that he is finally home now!

  19. Absolutely incredible yet heartbreaking story! I am so happy that Lincoln has overcome all the hardships and now you have your little boy at home with you! You have a beautiful family! Sending my thoughts & prayers! XOXO

  20. OMG, I had to take a brake because I got too emotional. Soo amazing, so painfull, so happy . U Gave me all of those feelings.
    As my story had some common points with yours I feel so related to it.
    I had a FIV myself this year and guess what ? When I find out that there is just one baby( instead two as we planted) I was king of disappointed. The doctor was so happy and I was dreaming of twins with knowing all the risk. Only after reading your story I finally realize what is the story of a premature and all the struggle behind it.
    Thank u so much for the story. Thank you so much for the inspiration.
    Love and hugs all the way from Romania.
    Blesses to u and to your family.

  21. It's been one of those weeks where I have been trying to read this but kept getting interrupted by something! And oh my God I just finished it and am so emotional. I can't imagine ever having to go through something like this. I had no idea it was even as bad as this. You are a wonderful, caring Mommy and your babies are so lucky to have you. I can't believe how Lincoln was able to pull through all of that! He is truly a special guy and is meant to be here. I am so sorry you went through all of this but so incredibly relieved for you and your family that this is all over! <3

  22. What an amazing story you have to share with Lincoln when he is older. I have followed your entire pregnancy and this is something to be proud of. Your family is beautiful and I am so happy that Lincoln is growing strong and you can start enjoying your little family of 4. God Bless You and those beautiful miracle babies.

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