Ivy’s Health Journey – Part 3

Remember when I said I’d be so good about keeping the blog updated… yahhhh…

So jumping back to November of 2018…

By some miracle, we were able to keep Ivy healthy for six weeks during cold and flu season while we waiting for surgery. We were blessed by so many helpful family and friends that took care of her in our home during that time so that we could keep her away from the germs at daycare. It was a fairly uneventful first five weeks. Ivy managed to pull out her NJ tube only once which required Sam to take her back in for replacement.

The week before surgery, Ivy began to have episodes that looked a lot like seizures. Children with Down syndrome are at higher risk for a type of Epilepsy called Infantile Spasms, so I was immediately concerned. We had a 30 minute EEG done that did not show any abnormalities. I left the neurologist feeling a little more at ease, but still confused about what I had been seeing.

Sure enough, a few days later Ivy had more episodes. I was able to capture one on video which was helpful. She would have a cluster of times where she would jerk, throw her arms out, eyes open wide, and then scream immediately after. She would do that 15-20 times in a handful of minutes. Something was not quite right. After a third episode on a Saturday morning (December 1st) I packed a bag and took Ivy to the children’s hospital emergency room. I was not going to leave until they took me seriously and monitored her for a longer time than 30 minutes.

After some pushing back and forth with the neurology team, they agreed to admit us for the few days leading up to Ivy’s surgery which was on the 5th. She would be monitored by a continuous EEG for those days to see if we could capture any of her strange activity. We got all situated in our new room and Ivy was hooked up to the many wires for her EEG.

When diagnosing Infantile Spasms, they are looking at three things. Having clusters of seizure activity, a loss of skills such as rolling over, and a chaotic brain pattern called hypsarrythmia on the EEG. After three days of monitoring, Ivy had (of course) still not had a cluster of the activity we’d been seeing at home. Her brain waves appeared normal, and she had not lost any skills. The neurologist came and talked to us about a potential diagnosis of Sandifer Syndrome. This is basically a rare problem where severe reflux manifests as seizure like behavior. Our minds were put at ease by multiple days of steady, normal brain activity, so we felt good about that diagnosis.

The night before surgery, nurses came in to start Ivy’s IV. They put lidocaine patches in various places on her body to numb possible access points. After looking for awhile they were not able to find any good veins. Not wanting to poke her unnecessarily, they sent for the NICU team to come and give it a try. They were able to access a vein in her foot after not too much poking, and with some comfort nursing and snuggles, Ivy fell asleep.

The next morning bright and early, we walked with the transport team as they wheeled her crib down to the surgical floor. Both of Sam’s parents and my mom were with us. We met with the pediatric surgeon first who would be doing both the diaphragmatic hernia repair and the GJ tube placement. He explained that he would start with the hernia repair and would hopefully be able to do the whole thing laparoscopically. Next the ENT came in to explain that he would be clipping Ivy’s lip tie and then checking her ears for fluid. If fluid was present, he would put in tubes. Finally, the anesthesiologist came in to let us know her plans for sedation. It was all very surreal as I sat there and held my tiny five month old baby. This was not where I expected I would be a year ago! I tearfully snuggled her and kissed her cheeks before laying her in her crib to be wheeled away. The nurse who would be with her told me she would sing to her as she was falling asleep under sedation.

After about 30 minutes, we were called into a consult room where the ENT told us how his portion of the surgery had gone. He said putting her under had gone very smoothly, as had the lip tie clip. There was no fluid in her ears so he did not place tubes, but did clean out a large amount of ear wax from her tiny canals. We went back out to wait. The next portion of the surgery would take a few hours.

After what felt like forever, we were called back into the consult room to meet with the pediatric surgeon. He told us that everything had gone perfectly. He went in laparoscopically and visualized the hernia. He said it was about an inch in diameter. He pulled the portion of her intestine that had climbed up into her chest cavity out and then had to cut away a portion of the fascia in order to close the entire hernia. He used permanent but stretchy stitches to close the hole so that it would grow with her and remain closed her whole life. Next he placed the GJ tube. After the tube placement he injected dye into both the G tube and the J tube to ensure everything was in the correct place. He said that as soon as he put the dye into her stomach, it began refluxing up into her esophagus, proving that she did have very significant reflux. He then closed all the incisions, finishing the surgery.

We were told that she would be brought to the PACU which is the post-anesthesia care unit. We would be brought back to see her after she was awake. After about twenty minutes, we were able to go in to her room. She was very unhappy as is common for young children coming out of anesthesia. She had four places on her abdomen with stitches and looked very puffy. It was heartbreaking to see her like that. I had spent so much time worrying about the surgery itself, I hadn’t even thought about the recovery.

Once they were sure she was stable, she was wheeled back up to our regular hospital room. By this time she was going back and forth between sleeping and then waking up and screaming. I held her hands and kept my face right by hers which seemed to help. The next 24 hours were some of the hardest of my life. She spent a lot of the day screaming. We really had to stay on top of her pain medication. My mom stayed with me which was so helpful. Sam brought Zoe and Eli to visit which brought some joy to our little hospital room. I did what I could to help her stay comfortable. Those moments felt like they lasted forever. I really thought a lot about parents who have to do this with their children for a lot more intense surgeries or way more often than I had to.

The next day, while still uncomfortable, Ivy had turned a corner. We had weaned her off of Opioids and she was only taking Tylenol. We had gotten her back to her goal feeds through her J tube. One week later, we were finally ready to head home.

Luckily there wasn’t too much different between having an NJ tube and a GJ tube because the pump stayed the same. The best part about the change was that I got her sweet cheeks back to kiss! Three days post surgery, Ivy spiked a high fever. We ended up back in the hospital to rule out any infection or surgery complication. After a lot of tests, they decided she just had a virus and sent us home. She also struggled with vomiting bile for about two weeks post surgery. She would wretch and gag and then throw up yellow or green liquid. We didn’t really know what the cause was but they did have us come in to double check that the tube was in the right place. We ended up learning several months later what had happened, but I’ll save that for later.

Backing up a few months before surgery, I had begun to notice that Ivy had a pretty significant flat spot on her head. Her pediatrician gave us some tips for trying to improve it at home like positioning her differently while awake and asleep. At her 4 month appointment, we decided together that Ivy should be referred to an orthotist to see if the problem was severe enough to warrant a helmet. The week before we were admitting into the hospital, we went to Mary Free Bed where we met with an orthotist. After scanning her head he diagnosed her with both plagiocephaly (flat spot on the side of the head) and brachycephaly (flat spot on the back of the head) and confirmed that she would need a helmet.

The week after surgery we went back in to have the final fitting appointment for the helmet and came home with it. To get an infant used to wearing the helmet, they have a specific schedule of wear over 5 days. After those 5 days Ivy was wearing the helmet 23 hours a day. It really didn’t seem to bother her at all and we were even able to put it back on her while she was asleep!