I'm absolutely terrible at upkeeping this site- but I get asked about it so often, I will commit (again) to being better at this. What a few months it has been! Grace is a wiggle worm extraodinaire! She is either upside down, sideways, flipped over or half hanging out of her crib each night. Here she is warding off the paparazzi. ;)
Since Grace's original diagnosis and surgery, we have been told that Grace would be developmentally delayed. After visiting the neuro-developmental specialist (I think I blogged about this a while back??) we wer
e told she may never hold down a job, low IQ, etc. etc. We were referred to a neurosurgeon regarding her lack of head growth. Great news!! Her head grew like 4 cm from the one visit to the next and the brain MRI shows that everything is in working order and doing well. In fact, the surgeon actually informed me that on Grace's 5th birthday, I was to take her back to the original doctor and let her throw spit-balls at her! HA!! Take that, fancy pants doctor. :)
4th of July was a wonderful day spent with good friends and family. We celebrated Auntie Blair's 29th birthday with swimming, tons of food and lots to drink!
We headed towards the stadium
later that day for fireworks. Grace was in awe!
Fast forward to now- she's so smart!! She's talking (not actual words, although we think we hear "hi" every now and then...), kicking, laughing, smiling, playing, engaging, eating applesauce from a spoon- what a difference! She's been absolutely amazing, and if it weren't for the NG tube that has/had been taped to her face, no one would be able to tell there was ever anything wrong with her!
Grace still won't take a bottle- nothing that even resembles a bottle, pacifier or breast- she wants NOTHING to do with anything of the sort. She will, however, take food by spoon in very small amounts. I had asked the doctor if there was a way to thicken her formula so that we could "solely" spoon feed her, but there isn't a way to get enough calories into each feeding by just food alone, we would have to use formula. After much debate, research, consults with various doctors and other professionals, including watching Grace's bud go through a G tube surgery, we decided to go for it. We made the appointment with the surgeon.... and then we cancelled it.
I was so worried- was I doing the right thing by having her undergo another surgery? What if they had to intubate (put a ventilator down her throat)? Would I be lessening her viability for the next heart surgery? So, I did more research, and more questioning, and more praying and again, we decided to go for it. We made the appointment with the surgeon.... and had surgery the next morning.
What a rough surgery!! She was in so much pain, and anguish. She cried, and cried and cried and cried. They eventually had to morphine her and sedate her and ibuprophen her! Virgil, her Navajo spirit guide (I'll go on to this in a second), came for a quick visit, did some healing prayers for all of us, and within 2 hours, she was a different child!
The hospital kept us overnight for monitoring an extra night because of her special heart, but released us and home we went.
**I will get back to Virgil in a moment, see end of blog**
Once home, Grace was needing meds continually to avoid pain. We found a whitish discharge, and noticed the surgical site was red and oozy. After speaking with the surgeon over several days, we went into the office to check for any further complications. The surgeon reccomended an upper GI to check for any problems with the procedure, but all was well. The surgeon couldn't explain Grace's irratibility and other issues, and advised that we should admit to the ER if things continued to get worse for further monitoring.
July 22nd, our adoption day, was finally here! We all dressed in pink, friends and family included.
Even the judge commented on how color coordinated we all were. The judge told Gracie that she had picked a great family, and the ceremony was over.
We all went to Mimi's Cafe for a celebratory breakfast/brunch and I noticed that Grace was a bit fussier than usual, but chalked it up to over-stimulation. A few hours later, the discharge from her G Tube site changed from white to yellow to green, and I finally called again and pre-arranged an ER visit. When we got to the ER, we noticed she was a bit blue. It hadn't happened before, and we didn't know why, so they admitted us to the cardiac floor to monitor both
her heart and G Tube. All was well with her G tube, but her breathing and blueness continued to get worse and worse. We went from being on no oxygen, to needing .2 liter, .5 liters, 1 liter and finally up to 15 liters at one point, then back down to needing a constant 3 liters... not normal at all!
I questioned her heart and the cardiac physician on call refused to leave home to re-evaluate. Being the pushy bitch that I am when I need to be, I called other cardiologists that I knew, and finally got some answers and an admit to the ICU. Once in the ICU she stabilized, with the intent of getting answers first thing in the morning.
That brings us to today- Grace had a cardiac catheterization (basically a camera is inserted into her heart/lungs to take photos) and they were able to see her shunt and heart function like never before. She was under general anesthesia for 3+ hours, worrying me like crazy, but she did great. Turns out, her shunt is way past overdue- she should have required surgery 3-4 months ago!! However, her body, being a fighter, "grew" larger superficial arteries to supply extra blood, thus oxygenation, to the lungs, keeping her sats up and her color pink. If we hadn't done the actual cath procedure, and opted instead for a CT scan or EKHO, we would never have known, and possibly have been sent home on oxygen.
Instead, Grace will be having her 2nd surgery, AKA "The Big One!" Grace will be open heart, meaning they'll actually cut into her heart and place her on bypass, having a machine do the work of "living" for her while they operate. The actual procedure is only 3-4 hours, but feels like days long when you're living it! Grace will have her surgery possibly within the next 3-4 days, but within the next 10 days. We'll be moving into the Ronald McDonald Home again for the next month or so, until she's recovered and ready to go home. This surgery they'll be building a "conduit" to connect her pulmonary artery and heart, and then also closing the hole in her heart. Recovery should take 10-20 days.
Good news- she'll be able to travel to higher elevations soon- this means we can visit friends and family, visit Sedona, visit Flagstaff, etc. We can live like normal for hopefully a few years!!
I'm really scared about the procedure, but it's a neccesary evil, so I'll deal with it- but not without fear and prayer.
Onto Virgil.... You probably remember me telling you about the Native American ceremonies that we have participated in, and the other Native American things.... Well, 2 coincidences have appeared regarding Virgil now- first, when we first met him @ his house, he blessed Grace and us, while she was on oxygen. Within the week we went from being on oxygen indefinitely to being completely off oxygen. Then, a few weeks ago, similar experience... she was a train wreck, Virgil came and blessed her, and within 2 hours- normal kiddo! Now, the whole "growing" of collateral arteries to keep her healthy while she grew stronger and healthier for her next heart surgery.
I will update as we go on- but thank you all for the prayers, support, kind words and love. So many of you comment that I am an inspiration to you, and that shocks me, but I really couldn't be as strong as I am now, without you all!!
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