It's much nicer to be in a tunnel and see the light on the other side, than to be in a tunnel so far from the other side that you see no light at all. Darkness is good for some things, but after awhile we all need light.
Grace will have heart surgery within a week. The doctors all agree her defect is very "garden variety" and should be a routine repair. They have every expectation she will have a complete recovery and at the time they close her chest she will have normal 95-100% oxygen saturation for the first time in her entire life. Amazing. No more bluish toes and fingers and lips. No more tet spells every day where she is agitated and sleepy and wants to lay on her side. They don't last long, maybe a minute or two but they aren't pleasant and they obviously bother her. How would you feel if suddenly you felt "wrong", had a harder time breathing, scared, and you couldn't explain it to anyone?
We don't know how long she will be in the hospital but they told us to expect 4-7 days. I'm preparing for 7 because they will also be evaluating and possibly treating her tracheomalcia. The ENT will scope her trachea during heart surgery and decide whether or not a small suture will be used to keep her trachea open. We have also learned from the ENT and the GI specialists that the stenosis (narrowing) in her esophagus is minor and can be treated easily with dilation and will be done a few months after surgery or whenever the cardiologist says it's time. The tracheomalacia and esophageal stenosis ARE a result of her atresia repair that she had done in her province when she was 3 weeks old.
There will be a team of doctors surrounding Grace during her surgery. Everyone so far has been extremely hopeful and has assured us that they are confident she will be yet another success story. I hope I get the chance to tell them that she already is. The more I learn about her condition at birth and in the months after the more I am convinced she is a living, breathing, bluish little miracle.
Following her discharge from Children's hospital, we will continue to lay low with her, and keep her as germ-free as possible for a couple of weeks per doctor's orders. After that, she should be able to gradually enter the real world little by little. I am positive she misses playing with small children. We are doing our best to play with her a lot and be silly but we all tower over her. When she has seen children at the doctors office she is mesmerized and smiles and waves. If only I could fly some of her friends from New Day for a visit...
So for a little less than one more week, we will have tet spells, and a sometimes smurfy little madame blueberry from time to time. Healing comes in lots of different ways. Please pray that as we prepare for her healing via surgery that we are healthy, rested, and keeping our eyes fixed on The Healer. She has always been His and I believe that He has Grace in the palm of His healing hands.
So what can you do?
You can pray like crazy for us that we all remain healthy - especially Grace and I. I'm her person. I'm the one she goes to first for comfort and I am doing all I can to be rested and stay well. It is typical for me to get sick when I'm exhausted (check) and stressed (check). I can't even bear the thought of getting sick and not being allowed to be with her in the ICU. This is the first trip to a hospital that she will have a real mama - and wild horses couldn't drag me from her side while she's there. The end.
We have so appreciated the continuing meals since we've been back from China. I could tell you 1000 different ways it has blessed our family and it wouldn't cover it, really. So many generous and kind people who took something that probably seems little off our minds - several people more than once. When you're going through a crazy time - whether it's wonderful and exciting - crazy, or scary and stressful - crazy (or all of the above, ahem) having the seemingly small burdens carried by loving people is sometimes the most helpful.
What else could you do? If your kids are friends with our kids, (specifically the two sandwiching Grace in the photo below) if your family or your kids are doing something fun and have room for two more - take them with you. Last summer was kind of lame for them. We got our house ready to sell. We sold our house. We packed. We moved. My mama's heart is heavy for our older kids who selflessly and lovingly have had so much change in the past year and a half, and have adapted so well to a life that is all about Grace at the moment. I so want then to have a fun summer. They are processing loving their new sister like crazy and anticipating a very scary surgery for her and recovery and it's heavy stuff. They have been through a lot these last 6 weeks and there is a lot to come. It's heavy for adults - it's really heavy for teenagers and almost teenagers. Pray for them to have a heavy duty faith that covers all.
Is that not the sweetest picture? My heart just bursts seeing the three of them...so much love.
Thank you for keeping us in your prayers this week. We know who goes before us, and we are so grateful He's already at the end of the tunnel.
There is no light like Jesus.
1 comment:
Praying for all of you.
Especially praying for the "big kids".
It's hard to be in those 'teen years'; where "everybody expects" you n.o.t. to act like the kid you really are, but even the other 'adults' aren't sure what you are supposed to do.
Love your photo of the kids... they are so smooched together... :-)
Barbara Lyman
WA state
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