Life sure has gotten pretty interesting around here lately.
Let me start from the beginning. As I mentioned in my last post, Holden was born with some “special features” – a cleft palate and a recessed chin. When I had my 20 week ultrasound back in January, they mentioned that he appeared to have a slightly recessed chin. The doctor didn’t mention any issues that might be associated with this, aside from it being a cosmetic concern. We went in for a second ultrasound a month later and they ruled out the recessed chin, saying it was likely just him moving his lips, or possibly yawning. Looking back, I’m glad they ruled it out then. There wouldn’t have really been anything we could’ve done at that point to better prepare ourselves, and I would’ve had major anxiety up until his delivery, which likely would’ve caused more problems. When Holden came out and I got to hold him, I was in Heaven. He was so perfect. (When Aurora was born, she pooped right away, so the doctors took her away and it was probably a good hour before I got to hold her. So getting to hold Holden right away was amazing.) It wasn’t until a nurse was checking his vitals, etc. a while later that anyone realized he had a cleft palate. (When you look at the top of his mouth, there’s nothing there and you can see, literally, up into his nose.) I think it was discovering he had a cleft palate that even got me thinking about his ultrasound. I had honestly forgot about it up until then. I remember glancing at his chin at some point, recalling that it was supposed to have been an issue, but it really didn’t look any different to me. That’s how unnoticeable it was. I think eventually I heard one of the nurses mention to another nurse that his chin appeared to be recessed, so that’s the first time I realized that maybe it was, in fact, an issue. It was also mentioned that his tongue was set farther back and the doctor that saw him while he was in the hospital mentioned something called Pierre Robin Sequence. She didn’t diagnose him, but said that some of the issues he had could be a sign of that. We left the hospital last Saturday with one Pigeon nipple to feed him with and a scheduled appointment with his pediatrician for this past Monday.
Let me start from the beginning. As I mentioned in my last post, Holden was born with some “special features” – a cleft palate and a recessed chin. When I had my 20 week ultrasound back in January, they mentioned that he appeared to have a slightly recessed chin. The doctor didn’t mention any issues that might be associated with this, aside from it being a cosmetic concern. We went in for a second ultrasound a month later and they ruled out the recessed chin, saying it was likely just him moving his lips, or possibly yawning. Looking back, I’m glad they ruled it out then. There wouldn’t have really been anything we could’ve done at that point to better prepare ourselves, and I would’ve had major anxiety up until his delivery, which likely would’ve caused more problems. When Holden came out and I got to hold him, I was in Heaven. He was so perfect. (When Aurora was born, she pooped right away, so the doctors took her away and it was probably a good hour before I got to hold her. So getting to hold Holden right away was amazing.) It wasn’t until a nurse was checking his vitals, etc. a while later that anyone realized he had a cleft palate. (When you look at the top of his mouth, there’s nothing there and you can see, literally, up into his nose.) I think it was discovering he had a cleft palate that even got me thinking about his ultrasound. I had honestly forgot about it up until then. I remember glancing at his chin at some point, recalling that it was supposed to have been an issue, but it really didn’t look any different to me. That’s how unnoticeable it was. I think eventually I heard one of the nurses mention to another nurse that his chin appeared to be recessed, so that’s the first time I realized that maybe it was, in fact, an issue. It was also mentioned that his tongue was set farther back and the doctor that saw him while he was in the hospital mentioned something called Pierre Robin Sequence. She didn’t diagnose him, but said that some of the issues he had could be a sign of that. We left the hospital last Saturday with one Pigeon nipple to feed him with and a scheduled appointment with his pediatrician for this past Monday.
Wednesday and Thursday of this past week were pretty rough sleep-wise for him (and us). At this point, we’d still been instructed to lay him on his back when he slept. This absolutely terrified us because, pretty much the second we’d lay him down, he sounded as if he were choking on his tongue. I thought that could’ve very well been the case, since his tongue was set farther back. Turns out choking on his tongue was not the issue, but rather that it was blocking his airway so he couldn’t breathe when he was on his back. Thankfully, Jose's and my parental instincts kicked in and we both slept with Holden on our chests. I know, I know. Huge no-no. However, at that point, we’d heard that laying them on their tummies caused SIDS, laying him on his back terrified us, but whenever he slept on us he was at peace. And that was all that mattered to us.
