Every Day Magic
Quick update: After taking some much-needed time off I am ready to get back to blogs every two weeks. They will be posted every Wednesday. As some know and many do not, I am very present in the heart community. With that said, it takes a huge toll on someone having a surviving heart baby and watching other heart babies struggle or pass on. I have watched many of my friends go through some similar scenarios as we have. Still, also some go through much much worse, and it's important for me to be able to step away from the heart community for small amounts of time so I can remain in a positive mindset. Thank you all for understanding!
We were home, finally, a family of 4 (or 7 if you count the pups!). We were adjusting as needed for both Gracie and Paisley. I wanted the girls to interact as much as possible as it was hard to do in the hospital with all of the tubes, wires, etc.
We were just about 9 months old. Gracie was significantly delayed compared to Paisley which came as no surprise to us. It almost felt like having a 9-month-old and a 3-month-old. It was an absolute struggle to have two kids so young at such different spots. But to be completely honest, we did not care one bit. All we ever wanted was to be home, and feel like we were in a safe place with Grace. We weren't in that safe place yet but I knew we would be in time.
Gracie spent a lot of her time playing under her hanging toys, in my arms, or in her swing watching the world go by. Paisley was crawling around and starting to pull to stand. Tim and I couldn't get enough of holding Grace without everything attached to her. In a way it felt so awkward not having to step over wires and tubes just to hold your own baby. But also so very refreshing!
One thing all of us medically complex parents have is the continuous anxiety of knowing that if something was to go wrong very rapidly the best place for your child is the hospital. We want them home SO BAD but at the same time the anxiety of being so terrified something could happen can somewhat consume you. In the past I have just stared at Gracie for minutes counting her heart beats, watching her breathing and treating her clinically as oppose to your average person trying to make them giggle, or babble. Its stressful and some days us parents just do not get enough credit OUTLOUD. But I am here to say that all you parents who are taking care of your medically complex child/children are true rockstars!
By January 30th, we had, had two checkups with her cardiologist. This includes drawing labs, and monitoring her oxygen and heart rate. After her first check-up she had to wear a heart rate monitor for 24 hours on her chest, this was to make sure she was not having tachycardia. (She wasn’t!). Her 2nd visit was mainly because she was puking more than normal. She did just have vaccines the night before and she had this reaction last time but we wanted to be sure.
Having a heart baby feeding issues just come with the territory so trips to the GI clinic were pretty normal. However, the last time she was throwing up so much her oxygen was in the 70's which was VERY low for her! Therefore, I needed to be sure that everything was ok for my own peace of mind.
Now let me tell you about having vaccines and twins. You obviously get them into the pediatrician at the same time. But you cannot comfort two babies at once. I had my mom come with us to hold Paisley so that I could hold Gracie while they both got their vaccines. EVEN THAT put me into an anxiety-filled state. I know how important it was to have their vaccines but yet again ANOTHER POKE. Infact it was more than just one poke sometimes it was 2-4. So I just get a pit in my stomach as I hear "1, 2, 3......." Then two babies screaming. The other thing that just rubbed my the wrong way was this one nurse would just jam the syringe into my poor sweet girls legs. Why do we need to do that? Just poke n be done, we do not need to hit the damn bone!
I always had my mom come with me for these appointments and I always held Gracie and she always held Paisley. At the time I just felt that Grace had been through SO MUCH that she needed the comfort of her mom a bit more. I'm not sure if this makes me a bad mom to Paisley or not. It does sadden me because I do know both of my babies needed me. As a mom, I think we all are just trying to do the best that we can in each moment.
I love both my girls just the same!
Feeding Gracie had become the hardest part for us, besides keeping track of meds. Between trying to keep her from pulling out her feeding tube, to US not accidentally pulling out her feeding tube. Oh yes, we made plenty of our own mistakes! Between Tim and I, we each managed to pull her tube out once per person while it was bridled... Leaving us feeling like a bag of shit in a dumpster fire started by the homeless man down the road.
It is not fun inflicting injuries on your already sick child who went through the gates of hell and back. We have since forgiven ourselves after many tears, self-talks, and extra cuddles with Gracie. But I am here to tell all of you heart parents or parents of medically complex children that you ARE going to make mistakes. You are only human, and at the end of the day, we all know that you are just trying to survive and do your best for your child. Easier said than done, I know!
