1,000 Appointments
We were home, happy and settling into our new norm for what could be a few days or a few months but either way, we were going to enjoy the time we had. However, day time was always chaotic. We had an abundance of appointments for Gracie: Pediatrician, Occupational therapy, Physical therapy, Speech therapy, GI, and our weekly visit to Herma Heart with our Cardiologist.
Each week it was a new schedule, a new routine while trying to work around naps, pumping, and making sure everyone was fed and happy. Gracie was on 7 meds a day; Sodium chloride which always made her puke, Iron which again made her puke, vitamins AGAIN MADE HER PUKE (are we seeing a pattern here?!), Lasix (diuretic), Aldectazide (diuretic). and aspirin to help with her blood clot from her first surgery.
While she was able to get off of all the very crucial meds her diuretics were basically keeping her out of the hospital. It was allowing her to pee more and keep the fluid that was not being distributed correctly off her lungs. If you recall in my last blog post "If Gracie Can Do This So Can I" her lungs were extremely wet from us trying to stop one of her diuretics and failing miserably. We were not about to make that mistake again, she would be on all her diuretics until further notice.
Paisley was starting to roll over, babble, and become more independent while Gracie was still on a continuous feed hooked up to her feeding tube. I'd like to tell you that this was easy simply for the fact that Gracie was alive! But it was still very hard to process everything that had been taken away from us surrounding having a "normal" baby. I wanted them to be hitting milestones at the same time or around the same time. I wanted Gracie to be rolling over and able to hold her head up just like Paisley could during tummy time, but I wouldn't be writing about our story if we had a "normal" baby.
This was our new normal. One healthy baby hitting milestones, and one medically complex baby who would most likely be delayed with every milestone. All of our therapists made sure I knew she was delayed at our first therapy sessions. They go through these charts of things normal babies would be doing at Gracie's age. I would try to always maintain my composure during these sessions but quite frankly IT PISSED ME OFF.
If they caught me on a highly emotionally day (yes I would go through these emotional rollercoasters) then they would most likely hear me ask questions like:
Are these charts based on heart babies?
What about premature babies by 2 months?!
Or a baby that has had multiple surgeries?
Or a baby that was an Identical Twin?
Or a baby laying on her back for 6 months?
All questions that they could not answer at the time because the truth is NO. No, these charts are based on normal, healthy babies that GO HOME WITH THEIR PARENTS THE SAME DAY THE PARENTS DO! (RANT OVER)
I have to re-iterate to any heart parents reading my blog that those charts don't mean shit. Do not allow them to determine if your child is where they should or should not be because at the end of the day we all are just trying to keep our heart babies safe and give them the best life we can for either as long as we can or for their entire lives.
By week 2 of being home, I decided that continuous feeds had to go. I took the initiative to start bolus feeding Gracie. We would give her half of her feed, wait about 30-45 minutes then give her the rest of her feed. this gave us about 2 hours of her off of her feeding pump so we could actually do something. It also would help with her hunger. When she is given her food continuously she never would feel hungry, therefore, would never try to take anything from the bottle by mouth.
All of her nighttime feeds were continuous throughout the night to help her sleep all night. I also decided that since she always got so sick off of her iron, vitamins, and sodium chloride that it would be best to put them in her overnight feed so they would be much more diluted ( I was right). Occasionally she would puke overnight but for the most part, she would not. We were thrilled that these changes were happening.
One of the main reasons she was puking was the formula she was on. The fat-free (because of kilase in her chest tubes) toxic shit I had to feed my child. This was another reason she would not take any food by mouth because it literally tasted awful. the smell alone made me nauseous.
We were so close to getting past the number of weeks she had to be on no fat formula or breastmilk so I called her Cardiologist and told her she just keeps puking on this stuff. She told me to start giving her fortified breastmilk and the dietician would call me to give me more directions on how much formula to add to my breast milk. I was so relieved that I could finally give the good stuff to Gracie.
I recall getting off the phone and wanting to see if Gracie would latch as it had been a very long time since I breastfed her. In fact, I only had twice in total. My heart broke yet again when she would not latch and I knew the dream of breastfeeding Gracie was long gone. But I was happy to be able to continue to pump for her and fill her belly with mom's milk.
Each night Tim would get home from work, I'd go down to the basement to work out in our makeshift gym (covid kept us away from gyms) then we would switch once I was done. I'd make dinner, get the girls all settled in; Gracie in her swing until she was fast asleep with her pacifier, take Paisley upstairs to rock her and feed her to sleep then lay her in her crib. I'd come back down for Gracie and put her into her crib.
I loved picking Gracie up out of her swing fast asleep and rocking her a bit longer once we got upstairs, then lay her down. I'd go back downstairs to get her entire night feed set up in her feeding back, get her pump set up, administer all of her nighttime diuretics, then start her pump for her overnight feed. This became my new normal. Every single night I did the same thing. I could do this night routine in my sleep. In fact, I think I could even drive to the hospital still in my sleep. But it was all worth it to have our baby home.
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