We were finally home as a family of 4, or so we thought
To say we did not think this day would ever get there n then here we were a family of 4 and our 3 pups. The pups were very interested in our new family member, but the smell of her was very familiar as I always came home smelling like Gracie.
We tried to settle in the best we could and as quickly as we could because we weren't sure how long we had at home. I cannot express to you how happy I was to be home with my girl. No more running around, being separated as a family, eating on the go, hoping I packed everything I needed for myself but mostly Paisley. Not to mention, the hospital is just a very tough place to essentially "live". Lots of interruptions, pokes, blood pressures, beeps...
omg the freaking BEEPS!
Because Gracie was on a continuous feed, we had her pump hooked up to her 24/7. This was tough. If I wanted to carry her I had to carry the backpack as well. A small inconvenience to be at home, but the part that was hard is I was afraid one of the dogs or even us would get snagged on her line and out would go her feeding tube which then meant a trip to the ER. I was not comfortable putting her feeding tube back in since it can get down the wrong tube and end up in her lungs. Believe me, I just did NOT need anything else happening to this sweet girl.
Gracie LOVED her swing. Each night we would put her in her swing at about 6:30 PM and she would be out like a light. I was still breastfeeding and pumping at this time so I would then get Paisley to sleep after feeding her and come back down for Gracie. The girls were currently sleeping in their cribs. Paisley would still wake during the night and I would feed her in my bed. Sometimes I would fall asleep but most of the time once she fell asleep I put her back in her crib. I wanted to make sure she understood that, that was her bed.
Gracie was amazing and sleeping through the night since she was on a continuous feed, she was a happy girl! Each night I would put together her entire night feed. Before I learned to put the meds that made her sick in her night feed I was administering them throughout the day. As well as her Lasix and aldectazide (diuretics).
It was a learning curve for sure. But since we desperately needed Gracie to gain weight we needed that food staying in her belly! Before we left the hospital we went over her food regimen. We were giving Gracie this absolutely toxic shit formula to bump up her caloric intake. They were still a bit nervous to keep her on full-fat breastmilk at home so they were having her take a low-fat formula. Since her body was working so hard, she was burning more calories than a normal baby so we needed to replace those calories and then some.
This formula was disgusting, just the smell alone was awful! But it was the only thing available to babies who had pleural effusions that showed kilase (fat) in their chest tube drainage. I felt terrible feeding this to Gracie because she wouldn't even take it by mouth it was so bad! Her continuous feed was pumping it so slowly into her because if it was too fast she would instantly puke. In fact, she puked A LOT.
Every night I'd stop her feeding pump, put her 2 diuretics through, then restart her feeding pump. I also made sure she always had her owlet on her foot so I could track her heart rate and oxygen saturations. This was literally the ONLY way I would sleep at night. It was so hard to go from the monitors telling me everything I needed to know, to nothing. I was in constant fear she would die, and that is the honest truth.
The next few days consisted of lots of photoshoots, playtime with her sister walks outside as a family, and ALL THE SNUGGLES!
We had a cardiology appointment, drew labs, checked on her lungs with X-ray and her cardiologist decided we could wean one of her diuretics since her lungs looked amazing on X-ray.
On September 24th we had planned a weekend playdate with our twin friends from Illinois. My friend knew that I could not be too far away from the hospital just in case, so she came to us with her identical boys! She was literally one of the only people I trusted around the girls during all the covid outbreaks. After all, she was being careful too since she had her sweet little guys to watch out for!
The first day went fine. All 4 of the babies were exhausted and asleep by 5 PM and we just knew we were in for a ROUGH morning! I'm sure all the excitement was exhausting for them. The next morning, sure enough, everyone was up at 4 AM, she and I sort of laughed together with dark bags under our eyes, pumping parts everywhere, baby toys everywhere, and coffee in our hands because we knew this was going to happen. Gracie was napping downstairs and we took the other 3 for a quick photo op in Paisleys crib before coming back down to a very fussy Gracie.
I couldn't for the life of me calm down my baby, something that truly never happened. I was her person! My friend at the time was stopping over to grab two of my dogs to make my life easier while we had company and she walked right into the living room and sat down.
I STARTED SWEATING. Mind you THIS FRIEND did not care about covid. She was still out doing whatever she wanted, whenever she wanted to do it, AND worked with covid patients as a nurse in the ICU. I was having a full-on panic attack. My child won't stop crying, I am possibly putting my friend's kids in danger of catching covid and not to mention my own, one being a freaking HEART BABY!!!
I started to notice just how pale Gracie was and I was becoming more and more uneasy. I burst into tears, partially because of my friend walking into my living room and partially because something was NOT okay with Gracie. I sent a picture of Gracie to her cardiologist and she said I needed to bring her in. Since it was the weekend we had no choice but to go to the ER. So there I was rushing around trying to pack everything up, I had company over, I had to call my mother-in-law to come over to help with Paisley and I ran out the door leaving my good friend with not two babies but THREE!
As I was leaving I said to her
"are you sure you are okay?"
and she responded with
"Caitie, GO!".
I packed Gracie up and we were headed back to the hospital to check what could've possibly gone wrong in just 6 days.....
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