Remembering the NICU part 3

Ok, last NICU post :-) I could write a book on my experience, but I will limit it to three posts for now :-p


So, eventually the NICU became my second home. I would drive there one or two times a day. I memorized the curves to the parking structures. I probably could find the hospital from my car with my eyes closed. The first week was the hardest. Wesley kept getting sicker. Tubes, and more tubes, and x-rays, and more x-rays. He tested positive for MRSA (a really bad bacteria), and was placed in "confinement" which really meant that anyone that touched him, even for a second, had to put on a plastic gown and gloves. If it got into his blood stream, it could have killed him. He was immediately put on two antibiotics. Also, he was put on paralyzing medication to prevent him from moving and pulling out the tubes. He was on blood pressure meds, and pain meds. He also had an IV drip to nourish him, and a lipid blend being put into his blood to gain weight since he couldn't eat due to all the tubes. He was on a high frequency oscillator now, instead of the regular ventilator because that one wasn't helping him. It basically forces like 300 short breaths into him per minute. It is so fast and quick it made his whole body shake. It got to the point where the doctor took me aside and told me that if he got any worse, they would have to put him on nitric oxide, and if that didn't work, he had to go to Loma Linda to be placed on a machine called ECMO, which breaths for you amongst other things. Not something a new mom wants to hear. His blood count was low, which meant he wasn't able to absorb enough oxygen into his blood, so he needed a blood transfusion. I remember just sitting by his little "nest" (the nurses bundled up blankets around the babies to make them feel enclosed like in the womb, and it looked like a nest), watching my baby who wasn't moving because of the medication, wondering what could I do? When ever I whispered "I love you" to him, I got teary eyed because I didn't know if it would be my last time saying it. I hate to sound dramatic, but for the first few days, I really didn't know. I rememer one of my favorite nurses saw me crying, and told me, "you know...when he is 16, you are going to have bigger worries and concerns than what he is going through now...like what to do when he gets a girl pregnant!" I remember actually thinking, which feels crazy now, I would rather have that happen than see him like this!!!! Well.....um....not really so much, but that was the state of mind I was in. It was depressing. I had a hard time seeing people laughing and having fun, when I was so sad and morose. I have never felt like that before.

Wesley received a blessing, and many, many people were praying for him. I know miracles happen, because just as fast as he got sick, he started to recover. One day he was put back on the regular ventilator. Then, he was put on pressurized oxygen, and then regular oxygen. I am not a patient person, so it was hard to have to be so patient with the recovery process. I just wanted to take him home, but I knew he needed time to heal. A week after he was born, I was finally able to hold him again. I was so scared to hurt him. He had so many tubes and wires. His monitors were always beeping. I remember the first time the nurse asked me to help change his diaper. I
was nervous, but excited. Yes...excited to change a diaper. Eventually the NICU became my home. I was able to handle him like a pro. The monitors were always beeping, and they soon didn't bother me any more. I even knew how to reposition him if he wasn't getting enough oxygen. Feeding him was really hard at the beginning. Preemies dont eat like a regular baby. You have to hold their jaw a certain way, and stimulate them so they dont fall asleep, and tap the bottle certain ways to remind them that there is food in there. The first time I tried, Wesley wouldn't eat from me at all. The nurse took him, and helped him eat the entire bottle. I felt so defeated. I felt like I couldn't even feed my own baby. Eventually, day after day, week after week, I soon got the hang of it, and Wesley's little jaw muscles got stronger and he could eat more. I tried to be there for the feedings, because it was the one thing I could do to take care of him. Everything else was left up to the nurses. I didn't like that someone else was taking care of my baby, but that is how it had to be. He got fed at 12, 3, 6 and 9 day and night. The rest of the time he was laying in his bed, sleeping unless I was there to hold him. It was hard going to the hospital everyday. It wore me out. I had to pump all the time at home to keep a supply of breast milk for him. I was constantly taking frozen bags down to the NICU so they could feed him breast-milk. He never had formula there, and even though it was such a trial, it was worth it. I could write a book on pumping too, lol.

Eventually Wesley was strong enough to come home, but was still on oxygen. We waited, and waited. Everyday they tried to wean him off, but his oxygen levels kept dropping. A week went by, and another. Eventually the doctor told us that if we wait for him to be off, it could be months. So, a huge ballistic missile (as our doctor called it) of an oxygen tank was shipped to our house, along with a 25 foot cord. We also had a small tank for traveling. Seriously...if you have a baby that can breath room air, you are very blessed! We finally got to take him home. It was kind of funny. We brought him inside, and I put him in the bassinet (which was set up just liek his NICU bed. At 3 we feed him, and at 6, and so on. I was so accustomed to the NICU schedule, that I didn't know what else to do, lol. I washed him like they did, I changed him like they did, I fed him like they did. I was a pro though...I felt like I was doing that for years. It was hard adjusting to life at home, but sooo nice. In home nurses had to check on him because I wasn't supposed to take him out and expose him to germs. A cold would have put him back in the hospital. Being on oxygen was fun, let me tell you. I tripped over it many, many times. SOoo many times Wesley pulled it out of his nose, and ripped the tape off his face. It was soooo red and sore, but I jsut had to keep putting new tape on top of the irritated skin. Poor little guy. Finally the wonderful day came a month later, when he was 2 months old, that he was taken off the oxygen! YAY! It was seriously soooooo wonderful.

By the time he was 4 months old, he was already in the 50th percentile. He is healthy now, and has only had one little cold. He does have to see a high risk specialist just to make sure he continues to develop normally. He is a little delayed in a few areas, like in his gross motor skills (crawling/ pulling himself up). He will probably go to therapy to strengthen his core muscles, but if that is they only issue that he has, I am so grateful. He is the perfect little boy, and I love him with all my heart.

I know that everything happens for a reason. I am not glad that all this had to happen, but I honestly wouldn't change it. It made me be a better mom, and a better person. I dont know if I would appreciate life, and my children as much as I do after going though all that. I love the quote, "We say we cannot bear our troubles, but when we get to them, we bear them." You do what you have to do in life, and make sure you become a better person. I love those nurses and doctors of the NICU. They are such wonderful people, and I want to thank all of them! I love them.