PiElla had her second head scan on February 17. Eight days after her surgery. Her first scan was on February 3. Russ took both scans for her, and the second set of results was spectacular. A PDF of the results along with a picture of her overall headshape before and after is located here: STARscanner Summary Report.
Doctors make heads hurt. Father went to the doctor Friday. He was happy. He played with me. Then he went to the back room.
Mother took me to the bathroom. Then we came back. She was worried. She waited for Father with me. I ate. I slept. We waited. I ate. I slept. We waited. And waited. It was a long wait. I woke up. The nice nurse finally told me I could see Father. Mother took me back. I looked at him. He did not look good. I needed to hold him. The nurse was afraid Father would drop me. He held me nice. He could not talk. Continue reading
Jay’s wisdom teeth removal was fully successful with no complications (even if the 45-60 min surgery took 90 minutes and the dentist reported on a scale of one to ten with one being the easiest removal possible and ten being the hardest that Jay’s was a nine). We’ve been told to expect the swelling to get worse over the next couple days, and he can expect to have a very sore jaw considering how hard it was to extract the teeth. Continue reading
Pending Posts: Still working on them. Hopefully more updates soon. Including the reports from last week’s scan of PiElla’s head shape and next Tuesday’s helmet fittings!
Today we had our monthly brunch. It was delayed by a week, but it was good. Life is definitely getting back to normal. It is amazing how fast PiElla has healed up. And even more amazing all the new skills she has learned in the last week. Things she was just barely hinting at doing before the surgery, and other things that are totally unexpected. For instance, she has started playing music on the iPad using the Orphion app; she is buzzing her lips playfully; she is suddenly ticklish! and gets into big giggle loops as a result; she is flirting with everyone; she is sitting up on her own more and more often; and we have started setting her in a high chair and giving her little tidbits from our meals to poke at – she had salmon and braised greens for dinner tonight! and then a good drink of mother’s milk to top things off.
PiElla had a beautiful cesarean birth. I had a lot of grieving to do for the birth “I didn’t get.” I wish that my belly did not have to be sliced open to birth my baby and I wish that my baby’s head did not have to be sliced open to give her brain the room it needs to grow, but those needs were our reality and in that reality I am so grateful that we connected with medical professionals who could support both our physical and emotional needs, making both experiences as positive as they could possibly be. PiElla’s birth was not the birth I had envisioned at the macro level, but at the micro level in many ways it was. It was supported gently and respectfully by the birth attendants. I was supported in relaxing through the experience. Jay and my father were present supporting me. My mother was present in many ways, including in the music that was playing during the birth. PiElla was skin to skin with me within minutes of birth. Continue reading
Surgery happens, recovery progresses, the crisis draws to a close, and then all the duties and responsibilities of normal life that were dropped must be picked up again. Work to be done, bills to be paid, home projects to chip away at, and the logistics of my physical return to work to be sorted out.
If it were not for the many doctors and medical professionals who dedicated their lives to helping mothers and babies, PiElla and I would not be here and in good health. If it were not for the amazing surgeons and craniofacial specialists at Children’s, PiElla would not have received the care she needed to allow her head to grow correctly, letting her continue to be the smart, sweet, adorable girl that she is. If it were not for the many friends and family who have brought us meals, we would not be as well nourished and fueled for giving PiElla the care she needs. Continue reading
PiElla had a follow up with two of the surgeon’s from her surgery team. The assessment was all positive. She’s doing great!
We’ve been here before. Homecoming is so exciting. In the hospital everyone comments on the remarkable progress and then you are discharged. But coming home doesn’t mean being well. It dawns on you that there are no nursing staff at home. It’s all up to you and the family and friends who help (I started this post yesterday morning and this is how far I got all day – it was that full on).
We had some struggles with pain management yesterday. Continue reading
A big thanks to Materialise for letting me use their Mimics software. And a massive thank you to Shapeways for all of their support, assistance, and gifts in making this memento possible. It is an amazing educational tool for us, for friends, for our daughter, and a useful object for the doctors.
And, best of all, PiElla approves! Plus, is happy that the surgery has gone so well.
We just woke up from our first night at home. So grateful to be here. I was struck by the wisdom of sending us home. Once it was established that PiElla was stable and that her body systems were working again, her needs were no longer medical but just support for her own body’s natural healing processes. We are much better set up to care for her regular needs at home than in the hospital (including taking care of her parents needs enough so that they are able to take care of her).
We were so grateful to be in our own bed, but it wasn’t a restful night. Continue reading