Just before the holiday began, my computer wouldn't allow me to access this website without a password from administration after being able to be on it for days before… quite odd I must say. So we waited till everyone was back today to get access again. I'll briefly go over these last few days!
Sunday the 23rd, ended up being another day of calm. Ross and I were grateful as Camilla ended up being up all night teething, so we were running on very little sleep. We switched between being upstairs with Ella and downstairs with Camilla and tried to make life as enjoyable as we could being the circumstances.
Monday morning the 24th rolled around after another exhausting night up with Camilla, she caught some sort of stomach bug, that was enjoyable…(Not sure you can sense the sarcasm). I ended up going up into Ellas room around 5 am, and the nurse informed me that they were indeed able to get Ella into the surgery room early that morning. So around 8 am, the surgeons called up and said they were ready for her. All sorts of emotions came. Emotions of excitement because we would be taking a step forward by getting her GJtube placed. Nerves at the thought of my child going under the knife when the first less invasive surgery failed brought fear. Worry, knowing things may not go as planned again... all swirled about. The surgeon came up to ask if he could repair her umbilical hernia - post-op from having her intestines put back in and we agreed to that so she wouldn't have to be put under again later on. Ross was with camilla downstairs while I kissed our sweet girl off to surgery. It's in those moments where there is nothing more you can do but pray. Ive been so grateful for the gift of prayer throughout this whole journey. The surgery took almost two hours and she spent another hour in a half in the recovery room. They wanted to watch her closely as they didn't intubate her for the procedure. We were so incredibly grateful she didn't have to be intubated again. God heard our prayers. When they called me to let me know she was back upstairs in her room, I fled up there in a hurry. She was already coming out of sedation, and seemed uncomfortable, more from the side effects of sedation over pain as they were already managing that part. It was such a relief to see those bright blue eyes open and to hear her little cry, our baby was ok. The rest of the day she was able to sleep and get the much needed rest to recover.
Tuesday, Christmas Day - Finally we were able to get somewhat of a decent night of sleep, but at 5:30 am I woke up and called up to the nurse caring for Ella and she says "Oh hi, I was just about to call you". Instant worry filled my heart. She goes on to say, "Ella's red blood cell count is at a 7, and the doctor is considering a blood transfusion, but we wanted to check in with you first". I went up to the room and they had already tried to start an IV to do the transfusion, but the line blew and being Ellas history I asked them not to continue trying to start a new IV and asked if we could shut her IV nutrition off and do the transfusion through there as her second line was clogged and was unable to be used. At this time, the Doctors were switching shifts and a new doctor came on and felt comfortable to just closely watch Ella and see if she shows any signs of distress for us to move forward with the transfusion. Ross and Camilla left around 1 o clock, and immediately my heart yearned for them. The day kept going and it felt like any other day, nonetheless Ella didn't end up receiving the transfusion and had a lovely evening.
Today, Wednesday - the day after Christmas: Ella had a wonderful night! I am sleeping in the room with her during the nights now, the beeping and nurse popping in can be startling but I've learned to block those noises out. The doctor came in and went over the plan for the rest of the day, while the nurse tried to unclog her second central line port. There are so many cords and so many little gadgets used on the daily over here, the process to unclog a clogged IV line is interesting and to do so they set up quite the contraption. They finally got it loose after trying all day. The reasoning behind fixing it is that in the case we need to do the blood transfusion, we have an extra line to use without having to pause her IV nutrition. Tomorrow morning we will check her red blood cell count again and decide whether or not a blood transfusion is necessary. The endocrinologist came in to talk to us about Ellas Vitamin D deficiency and helped me better understand the cycle of unstable calcium, electrolytes, and acid levels. She said getting Ellas vitamin D levels back to par can take months, and she will need to be on calcium and vitamin d supplements long term. They have allowed her to take Pedialyte via bottle for comfort and Ella has been thoroughly enjoying that. We will receive her biopsy results sometime this week, so for now its a waiting game. After Ross leaves, it gets especially lonely here and moments come where all I wish for is to be all together as a family again. Gods timing is not always our timing, we are definitely learning that here…
A little snippet of our Christmas here: On Christmas Eve we opened presents from our parents and donated gifts for families here during the holidays as well. Camilla doesn't quite understand everything, but it was so fun watching her as she opened her gifts. A family came Christmas Day and made dinner, the generosity and care these volunteers have is truly inspiring. FaceTiming family has been one of the best things too, especially during the holidays. I was able to listen to church services via FaceTime as well which was such a blessing too. Christmas was definitely a different experience this year but its one we will never forget.
We hope each and everyone of you have felt the spirit of Christmas in your heart. Merry (Late) Christmas from our family to yours, we are grateful for you!
Love, the Haatajas!