My mother and I just returned from our second trip to Philly. It was a mentally exhausting two days, meeting with doctors, midwives, social workers, and digesting the reality of what our lives will be like for the next year or so. We first met with the maternal fetal OB and it looks like things are status quo with the baby. Fluid was seen in her stomach, which is a good sign because it suggests that she is able to swallow. Though she is still extremely small (below the 10th percentile), she did grow from our last visit and is now weighing in at 3lb 2oz. Docs will continue to monitor the fluid levels and her growth, as it will determine whether or not we do an Exit procedure and when she will be delivered. If her growth plateaus then they may deliver her early because she’ll have a better chance of growing outside the womb.
We also met with the craniofacial specialist. Without a normal size jaw, Ella would never have a chance of breathing on her own. They have several ways to correct the jaw, however it completely depends on how much bone they have to work with. They do what is called a jaw distraction: Under anesthesia, the surgeon cuts the jawbone on both sides of the face. He then anchors an appliance to the bone and turning a screw on the distractor gradually increases the distance between them daily. New bone is formed in the gap as the gap widens. Once the desired length is achieved, the turning stops and the device is usually left in until the bone is stabilized. This is usually 6-8 weeks, but it varies depending on the child. If there is enough existing bone, the distraction surgery will take place a 1-2 weeks after birth.
If there is little to no bone to work with, then the surgeon must wait until there is some growth or they have to borrow bone from another part of her body. In that case, she would have to be trached, because intibation is not sustainable over a long period of time.
The lovely people at CHOP gave us a tour of the Special Delivery Unit as well as the NICU. It was definitely a reality check for us. The room where I will deliver has a window through which they will quickly pass Ella once she is born. Waiting on the other side will be an airway team made up of ENTs and other docs, who will first try to intubate her. If the intubation is unsuccessful, they will then try to trach her. The number one priority, of course, is getting this baby oxygen. Unfortunately, we learned that we will not be able to hold her for some time, at least until she is off the ventilator. This is extremely upsetting to us because as parents-to-be you long for those first moments when you can look into your baby’s eyes, cradle her in your arms, and caress her. However, we know it is for her own good and, luckily, we will still be able to look at her at touch her.
Equally upsetting was seeing all these sick, tiny, helpless babies in the NICU and knowing that my baby will soon be one of them. You can’t help but want to pick up each and every one of these children and whisper in their ears that everything is going to be all right. Though I know my baby will be in the hands of expert doctors and compassionate nurses (you have to be to work in a NICU), I still wish I could hold her in my arms and take her home like most other parents can.
And so the decision was made that I am due to move down to Philly on July 20th, when I’ll be 35 weeks. It seems I will be there for quite a while, roughly a month before she is born and likely several months or more after her birth. Before birth, I will be staying at the Ronald McDonald House in Camden, NJ. Once the baby comes I will be moving to the Ronald McDonald House in Philly, which is only six blocks from the hospital. I will have some time on my hands and rather than letting all this worry consume me, I would like to find things to occupy myself. If anyone has any suggestions (a good book, movie, hobby) or would like to come visit I would be absolutely welcome to that.
Finally, let me end by saying thank you for the outpouring of love and support. Thank you for your many phone calls, emails, comments, prayers, and offers to help. If I haven’t responded to you, I apologize. It is still very difficult for me to talk about without breaking down. I thought with each passing day that it would get easier, but with the reality of our future setting in it remains tough. I know this will eventually change and that once this child arrives we will not only accept our circumstance, but truly embrace it. Please know that hearing that so many people care about Erik and I and about this little one, whom you have yet to even meet, brings us great comfort.
Love and God Bless…
P.S. A few people had mentioned they are having problems posting a comment on the blog site. I amended the settings to allow all people to post, regardless if they have a Google account.