1 week old

We know you have all been awaiting an update, thank you for your patients. Life has been a bit busy this past week, it’s hard to believe that Noelle is a week old now. Over the past week Noelle has been monitored closely and had many tests done. This past week they have done tests on her brain, kidneys, eyes and heart, as well as being seen by her genetics doc and numerous neonatologists (NICU pediatric docs). We feel so blessed to have such a well-educated and motivated medical team caring for our little one.

Her brain scan showed a small cyst, which at this time has no known affect on her. We will be following up with a neurologist in the future.

Kidneys although small, they seem to be functioning as needed and they will continue to be followed by her kidney doctor. She does have some elevated levels that show that there might be some sort of dysfunction, but at this point they won't know until they can monitor and run tests as needed

The ophthalmologist has seen Noelle a couple of times now, she has hazy eyes (many newborns have this) along with possible glaucoma and coloboma. They will continue to monitor her and see how things look over time.

Noelle's heart has been monitored closely from the day we began seeing my high risk pregnancy doc. Many kids with this syndrome have heart issues ranging from mild to severe. In utero it was hard to see if there would be any long term issues. Shortly after she was born they did an EKG and it showed a large ASD and a small VSD. This last week they did another EKG and found that the ASD is now small and VSD is still there. If these holes don't close on their own we will be having surgery at some unknown future date to fix this. As for right now she seems to be doing well.

The genetics doctor who works a lot with clef lip and clef pallets talked with us about future surgery that will repair her lip and palette. We do have to wait for her to hit certain milestones with weight before they will do the surgery and unfortunately kids with WHS (wolf-hirschhorn syndrome) struggle to gain weight making the possibility of surgery more delayed than preferred.

Over the past couple of days her primary NICU doc has discussed the possibility of placing a g-tube, this will help her with her feedings. Right now she is currently being fed 30mls every 3 hours via nasal tube. Every 12 hours she is able to take 10 mLs via bottle, but this leaves her very exhausted and she doesn’t find the energy to eat again for another 12 hours. As of this morning Noelle will be having surgery to have a g-tube placed, which will assist us in being able to bring her home, where we will continue to work with her to feed via bottle. She has made a lot of great progress in the last week and we are hopeful that she will continue to make progress.

Please continue to keep her in your prayers. (We know that they are truly helping) She is a tough fighter and so sweet, we just want her to be able to grow and thrive and be healthy!