It's been a joy to be back home since our stint back at ETCH. I have to say that it was more of an adjustment coming home post op than it was getting back into hospital mode, sad as that may sound, but we were in the NICU longer than we were home before we went back for this revision, so moving back into the hospital, the drive to and from the hospital, the faces, the cafeteria (bleck!), and regular trips to Starbucks still seemed all too familiar. One of the blessings out of this stay was seeing so many precious friends from the NICU. ..I know how much we love them and have truly missed them, but it was nice to see that we were missed, too. I loved seeing these amazing nurses and nurse practitioners stop in to visit and love on Addie and encourage me a lot in the process. Addie honestly loved the attention, too, since I've not allowed her many (ok, any) visitors since we came home. She showered them all with smiles and a few sweet coo's if the timing was just right. I've said many times that these NICU angels have become more than friends but are now family, and that was evident from the moment we arrived in the ER when one of our sweet primaries and another dear friend from the NICU came down to check on us. As soon as I saw them, I felt myself relax. Thank you, Betty and Becky; you have no idea how much your visit meant!!!!
Addie's surgery on Monday early afternoon went well. Dr. Harris had to remove the entire shunt; it had become blocked initially when the top catheter, the one located in her brain, clogged up with old blood and debris, slowing the flow of fluid to the bottom catheter, located in her abdomen. The decreased pressure allowed the bottom catheter to slowly clog up as scar tissue and other debris formed around it. That earned us one brand new shunt. They even sent the instruction packet from the valve back down with Addie, which included step by step instructions on how to place and operate the shunt system. You know, just in case I ever decided to become a neurosurgeon.
I will say that I made it through the entire hospital stay in fairly good spirits, all things considered, after my come apart the first night we were admitted. I have to say the hardest part was handing her off to the nurses going into surgery. We were once again able to go with her up the elevator to hand her off at the entrance to the surgical suite. ..and handing your sweet, tiny baby off, knowing she is going to be on the ventilator, knowing she is going to be poked and prodded and cut open will never, ever become normal or ok. Everyone tells me you get used to the revision process, and I can see how that is true. But, the moment of handing her over to a surgical team will never be easy. I know it was necessary, and I know it will most likely be necessary again, sooner rather than later. But, it will never, ever be "ok" to send her into surgery. ..and certainly not when it is her 4th surgery (as this was) in 9 months of life. ..I'm 30, and she has already had one more surgery than I have had in my entire life. I made it 29 years before I even had my first surgery. I can't pause to think about everything she's been through, or it is too much. I paused when we were sending her into surgery this time. ..and that's a dangerous thing to do. You can get lost in the unfairness of it all, and I don't want to. I want to be thankful, always. In the end, the reality is we are incredibly blessed. Addie, medically speaking, shouldn't have made it. When you look at the pure science of it, she shouldn't be here. I was admitted to the hospital in pre-term labor at 22 weeks. If I had waited much longer to get help, we would have had her too early to save. If Dr. Roussis hadn't been on call that night, my labor may very well not have been stopped. My water broke at 23 weeks; she could have and should have been born then. ..too early to save. Later, sepsis should have taken her from us, or her brain bleed, but they didn't. She could have had severe cerebral palsy, but she doesn't seem to. There were moments when we thought she was already showing early signs of severe CP, but those have all gone away. We were afraid she would never walk. Now she kicks and flails her arms around freely with no hint of stiffness. She is a living, breathing miracle. God has blessed us with the beautiful spirit that embodies Addie. I should never, ever be caught up in the sadness or thoughts of the unfairness of it all, although I do struggle with both far more often than I should. I do my best not to pause now, unless it is for the purpose of giving thanks. Pausing so I could get lost in the numbness before her surgery was a bad idea, but I bounced back. I am just so thankful she came through it all so well and that she came back to me off the ventilator!
