On , around , 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.