I remember just crying by his bedside feeling his little feet kick my hand looking for the boundaries of my uterus, thinking how unnatural it was and feeling so guilty that he was there. On January 2nd after about a week and a half Grant was finally off medications to maintain his blood pressure and I was finally able to hold or "kangaroo" him. It was so amazing to finally hold him. He was so little I remember his legs moving felt like little tickles on my stomach. Grant remained intubated and seemed to be improving that second week. The next week things really started to go downhill for us. Grant acquired a staph infection and his respiratory status worsened. He started having bronchospasms where he basically would completely shut down and the ventilator was unable to inflate his lungs. Of course he would drop his oxygen saturations to the 60s or below and had to be manually bagged back up. I remember just sitting hopelessly at his bedside on one of his worst days watching him turn blue and get bagged up for like the tenth time; honestly at this point I felt like he was never going to make it home.
The next couple of weeks were so hard and stressful. It didn't help that he was the smallest sickest baby in our NICU pod. It was so hard to see every other baby doing better than him and to hear them crying when I longed to finally hear my baby cry. I would just sit at his bedside all day and stare at his monitors just wishing that if I started at the numbers long enough they would get better. After a month of intubation the neonatologists started talking about administering steroids to get him off the ventilator. By this time the trauma of the ventilator had scarred his lungs and they didn't think that we would be successfully extubated without them. The steroids have serious side effects such as cerebral palsy, decreased brain growth and impaired neurologic function. Of course those were risks that I wasn't wanting to take. On January 22 my dad and Derek gave Grant another blessing and we decided to try extubation without the steriods. The neonatologists did not think that Grant would do it. I will always remember them saying "when he is reintubated" instead of "if he is reintubated".
So on January 25 we finally pulled out his tube. I can't even explain how nervous I was; I just wanted to see him try to breathe on his own, and luckily he did. I was so excited I almost passed out. Poor guy tried to cry, but he couldn't make a sound because he was intubated for so long, I still hadn't heard my baby cry. This is where Grant showed how tough he really is; even with the assistance of nasal CPAP it was extremely difficult for him to breathe on his own. His muscles were so weak I swear his chest sunk almost to his backbone when he took a breath and he was breathing about 80-100 times a minute. I was told not to be suprised to come in and find him reintubated because he was having such a hard time. Everyone was pretty doubtful that he would do it, but after about a week it started getting easier for him and then a week later he was moved to high flow nasal prongs.
At this point his respiratory status was improving, but we were faced with another scary complication. Grants direct bilirubin continued to rise which is different that the normal baby jaundice. This type of jaundice is due to liver damage, and the doctors were fearful that he had biliary atresia; a rare liver disorder where there are no bile ducts or the ducts are not patent. Biliary atresia requires major surgery and a probable liver transplant. The other possibility was that his liver was inflamed from the TPN (IV nutrition) that he was on for almost a month which can also cause liver damage.
His skin turned to a bronze with greenish undertones. After two failed nuclear scans which didn't show passage of bile into the small intestine we had to consult with surgeons who wanted to open him up and do a biopsy and examine his bile ducts. After everything that our poor little guy had gone through I didn't want to put him through any more pain. So his last month in the hospital, basically until the week he went home we were unsure if he had biliary atresia, but luckily he didn't. After another blessing his liver function started to improve and his bilirubin slowly started to decrease. I cannot even explain how suprised I was mid March when the doctors told me that I should start preparing and think about when we want to take him home. We had gone through so much
I didn't dare to dream or plan for that day; I felt like if I did hope for that I would jinx it and something else would happen. Finally on March 23, after three months in the NICU,we were able to take our huge 6lb 6oz baby home. I can't even express how grateful I am for the NICU staff, especially Grant's primary nurses who took such great care of him. It was such a comfort when they were there because I knew that he was in good hands and they knew how to deal with all of his antics. I will remember those who took care of him forever- I really feel that they saved his life. Even though it was rough, I know that we are so lucky and it could have turned out so much worse.
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