I am typing this from a hospital room at Shriner’s in Chicago.Laying next to me is one of the most beautiful girls on the planet.My sweet girl had bone graft surgery this morning.For those of you not versed in the protocol of cleft L/P reconstruction surgeries, this is the 3rd in the series of medically necessary surgeries for Nina.She had her lip and palate both repaired in China, and now at 10 years of age, it was time to undo and redo some of the repairs of the past.Because Nina’s palate had to be drawn together and stitched closed when she was younger, it was much smaller than her lower palate.In order for her teeth to align in adulthood and remove the outcome of future jaw and mouth malformations/problems, it was time to enlarge her upper palate.The process is quite amazing.They harvest bone from her hip and pack it into her palate both from the “nasal passages side” and the “mouth side”.They also pack bone into the cleft in her gum line.In order to be prepared for this, Nina had to undergo a bit of orthodontia the past year, widening her palate (re-opening it to the proper size), opening up her cleft in the gumline, and removing some teeth that would not be used when she goes through the rest of the orthodontic phase.She has had a permanent palate widener in her mouth for almost a year, and will continue to have it until her braces go on.With diligent care and careful cleaning, the bone will regenerate and fill in the gaps currently in her palate.Incredible, no?
What is even more incredible is how my dear girl handled it all.Folks, this is one tough cookie.She is doing quite well and rarely utters a single complaint.We spent the night here last night and she went up for surgery at 7:00.She was given the “goofy juice” and finally succumbed to its powers at about 7:30.She was out of surgery by 10:15 and we were allowed in the PICU by 10:30.That was a bit rough.It is hard to see someone you love struggling- it’s not fun to recover from anesthesia and intubation.By 11:15 we were allowed out of the PICU and back down to her room.This ride did not help my poor girl’s nausea one bit.She tried to fight it off- refusing to surrender, until finally…hours later we convinced her that she would feel better if she just “let it all out”, so to speak.She was still a tad reluctant, but after I sat her up…it was all over.The combination of the drugs and all of the blood she swallowed in her stomach needed to come out.She was quite frightened to see all of that blood, but true to Nina form, didn’t panic.She just calmly asks questions as these new and unusual things are happening to her and around her, and then in turn is satisfied with my responses.We’ve come a long way…those of you who followed our journey to Nina Hope realize the significance of this level of trust.Afterward she did feel much, much better and only had one more wave of nausea.By mid-afternoon she was sitting up writing in a sticker book she brought and drinking some apple juice.
I cannot neglect to share that slightly after 1:00 she looked up at the clock and said, “Mom, dad, you should get something to eat.You must be hungry.”WHAT??? I was floored that my daughter who lives for food, that was now on a “clear liquids only” diet, was concerned about our dietary needs.Dave shocked her by informing her that he too was going to follow her diet today.She was perplexed as to why he wanted to do this, but I think by doing so he won another piece of her heart.
This has been an amazing opportunity to bond with Nina.She is reaching out to us for reassurance and wanting to hold my hand as she falls asleep, or when the pain increases.We have been able to take advantage of a lot of quiet closeness, a lot of gentle touching and comforting.In that respect, I can see the goodness and the gift in this whole experience.Yes, it stinks that my daughter has to go through all of this…it doesn’t seem fair that this is the path her journey is taking.But, as always- God uses everything for good.No pain or suffering is wasted.He is taking these circumstances to build up our relationship with each other in the quiet surround of a hospital room.(Quite a contrast to our crazy home…)He is helping us continue to build the bond of trust and reliance.She has also learned how many people care for her and love her.She was surprised at the prayers of support that kept flowing her way.She continues to ask, “Why does everyone want to pray for me, mama?”I respond with, “Because they love you, Nina.They care about what happens to you.”To which she questions, “Really????”“Really, sweetheart.Really and truly.There are many, many people who love you and want good things for you.”She just looks at me still somewhat puzzled and tries to drink that all in.Quite a change from the circumstances surrounding her previous surgeries in China, I’m afraid.
She is also trying to process the fact that everyone keeps telling her how beautiful she is.She keeps asking me, “Why they say that to me?”When I tell her it is because she truly is beautiful, she looks deep into my eyes to check whether I really mean what I am saying or not.“Oh, Nina.You are so beautiful inside and out,” my eyes speak back to her.
Well, it is time to make my chair into a bed…Nina is getting a bit restless as her pain meds have worn off and we still have another hour until they re-dose.Time to cuddle and sing her to sleep- per her request, although she is looking forward to the effect of the medication…she does not want to be awake for the administration part.It is quite uncomfortable.Thank you everyone for your prayers and support.You have no idea how much it allmeans to this dear little girl.