After my last post, I promised an update of the more positive, happy things going on in Andrea's life, so here it is.
For the last few weeks, Andrea has been getting her 4 month vaccines. Her doctor was amenable to giving her one immunization a week, instead of all four at once. We felt it would be less stressful for her immune system. She got her last one this week, and now she won't have to go back to the doctor again for a month. At her most recent appointment, her weight was up to 10 pounds, 14 ounces!
Prior to Andrea's last pulmonology appointment, we had blood work done again, in order for the doctors to check her electrolytes and blood counts. For the first time EVER, Andrea's hemoglobin went up on its own. It's still below normal, but it is moving in the right direction. In the past, she'd always needed to be transfused in order for her counts to improve.
Today was the best day so far. Andrea has become increasingly frustrated with the oxygen cannula. She constantly tears the Tegaderm off her face, attempting to get the tubes out of her nose. We have to keep socks on her hands in the car and when she's sleeping, just to make it harder for her to get a grip on the things. Since she's constantly ripping the Tegaderm off, her cheeks are covered with tape rash. We try to move the Tegaderm to different places on her face, to give each area a chance to recover. Well, today, Andrea did such damage to her cheek that there was no clear space to retape the cannula. Mom was here babysitting so we could go out with the older kids, and she agreed to hold the cannula in place to give Andrea's face a break. While we were getting Andrea set up for this, we turned off the oxygen. As Mom and I were talking, we started to wonder how long it would be before Andrea started to desat. Much to our surprise, she made it 6 hours with no oxygen support before her numbers started to dip. The lowest Mom allowed her to go was in the
mid-80's and when she couldn't pull herself up from that level in a few minutes, we opted to reconnect her. This is the longest period she's ever had with no oxygen support! We are over the moon with the good news!
One of the things we frequently tell people about Andrea is that her entire recovery has been on her own terms. There were times when the doctors or nurses tried to move her forward, and Andrea wasn't ready. Every time we let her dictate the terms, she moved at her own pace and never looks back. We see this as the next baby step forward toward getting rid of the oxygen completely. We plan to try to give Andrea these little breaks every day to rest her face and help her progress.
We see the pulmonologist at the beginning of September. We are excited to share this progress with him, and see what the next phase will be.
This is the first picture we have of Andrea without the cannula in place. Many months ago, while still in NICU, we got a picture of her without the CPAP, but she only lasted a few minutes, and she was obviously struggling. Here, she looks happy and at ease.