First Visit to Primary Children's Hospital

Yesterday Scott and I got to go up to Primary Children's to meet with the Cleft Palate Clinic. We were provided with a lot of information and good resources.

We were first given a list of wonderful support groups out in the community including a group that is local here in Utah with patients who use Primary Children's. I have joined this group and will be able to keep in touch with others out there going through the same issues at this time or who have been through these experiences which will be so wonderful.

Schedules for surgery times were given to us with some detailed explanations of what would occur during each surgery and the amount of time we will be in the hospital with Bailey for each. Whether her situation is just cleft lip, or includes palate, it looks like our first surgery will be within 6 weeks to 3 months after delivery. She will be meeting with her first Surgeon about 10 days after delivery and dates and what surgeries will be needed for sure will be discussed then. If palate is involved, it is looking like she will be dealing with this and having surgeries until about 14 years old. If it is just lip, it is approximately 2 surgeries that will be involved. So now, we just wait and see what all will come when she is born.

Scott and I were taught how to feed our little Bailey and explained to how feedings will work. Primary's provided us with one type of feeding system, and asks that we be prepared with another which they gave us ordering information for to have as back up if the first feeding system does not work. Bailey will have to be held almost upright to feed with these feeding systems to help prevent any formula going up past where the palate would normally be and into her nose to help prevent any choking or other issues. She will have to be burped a lot more frequently than a baby without a Cleft. We feel comfortable with these feeding systems and hope that we as well as Bailey will get the hang of this different style of feeding quickly. Family and anybody who will be watching Bailey will have to learn as well, and it will take time, effort, and practice until we all perfect her feedings. She will be required to complete a feeding within a half hour each time or we will have to see Speech Therapy/Feeding support for better training and help. This is to prevent her from burning too many calories with not having much ability to suck on nipples compared to how many calories she is actually taking in, as well as help her with not having FTT (Failure to Thrive). These feeding systems also allow us to be doing some of the work for her to help assist in her inability to suck and form a seal around a bottle nipple. This will be very different for us, but will be such a wonderful learning experience and we should be able to get the hang of it quickly. After each surgery, she will be relearning and struggle with feedings for just a short time, but will be able to catch on quick again each time.

Cleft palate babies are likely to have problems with their middle ear with fluid build up, so we were taught all about tubes and the possibilities of tubes needing to be put in to help with that just to keep us prepared for anything. They also are not likely to pass their hearing screening which is performed soon after delivery before you go home from the hospital. Meaning that she will need follow up with Audiologist to make sure that her hearing is not affected by the cleft. The majority of the time, reasons for them not passing the screening will be due to the fluid build up in the middle ear and the baby will not have a true issue with hearing.

I met with my OB for my regular bi-weekly appointment yesterday as well. We have been referred by him to MFM (Maternal Fetal Medicine) and a geneticist down at UVRMC (Utah Valley Regional Medical Center). They will be doing more Ultrasounds and testing on sweet Bailey to try to give us a better guess as to what is involved in her cleft as far as a more confident guess as to if palate may be involved or not. I meet with them next week on Tuesday Oct. 2 and should have more updates at that point.

We will start ordering and getting these feeding systems so that as soon as little Bailey decides to come, we are ready for her and will be able to help her feed. Other than that, the rest of preparing ourselves is more mental than anything else. We have the confidence we need that everything is going to work out in the end and that it will all go over well and smooth. It was a blessing and a comfort for us to have the opportunity to be able to meet with Primary Children's yesterday. We walked out feeling more comfortable with our situation as well as confident in knowing what to do and where to go from here. I did have a mental breakdown on the drive home from our OB appointment in the afternoon, but those will happen off and on as they have for the past week since finding out about this diagnosis. I am blessed to have an amazing husband to help support me mentally and emotionally through this, as well as a wonderful family who is here for me and gives me so much love and support as well. I find it best for me to handle and take in all the information when I actually talk about it, rather than keeping it in. This blog will be a great resource for me to get out my emotion and share our story with others to help keep me in an emotionally strong state to make it through everything.

Thanks for all the support and opportunities to talk about little Bailey and share my feelings.