Jose called Holden’s pediatrician on Thursday and she happened to be out of the office. We just saw her this past Monday for his regular follow-up appointment and knew she was going to be referring us to Riley Children’s Hospital, but we didn’t have an appointment time yet. My mother-in-law made us an appointment with an ENT (Ear, Nose, and Throat) doctor that she used to work with for yesterday (Friday), so we could hopefully get some answers.
This was Holden's first non-routine doctor appointment.
This was Holden's first non-routine doctor appointment.
We took a trip down to Noblesville to meet with the ENT doctor to hopefully get some answers on what's going on with our little man. We were fortunate enough that Holden slept the whole way there and the whole way back. I'm so glad we made this trip because two things came out of it. One, we got affirmation from the doctor that Holden is, in fact, an exception to the "No Tummy Sleeping" rule. And two, the doctor we met with used to work at Riley, so he gave us a lot of information on Holden's condition and he was also able to tell us what he thought the doctors at Riley would likely do to correct things.
He told us he was almost positive that Holden does have Pierre Robin (pronounced Roban) Sequence (PRS), which is what the first doctor at the hospital mentioned. Basically, there are a lot of things that can be associated with PRS but, as far as we know, he just has the recessed tongue and chin and a cleft palate. He said what likely happened was, when Holden was in utero, his tongue stuck straight up rather than straight out, so the roof of his mouth closed around his tongue, causing his cleft palate. Also, since his tongue was up and not out, it wasn't pushing his chin forward while he was forming, as it should have. This caused his chin to be recessed and his tongue to stay put instead of also growing outward. This is why he's not able to sleep on his back - his tongue falls back and blocks his airway. This made perfect sense to us because, even when we'd lay him on his back to change his diaper or anything while he was awake, he'd start to cry. Poor baby couldn't breathe. The doctor then explained that what would likely be done is a mandible advancement surgery to push Holden's jaw forward, which would also bring his tongue forward, opening up his airway. To do this, they would literally cut his jaw on both sides and insert a device that, with a daily turn of a screw, will slowly move his jaw forward. (The same effect an expander has on your teeth when you have to get braces.) He said the screws would be temporary, but that he'd look like a little baby Frankenstein in the meantime, with little pins coming out of his head. After the mandible advancement surgery, he said they'll likely do another surgery to close his palate. This will involve them using excess tissue from inside his mouth and stitching it together to form a palate. After these two procedures, he will probably need some speech therapy but then he'll be "normal."
While it's definitely promising knowing that Holden's issues can all be corrected, it's also super overwhelming to think that such a little body will have to endure so much. Of course I left the office crying... again.
On top of that, once we got home, a sleep apnea monitor was delivered to our house. Holden's pediatrician had put in an order for it and, as the guy was going over the instructions on how to use it and having me sign the paperwork, I broke down... again. Everything is just so overwhelming at this point. Also, I think it's safe to say I definitely still have some postpartum emotions going on.
As if that weren't enough, when we got home, Aurora had a little cake-shaped card from school that had her birth date written on it, sitting on the kitchen table. My parents were over and asked what it was for. Jose and I immediately exchanged "Oh !@#$!" glances from across the room. A few weeks back, her teacher sent a note home, saying they would be celebrating all the summer birthdays during the month of May. Parents were to pick a date that worked for them to send in a treat for their child's birthday. Of course, when I sent in the paper, I was thinking that a week after Holden's due date would be just fine... so I picked May 26th. Guess who forgot to send in a birthday treat on May 26th? We both looked at Aurora and, before either of us could even say anything, she started saying, "It's fine. It's fine. Don't even worry about it." and then she burst into tears. I. Felt. Awful. My whole plan to never let things with the new baby negatively impact the first child had completely derailed. When Jose emailed her teacher later to see if we'd be able to bring treats in the day after Memorial Day, her teacher responded, saying that was fine and that "Aurora was a trooper and told me that it was busy at your house with the new baby and all. We sang to her and she was happy. Aurora is a sweet little girl!" Oh. My. Heart.
So today was rough. And I'm sure we have some rough days ahead. But I'm so very grateful that we live in a time with so much knowledge and medical technology available and that we even have the option of fixing these things. Thank you so much for all of the continued prayers and words of love, encouragement, and support. While not always responded to, they are noticed and so much appreciated.
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