Dress Up
Today is a big day for Shirley! Nearly three weeks old she will be able to wear her first outfit today! You didn't miss much yesterday but her last IV was taken out of her foot and her HFNC was decreased to 4LPM. Now that her IV is out we can dress her in one of her cute snap-down outfits! Brianna has probably been dreaming of dressing her child ever since she was wearing her own snap-down onesies, so its a huge day for her. Shirley has also been wearing little pink mittens to protect her face from those razor sharpe nails she sports.
Foot Prints
We did some footprints today. Now that her feet are free of those clumsy IV's we jumped on the opportunity to do the frivolous sentimental things! Like most baby feet, Shirley's feet are cute as all get out and to have an ink stamped representation of them is even more cute! I joked before we did the stamping that it may be a more accurate representation to keep the band-aid on her foot. Shirley thought so too, I guess, because if you look closely at the picture you can see a band-aid mark on her right heel! Having spent the whole three weeks of your child's life in an ICU, normal things become extraordinary things. When the plan of the day changes from open heart surgery and ensuring she doesn't have a stroke, to baby clothes and footprints it's a great feeling. We are moving on from truly sad and scary days to happy and fun days, though each day with Shirley has been filled with a real joy and peace no matter her condition. Joy and hope should not be overshadowed by fear and uncertainty. I want to write an entire post about joy, hope, fear, sadness and the like but its a work in progress. That, along with a post about wondering why Shirley has CHD have been brewing since day one.
Medical Jargon
Like I said earlier, Shirley was weaned to 4LPM on the HFNC and had her last IV removed yesterday. Sometimes the critical care docs will backtrack on the IV's though and want one just in case they need it. Let's hope they don't. Shirley is getting a full blood work-up today and had another echo ordered for the beginning of next week. She has been having some issues with premature ventricular contractions as well as premature atrial contractions, PAV's and PAC's respectively. These are both somewhat common for children with CHD and specifically those with large structural defects such as Shirley's. They can also be caused by an imbalance/deficiencies electrolytes. It can be difficult to pinpoint for her though because of some of the medications she is receiving. She is currently on two diuretics that make her pee quite often in order to help her fluid levels stay balanced and reduce the risk of acute pulmonary edema (this is a great link with tons of information). The diuretics would be the likely culprit for a electrolyte imbalance but its not that easy. Her labs come back with differing results, sometimes she might be low on an electrolyte or two sometimes her levels look great, yet the PVC's and PAC's remain. She is receiving breast milk which contains everything she needs as far as nutrition plus it is being fortified to help add calories so she can plump up. The moral of the story is that she is getting plenty of electrolytes with her feeds. There are also genetic things to consider concerning her electrolyte balance but the results are still out on her comprehensive screen.
Respiration Rate
Her HFNC has been weaned rather quickly and is likely the only thing keeping us in the CICU. There have been rumors of possibly shipping her out tomorrow. She is currently on 4LPM of "room air" for support and her RR is fluctuating from from about 50 to 70. Her last few x-rays have shown that her lungs are relatively dry thanks to the diuretics and the HFNC having been set to 8LPM for almost 48 hours a few days back. This is a great sign that she is at low risk for acute pulmonary edema and its likely not affecting her RR. Hopefully her breathing will continue to improve and that she will be able to make the jump to zero support shortly.
Heart Function
Her heart function is still slightly decreased but they're hopeful it will perk up. Labs will come back today with her most recent BNP levels as well as some other markers that may help them determine her cardiac function. I think her next echo is scheduled for Monday, which will be more definitive. That being said, heart function, believe it or not, is not one of the things keeping us in the CICU at this moment. Shirley has a troubled heart and to ever expect it to function like the average heart is out of the question but there is hope that it will function better than it does today.
Thanks
Thank you all for the continued support. I have no doubt that this entire experience has been eased by the tremendous amount of support we have received in every way. I can't imagine what it would be like without it. There are many families here in the CICU that are not as fortunate. Please keep them in your prayers as well. We are just one family here in an ever changing manifest of patients. We are very thankful to have meet a few of the families here and exchange stories. Its been our goal to attempt to brighten the days of any person we meet by being helpful and hopeful in our interactions.
Until next time, here are some pictures from this morning. Don't worry, it's okay if you return multiple times a day to check out how cute she is or to see if she is as cute as you remembered. No one is judging you except you!
-Joseph