Up until February each week was physical therapy, speech therapy, occupational therapy, GI clinic, cardiology, and lots and lots of twin time. I was still breastfeeding Paisley and exclusively pumping for Gracie. She was really starting to gain some good weight! Then our sweet little Gracie popped two lower teeth! We were so excited to see them! Gracie was no longer using the pump during the day so just gavage feeds using gravity. As I mentioned before this allowed for much more freedom during the day!
Paisley was using her walker and was quite literally all over the place! Gracie was getting to the point of really decent head control and would actually try to sit up in her swing! She was getting so strong from all over her tummy time activities and physical therapy.
We were so proud of her!
Upon leaving the hospital this last time we were under the impression that we would be needing to get the stint in her SVC replaced sooner than later. My biggest question for her cardiologist was how will I know that it is time? Will it creep up overnight? Will this be an ER situation? Not that I cannot handle the ER since we were basically frequent flyers there. Her cardiologist mentioned that this would be more of a gradual thing I'd notice. More swelling within her neck and face, since the SVC is at the top of our hearts closest to your head would be preventing fluid from draining down correctly, thus inflicting more fluid build-up.
I hated the thought of sitting and waiting once again. But it was what we needed to do and I had become really good at reading my baby girl. We still kept the owlet on her each night, and if I've said this once n I'd say it a thousand times I believe the owlet has saved my baby's life NUMEROUS times. Having the knowledge of her sats was gold!
If you do not remember me talking about our puppy Balto who was returned to us at the utmost worst time then go back and read! But we had finished up his training and we interviewed a family to adopt him. We were ecstatic to have found him an amazing home and we got ready to say our goodbyes to him. My parents came to watch the girls for just a few hours, we gave Balto lots of love and said goodbye to him. His new family would be picking him up the next day. One more GOOD thing was happening and many more were to come!
As the crazy people that we are, we ALSO started house hunting and found a new home for our family. After offering every penny we owned, one arm, and one leg, we actually won the bid! WOOO WHOO!! We were beyond excited to move into a home that was more suited to our growing family. Our closing date was March 19, 2021. We had to move in literally 24 hours. So I have two babies under 1 year old, one is medically complex, and the entire house to get packed up. So we packed everything, rallied what troops we could for help and moved everything in less than 24 hours.
The next day we signed our papers, which got screwed up but worked out just fine in the end. We left both babies with my dad since my mom was our realtor and had to come with us. Our original house was being closed the first thing that morning and I was trying to get any last thing I could out of the house INCLUDING my cat who likes to hide in the raftors. No, I'm not kidding. This cat.... would not come out of the fucking raftors in the basement for the life of me. Like if my life depended on this cat coming out... i'd be dead. I had to call our realestate agency and ask them what I should do because technically this was no longer my house. OH BUT IT GETS BETTER.
SOMEHOW I locked myself out of the freaking house with both the cat AND my phone still INSIDE! HOW?! like literally Caitie? HOW?!
So we got a live trap, put some tuna in it and waited until the new owners called to tell me that my cat had been captured. The amount of added stress this cat gave me was soooo unnecessary!
Lastly, Gracie is now repping for a small clothing shop called Crafty Cuts Galore! We are so excited to share this news with you all! Paisley wore her clothing when we were all in the hospital and we wanted to look super cute! Use our code to save at checkout: Schulztwins
Also join us on the VIP facebook group where you can see all of the new product drops and deals! CCG_Handmade Clothing
We have seen the new Halloween AND FALL drops and they are AWESOME! in fact we already ordered our selections!
Peep the picture below of Paisley in her matching CCG bummies and Bow!!
EVERYTHING IS COMPLETELY HANDMADE!
We are also now officially searching for donations for our Christimas bags again this year for Childrens Hospital of Wisconsin. Last year we had 22 large gift bags in including various helpful items for our families in the hospital during tough holiday season, including a $50 gift card per family!
Help us make it another great year of donating with items (22-25) or donating of cash. We are not picky and appreciate any and all donations!
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