Frequent Flyer at the ER
Come October Gracie was still home, happy and working on building up her feeds. She was currently at 65mL/ feed 4x a day. It was still extremely important for her to gain weight before her next surgery. Gaining weight meant that her heart would be somewhat bigger and she'd be that much strong to recover faster. (That was our hope!)
On October 2nd I was watching her owlet sats and noticed her dipping her heart rate pretty low. I text her cardiologist right away a picture of the sats themselves and asked her thoughts. She assured me that if they stayed low or dipped even lower that we needed to bring her in. Luckily, she popped back up into her normal 80-100 HR.
Gracies overnight feed was 26 mL per hour for 10 hours. This was a slower rate due to her vomiting many of her feeds up before. However, during the day she started showing me that she was more hungry. She'd smack her lips, so I text her cardiologist about upping her day feeds to 70mL and she agreed to try it. I also upped her night feeds to 27 per hour and she had no issues with that. She did puke a tiny bit on the new 70mL's but for the most part, she was doing fantastic with her added calories.
Her new nutrition plan was as follows:
75mL + 1tsp formula.
This brought her up to 24 calories per ounce, whereas she was at 22. It may seem like something so tiny but she was only 8lbs! We needed her to continue to gain weight and to intake more calories than she was exerting. Her heart was working overtime to make up for everything that was going on which in turn burned more calories.
On October 15th, Gracie was now 8lbs and 3 oz. She was up two ounces in just two days!! So her new formula was definitely working! Then we had to go in for shots. I felt it important to get all of her baby vaccines if we were able to (which we were). But due to the vaccines, we had a pretty terrible two nights and days. She puked all night, all of her day feeds and I started to get very nervous. I again, text her cardiologist to explain all that was going on and she wanted me to bring her in.
I decided to wait for Grace to wake up from her nap to see how she was and just like that she was her smiley self again. Luckily, we did not feel the need to go in at this time and I kept her cardiologist updated on her oxygen and HR sats. They were all normal Gracie numbers.
Then October 18th happened. Gracie pulled out her feeding tube and sure enough, we were heading into the ER because it was a weekend and the clinic was not open. Her cardiologist always called ahead for us so we would be admitted quickly but everyone knows how an ER is. COMPLETE CHAOS. Especially on a weekend.
Her cardiologist decided that since we were already coming in that we should get labs and check her numbers. Gracie was also weighed and weighed in at 8lbs 4.6oz even after all the puking! We waited on cardiology to look over her labs, had a nurse put Gracie's feeding tube back in which was always so hard to watch because she would just scream bloody murder. Once we heard from cardiology we then could be discharged. However, we still were in the ER for over 2 hours which was ridiculous!
Not only running into issues of keeping her feeding tube in we also were running into issues with
the pharmacy and our insurance. Because Gracie was on diuretics they only allowed the exact amount of meds that she'd need for 30 days. When I say EXACT I mean EXACT so there was no consideration for what got stuck on the dropper or the sides of the bottle. So this meant we ran out quicker than 30 days and they didn't want to refill them yet.
If you are thinking like I was you'd be asking
"as if I don't have enough shit to worry about, now I have to worry whether I can get my sick babies meds!"
It was incredibly frustrating! I didn't have the time or energy to be running all over and calling/texting everyone just to get Gracie's meds. Obviously, I DID DO ALL OF THIS because I had to but it was very annoying!
Then October 27th happened and Gracie pulled out her feeding tube AGAIN! Luckily for us, it was a weekday so we went into the clinic and had an NG nurse put it back in quickly. When I say quickly though I mean 30-minute drive thereafter packing up 2 babies, unpack babies into the stroller, walk into the hospital, get a covid screen and badge, head to Herma Heart clinic, check-in, wait, get called into a room, wait, the nurse comes in to take vitals, wait, cardiologist come in to get more vitals, wait, feed Paisley so my boobs don't explode and/or she starts screaming, gets Gracies NG replaced, packs babies back in their stroller, walks back to the car and drive 30 minutes home, unpack 2 babies.
Daily blowouts!
As you can see this is not a very quick task. However, much quicker than 2 to 3 hours in the ER with a bunch of random other people.
Once again, we settle back in at home and continue our normal routine. Halloween was right around the corner and I was so excited to pick out the girl's first costumes. So excited in fact that I did absolutely NOTHING! I worked myself up into a frenzy trying to find the perfect costumes that I ended up with two onesies that were supposed to get a ain't "M" on them to make them m&ms. Till I realized the color of the onesies I ordered were yellow and pink. HOW MANY M&M'S ARE YELLOW AND PINK?!?!
It wasn't freaking easter so that was a dumb idea and we ended up in just out cute Halloween foot pajamas. However, I did pick up a few pumpkins and decided that it would be a good idea to try and sit the girls INSIDE the pumpkins. AGAIN, a terrible idea! Gracie was sooooo mad that I did that to her, and Paisley just wanted to play with the leftover guts in the pumpkin.
So that was a total FAIL. But the pictures still turned out pretty cute! I've always been a little extra when it came to all of my wild ideas to celebrate something, this was clearly no exception. I won't lie I was super sad to see all of the kiddos on Facebook in their cute little costumes but apparently, it just was not our year for that.
Then November hit, it was cold here in Wisconsin already and I always felt I needed to pack the girls up in everything they owned to keep them warm. November 6th was no exception when just ONE WEEK LATER Gracie pulled out her feeding tube AGAIN!!!!! I won't take you through the process again as you have already read what it looks like for us to pack up and go into the clinic to replace it BUT I will share with you that about 5 minutes after we got home from the clinic, she pulled it back out.
< < < < THAT WAS ME!!
You know how as a parent you kind of talk to yourself like
"Fuck Fuck Fuck, what the fuckity fuckery is this fucking shit"
Yeah, that's basically how it went. I was never mad AT Gracie, she was just a baby and had no idea what she was doing. I was just frustrated by the entire scenario because I had TWO BABIES TO PACK BACK UP!! However, I called my husband and made him come home. I was tapped out for the day and if I only had to pack Gracie up that would make my life ten times easier, and the wonderful hubby and daddy that he is.... he come straight home.
They decided that we should think about having her feeding tube bridled. I was scared because I didn't want to put Gracie through any more than she already was and had been through. The nurse explained to me that us having to continue to put the tube back in was probable causing for stress that this one time of bridling the tube in her nose. So we went ahead and had it bridled.
I left the room for this, I was struggling to watch this continue to happen. It broke my heart to always see her in so much distress. I made sure to be right there once it was over with to give her tons of snuggles. I struggled between making her go through it alone and making me watch her struggle through it. I guess looking back now, I chose the selfish option to wait outside the door.
With the unknown of when Gracie would be needing her next surgery my older brother reached out to me to ask what we may need. I simply said to him
I need you all to meet Gracie, snuggle her, hold her, just incase this is the only time you will get to"
Just typing that out brings back a flood of emotions and a very tough conversation that I had with my sister-in-law the day they came to meet our sweet Gracie.
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