I have been meaning to write this for a few days, but getting time on a computer around here is hard to come by between Jackson’s latest obsession with Umi Zoomi and Frank finishing his last class for school. So, I am spending my Friday night at 10:30pm finally getting a chance to sit down with a computer all to myself!
Reader beware: it is long!
I am combining both his MRI and 4 month Well Check because they were one day apart.
This past Wednesday we made the trip to Dallas for Jameson’s first MRI to check on his little pea brain. The MRI requires anesthesia so all food had to be cut off 6 hours prior to the MRI, which was scheduled for 8:00am – so 2:00am was the latest he could eat. Jameson usually has his last “meal” around 10:00pm and sleeps until 6-7:00am. I thought about setting my alarm for 1:00am to wake him up to see if he’d eat, but I didn’t want to mess with his schedule in hopes for a smoother ride. But, lately he’s become a lot more active and burning more calories, so here and there he’ll wake up at some point between the 10-7 time frame to eat. Well, of course this was one of those nights.
I originally set my alarm for 2:30am – Dallas takes about 2 1/2 hours so we had to leave about 3:30-4:00am to get checked in by 7:00am. At about 2:29am Jameson woke up wanting to eat (of course). I reminded Frank that it was past the allotted time and hopped in the shower to get ready. Afterward Frank handed him off to me, went and filled the car with gas, and I attempted to sooth him. At 3:30am he stopped fussing- 15 minutes before we headed out! I packed him away in his car-seat, peeled Jackson out of bed and buckled him into his car-seat and crossed my fingers for a smooth ride.
We got to Medical City at 6:30am, right on time, without a single tear shed! Both boys slept the entire way. Well, Jax woke up when I was buckling him in because it as a little chilly – and he was chatty for the first 20-30 minutes. At one point he said ‘Look, is the moon is a banana?’ (it was a crescent moon – I just love the way his brain works sometimes!).
We got Jameson checked in at the Children’s Hospital and he is still doing great – I think he’s just beyond hungry at this point that it’s made him exhausted. But he was such a trooper, when we got called back to have his vitals checked and get admitted the nurse taking care of him picked him up out of my arms and just starting talking and playing with him – and he loved it! He would smile and grin at her, and then when she would talk to me he would just stare at her. Jameson hasn’t outwardly responded to many people so this really amazed me, especially considering how hungry he was.
At 7:50am someone from the MRI came to get me and Jameson to take us downstairs for the big event. When we got downstairs there was another family waiting, their baby was having an MRI too.
This is the part I thought I was going to be nervous about, but in the days leading up to it I told myself that in the long scheme of things this was going to be an easy hospital visit and to save my worry and nerves for surgery. So, I got to go back with Jameson and put him on the bed, a nurse got a heated blanket for him and I held his hands while they put him to sleep. They used gas so it only took seconds, and then I had to leave and wait. :/
The whole MRI took 45 minutes. I sat in the waiting area and about 15 minutes before Jameson was done a little girl, about 7 or 8, came down with her mom and dad. I have no idea what exactly she was there for. But her parents were so engaged with her, they were playing with her and trying to take all the attention off the fact of where we all were, and I thought maybe they were just all pros and this is where we’ll be when Jameson is that old. I could tell that her speech was slightly impaired so it led me to believe that she had a syndrome of some type – God only knows I now know how many obscure syndromes there are out there. And this is when I started to get choked up.
What got to me was the atmosphere in the Children’s Hospital. I have never actually be in a Children’s Hospital in my life up until now. And I knew this already from hearing stories of how amazing the nurses and caregivers that work at these hospitals are, but seeing it and feeling it in person was pretty amazing to me. You could feel the genuine care and love coming from every person that worked there and all the parents that are there with their kids. They weren’t just there doing their ‘job’. They honestly and truly care about the life and spirit that lies within the child and their ability to reach it despite the illness or disability on the outside was effortless. And I just found myself wishing that this is what the world could be like wherever you went and that everyone could genuinely care about the life and spirit that we all hold inside. So, I had to tell myself to keep it together, this was not the time or place to get mushy and let it go!
