Last week, as you know, we had to admit her to Seattle Children's a couple of times to get her Broviac IV line replaced. While staying in the hospital with her, I walked past the NICU several times, down the same halls I paced while going through the grief of losing Summer's twin, Brooke, and then waiting to hear the fate of our tiny Summer just 5 days after Brooke's passing. My husband, my sister, and I all sat in the waiting area while Summer was in surgery for the first time...he outcome was so uncertain. Summer's intestines had been seriously infected by NEC and they expected to remove portions of it. After some time, the surgeon came out to talk to us. It was about 2 AM and we had been so stressed with worry...the news he brought did not lift our spirits in the least. He explained that he was still in the middle of the surgery, but wanted to let us know what was happening. They were to remove most of Summer's intestines and were leaving a good portion that was infected in for 48 hours to see if it could recover and be saved. He then told us she was going to end up with Short Bowel syndrome, more than likely be on an IV for the rest of her life, which could end up only being 3-4 years if we were lucky, due to liver failure as a result of the TPN/IV use constantly running straight through the liver and resulting in liver failure, then death. He then asked us what we wanted him to do. Save her! So, he returned to the surgery, and we got to see her shortly afterward.
The next 48 hours were very stressful. The 2nd surgery revealed that the pieces of intestine they hoped would recover, didn't, and had to be removed. Summer was left with only 10% of her bowel....pretty grim outcome we had hoped to avoid. The only thing we could do from then on was to "wait and see". No one really knew how she would do....
The last 14 months have shown us how much of a miracle out little girl really is. Not only is she thriving, but she is beating the odds and proving the doctors wrong.
We had our monthly clinic visit a few days ago and the news was great! Summer has been weaned down to only 12 hours on her IV running TPN, which accounts for about 28% of her needed caloric intake for each day. She has grown very well, her labs are continuing to improve, and she is progressing forward in all respects. We were told to increase her NG tube feeds to 65 ML's per hour (which still runs 24/7) and then the TPN volume would be reduced as well. I'm guessing we are down to about 25% of calories now from TPN. I was happy about this and asked them if they had an idea when we could just get rid of the IV all together. She just had the line replaced after having it for almost a year with no infection, and I would love to just get rid of this new one before we ruin that track record!
Her doc said if all goes well, like it has, and there are no significant changes in her weight, or condition, we could possibly have the IV removed when she reached 85-90 ML's per hour. That is only 20-25 ML's per hour more! We have currently been increasing the feeds by 5 ML's about every month, so that means we could reach the goal in 4-6 months, I'm guessing :) This is so incredible...we can actually see a possible end in sight! When the IV is removed, Summer's care will be cut down drastically....our lives could be that much more normal!
With this news, I was reminded of the surgeon's predictions....HA!!, way to go Summer, you prove them wrong! :)
I have also been thinking a lot about all the many talented people who have played such a major role in keeping my daughter going. The very first doc to save her life, and the main reason she was even given a chance to survive, is Dr. Ramen Chmait at UCLA/Hollywood Presbyterian. At 17 weeks pregnant, we flew to LA for emergency laser surgery to treat Twin to twin transfusion, that Summer and her twin sister, Brooke were experiencing. Summer and Brooke got here together....they carried each other through to birth, and they were given this fighting chance because of this amazing surgery performed by an incredibly humble and compassionate doctor and nurse. I have joined a group on Facebook for Dr. Chmait and just discovered a video link to a news story that featured him and had clips from a laser surgery performed on identical twin girls. I loved watching him in action and remembered a lot about my own experience when I watched it. It is really interesting and quite the tear jerker (for me at least )...definitely worth watching. Here's a link
Summer's one of the girls...Morgan, Summer, and Sadie
I think I might see some curls coming in :)