News about Ryan

My heart is broken. I am worried, scared, and quite frankly, an emotional mess. We got some bad news about Ryan this week. Let me start at the beginning.

Ryan had cranial ultrasounds while he was in the NICU. The ultrasounds found cranial bleeding in his brain that never fully healed while we were there. The doctors couldn't tell us much about it other than to wait and see what happens. It was, however, a grade 1 bleed, which is the most minor on the scale. We took the info and just sat on it. There was nothing that we or the doctors could do for him. The seed of worry was planted though.

Before he was discharged from the NICU, the doctor decided to do an MRI to get a clearer picture of Ryan's head. The MRI showed immaturity and that his brain was smoother than it should be, without as many grooves as a normal brain would have. To be fair, they admitted there wasn't a whole lot of research on the brain of a newborn baby born at 27 weeks. To that end, they did MRIs on Stokes and William from a comparison standpoint and confirmed that Ryan's brain was immature based on seeing it with his brothers'. The doctors told us Ryan may have a case of lissencephaly but it was not a definite or clear cut diagnosis. They had a relatively positive outlook for us but wanted us to stay in touch with the Pediatric Neurology group. I talked a little bit about this situation in this post. We thought it a positive sign that Ryan excelled in the NICU and was the first of the three to get discharged and come home with us.

In December, we had our first appointment with Neurology and Ryan had an EEG. The results came back that his brain waves showed immaturity and they wanted us to wait a few months and come back for a follow up. Good deal. Although it was troubling, I wasn't going to worry too much about it. I felt like we just needed to keep praying and do whatever developmental work we could, such as working with our Early Interventionist and do any therapy needed.

Over the last few weeks, I started to notice some strange eye movements from Ryan. His eyes would roll up for just a second and then he would exhale/sigh and his eyes would come back to normal. This would happen repetitively for a few minutes, but not back to back, there would be several seconds in between, and then it would be over. It started out as a very subtle thing but I felt like it looked a little weird. I took a few videos because I wasn't sure how I would explain it to the pediatrician or neurologist. I knew that seizures were a symptom of lissencephaly and that seed had been planted last fall and it was in the back of my mind. I kept telling Thomas that I was worried about it, but I think I was a little nervous to call about it because I was scared of getting bad news. I googled and YouTube'd "infant seizures" and didn't see anything that remotely resembled what Ryan was doing.

A few weeks after I first noticed it we had an appointment with the Development Clinic (last Wednesday, 4/23) and eventually we were close enough to that appointment that I decided to just wait and see what they said. While we were there, I showed our favorite nurse the videos that I had on my phone and asked her opinion to see if we should be worried. She said it could be a seizure but that it also may be related to the horrible reflux we'd been seeing with Ryan. She got one of the doctors to come in and it just so happened that Ryan had one of these episodes there while were at the appointment. Ryan's head was actually dropping, chin to chest, at each exhale during this episode. The doctor couldn't say for sure what it was but did suspect that it was a seizure. We randomly had a Neurology follow up appointment on the following Tuesday (4/29) that was made last December after our last appointment. The nurse told me to log each episode and plan to show the videos to the neurologist when we went to that appointment and also said they would probably want to get another EEG. She called the Neurology office and got us an appointment for an EEG for Ryan on Friday, 4/25. That way when we went to our appointment the following Tuesday, they would have the results from the EEG that they could share with us. While logging the episodes, I realized he was actually doing it more often than I thought.

Last Friday, I took Ryan for the EEG and he slept during the test, just like he was supposed to. It went just fine. I had a sinking feeling though that Ryan was indeed seizing. Over the weekend, I grew more and more worried about it, but wasn't freaking out. I naively thought that they may be seizures but that we could get some medicine to make them stop and that would pretty much be it.

The plan for the appointment was that Thomas was going to come home from work and watch Stokes and William while I took Ryan to the Neurologist. As it got closer and closer, I was feeling uneasy and told Thomas that I wanted him to be there with me. I had a gut instinct or possibly a mother's intuition that we would not get good news. Thomas agreed to come with me for support and we took all 3 babies to the appointment.

