God Given Instincts
- kathrynsubas
- Jun 9, 2025
- 5 min read
Updated: Jun 10, 2025
Grace has had yet another busy week! It always blows my mind how the day ahead looks pretty routine, but then ends up filling up with all kinds of exams, procedure, assessments, etc.
A few routine things that Grace goes through daily is being assessed by the nurses every 3 hours when I do her handle (diaper changes, ostomy bag emptied, temperature checks, etc). As well as her daily taps.
Graces daily taps are done by a Nurse Practitioner (and me as her assistant) who then removes the CSF (Cerebrospinal Fluid) from her Ommaya Reservoir at a rate of 2ml per 1 minute. Grace gets half taps, where they remove fluid equal to half her dosing weight. Her dosing weight is currently 2.6 kilo's, which means she gets 13 cc's removed every day. This number will go up until it reaches the maximum of 20 cc's. This past week I felt that she needed more then half taps, however, as her head appeared quite full, although the fontanelle wasn't bulging, the suture in her forehead was slightly gapping and her head appeared wider (although they told me it was measuring the same). I asked multiple times to different NP's if we could do a bit more then half taps, but they said no as Grace wasn't showing clinical signs of being too full and the Neuro team was comfortable with the amount being taken. Something didn't feel right in my gut though... Unfortunately it was discovered that there was actually a small mistake in regards to her taps this week (a miscommunication) between the Neuro team and the Nurse Practitioners. It turns out that the NP that has Grace this week thought when the Neuro team said half taps they meant half of the maximum (20cc's) not half of her dosing weight. This mistake went by unchecked for about 4 days, so Grace's head did actually get quite full. She has now had 2 taps of the correct amount, since the mistake was discovered, and her head already looks better. I felt like I had been coming across as naggy to the team, but my gut was saying something was off. The saying, "trust your gut" was right this time! I am thankful God has given me momma intuition!
Grace got her schedules eye exam done on Tuesday, and it went really well. While she does still have ROP (Retinopathy of Prematurity) it is not progressing and her eyes appear to be developing in the right direction. She will have another exam in two weeks!
Grace also got a new PICC line done, as the one she has in her leg was over 40 days old. This new one had to be done in IGT under slight sedation as it is a 3.0 size (much larger then her previous). It is, however, large enough to have blood drawn out of, which is nice. Unfortunately though it has to be in her arm, as that's closer to the heart. She doesn't love it as it definitely restricts her, and we don't love it because it's now hard to put clothes on her. A lot of the cute onesies we had don't actually work anymore which is unfortunate. Oh well, all in good time 🙏🏼
At the beginning of this week I made sure to meet Graces new, 2 week rotation, Staff Doctor, and bring up some things I felt she was ready for. Grace's previous doctor, who had just ended her rotation didn't want to rock the boat or push Grace at all before her upcoming surgery, but I felt that this was the wrong call as Grace is strong and smart and 2 weeks is a long time to not make any real changes. Her new doctor agreed so this week Grace got trialed on Low-flow oxygen after being on High-flow for about 2 weeks. She did really well and officially got switched over on Wednesday afternoon. So far she has been doing really great and doesn't appear to be having any major issues with the decrease in oxygen support. This has been so encouraging for me to see, as one thing the doctors listed, when giving us her brain injury prognosis, was that she may never be able to be able to breath on her own, and would require a tracheotomy. While we were prepared (as much as we could be) for whatever challenges the Lord allowed in our daughters life, we are so grateful to learn that the doctors were wrong in this respect and overjoyed to see God working miracles!
Now that she is switched to Low-flow oxygen the air pressure is no longer there the doctor also agreed with me to have her assessed for oral feeding. She had her OT assessment on Thursday for this and took about 5ml from a bottle on her first try feeding! The OT said she did very well, as many babies struggle with learning how to "suck-swallow-breath". So she came back on Friday to teach me how to do it, concerns to look out for, and ways to create a good oral feeding experience for Grace. The risk with this being a learned skill now rather then a natural reflux is that babies can learn to hate it if it doesn't go well. So we have to be careful to follow her cues and not force her to feed, but just give her a chance to explore it. On Friday when I did it with her she drank about 8mls! I tried again on Saturday on my own but she was way to sleepy so only did about 1ml. Yesterday I tried again for her 3pm feed and she did 5ml like a champ and could have maybe done more if I had let her!
Unfortunately her hemoglobin is low again (was 94 on Thursday and now 87 as of yesterday) so this has made her very sleepy, with very little energy. We were pushing her over the weekend a bit by not transfusing, in hopes she would make her own hemoglobin, but she still can't make it fast enough. So she will be getting her 10th blood transfusion today. She is getting her IV line put in as I type this blog out.
Sam and had some time to ourselves this week as well, and made a point of doing more things in the evening which was such a blessing! Monday night we went on a 22 km bike ride. And Thursday night we went to his first baseball game where his team won! We also had family visit, which is routine by now, but such a blessing and a great change of pace for us.
Prayer Requests:
That Grace's transfusion goes well and gives her the energy she needs
That Grace continues to like and improve on her oral feeds!
For her upcoming stoma reattachment surgery on Friday, June 13, 2025.
All the emotions that are sure to come with her approaching due date of June 14.
Comments