Miracles are everywhere in the world of CHD's. Here are a few more of them.
Kennedy Mae
This little beauty was born on October 14th. She had been diagnosed in utero with HLHS (Hypoplastic Left Heart Syndrome). When she was born, however, the doctors discovered she also had Anomalous Pulmonary Venous Return (APVR). These 2 defects are almost never found together. Kennedy was on ECMO after surgery but developed clots and brain bleeds so they took her off. For a while she was doing well and then she crashed. They put her back on ECMO for several more days. When they took her off the next time she did great. She has fought many battles to be here but she is winning every one. She is an incredible little girl. Please pray she continues to gain strength so she can go home to Alaska for a few months with her mommy and daddy before she needs her Glenn.
Gabby has a NEW HEART!!!! This girl is busy shocking all the docs and nurses at Seattle Children's by moving out of the CICU 6 days post transplant. This, I believe, is a record. Please pray for continued success with her perfectly formed heart.
Ella had her Glenn back in October. She did fine initially but then, 2 weeks ago, she had a stroke. She was not moving one side of her body and doctors thought she was having seizures. As it turns out, she is now home and walking again! Yay Ella! Please pray this is a one time hurdle in her life.
This is Joel and his beautiful mama Kari. Joel is now spending ALL WAKING HOURS off the vent. I know he has been sick lately so that may be different for the time being, but this is amazing news! He is such a superstar! Please pray he is feeling better.
Tristan Drake
This handsome little guy is now known as T3 when his mom and I are discussing our 3 T's. :)
He is another one with HLHS. He had a relatively new surgery called the Hybrid, rather than the Norwood for his first stage. He is doing well, but he had to have another surgery last week to open up his PA. It was blocked by a clot, despite the fact that he is on Lovenox (a blood thinner) constantly. He is home now and doing well, but they are waiting to find out why he was able to form such a big clot while on the thinners. Please pray that they find a solution to this problem.
Ethan!!! This awesome kid is another big inspiration for T. He has HLHS and has been through a lot of the oral aversion and GI issues like Tiernan. These days, however, he is eating like a champ. He probably has the best laugh EVER and such a great spirit. He will have his Fontan in the next few years.
Tiernan is doing A LOT of this these days.
We had a GI visit yesterday and last night he had two major triumphs:
1. He slept all. night. long. Did not wake up until 6:15.
2. He tolerated being fed Vital Jr. (like Pediasure) directly into his tummy instead of his Jejunum)
Dr. P, Jessica (his dietitian) and we are all very excited by these changes. As of today, all food will go in his tummy, either by tube or the old fashioned way. We have him eat 4 times a day and then follow that up with a "bolus" of Vital Jr. through his G Tube. (GT) A bolus is done more quickly than the continuous feeds. He gets 45 mLs in about 5-10 minutes in order to get his stomach used to stretching and contracting. Our goal is to get him up to 60 mLs in the next month.
Foods Tiernan eats:
Cheerios, yogurt, yogurt melts, Veggie Pirate Booty, string cheese, chicken (usually with mexican flavors), dried apples, avocado, sweet potato chunks, peas, soft pasta, fresh pear, pumpkin muffins. He tries many things, but these are the most successful. He is pretty much boycotting "baby food". He wants what we have and his dietitian tells us to let him have it. Even pizza. What a lucky kid. lol I'm quite sure he will love Thanksgiving dinner tomorrow.
He is also not too interested in us feeding him anymore. There is that independent streak again.
Continuous feeds will be happening for only 9 hours overnight through the GT at 60mLs per hour. I was a little nervous last night as he has never gotten that much continually before. He obviously handled it just fine. In fact, I am left wondering if he slept so well because he had that full tummy feeling. We'll see what future nights bring. If he continues to do well with the G feeds over the next week, then we will go in to the clinic and they will pull out the GJ tube. INTENTIONALLY for once. And for good. He won't be tube free of course. They will replace it with a plain old G Tube. This is such a relief for Jason and me.
This means if he pulls it out, we just pop it back in.
No more late night frantic calls to the on call doc.
No more all day adventures in Interventional Radiology.
No more searching for decent veins for IV sedation.
No more calls from Nanny K that J needs to get sub coverage and come back.
Just the report that his tube came out. I put it back in.
All is good.
T knows most of his body parts, including his belly button. :) He holds his nose and giggles if we say "Stinky". (Nanny K taught him that one. Cracks me up!) He now consistently signs "Eat", "Drink", "More", "Please", "All done" and "Down". He doesn't have any words yet, but his OT is sure those are soon to arrive now that he isn't totally focused on the walking thing.
And then there is this.
This is 3 stairs from the top. (There are a total of 14) He had never done this before. He climbed them like they were nothing. We are in big trouble with this kid. He climbs on everything, and seems to fear nothing.
I see a "Crib tent" in our future. :)
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