We wanted to arrive in the NICU early today as the team of doctors make their rounds in the morning. The nurses told us based that based on the set up of the NICU and the location of Liam’s NICU pod we should expect the doctors to be in Liam’s pod around 10am. We got there about 10 minutes prior and sure enough the doctors were in the hall making their way towards Liam’s pod. Liam’s nurse today was Leigh. She’s been with him since Monday and I already adore her. She’s great. I wish she was wish him everyday but with their rotation we won’t see her again for several days. We caught up with her and she gave us a brief update on Liam knowing the doctors were on their way in.
Dr. Reese is the main neonatologist and is Liam’s doctor in the NICU. Dr. Holland is the attending physician I believe and we also met the resident. The names and faces become a blur because there are just so many. Anyway, they explained they would just be updating the team on Liam’s diagnosis and current status and would speak to us directly later. I have to admit it is a little intimidating meeting so many doctors and trying to keep it together. I do better dealing with Liam’s NICU nurses.
Dr. Reese asked me a couple of questions about Liam’s fetal movement and let us know he would be back after rounds to speak to us directly. We are also scheduling a meeting with all of the doctors on Friday to get the big picture of Liam’s medical condition.
In the meantime Liam’s heartrate was still up and Leigh was drawing blood for a blood gas. The thinking was he needed more fluid so a new bag was added. The goal was to get his heartrate down to a normal level and try to relax him. We also did his care and I got to change his diaper for the second time since his birth and wipe him down a bit as well as take his temperature. Liam has a catheter but he is starting to pee around it and we are still waiting on his first poo. As we were doing his care, Dr. Reese returned and examined Liam and then started talking to us.
In Dr. R’s defense he stated he was going to be completely honest with us throughout Liam’s NICU stay and if he did not have an answer for us he would tell us. However, the doom and gloom is so hard to hear especially when my emotions are already raw. He explained the concerns he has about Liam’s bones. Typically the contracted muscles he sees in Liam, his hands etc are typical of babies with little fetal movement due to lack of amniotic fluid. In Liam’s case he had too much amniotic fluid to move around in. Dr. Reese feels his issue is neurological. Liam lacks muscle tone in his upper extremities. Normal newborns have creases in their arms and legs from movement in the womb. Liam is lacking this trait. Dr. Reese will most likely call in a physical therapist and an occupational therapist to work with Liam but he is waiting until we know about Liam’s condition.
Dr. R is sort of like a family physician so he will call in the specialists for Liam whenever needed(already underway). At this point we are relying on the geneticist and it is likely a neurologist will be called in as well. We are still waiting for the results of the MRI.
Dr. R did mention it is possible Liam’s condition may result in a shortened life span but followed up saying he just doesn’t know yet. It is more of the same, prepare for the worst, pray the best. However, my hormones are not feeling that right now so today was very, very hard for not just me but J too.
After Dr. R’s visit I had to get out so J led me downstairs for fresh air and a walk around the block which helped a little. When we returned Liam’s grandmom was signing in with Jason’s aunt. I could barely speak I was still so upset.
Our social worker Lauren was waiting for us and walked me back encouraging me the entire way. Leigh was working with Liam again and I was able to give Liam a little sponge bath around his neck. As we were watching over Liam we noticed he was moving a lot and bicycling. Bicycling is term used in NICU for a seizure. Leigh had me cradle Liam’s head and feet and try to calm him down. It wasn’t working and his feet were very stiff and hard. The attending was paged and she agreed he was seizing. They upped his med dose. He is on Fentanyl and still on the Phenobarbital. Bllood work and another blood gas was ordered. It was fairly traumatizing to witness and I just hate that my little boy is going through all this. I don’t want him in pain. The attending explained that it is very difficult to assess what is causing Liam’s seizures and she felt part of the cause today was the fact that the phenobarbital was just below a therapeutic dose. She also mentioned Liam’s MRI showed abnormal brain function. She did not elaborate and we did not pursue as we want all of the results at one time. They were able to calm Liam down and the seizure lessened.
We did return tonight and Tiffany is Liam’s current night nurse. She has also been with him since Monday but we won’t see her again for several days. So far Leigh and Tiffany are my favorites.
Liam looked much better tonight. His coloring was back to normal but he was also heavily sedated. Tiffany did his care and tonight I told J to help. He changed his first diaper. Again it was clean but he changed his first diaper EVER! I took a ton of pictures to document the occasion. He also assisted Tiffany in weighing Liam which required him to lift Liam about 2-3 inches off his isolette. Tiffany also showed us how to cradle lift Liam which will not quite the same as holding will help us bond with him a bit more. It is dependent upon who the NICU nurse is in charge of his pod at the time but Tiffany told us she is perfectly comfortable with us doing so as is Leigh but the newer nurses may not want us to do so solely due to the precariousness of Liam’s breathing tube. Respect the tube is the NICU motto.
J and I discussed on our way home this evening how we always feel better and more positive after seeing Liam at night. The NICU is quiet and Liam is typically settled in(ie heavily sedated). Unfornuately, we need to be there during the day to speak with his doctors so I need to rely on Him more often to get me steady when the doctors give us their opinion.
Please pray for strength for J and I as we prepare to receive Liam’s MRI results. Please also pray for good results for Liam’s MRI.
An update from Stacey from Facebook:
So please keep them in your thoughts and prayers. This is going to be a long road for them and they need all the wonderful thoughts sent to them and baby Liam.