We are so blessed to welcome our sweet natured and beautiful girl Gnocchi in our arms at last! The Lord orchestrated the best possible birth at University Hospital. Just after Gnocchi's arrival, she was whisked away to the NICU due to inhaling meconium and we are so grateful that we were in a hospital setting with all the services she needed. The morning after delivery the pediatrician informed us that they had noticed some midline abnormalities in Gnocchi. We want to share with you what the pediatrician shared with us so you can be both informed and join us in prayer for Gnocchi.
Here are the challenges our strong, sweet, resilient Gnocchi is facing:
1. Gnocchi has craniosynostosis. This is a premature closure of the cranial suture in the forehead. It will require surgery to restructure the skull in order for her brain to develop normally.
2. The doctor noted a heart murmur and reported to us that she has a common heart defect (VSD) - a hole in the lower chambers of her heart. This often heals up on it’s own but if it does not, it will also require surgery to repair.
3. Gnocchi also has a stomach hernia which the doctor indicated seems more significant than most and while it could heal it may require surgery to repair.
4. She has a floppy airway and some congestion which has led to challenges with breathing and feeding. This may also require treatment if it does not clear up on it’s own.
5. Gnocchi has club feet which are currently being treated with weekly casts. The most recent news was positive and we are hoping she will only have casts for a couple more weeks before she moves into braces.
The doctors informed us that these "midline abnormalities” are sometimes grouped by a genetic syndrome. This means Gnocchi may have a genetic syndrome, it also means she may not have a genetic syndrome. We have already started genetic testing and are awaiting the results.
This information was a lot to take in less than 12 hours after birthing our precious little one. We have been taking our time this past month putting all the pieces together and staying on top of doctors appointments.
We are grateful to be part of a Christian medical share program for our insurance. This is an alternative type of insurance program. The program has been very supportive so far and we are thankful for their support and willingness to work with us as the medical bills in the first month have already exceeded $30,000. It's possible that we will exceed the help that this program can offer but only time will tell. Currently they are praying with us and open to sharing our medical needs with the other members.
One of the challenges of the medical share program is that we are required to pay a portion up front every time we attend an appointment. So far each appointment has required a $200 out of pocket payment and we have been doing several appointments each week. We hope to have some of this expense reimbursed by our medical share program but it likely won't be until March. This has created quite a financial burden on the family. We are grateful to have had a Go Fund me set up on our behalf to help us address this issue. This has been a process of learning to trust the Lord day by day and we are very grateful for many blessings in the midst of these challenges.
We are so grateful for the amazing team of doctors both at University Hospital and now at Children's as well as our regular pediatrician. We are thankful that we are only 17 min away from a regional hospital that regularly performs all of these surgeries/treatments. Everyone has been very encouraging and uplifting which has been such a God-send as we are at the hospital for multiple visits each week. We are thankful that Gnocchi's feet seem to be responding to the casting so well - they mentioned that her joints are very flexible and she may need less casting than most!
We give thanks for the genetics clinic! While it is extremely tough to get an appointment at the Genetics clinic, they reviewed Gnocchi's case and moved up her appointment from mid April to early December!
We are encouraged that in our last visit to the pediatrician, he mentioned that he was not hearing her heart murmur any longer. That is incredibly encouraging and we see the Cardiologist on Dec. 19th to find out the state of the VSD.
We invite you to pray with us...
That God's healing power would be seen by many and His Glory would be shared through Gnocchi's life!
That God would heal her heart defect.
That we would have wisdom in all the medical decisions.
That her breathing issues and feeding congestion would clear.
That we would not be discouraged as the bills come in and we would look to Jesus for direction.
And that we are able to find a good balance with care for Olive amid all the appointments for Gnocchi.
Thank you friends. We will post here again when we have an update.
If you are interested in helping Paul, Emily, Olive, and Gnocchi, please consider clicking above on the "Ways To Help" link for one of the following:
Prepare and deliver a meal for the family- check out the mealtrain link.
Make a financial donation towards medical expenses- check out the Go Fund Me link.
