We are quickly approaching the two week mark of Judah’s second hospitalization…which means we are also approaching having a two month old son! Both are so hard to believe… We are hanging in there, and I feel like this time around is easier than when he was born and was just a “growing preemie”. We have seen what this little boy is capable of (twice!) and we want to get to the bottom of it before he comes home again, but I’m not gonna lie…it’s hard!
Our days are comprised of waking up and getting ready as quickly as possible to drive to the hospital in time to feed Judah and hear morning rounds with the Doctors to see what “the plan” for the day is, then eating lunch in the hospital cafeteria (and loading up with caffeine!!!!), then staying as long as we can stand it, drive home and try to keep our household together (sort of, at least) go to bed and repeat the next day. And all you people with kids out there thought it was exhausting having your newborn at home! (We have now done both and I think the hospital thing is much more tiring.)
It’s hard to believe it is only Wednesday…it has been a busy, test filled week so far! Monday morning Judah had a video swallow study where they “looked” (using radiological equipment) at the anatomy in Judah’s throat to make sure he was not aspirating (getting milk in his lungs) while eating. This test was negative so that was a victory. Next, the GI (GastroIntestinal) docs came to put a pH probe down his nose and it rested in the back of his throat to measure how much acid was coming up and how frequently he was having episodes of reflux…this stayed in for 18 hours. He was getting so tired of all the testing and was working a lot harder to breathe, it is so hard to watch your baby struggle.
That night, I stayed with him in the sleep lab for a sleep study. He was such a brave boy while the tech in the lab put over 30 leads all over his head (26 of them were on his head!), chest and legs. She wrapped his head with a bajillion bandages so that the leads would stay in place. Then there were two foam bands, one around his chest and one around his belly, to measure when he took a breath. Lastly, he was wearing two pulse oximeters on his feet and a cannula in his nose that measured the force of his exhalations and carbon dioxide. When she put in the cannula, he just lost it…he couldn’t take any more! I couldn’t really pick him up to comfort him because of all the crap all over his head and body, so I tried to “hold” him by practically laying in the crib with him trying to rock and pat him the best I could. I knew he was hungry, but he was so upset that he didn’t even want to eat. I finally got him to calm down enough to eat a little and I thought he was finally going to go to sleep, but he got so upset again. I just sat there with my head resting on his little metal hospital crib and cried too…I needed Colby so bad to help me, but only one of us was allowed to stay! We finally ended up giving him Tylenol because he was so uncomfortable – it’s sorta hard to get results from a sleep study if you never go to sleep! It felt like some sort of weird torture being in a room to be the one to comfort your baby, yet not even able to pick him up. But we got through the night. Colby got to the hospital really early and we got Judah fed and tucked into bed and went back home. Both Judah and I slept pretty much all day (he in the hospital and me at home) and we returned to the hospital that evening.
I’ve had some sad moments in the past few days. Last night I leaned over to kiss Judah’s nose and when I leaned back up, I had something like a “flashback” and the emotions of seeing his blue face as I leaned up from giving him breaths while preforming CPR on him came back. It was frustrating, all I could think was, “How messed up is it for a mom to have a flashback like that when she kisses her baby?!” And it is all of the little things: an empty sleep sack in his bed, his little hooded towel hanging on the back of the bathroom door, and the little playmat with no little boy doing his “tummy time” or the empty carseat (well, empty other than a bag/mask that the manager of the NICU at Marin General gave me “just in case”!). It is weird to feel like the only people “out in the world” that know I’m a mom are the people at the hospital: I feel sad when I see someone at Target or the grocery store with a tiny baby in a stroller and it’s hard. But at the same time, he is “making friends” at the NICU at CHO and there are a few nurses that want to take care of him each time they are there… that makes me feel proud of him and so happy that he is loved even when I can’t be there all the time.
I have been so encouraged by all of the Facebook posts, e-mails, blog comments, texts, and cards…it is the reminder that there are literally hundreds of people praying for us that have given us a little boost just at the right time. Every meal, visit, and package from Georgia have meant the world to us…it is an overwhelming feeling to be such a small part of the Body of Christ. Romans 12:4-5 comes to mind, “For just as each of us has one body with many members, and these members do not all have the same function, so in Christ we, though many, form one body, and each member belongs to all the others.”
Last night, Colby was praying as we were in bed about to go to sleep and was talking about how God, the Father, understands better than anyone else the pain of being separated from His Son. I am so thankful to be married to a man that shifts my perspective from sorrow and pain to peace through prayer. I looked at him last night and asked if he could have ever imagined that on September 22, 2007 when we said, “For better or worse…” it would be anything like this. We just smiled and said, “No way!” but it is an incredible thing to feel the pain of the Refiner’s fire, knowing that you are making it only through dependence on His strength. We are daily defeating the Enemy’s plan to destroy this family…Colby and I are closer than we have ever been and I have to brag a little on what an incredible man he is. He has been my rock: letting me cry when I need to, but knowing when and how to re-shift my focus to the Lord and his plan for our family. Continue to pray that our marriage and family would continue to be protected and strengthened each day.
The Lord is so merciful and knows when we need a break from the super hard stuff. Today, that came in the form of a really alert little boy! We had such a good visit with Judah – I’ll post some of the pictures. He is starting to really look at us and enjoy looking at toys and the mobile on his bed and it’s the cutest thing you’ve ever seen! We are beginning to get some preliminary results from a lot of the tests, but nothing definitive enough for them to mention when he may come home, so we are trying to be patient!
We love you all and appreciate your prayers, care and concern for our family. This past week, we got a 2010 review from our blog host that stated we had over 10,000 viewers on our blog for the year! May God be glorified through our lives and the life of our little boy.