Typically in these updates I like to focus primarily on Makenna; her milestones, likes, dislikes, and who she is beyond CDH. However CDH isn't something you take care of at birth and then move past. It is something she will likely have to deal with off and on for the rest of her life.
This was made clear at the hospital before we brought her home. At that time we were told that Makenna had an abnormal brain MRI from ECMO and could have significant delays or never reach her milestones. They couldn't tell us with any level of certainty if she would ever learn to roll, sit, crawl, walk, talk, or read. We were told we just had to wait and see. The wait has been difficult, especially when 4 months came and went and she still couldn't roll over.
We kept waiting and eventually 5 months came and went... then 6 months and 7 months as well. Even now at 8 months she still hasn't rolled. Not once. We knew this was from her discomfort with tummy time and the fact her head is bigger and heavier than it should be from hydrocephalus, but developmentally everything pretty much seems to henge on being able to push up on her hands and roll over..and she still can't do either. Needless to say were thankful when surgery was scheduled for May 21st, we knew that stabilizing the hydrocephalus would help. Although as the days drew closer to surgery we received what felt like the worst news ever - it needed to be rescheduled...again... and for a month away! This was devastating news because we thought it would mean another month of watching her gross motor skills plateau and her development to become more delayed.
However -- on May 15th our sweet miracle, heavy head and all, began sitting up unassisted! Sure she is wobbly and needs us to be on guard at all times to catch her when she falls, but my strong girl is figuring it out and is so close to mastering her first real milestone! It might sound silly, but seeing her adorable little body sitting there on her own gives us so much hope. I seriously can't stop staring at her in awe of how strong and determined she is. She never lets anything keep her down!
Before Surgery:
On May 24th they called to tell us that her surgery was moved up to June 2nd, but we needed to be in Gainesville on May 27th for pre-op and CT scans. So just like we did 8 months earlier, we packed up and headed to Gainesville (thankfully only for 10 days this time!). We began our trip by meeting with Dr. Pincus. I was immediately impressed by him and he was so sweet with Makenna. He called her a 'wonderfully precocious little doll,' which I think sums her up quite well. He also kept saying she was 'absolutely fabulous' over and over again, he couldn't get over how social, alert, and sweet she is. He went over the procedure with us and Rex and I both left feeling very confident in his abilities to help Makenna.He explained that the surgeries she will receive are called an "endoscopic third ventriculostomy" and an "arachnoid cyst fenestration." The ETV involves going into her brain and creating openings in her ventricles so that the fluid can flow. Then they poke holes in her cyst (which they described as "quite large") in order to get rid of the obstruction. He explained that he felt this had an 80% chance of working and if it didn't she would need to come back in 6 weeks for a shunt.
After the visit we began the 'vacation' part of our trip while we waited for surgery on June 2nd. We had a lovely time visiting her great grandparents and our wonderful friends from the NICU! She also got to go swimming for the first time and absolutely loved it! She is definitely a little fish and took to the pool immediately, even though it was a bit cold! This month she has started blowing raspberries a lot. She is also getting much stronger and more determined to get what she wants. She can stand up if we hold her hands, will roll onto her side to play with toys, and if she sees something she wants while in our lap, she will shift her weight to roll over in hopes of reaching it. Another fun thing she has started doing this month is reaching out for me when she wants me to hold her (which is all the time) and raising up her arms to make it easier to pick her up. Little things like this are a definite reminder that she isn't going to stay little forever. I feel as though CDH robbed us of Makenna's newborn stage, so I have definitely been making sure to treasure as many fun moments with 7+ month old as possible! :)
Surgery:
On June 2nd I woke up at 3:30am to feed her for the last timebefore surgery and then headed to the hospital at 5:30 (we were all
too nervous to go back to sleep!). When we got there we changed her into her gown and waited in the pre-op room for an hour. At 8am it was time for surgery. It was the scariest and saddest feeling ever to hand her over to them, knowing her little life was completely in their hands. This definitely wasn't her first surgery (it was her 6th), but it was the first time we had to drive her to the hospital and hand her over---every other time she was already there...for some reason this just felt so much worse. It was made even worse when she started crying as soon as I handed her off to anesthesia. She is always with me so I know she must have been
very confused and scared. We went down stairs to begin the long wait, it was only two hours, but they seemed to drag on and on. Thankfully Joy came to visit for a few minutes, which helped to briefly calm my nerves. Once we got the call that her surgery was finished, we went straight up to the 10th floor to see her. I saw her lying there and wanted to immediately scoop her up, but I had to wait until she was more alert. After about an hour I finally got to pick her up. Unfortunately she became sick from the anesthesia and started throwing up. After two hours of letting her rest and some zofram it was finally time to pick her up. Once I picked her up she wouldn't let me put her down! We snuggled and nursed in the pediatric ICU (so they could monitor her o2) and her amazing nurse even had them replace her crib with an adult bed so I could snuggle her all night! Much to our surprise, the next day they said she was doing great and instead of going to the regular pediatric floor, we got to go hom! At that time she was clingy towards me; however, thankfully she wasn't in too much pain. We had planned to stay in Gainesville for one extra night, although she was looking so puny we decided to stay for 2. By 48 hours post surgery she was already showing signs that she felt better and that the surgery might have worked. She was letting other people hold her and the tongue protrusion she's had for a few months was almost completely gone. Best of all she began "talking" non-stop again like she used too! I hadn't noticed how much less she talked until I started hearing her sweet voice again. We left Gainesville with hope that when we return in a few weeks they will say it was a success! Just 4 days after surgery was feeling better and (more or less) back to her old self!
Height: 26.5 inches
Weight: 16lbs 1oz Eyes: Still grey, sometimes they look brown and sometimes green.
Hair: Brown and getting longer
Clothes: She is wearing mostly 6-9 month clothes.
Diapers: Finally in cloth full-time (minus vacations)
Food: She is still a huge fan of nursing, but her favorite solid food is watermelon!
Sleep: Waking up more times than I can count a night....
Favorites: Makenna really loves her boon bath toys, her green flower, and interacting with people!
