We had our 1 month appt last Friday. It went well. She is growing tall (90th percentile!) and gaining weight. Here are her stats from beginning to 1 month:
Time.......... Height.............. Weight
Birth .......... 20.5 in............. 8 lb 13 oz
2 days........ --------........... 7 lb 11 oz
4 days........ --------............8 lb 0 oz
6 days........ 20.75 in........... 8 lb 5 oz
2 weeks...... --------...........9 lb 4 oz
3 weeks...... --------...........10lb 0 oz
1 month...... 23 in...............10lb 8 oz
Her umbilical hernia is healing and is almost gone. The doctor thought about 1 more week and it would be healed. She used the chemical sticks on it again to solder the raw part. It's now been almost a week- and it's not healed yet, but should be in a day or two. It's much better.
At this appointment we were hoping to get an update on the Apnea monitor results. The data had been taken and downloaded that Thursday, and sent to our pediatrician (Dr R) and neonatologist. Unfortunately, it was not enough time to go through all of the data. So we were not given any answers. Dr R said that she talked to the neonatologist Dr. O -who was covering for Dr M (the neonatologist who specializes in Apnea and infants, whose wife had recently died unexpectedly) -and said that Dr O would try to have some answers for us by Tuesday at the latest. I expressed our concerns about the monitor constantly going off, and how it was really mentally exhausting and unsettling. She told us to try to hang on for a few more days. She also told us that we can take the monitor off Maddyn for a few hours in the daytime. Since we are watching her, if she would have any apnea episodes, we'd see them. But, she always wanted the monitor on in the evenings and nights. That has helped a ton just getting that relief for a few hours.
So Tuesday came and we heard from the doctor late in the day. Dr R said that Dr O looked over the Apnea results and thought they were borderline. So he wanted to wait for Dr M to get back into the office and give the final diagnosis- since Dr M is the specialist. So Dr R told us that we needed to keep the Apnea Monitor on Maddyn for 2/3 of the day. In addition to keeping Maddyn on the monitor, Dr R and Dr O wanted Maddyn to also have two smaller procedures done: an Upper GI performed and based on those results a follow-up 24 hour PH Probe. I have had both of these done and they are not pleasant..and the thought of having to watch Maddyn go through them saddens me. Poor thing. But I know that having all of these tests done will help her get better, so that is what I'm focusing on. Dr R told us that they thought Dr M would be in the office by the end of the week and we'd have the Apnea results by Friday. She said they'd call and meet with us as soon as they had them.
On Friday we heard from Dr R's nurse. She said that Dr M had concerns with the results and wanted more information. So they took another download of the monitor data and since there was so much it was going to be mailed to Dr M's office. That meant we wouldn't have any answers until Wed or even Thursday of next week. In the meantime, all of the nurses and docs have continued to tell us that we are fine giving Maddyn a few hours off the monitor each morning/afternoon. The monitor continues to alarm and go off but Dave and I are getting much more used to it. We have had two instances in which we nearly had to administer CPR- but both times we were able to get her breathing again. It's scary and we are doing our best to remain calm.
The nurse also took the time to explain how all of this was related. I was having a hard time understanding how the wheezing, snorting (she has some major cloggage going on in her nostrils), choking, vomiting, gas, etc was all related and why these particular procedures needed to be done. They looked like two different issues: breathing and then digestion. But the nurse explained that they first needed to find out if it was strictly acid reflux or both the acid reflux and Apnea. She went into detail about how they were all related, so Dave and I both feel much better about why all of these tests and procedures are being done. Worst case could mean surgery for our little one and the better case would mean adjusting her medicines or keeping her on the Apnea monitor.
So Tuesday morning we go in for her first procedure, and we should have those results by Wed and the Apnea results from Dr M by Wed or early Thurs as well. We'll have another appt with the doctors on Thurs or Friday to discuss and then find out when we have to go to the hospital for the 24 hour PH Probe. Maddyn's Baptism is next Saturday so hopefully we will have enough answers by then so that she's feeling better and more comfortable.
On a positive note, she's really starting to develop more!! She has a large interest in mobiles, toys, and the play mat now. Her attention and focus is increasing greatly. Her strength is still amazing. She has full control of her head and neck and loves Tummy Time. In fact, she's already scooting. It's so cute!
I've added more pictures to the Shutterfly Album, so be sure to take a look! Lots of cute ones! And here is her birth announcement for those that didn't see it!
I will try to post again on Wednesday or Thursday with any update I have. Thank you all for your emails and messages of support. We are so grateful- it's definitely been tough- and having such great family and friends makes it easier. So thank you!
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