I was able to hold my girl again
Come August each day Gracie’s swelling was starting to improve more and more now that she was no longer trying to fight her horrible infection. Again, it had been a while since I was able to hold my girl so the team made it happen for us. It took a few nurses to help move Gracie because of all of her chest tubes but once again my girl was in my arms.
Her chest tubes are sutured into the skin (yes it is as horrible as it sounds, believe me) so you have to be extra careful with moving her or the sutures can loosen and that is a whole other issue having to suture them back in. Basically, they give her a small dose of morphine and dig a giant needle into her skin to secure the chest tube back down. It’s awful!
Gracie loved her musical mobile. It was literally a cardboard spiral hung up onto a mobile motor. She also loved her vibrating paddle and when it would stop she would just about wake up instantly. We made sure to keep both of these going as much as we could because at this point her comfort was #1.
She was extubated on August 1st which was a huge win! From here they started to wean some of her meds which is when her withdrawals started to kick in. Gracie was on high flow oxygen and doing very well. Because her lung was repairing itself after collapsing we figured she’d be on oxygen a little bit longer than anticipated.
Gracie sucked vigorously on her penguin Wubbanub as she was still only on IV nutrition. This was still one of the hardest parts, watching her be so hungry every day.
Each day I would wake up, get Paisley fed and dressed then head up to the hospital by about 10 AM just in time for morning rounds. For a while it was the same thing, letting Gracie rest and heal. Let’s talk about the “resting” part though.
The nurses are supposed to do all of their notes and blood pressure checks and bla bla bla every two hours or so. Well, that doesn’t mean that each baby is on the same schedule as each nurse, so Gracie would be woken up numerous times throughout the day for a flipping blood pressure check.
She had like 5 monitors on her, 10 different meds going into her, she was not being fed and they have to wake her up to do a blood pressure check? This drove us nuts! It was so upsetting that after I had gotten her to sleep, they would come in and wake her right back up.
She hated blood pressure checks, as well as being changed. So trying to calm her back down to go to sleep was tough after either of these. I wish during this time I was more vocal and told them “NO” That they could not come in and wake her up because they had to fill out their “charts”. I came to be much more vocal later on though.
Then finally Gracie was down to just 1 chest tube, the smallest one she had. Some of the nurses are more apprehensive about holding when a baby still has a chest tube and some are more willing to give it a try. I still had Paisley there with us so I did need someone to help me out with her, I always loved how willing the nurses always were in order to allow me time with just Gracie.
Something I did not talk about much is how much kangaroo care we would do prior to surgery. So I was finally able to hold Gracie skin to skin. This is something extra beneficial for the baby and mom. It gives a certain bond, one that I didn’t exactly get through breastfeeding with Gracie since she only latched 1 or 2 times. It was tough at first to do, I think Gracie was a little overwhelmed with all the stimulation.
When I wasn’t holding Gracie we would sometimes prop her up using a boppy pillow, she fits perfectly in the middle of it. I’d turn her mobile on and I would just talk with her. Because Gracie was on her back for most of her life she had a very flat head so it was important to have her propped up and rotate on her sides to give her head a break.
I wanted the girls to interact as much as they could at this age so I would put them sitting across from each other so they could see one another. Gracie loved to watch her sister, she hardly took her eyes off of Paisley.
They finally decided to start up some of Gracies feeds to see how well she would do. She did have her 1 chest tube still so they were watching to see if she would have any lipids in her chest tubes. Unfortunately for us and Gracie, she did. Which meant they had to stop feeding again. Keeping in mind that they were giving her about 10mL an hour which is practically nothing. It broke our hearts.
Why couldn’t just one thing go in her favor? Why was everything that could happen, HAPPENING?! It felt like this was a never-ending nightmare and I just could not wake up.
Gracie would get an X-ray of her chest every single morning to see what her lung looked like. For a while, they were clearing up of the haziness until her feeds started up which is when they realized she developed pleural effusions. This was the reason she was having such a hard time getting rid of her chest tubes. They would continuously dump fluid out every day.
Some days it was really hard to see Paisley next to Gracie. You could just see how sick Gracie was compared to perfectly pink Paisley. I felt guilty to be able to feed Paisley while watching my poor Gracie, starving. She was back on IV nutrition and lipids but this was not the same as having a full belly of milk.
They decided the best thing for Gracie was to start her on a med called Octreotide. This was supposed to help with the pleural effusions she had developed.
I had a hard time finding the exact medical definition of this drug. But basically, it was supposed to help dry up the lymphatic system and help with the pleural effusions, however, there is no actual medical research stating whether this is the real cause of helping cure pleural effusions. This drug also can have some long-lasting side effects if used for a long time.
This was something I was concerned with for all the meds she was on! I tried to ask as many questions as I possibly could to understand what kind of life Gracie could have after all of this. The other thing that scared me was the exposure to all of the X-rays and CTs that she was getting. The doctors reassured me that the X-rays were similar to talking on your cell phone each day and the exposure was very small. However, CT’s there is a much larger exposure, luckily she only would have a few of these total.
They started to skim my breast milk so that Gracie would be able to have a belly full of milk somehow. Unfortunately, the fats in my breastmilk were coming through her chest tube as well so this was the reason they started to skim my milk.
I had another tough time finding a definition for this as well, simply because the reason of why we had to skim my breastmilk. But I can tell you that this is not something we could do at home for Gracie.
So, therefore as long as she was on skimmed breastmilk… she’d be in the hospital.
I always asked for a timeline. I was so anxious to get us out of there and finally be able to start our life as a family! Living in the hospital was the worst! But I also had the anxiety of can I take care of her at home as well as they can here in the hospital? what if something happens? What if she stops breathing? Will I be able to tell something is wrong?
To say my anxiety was through the roof is an understatement. I was actually so aware of my mental health that the depression meds I was currently on (fluoxetine or Prozac) were 20mg. I decided to double my meds, yes I self-diagnosed myself and decided to double my own medication. I had to! I had to be as mentally stable as possible for my family.
I did end up going in for my annual physical which actually annoyed me because I did not have time to focus on myself at this point. I also started having inflamed lymph nodes near my groin area which freaked me out. I had X-rays taken and everything seemed fine. This did eventually go away and I honestly think it was just the amount of stress I was under.
By August 18th Gracie was completely off oxygen, off her antibiotics, off steroids, and down to .1 methadone which meant just one more wean and she would be completely off that med. They also were hoping to stop Octreotide by the next day and try to start feeds back up. By starting feeds I mean full-fat breastmilk!
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