Dean and I (aka Papa and Nana) spent the day with Pyper at the hospital so that Nicole and Brandon could catch their breath and get outside the confines of the hospital. Gavin and Chloe needed time with their momma and we were happy to hang out with Pyper for the day. A very special friend of Nicole’s was here for the weekend with her family and they were able to spend the entire day outdoors enjoying a warm fall day together and some wonderful pizza for dinner. I want to say a huge “THANK YOU’ to Christina and Martin Harvey for taking such good care of Gavin and Chloe. They surely didn’t expect to come to North Carolina and get to do child care duties. Your friendship is a blessing. Gavin and Chloe loved having Caleb and Addie at the house too!
So we get to the hospital and Pyper is still intubated from her procedure the day before, she has an IV, her NG tube and of course her oxygen tubes. I stood at her bedside for a few minutes, then turned and walked out. I found a room where I had a good cry, then I put on my “I am okay face” and went back in the room. Goodness it was hard to see her with so many tubes everywhere. All you want to do is pick her up and hold her tight!!
Her intubation tube came out while we were there and eventually the drugs in her system began to wear off. This was not a happy event. She was miserable, unconsolable at times, and she cried so hard. The nurse said she had some pretty heavy drugs and it was like going through withdraw. I knew she needed her mommy. I tried, but mommy I am not!
The ENT used a scope to check around to see what might be causing the aspiration issue. Pyper had to be intubated during the procedure. The ENT scope procedure did not result in them seeing a hole anywhere to identify where she is aspirating, which was good and bad. Good there was no hole, bad because they still do not know where the aspiration is happening. They did find a deep groove near her vocal cords, and used some gel to fill in the gap. This will last 6-8 months or longer, and may help with her breathing and aspiration, time will tell. While in there, the ENT clipped some vocal folds, as they might have been causing an obstruction.
With all of the above issues, combined with her respiratory issue and continued need for oxygen, the ENT requested some genetic testing, as some of these are direct symptoms of 22Q11.2 deletion (DiGeorge Syndrome), which is a very rare, incurable disorder caused by the deletion of a small piece of chromosome 22 at location q11.2. They have requested the genetic department to fast track the tests and schedule an appointment once they receive the results. We are still waiting.
The ENT also ordered an MRI to check and see if there were any neurological issues with her swallowing problems.
Pyper gets her NG feeding tube so that she can be fed without any further aspiration.
Pyper goes to her primary care doctor and as soon as she is told of the aspirating, the doctor sent Nicole, Brandon and Pyper straight to Mission Children’s Hospital. There was a high risk of pneumonia because of the aspirating, so she was admitted to the hospital.
Pyper goes to her ENT doctor and a swallow study is done today. Unfortunately the results show she has severe aspirating. They are sent home being told that the ENT doctor would schedule a time in the next week to do an exploratory scope procedure to see what was causing the aspirating.
Pyper is discharged and goes home. She came home on oxygen, and they have been trying to wean her off it ever since, being somewhat successful when she is awake, but her level drops quite a bit when she sleeps. They never identified the exact cause, but had assumed at the time that she had gotten some sort of virus that would eventually clear up.
Since they had not been able to wean her off the oxygen for several weeks, we had sensed there was more going on, and pushed to get her tested for other things, as we were concerned she was not developing correctly, not enough weight gain (about 10 lbs at 3-1/2 months old), not seeming to respond as much as maybe she should be, her eyes were not tracking together and she did not seem to focus on much and looked off to the distance often, and lastly, she seemed to clench her fists quite a bit, almost constantly.
Because of this, some outpatient tests were done and we found out she has the following:
She has a sub-mucus cleft palette (They will wait to repair if needed due to nasal talking later in life.)
She has a hole in her heart, but they will wait to see if it grows together or creates issues that require a repair later.
Pyper has breathing issues and is taken to our local hospital before being transported by ambulance to Mission Children’s Hospital in Asheville. Her oxygen levels were dropping into the 80’s, she was all stuffed up and struggling to breath.
They tested her for RSV, but this came back negative. They proceeded to do a viral screening panel that tested for about 16 other viruses, all came back negative. She was essentially diagnosed with bronchiolitis. While there, they introduced her to supplemental oxygen to keep her levels up. Also while there, they did identify that her Thyroid was not functioning properly, and started her on a daily hormone medication.
Pyper was born today! She is about 4 weeks premature, and she weighed 5 lbs 12 oz. They had to take her early because our daughter Nicole had developed preeclampsia.
Pyper’s hospital stay was a bit longer than normal due to being premature with a low birth weight. She dropped to 5lbs. 4oz and went home at 5lbs. 7oz. Nicole and Brandon brought their little one home with all the excitement that comes with a new baby. There was no indication that anything was wrong or would be wrong in the future.