Baby Liam: Don't Want to Get Our Hopes Up, But....

Today was another big day for Liam and he continues to surprise everyone. At the end of last week we learned that Liam was scheduled for two MRIs for his brain and spine, which is standard protocol for spina bifida babies. This is to establish a baseline so the doctors can monitor how his brain develops over time during follow-up visits and to assess the need for a shunt if one hasn't already been implanted. As anyone that has had an MRI can attest, you must remain completely still during the procedure and this is especially difficult for babies given all the noise the MRI machine makes. In most cases they have to sedate the baby so they can get the necessary images. We were concerned that if they had to sedate Liam, it would set us back since they would have to intubate him (placed on a respirator) and we weren't sure how long after he would be back to where he was. The plan was for us to feed him right before and he would sleep through the whole thing. This would require us to time his feedings with the MRI department's schedule so he wouldn't wake up during it. This is easier said than done since any lab can get behind due to unforeseen circumstances. Plus, we're dealing with a children's hospital where the patients are a little hesitant to enter the MRI machine.

Someone made the comment that he never looks upset; well
here is your proof. He HATES having his temp taken. Note the
gigantic gown he had to wear for his MRI.

We were worried sick over the weekend and kept praying that he would not have to be sedated. Luckily, his nurse today was one of our favorites and she informed us that we could go down with him to radiology and wait in the waiting room for him. When we arrived in the MRI waiting area a nurse carried a baby out and said that he failed the test since he was moving too much and would have to be rescheduled and intubated to perform the MRI. This did nothing to set our minds at ease. However, his nurse reassured us that she would do everything in her power to help him remain calm. After a kiss from both mom and dad he was off. Waiting for him to complete the test was nerve wrecking. We could hear the MRI machine going off in the other room and we felt horrible that he had to hear those loud noises. A little after an hour his nurse brought him our to us with a big smile on her face. She told us that Liam did such a good job that they were able to do both the brain and spine MRI at the same time today. That means no MRI tomorrow. We were so happy, we couldn't stop smiling. There was a boy about 7 years old waiting to get an MRI and his mom told him if a little baby can get an MRI and stay still then he can too. The boy was amazed at Liam and thought he was the cutest thing. Hopefully, his MRI went as well as Liam's.

Right after his MRI. He had bright yellow
sticky headphones on to block some noise.

When we got back to the NICU the nurse said that since both MRIs got completed today that we might be going home on Wednesday if the results were good. We couldn't believe what we heard. Sure enough she called the doctor (fellow) and she immediately asked if we had a car seat and told us to bring it up right way so he could take his car seat test tonight. If he passes his car seat test and his results are okay on the MRI we could be discharged as early as Wednesday. We have been waiting for 3 days to get his hearing tested. The technician seems to come at the worst possible times when he is eating, sleeping or being fussy. She never listens to when the nurses tell her to come. The doctor told her they are going to harasses her to no end tomorrow until she does his test. We've also been waiting to meet with someone from the spina bifida clinic to help us transition his care back home to Virginia. Liam's going to have a lot of follow-up appointments once he's discharged and it would be nice to take him somewhere closer than Philly. UVA is supposed to have a clinic and we are hoping the folks here in Philly will know how good their program is. If it comes to it we'll drive back to Philly for his appointments, but it would be nice to have something closer to home.

Back in my crib stretching out after a long afternoon.

Ultimately, the fellow and attending physician will get together with his other staff (NP, PAs, PT, RNs..the list goes on and on) to make the decision on his discharge. If it doesn't happen on Wednesday then it will be later in the week. Both doctors believe that there really isn't a need for him to be there anymore. He still has some Bradys (low heart rate/breathing) when he eats but they are super fast and he responds really well to them. Mom and Dad will be the only ones allowed to feed him for a long time since we know his cues and how to get him going again. He thinks he is a line backer already and wants to guzzle his bottle which he ends up choking on if you don't pace him REALLY slow.

We are excited/nervous about bringing him home. We are more than ready to be back at our house with our dog but at the same time we have always had the nurses helping us and answering our million questions a day. We know we will be even more exhausted than we are already (Allison is up pumping in the middle of the night already) but it will be worth it. Nurses were coming by and saying bye to Liam and us this afternoon. They were afraid we would be gone before they worked later on in the week. He sure does have a lot of girlfriends at that place, but something tells us he will have a lot at home too.

We also wanted to thank Jackie, Allison's friend from Sweet Briar for coming up to Philly on Saturday. Allison's godparents, Ann and OC, from Texas flew in to Philly to meet Liam on Saturday. It was the most wonderful surprise and was really a touching visit. Liam literally has friends from all over rooting for him . Tomorrow night we are meeting Lisa and Micah for dinner so the post might be short and posted later in the night. We will update everyone as soon as a discharge date is given. We will leave you with some pictures from the weekend. Everyone likes pics right?!