There we were, back in the same room we had just left, scared and defeated. Seeing Teddy connected to oxygen and monitors again was heartbreaking and I just kept thinking over and over “what did I do wrong?” We failed. We couldn’t keep our baby safe at home. Were these logical thoughts, no, but at the time that is all I could think about.
The doctors and nurses got to work to figure out why he was requiring oxygen again. They took x-rays and blood and urine samples. We sat in the room hoping we had not done something wrong to cause his set back and worried this meant we would be spending the next 6 months to a year in this same room waiting for him to get big enough to have surgery. With oxygen, Teddy was comfortable, so that made us relax a little, but the wait for answers was horrible. Our favorite nurse came in and tried to comfort us and tell us that these things happen. It helped but didn’t ease the feeling of failure.
After running a host of tests, they found that Teddy had a urinary tract infection (UTI), which they felt was causing his set back. For those you aren’t aware, UTIs can cause a whole host of issues for the very young (especially the fragile) and the elderly. We were thankful it didn’t seem to be anything more than a UTI and tried to figure out what we did to cause it, so we could prevent it from happening again. Thankfully, two days after being admitted, Teddy was able to be taken back off the oxygen. It was a huge relief and we hoped it meant there wasn’t anything more serious going on (I am sure you won’t be surprised, but there was indeed something more serious going on, but it would take us another month and a trip to Boston to find this out).
They decided they wanted to keep him a few more weeks to make sure the infection fully cleared up and he stayed stable, before we started talking about going home again. The medicine was also causing an upset stomach and for his secretions to be thicker, which was causing issues with his suction device. So while we waited for everything to settle back down we went back to the old routine, but those two days home changed something inside us. I think had we not taken him home, we could have endured the old routine for the 6 months to a year they were predicting, but having experienced a life outside of the NICU, even for a few short days, showed us that there was something better out there for us and we needed to start coming up with a better plan of attack on getting Teddy repaired and in a better more stable place. We started really diving into research on all our options to repair EA and Boston Children’s Hospital kept coming up over and over again. They did a procedure there called the Foker Procedure that actually stimulated growth of the esophagus, so that log gap EA children could be repaired sooner and have a higher success rate.
So we began talking to our local surgeon about the Foker procedure, which he said he had experience with, and he told us that Teddy 100% would not qualify in his opinion, but he fully supported getting second opinions and admitted he was not a specialist in EA. So we decided to start the process of getting a second opinion from Boston, while we waited in the hospital to see if we would get to try to take Teddy home unrepaired again.
All while this was happening, Teddy was blossoming and growing. We were getting more and more social smiles. He was learning to put his pacifier in his mouth by himself. He was even pulling himself up from an incline position, while holding my fingers! While probably not that surprising for a regular 2 month old, for a 32 week preemie barely 5 lbs, that had endured everything he had, it was amazing. While he still could not eat by mouth (due to the unrepaired EA, he was still getting fortified breast milk through the g-tube and was still slowly, but steadily growing. He was still this amazing little miracle that seemed to take every set back in stride and come out even stronger on the other side.
While we got the ball rolling with a second opinion from Boston, Teddy became healthy enough that the doctors felt we could try taking him home again. We were nervous, but we didn’t know how long it would take to get everything figured out with Boston or if our insurance would even cover us going, so we felt like we wanted to give it another try. Our new amazing friend we met had taken her daughter (by herself no less) on a commercial flight to Boston to be repaired, while carrying a suction machine and other medical equipment (a total super woman!). So, we thought, if nothing else, we might be able to do the same, so we would take him home and figure out the rest while we were there.
So about two weeks after we brought Teddy home the first time, we packed everything back up (including every MORE bags of supplies the NICU snuck out to us), but Teddy in his second “going home” outfit and headed back home for what we hoped would be the final time until his big reconnection surgery. We were terrified, but ready to take on the challenge, so we could have our baby home again.
*** Fun fact, I think I still have loads of supplies our local NICU nurses gave us on our attempts to take Teddy home unrepaired, even after going through our storage multiple times and donating tons. NICU nurses are truly some of the absolute best nurses and people there are. They definitely wanted to make sure we were prepared for anything, and we are so grateful for them and everything they did for us while we were there!!!*****