So on Tuesday, 4/29, the triplets, Thomas and I went to our Neurologist, Dr. Hunnicutt. She came in and we gave her the overview of what was going on and showed her the videos. She and the resident were asking me questions about his development and while answering I realized Ryan had regressed somewhat - somehow this hadn't occurred to me before. He had stopped rolling over, he hadn't been smiling and laughing anymore and I was noticing that he was putting his hands in fists more often. She looked at the EEG and the look on her face told me what I was dreading. She said that although they didn't capture any of the episodes on the actual EEG, it looked very different from his last EEG in December. She said he was having Infantile Seizures (or IS for short). The phrase Infantile Seizures sounds very innocent but we quickly learned how very serious it is. The Neurologist even told us that she cringes when she sees them and it's a very hard diagnosis to have to break to the parents. Kids with IS usually have very severe delays, disabilities and handicaps. As is the theme with brain stuff, we won't know how he will be until time passes. I NEED to know. Now. No one has a crystal ball to tell me what Ryan's future is going to be like but I am constantly thinking about it. We asked about worse case scenario and it basically is that he will have extreme, hard to control seizures (which can sometimes lead to death) and be very severely physically handicapped with major learning disabilities. Best case scenario would be learning disabilities with minor physical limitations or delays. We officially have a child with epilepsy; he is a "special needs" child. We can just pray, pray, pray that his delays and symptoms are on the mild side.

My heart sank....and then shattered on the floor and broke in a million pieces. Suffice it to say that I needed several tissues during this conversation. Thomas, bless his heart, was so strong and steady. He must have been doing that for me. I know he had to have the same sinking, helpless and terrified feelings that I was experiencing.

I asked about whether this could be due to his prematurity and surprisingly enough, they are totally unrelated. This stemmed from his brain development as an early fetus and would have been an issue even if he went full term. It is also extremely rare. What are the chances that our triplet (rare) has this (rare) horrible diagnosis? I can't help but question what we have done to deserve this and wonder why we can't catch a break.

The Neurologist said she wanted to start us on ACTH (adrenocorticotropin hormone), a steroid to stop the spasms, or seizures, immediately and she wanted us to check into the hospital. She told us that the ACTH meds would be for a 4-6 week basis with twice daily home injections. She wanted to get Ryan hooked up to an EEG there at the hospital when we got there so they could capture his brain waves during the spasms and also to get another MRI. They called the hospital and got us set up. She told us to go home and pack an overnight bag and head over to the hospital. It all was so terrifying and I was crying to Thomas about how proud I was that we hadn't had any hospitalizations since the NICU and now we were going back. You know when you go to the pediatrician (or any doctor appointment) and they ask you if the baby(ies) have had any hospitalizations or surgeries since the last appointment? I LOVED being able to proudly say, "Nope!"

Ryan and I got admitted to the hospital on Tuesday afternoon and got settled in our room. Shortly after we got there, the EEG techs came to put his electrodes on. They put gel on specific points on his head and attach electrodes to the gel. Once all the electrodes are on, they cover it with a gauze wrap. They had a cart with a monitor, camera and paper log in our room. The camera was focused on Ryan's crib bed and the monitor showed his brain activity that the electrodes were picking up. I was instructed to press a specific button on the cart when I noticed he was having a spasm and to log it with a time and description on the paper log. Then they left and it was just us in the room. Ryan was sleeping a lot so I got online. I started reading up on IS and the gravity of the situation started sinking in. I read something that referred to IS as the "catastrophic childhood epilepsy". Can you imagine reading that description about your child?!?!? People kept telling me to stay off the internet, but how can you? Was I just supposed to sit there and bury my head in the sand? Should I take on the "ignorance is bliss" motto? I had a strong desire and urge to learn as much about IS as I could, despite the horribly depressing things I was reading.

Ryan getting set up for his EEG

My sweet, beautiful boy

Throughout the afternoon and evening, I would press the spasm button and record the info anytime I noticed Ryan having an episode. I spent a lot of time crying and worrying. I talked over the phone to the pharmacy that sells the ACTH (it's not sold at a normal pharmacy like a CVS or Walgreens) and got the confirmation that it was processed through our insurance and shipping that night for delivery at our house the next day, Wednesday. Before I went to bed I had a chance to talk to my Aunt Kathy. I gave her a brief synopsis of what was going on and felt better just being able to talk about it to someone other than Thomas or medical staff. I talked to Thomas right before I went to bed and he told me that Kathy called him after she got off the phone with me and told him she was getting up early the next morning to drive from Atlanta to Greenville and that she would get there to watch Stokes and William in time for Thomas to come to the hospital for Ryan's MRI. I was touched. I didn't realize how much I really wanted Thomas there until I felt that relief of knowing that he was coming. The night wasn't great. If you've never slept at a hospital before, you may not realize that you get very little sleep there. It just doesn't feel like home and the fact that nurses have to come in and take vitals every few hours doesn't help. Ryan had a spasm around 4 am and it was hard to go back to sleep afterwards.

