This was another busy week. We had spent a wonderful weekend together. Rowan has taken to playing doctor.
It felt so good to all sit around the table together. Rowan and Daphne were so happy to be together.
Sunday we did go back to the hospital to get her IV flushed, but it wasn’t working anymore so it was removed. That made bath time simple that night, but it did mean she would need something more long term.
Monday morning we packed our bags and went back to the hospital. We dressed Rowan and Daphne up for Halloween since there was trick or treating at the Stollery that morning. Rowan was a fairy and Daphne was a monkey!
Since Daphne needed more albumin soon and she lost her last IV site we had to plan for a PICC line. This is like an IV, only it is advanced much farther (toward the heart). A PICC line lasts much longer than a regular IV site. They could not get Daphne in that day but planned on it for Tuesday. Daphne would need to go under general anaesthesia for this so Tuesday she would have to be NPO for a while again. Since the NPO might go long and she really needed more albumin in the meantime we did need to give her another regular IV. This was a nightmare! A doctor (who is apparently very good at IVs with babies) took 2 tries. We gave Daphne a break and later on a PICU nurse tried twice unsuccessfully as well and then we decided to use a scalp vein. There is something so disturbing about seeing a baby with an IV in their head, but I do wish we would have done it sooner and saved Daphne from having 5 pokes!
Tuesday Daphne had her albumin and lasix and her NPO lasted 10 hours. She handled it pretty well. We did a lot of walking around with her in the stroller to help make her content. I am very happy with the PICC line. It will save her from so many pokes and the site doesn’t leak at all like her last broviac did.
Here is a picture of Daphne getting her vitals checked. You can see a bit of the PICC line on her right arm. In this picture you can see Daphne being fascinated by her glowing red toe. It was at about this age that Rowan really seemed to discover her toes.
We were hoping the rest of the week would be boring now that the PICC line was out of the way. Unfortunately, Wednesday Daphne would barely nurse and was not happy at all. Her blood work showed that her ammonia was high and her hemoglobin was low. She received some blood to help her hemoglobin.
The next day Daphne was put on almost continual NG tube feed, 20 hours a day. This really improved her mood and her energy level. She started nursing again! She should be getting lots of calories now! And as you can see she still manages to look gorgeous even while in hospital!
We are also not letting the continual feed feel like a prison sentence, we are still getting out of the room as much as possible. We spend a lot of time walking around the hospital. Daphne and I also love the Healing Gardens. Every hospital needs a beautiful space like this.
Friday we were given the ok to go home on pass again. The only thing we need to do is go back every 12 hours to get her PICC line flushed. That is a bit of a bummer, but it’s worth it. Daphne is so content and happy at home and Rowan is absolutely thrilled that we are all together again!