The gas works quickly to put them to sleep, and the gas wears off quickly when it’s time to wake up. I could hear Jameson screaming so I knew he was done. After a few minutes of this the mom in the waiting area says, ‘Oh, some baby is not happy.’ – I look at her and say, ‘Yea, that’s mine’. We exchange the motherly look and the nurse comes to get me. Oh boy is he mad! I had to sit in a wheelchair for safety reasons, and we have to be wheeled back upstairs to the where the pediatric post-surgery beds are. He screamed – I have never heard him this mad – he had tears rolling down his face and snot pouring out of his nose. Jameson is a very easy going baby, we don’t ever see him like this! Frank said he could hear him and recognized his cry. He was loud….!
He was only allowed clear liquid at first. He downed 2 oz. of Pedialyte in about 5 minutes. And the crying stopped. 30 minutes after that he was allowed “food”. He pretty much ate constantly the whole day.
At 1:00pm we met with Dr. Fearon to go over his results and have a follow up from the last time we saw him. Jameson’s stats are: 13lb, 24.5 in, and 39 cm head circ. Now, his head circumference has fallen off the charts. Obviously this is concerning, but this is also why we are seeing Dr. Fearon in the first place. The goal is to make it to 12-15 months for our first cranial vault. We know the sutures are fused, so now we just monitor the pressure on his brain. Dr. Fearon said the results from his MRI were great! He said that the only thing noteworthy to mention that was seen on the scan was that Jameson has a small cluster of blood vessels in the cone of his right orbital socket (I can’t remember the medical term he used for it). He said that this is nothing to worry about – it’s just like a benign growth, but they’ll never remove it because of where it’s located, but that it shouldn’t negatively impact his eye in any way. At most, he said it may make the right eye seem to bulge more, but that he saw two perfectly symmetrical eyeballs when he looked at the scan.
The fact that he has been hitting his milestones so far led to believe his MRI would have a good outcome too, but I definitely didn’t want to assume this. There is a soft spot open on the top of Jameson’s forehead and Dr. Fearon said that if pressure does start to build up we would see this area start to bulge, but as of right now that looks great too. He said that the head circumference is going to be somewhat misleading now because of the fused sutures and Jameson’s head is probably growing up instead of out so it’s a little hard to gauge.
When he asked me how Jameson has been doing these past 2 months I told him all the wonderful things he’s been doing and how he’s developing. And I also told him my concerns about his hearing and my belief that it’s holding back his social development. He said that he doesn’t believe Jameson is going to have problems with his hearing. He said that these kids can have a large buildup of fluid and that he will have tubes put in during his surgery and that will help with that. More good news!
The only other comment he made was about Jameson’s weight. He’s only gained a pound in a month…He asked if Jameson was on anything for reflux – now, he did initially tell us that Apert and Pfeiffer syndromes tend to have reflux and he recommends putting them on something. Well, I told his pediatrician this and we got a prescription for Zantac, but I honestly never gave it to him. He’s never had an issue with spitting up and I didn’t want to give it to him if it was unnecessary. So, when he asked me I was honest and told him this. He told me I am Jameson’s best expert and he leaves that up to me, but he explained that just because Jameson doesn’t spit up a lot or vomits doesn’t mean he’s not uncomfortable. He said that if it’s uncomfortable for Jameson he’s not going to have a desire to eat…Now, this rung a bell with me, because some days it is a struggle to get him to eat. So, I guess I will start giving him the Zantac and see if I notice a difference.
The next day wad Jameson’s 4 month Well Check. I already new his stats from the day before and the only one I really wanted to talk to his pediatrician about was his weight. Jameson has more than doubled his birth weight, so by no means is it a major concern, but his growth rate with weight did plateau a little. His ped said she’s not worried, we’ll see where he’s at in 2 months , but her main goal is for him to be a strong and healthy as possible come surgery time, but he looks good right now. But he had a huge leap with his height. He has grown 6 inches! I guess that’s why I feel like he’s bigger than 13 lbs…!
So now we wait. We’ll head back to Dallas in another 4 months – unless something happens in the meantime.