The next morning I got up early, before Ryan woke up, to shower and get dressed so I would be ready as soon as they came to get us for the MRI. The EEG techs came and unhooked Ryan from the electrodes on his head. The tech mentioned to me that the doctors confirmed they had enough information for what they needed with the EEG. At some point during the morning, the nurses came and gave Ryan his first dose of ACTH. I watched and tried to learn how to administer it as I learned that I would have to give him injections twice daily at home. Shortly after that, the sedation nurse came by to talk to us about the MRI and luckily Thomas got there right in time before they wheeled Ryan down to the MRI area. Unfortunately, they had to sedate Ryan for the MRI so that he wouldn't move during the procedure. After waiting around for a while, it was finally time. Thomas and I were there with him the whole time and it's disturbing to see your baby being sedated. The medicine, propofol (the same med on which Michael Jackson OD'ed), worked so quickly that he was out within 10 seconds. They put high tech noise canceling headphones on him and gave us foam earplugs and sent him into the big tube. Thomas and I just sat there in the room while the MRI machine gave off lots of series of strange noises. Afterwards they put him back in his bed and we had to wait around there until he came to. It took about 15 minutes after the procedure for him to wake up but it seemed like it took 2 hours. I just wanted him to wake up so I would know he was OK.

Post-MRI, waiting for him to wake up from sedation

The rest of the day was spent holding Ryan and waiting for the doctor to come talk to us. We just wanted to talk to the neurologist, hear the findings of the EEG and MRI and determine next steps. The waiting around was brutal but at least Thomas was there with me. Every time a nurse or anyone would come by we would ask if the doctor was coming to see us soon. Finally around 5:30, Dr. Foster came by. A lot of what she said about the MRI went over my head. She said his brain was still showing immaturity but that it has developed some since the MRI he had in the NICU, which is a good thing. She repeated some of the same information that Dr. Hunnicutt had told us the previous day in regards to development, his odds and what we should expect. She confirmed that the EEG captured his spasms. I asked her if we should keep our appointment for that Friday to start PT (physical therapy) for Ryan, and she said we should absolutely begin PT and be aggressive with our therapies (PT, OT - occupational, and ST - speech, which we'll start at a later date). They would not let us get discharged until we confirmed that we had the ACTH medicine delivered at home and luckily, it arrived and Aunt Kathy was able to sign for it. Dr. Foster told us that the only other thing holding us up from discharge was my comfort level with being able to give Ryan the injections. I told her I could do it. After the doctor answered our questions and left, we got the nurses to come in and help me and I gave him his evening injection. Have you ever given your baby an injection? If not, here's one word to describe it - traumatic. I was sweating, my hands were shaking and I cried. I think I was more upset about it than Ryan was. I guess I'll get used to it. We left around 7 pm that night.

Holding Ryan and waiting for the doctor to come talk to us

When we got home, Aunt Kathy and Carole were there with Stokes and William. They had dinner takeout waiting for us and some comforting embraces and words of sympathy and encouragement.

So we've begun the at home injections of ACTH. It is a steroid and side effects include weight gain, facial swelling, fussiness, not wanting to sleep, acne and a few other things. Unfortunately, it also compromises his immune system so he's going back on lock down. So far he hasn't exhibited any side effects and for that we are extremely grateful. From what I understand, life can be unbearable for 4-6 weeks with an extremely fussy baby that doesn't sleep at all. Ryan is a little fussy at times but is sleeping and napping well. If you want to read more about infantile spasms, ACTH and what the injection process is like, you can check out this handout that we studied while at the hospital. We had our first in-home PT appointment on Friday and I really liked our therapist. We're doing what we're supposed to do and that's all we can do, along with lots of praying.

I am trying to keep my faith and trust in God but can't see how this could be what he wants for us and for Ryan.  I had a similar reaction of being devastated and heartbroken when I found out we were having triplets and spent several weeks in non-acceptance and sadness. I eventually accepted it and moved forward and later I finally came to fully realize what a true blessing it was. I do not, for the life of me, see how this will ever be considered a blessing, but I hope I can get to the acceptance and moving forward stage quickly.

As you can imagine, we've been terribly upset by this news and worried about Ryan. I apologize to any of our loved ones that have reached out and I haven't responded. I appreciate all the texts, calls, emails and blog comments.

Please continue to pray for Ryan, for his doctors, and for us, so that we can be nurturing, helpful and supportive parents to provide him with the best possible outcome. I just still can't believe that my beautiful baby, Ryan Thomas, has epilepsy and will have to deal with this horrible IS diagnosis.