WITH EYES WIND OPEN

When Mike and I returned from getting some air, we went back and Owen was resting comfortably. We were told he wouldn’t wake up until the next day when they ween back his meds. They advised us that we should try and get some rest tonight and sleep in one of the rooms they had reserved for parents who stay over night. We didn’t want to leave Owen’s bedside, but we were so tired. I knew that the harder days were on their way once he woke up, so we took the opportunity to try and get as good a nights sleep as we could. We stayed by his side that night, until neither of us could keep our eyes open. We kissed him on the forehead and held his hand so he knew we were there, then went to the room to try and sleep.

We woke up the next day and got some breakfast. When we returned, they told us they slowly started weening him off and soon he would probably open his eyes. The tricky part was going to be keeping him sedated enough to not try and pull his breathing tube out. I warned the nursing staff that he is a fighter and when he wants something he will be determined to make it happen. My biggest fear was that he was going to extubate himself and that would be an emergency. He was dubbed a critical airway because his tongue was so swollen from surgery. The last thing I wanted, was him putting himself in danger. I think, at first, the nurses thought I was giving Owen more credit than he was due. They are used to extremely fragile tiny preemies. I knew that they had taken care of a few BWS babies in the NICU, but their usually ones that go there right after birth. Their not usually 7 week olds who have adjusted to being home and being in a routine. Owen, from birth, was always incredibly strong. He held his head with insane control from the very beginning. He was a few days old and he would try pushing up on his hands. I knew that once Owen became more awake and aware of the breathing tube he wasn’t going to have it. Another thing I think the nurses thought I exaggerated was how much Owen ate. At this point in time I was strictly pumping and feeding Owen by bottle. I told them he eats about every 3-4 hours, anywhere from 8-12 ounces a time. I also told them when he is hungry he will have a fit till he is fed, which was another concern of mine, since he had the breathing tube. I was trying to cover all the bases of things that I knew would agitate him and make him want to take matters into his own hands. They literally could not wrap their brain around some of the things I was telling them. In the beginning, they definitely thought I was over feeding him. Don’t get me wrong, Owen’s NICU nurses were AMAZING. They were compassionate, friendly, and took amazing care of our son. I think the lack of knowledge on his syndrome is why they just couldn’t fathom the amount he ate and how strong he was. None of their skepticism was out of ignorance or annoyance with me, it was strictly because babies they usually deal with eat maybe 5-8 ounces a day, if that. They said they would start slow with the amount of breast milk they put down his feeding tube. It didn’t take long for them to realize that Mommy knew best.

I will never forget when Owen opened his eyes for the first time. Mike was standing next to the bed and laid his hand on Owen’s chest and said his name. Owen’s eyes flashed open and looked directly at my husband. To this day, Owen has such a bond with my husband, it melts my heart. I swear, even at 7 weeks old, on heavy narcotics, with a breathing tube in his nose, he knew that his dad was the one looking back at him. As much as I wanted to run over and to have him see me to, I wanted that moment for my husband. It was such a tender moment, one I will cherish forever. Every time Mike spoke his name, Owen would look, blink, and respond. I immediately started to cry. After a few minutes I walked up to Owen’s crib and laid my hand on him. He looked at me for a long time. He kept looking back and forth at Mike and I. I asked the nurses how awake he would be throughout the day. They said it all depends. They said he would still sleep a lot because of the meds and just his overall need to heal.

The next few days were extremely difficult for the exact reasons I was fearing. Owen was so hungry and he was over the breathing tube. He wanted it out. He was still sedated enough to not have the strength to reach his hands up and rip it out. But he struggled so hard with his head. When he would get agitated he would try shaking his head back and forth, and then he would start to gag. It was so painful to watch. I wanted to beg them to increase his morphine dose. Instead of doing that, they would give him what they called morphine rescues. If he was getting so agitated, to the point that they would lose his airway, they would give him a bolus dose of morphine to calm him down. These days were so tricky, because in order for him to have the breathing tube removed, he needed to ween off of the morphine. The balancing act was so stressful. At this point though, the nurses were starting to believe me about the amount Owen ate. Especially because of the amount of milk I was pumping and giving to them. I would bring them 16 ounces from 1 pump session. They were floored. I was pretty proud of myself to be honest. I was concerned that my supply would deplete from not holding him, even though I had yet to leave the hospital. This was also the point that the mom guilt started to kick in. It had been a few days since I saw our son Michael. After the first night, Mike went back home and held the fort down with Michael and our dogs. He would come back to the hospital whenever he could, but we both agreed that we did not want Michael seeing his brother until the tube was removed. We knew it would be to much for him. How are you supposed to explain that to a 3 year old? All he would see, is his bother laying lifeless with tubes coming out of him, and stitches on his tongue. That period during the recovery process was so difficult. I felt torn. I wanted to see Michael so bad but I didn’t want to leave Owen. I tried my best to Face time Michael when I could, but I took one look at him on the phone and could tell he was so confused. He didn’t understand why half of his family had been gone for days. He would keep asking to see his brother and I would make up an excuse why he couldn’t. I just could not show his brother to him the way he was at that point. I knew at some point I would have to go home for a night and be there with Michael. I could tell he wasn’t going to last much longer and I could also see the stress on my husband’s face and hear it in his voice. No matter what decision I made, I felt like I was losing. If I chose to stay with Owen, then Michael suffers. If I chose to go home, Owen is all alone. This is the constant struggle moms face. We need to be in a million different places at once and cant be, so we were forced to make a choice. For the time being I chose to be with Owen.

The one thing that was really awesome during Owen’s recovery was watching his tongue heal. Within only a few days we could see Owen’s lips ! That sounds so silly but we never knew what they looked like till this point. His tongue was so big we never saw them. The difference just a few days post surgery was crazy. It gave me a lot of hope. Especially, because one of my biggest frustrations with his syndrome, is I feel like I’m watching things happen with him right in front of my eyes, yet all I can do is wait and see how things turn out. For example, his hemihypertrophy in his legs. I watch the difference happening right in front of me, yet there’s nothing I can do about it until he’s older and we see if they even out or if they affect his spine or hips. As a mom, you want to protect your kids from things BEFORE they happen. Unfortunately, you cant really do that with BWS. So the fact that I was watching Owen’s tongue improve right in front of me was a breath of fresh air. I was so excited for my husband to see it when he came up next. Thankfully my husband and my sister Michelle work at CHOP, so I had a lot of support during the 10 days we were there. And I sure needed it. We weren’t out of the woods yet. Owen still needed to be extubated, taken off pain meds, and feed from a bottle, before they would allow him to be discharged. I knew we had a lot of hurdles to clear and as much as I wanted to clear them quickly, I knew that he also needed time. I needed to accept that I had no control over the amount of time it took for him to heal. That was on him and his body and I needed to accept that.

One thing I will say, is that as a mother, you know your child better then anyone. I don’t care if you have a medical background like I do or not. That makes no difference. You know what is best for them and how they act and behave at home. CHOP definitely takes a slow approach, rightfully so, when it comes to healing and not pushing their patients. This is where I started to really have to advocate for our son. I was recognizing that his nutrition needed to be increased. I was also recognizing that he wanted the tube out. Sooner rather than later. I became annoying constantly asking his feeds to be increased, but I didn’t care. Owen was starving ! I understood the caution about overfeeding an intubated child. In no way did I want him to vomit and aspirate, however I knew if we were going to keep that tube in much longer, they needed to feed him more, so he was less agitated. We were now on day 4 post surgery. I looked at Owen and could tell this was going to be his last day with that damn tube in. Either they were going to take it out or he was. One way or another that was his last day with the breathing tube…

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