Our Little Princess Update

Disclaimer: Ethan wrote this post :)

Yesterday Hannah went through her second surgery, the Hemi-Fontan procedure. This was originally scheduled to happen the Friday before Thanksgiving, but was moved up a month after she went in for her heart cauterization. They didn’t find anything wrong with her heart other than her heart had started to outgrow her shunt (not enough blood was being diverted to her lungs to get re-oxygenated).

They had us arrive the day before, Thursday, to go through all of the pre-operation checks. As was previously mentioned this was a long day full of waiting, answer the same set of questions 18 different times, and more waiting. We were thankful that Jack was kidnapped by my parents and taken to the Indianapolis Children Museum (the World’s largest children’s museum).  Then later down to Alabama for the week.

Thursday night we stayed at Ronald McDonald’s House. This house is such a huge blessing as it is right across the street from the hospital, costs next to nothings, has dinner every night; and is a nice, comfortable, and clean place to stay.

Hannah’s surgery was originally scheduled for 7:45 AM which would have meant that we would have to have been at the hospital at 5:30 in the morning. Yuck. Thankfully our surgeon, Doctor Brown would be helping out on another case first thing in the morning which pushed our arrival time at the hospital to 7:30 AM and her surgery to 9 AM. We arrived, got checked in and started the waiting game. We talked to a number of different people who asked the same questions over and over again. They must either think we keep lying to them and if they keep asking us the same questions over and over again we will eventually crack and tell them the truth….or they are just really inefficient and disseminating information throughout the organization so everyone that should know, knows what they need to know. Personally I enjoy being badgered for hours on end (sorry this blog is supposed to be about cute baby Hannah not a tirade of Ethan’s ranting).

Hannah scheduled surgery time was supposed to be at 9 AM but was move d to 9:30 because the first surgery of the morning started late which our surgeon was participating in. At 9:30 they came by and took Hannah back. Before surgery Hannah was very happy and took a nice little nap which helped keep mom and dad’s nerves at bay. Before her first surgery Hannah screamed all the way back which did not help mom and dad’s mood any. The family nurse who provides hourly updates to the families told us that she was having a fun time before surgery playing peek-a-boo with the anesthesiologist.

Waiting in the family waiting room always brings the gravity of Hannah’s surgery into perspective. We arrived at 9:30 AM to a full waiting area (20-30 families). By the time we left there was only one other family and they had arrived well after we did. As the day progressed Hannah’s surgery went as planned. They finally came and told us around 4 o’clock that it was our turn to go talk with her surgeon.  We spoke with Dr. Brown, a man a few words. He said that all went as planned and said that things looked good. He did say that her structures looked small which makes sense as she is only 5 months old and they typically do surgery when they are 6-9 months old.

We then had the awesome privilege of waiting in the PICU (pediatric intensive care unit) waiting room for a long long time. They told us that we would be able to go back to see Hannah an hour after we speaking with Dr. Brown. This is the time when they get Hannah all settled into her new room.  The hour came and went and we were still waiting. An hour and a half passed and we started to get worried. Right as Kelli was ready to storm the PICU doors a nurse came out and told us that Hannah had started waking up after surgery and they had decided to extubated her (take her off the ventilator).  They wanted us to wait a bit longer while they settled her in again and made sure she wouldn’t need to go back on the ventilator.  Around 8 o’ clock (another hour and a half later) they FINALLY came to get us to see Hannah. It took them so long because after they had extubated her she was still in a lot of pain and they were busy trying to figure out the right balance of pain meds to give her. It was nerve racking to wait for 3 hours not knowing what the holdup was. Your mind really starts to mess with you after the first hour or so.  You begin to think the worst has happened and they are busy trying to keep Hannah alive.  Thankfully this was not the case.  After being away from our little princess for almost 11 hours we were finally able to go back and see Hannah. She was resting but you could tell that she still wasn’t very comfortable. While we were there they gave her another dose of medicated which seemed to help a lot.

Kelli and I were also both about to crash; we hadn’t had anything to eat since lunch because we expected that we would have been able to see Hannah around 6 o’clock. We decided we needed to leave for the night and go sleep at the Ronald McDonald house.  Kelli cried because she felt like she needed to be at the hospital with Hannah, which just validated in my mind that I needed to take her to Ron Dons to sleep.  The nurse stays in Hannah’s room (Hannah is her only patient) and would be checking Hannah’s vitals every hour so there’s not much we can do to help tonight.  We agreed that we will all be much better use tomorrow if we get at least one full night of sleep.   

This morning we arrived at the hospital early in the morning to find Hannah looking better, but still very restless. They are still working to get her pain meds dialed in. They are surprised at how strong she is. They nurse had to tie her arms down so she would stop yanking on all of her lines.  Kelli made the suggestion that we swaddle her instead (Hannah wont sleep at home unless she is swaddled).  This is working somewhat, she still gets out of her swaddle but it’s better than having her tied down.  In the short time we have been here she has already successfully pulled her nasal cannulas out twice. Shortly thereafter they gave her some more sedation medication.

The doctors stopped by this morning when they were doing their rounds. They said she is doing well and we would start feeding her clear liquids this morning. If she tolerated those feeds they would start feeding her breast milk again. They are going to be starting her on a continuous drip of IV Ibuprofen today to hopefully keep her comfortable.  Once she starts tolerating her milk again we can start her on some different, oral medications.  It looks like we will have a pretty uneventful day, our main goal is to keep our little angel happy and content.