Addie was moved down to the 4th floor, post-surgical wing following her surgery. Life on the 4th floor and in the PICU is very different than life in the NICU. ..and as someone who spent over 5 months in the NICU (and is a creature of habit), I'm much more comfortable with the NICU environment than either of the other two. I'm used to the doctors, nurse practitioners, nurses, and respiratory therapists in the NICU giving us specific instruction for every move, medication, and protocol post-op. On the 4th floor, they are asking ME what we should do and what I prefer to do about Addie's feedings and monitoring (which is good, she was doing well enough that a monitor was optional). Everyone was incredibly kind and helpful; I'm just not used to being on a "normal" floor. It's amazing how fast things move in the rest of the world. True to their word, Addie's doctor and nurse practitioner had her ready for discharge less than 24 hours post-op. They were kind and left the decision up to me, but I've learned how to jump in with both feet, so we headed home.
The first week post-op was especially challenging. Addie was incredibly sore and cranky - which is entirely understandable! Her feedings were even more difficult than normal, which is saying a LOT. She refused to sleep or rest on her left side, again, not that I blame her, but it made her head shape even worse than it was before. She needed a lot of extra attention, love, and patience. Her sleep schedule was thrown off, and she was much more restless when she was sleeping. All that said, she did amazingly well! Her incisions healed quickly, and she was in a great mood when she was awake and had, had her Tylenol.That sweet girl just doesn't give up! I'm so proud and greatful I get to be her mommy.
Since getting her staples out (the tape removal was worse than the actual staples), she has rebounded quickly. This week she is back to her usual self, and we are starting to regroup on her therapies. She thankfully didn't regress any on the progress we made through speech therapy (not that there was much ground to lose there!), but she definitely took several steps back in her occupational / physical therapy (at least a month's worth of progress gone). Our poor sweet hardworking girl who had gotten to where she could sit in her Bumbo seat for 12 minutes now slumps over and lists to the right after just 1 minute. She has some new tightness in her neck from reverting back to her right sided preferences, and the flat spot on the back of her head and the corresponding bulge in her forehead are more pronounced than ever. I sent her OT a text to prepare her for the lost progress, and her response instantly bolstered my spirits and confidence. "We fixed her once; we'll fix her again". It's amazing how that little phrase encouraged me. We DID do it once, and we would do it again. Besides, as hard as we feel like we've worked, she's worked even harder to make all of that progress, and she's ready to do it again. On the bright side, she is more tolerant of time on her tummy - yay!!! She will tolerate being held facing into our chest, which she would not do before, and she's enjoying rolling (with assistance) from her back to her belly, looking around, and rolling back (mostly on her own). That's great progress in our world!!
In amazing news (at least to those of us who spend an hour coaxing Addie to eat 3/4 tablespoon of cereal and sweet potatos), Addie will voluntarily eat (and swallow on her own, no paci needed to make her clear her mouth!) applesauce!!! I have to admit, the applesauce is delish. I tasted it before sharing with Addie, and I may switch from Mott's to Gerber myself. It is good stuff! This is just such a huge moral victory for me, small as it may seem to most people. To see her slurp anything off her lips is amazing. To see her gum and play with something in her mouth and then swallow it, all on her own, is nothing short of a miracle. For all I care, she can eat applesauce every meal, every day, for the rest of her life.. .go sweet girl, go!!
Cuddles with Daddy a few days before we went back to the hospital.
Doing everything in our power to escape laying anywhere near our new shunt.
Having fun sitting up and driving the day before we went back to the hospital - look at all her hair!!
Yummy, sweet potatos!!
Yeah, we lean a little to the right now. ..
Cuddles after we finished our 4:30 meal - yay for applesauce!!!
Nothing can keep this girl down!
All in all, our sweet miracle is as precious and resilient as ever. When she laughs, I think my heart may burst for joy. When she smiles, the whole world lights up. I know her guardian angels must be exhausted - surely they operate in shifts - and I fully believe that they cry happy tears with me and sing with joy at the light that is Addie.
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