Pre-Cath Day

Maddie loved the balloon and giraffe stuffed toy she received today from her heart buddy Teagan and her sweet family...very fitting since we're on the giraffe floor!

Sucking her thumb...a new favorite!

Feet are so fun to kick!

Cords keep me preoccupied too!

Maddie had an echo this morning and consent forms have been signed for tomorrow's cath procedure. She's the first case, 7:30 am with our fave, Dr. Jones. Anesthesia team will be in to take her around 7 am. She's had a pretty good day, just not too energetic about feeding orally. I've been having to gavage more through her NG tube than she can take orally, which is a disappointment after having months of good feeding. This has slowly been coming on, just proves that she needs some "fixing" in order to eat well again. Apparently with oxygen deprived babies, they give up some of the easiest things first, for Maddie, this is her feeding. Also, when you lack oxygen, you feel really crummy, so eating is the last thing you feel like doing. She's also been working a lot harder (her breathing)and I see more signs of her being uncomfortable and irritable, but do you blame her? Being in a hospital with a nose tube, cannula, 3 chest leads and a pulse oximeter attached is not so fun. I'm relieved we're here in the hospital though and just hope that we timed this about right...staying at home any longer may have presented a very scary experience. She's been weaned down to .5 liters of oxygen and they just want to leave her at that to keep her comfortable. She's been a real trooper, still smiling now and then and she's been kicking up a storm, which is so cute.

The plan for tomorrow's cath is to see whether they can buy her some more time before the Glenn by ballooning or stenting her shunt or pulmonary artery open. From the echo, it appears that the pulmonary artery they attach for the Glenn looks like it's on the small side. The doctors' words were "we're disappointed it didn't grow more". Since arriving at Children's on Saturday night, we've also learned that she has collateral arteries which could have attributed to this problem. The problem with collaterals as I understand it, is they steal the blood supply that should go to the pulmonary artery. It was Maddie's natural way in utero to help compensate for her closed pulmonary valve: the blood created its own way to try to get to the lungs. Complicated to understand, but to sum it up, the ones Maddie has are not good to have. So if her pulmonary artery looks like it's adequate size for the Glenn, I believe they'll just go ahead and do the surgery soon. So in the cath, they'll be able to get a close look at what her shunt looks like, get better pictures of her pulmonary artery as well as measure the pressures in the heart. We'll know after her cath what the plan is. So they'll have to make a "game time decision" tomorrow during the cath. On a lighter note, she had a good weight gain since being admitted...up to 5.41 kilos (12 lbs.) so she's hit the minimum although I've been told the bigger, the better for the surgery. We spent lots of time playing today...she loves grabbing anything now and tries to mouth it.

After hearing today's news from her echo, I'm stressed. Hearing that her pulmonary artery may be too small is scary. When I look at Maddie and reflect on what a great 4months she's had, I'm in disbelief of her complex heart. But when the doctors talk to us about it, reality hits. Of course they LOVE talking about the complexity of these babies hearts, it intrigues them, drives them, it's their passion. But it's my baby that has this problem. I've learned that her journey is only getting more difficult for me as she gets older. She is such a beautiful little soul and I can't imagine life without her in it. When they have you sign consent forms, they rattle off all of the risks: stroke, bleeding, blood clots, death, after that word, I just hear "blah, blah, blah." It's tough to hear when we don't have any options for our daughter. Again, I find myself in a dichotomy: I want my daughter to live yet in order for her to do that, she has to endure pain and suffering which I don't want to inflict on her. So I pray tonight that I will feel His presence more and I'll be able to renew my faith in the Lord's plan for Maddie. Again, I have to hand her over.

Please pray for a safe and successful cath for her tomorrow and that the doctors will be able to make the best decisions for our daughter's heart's future. Pray that Maddie will do wonderful through her cath procedure and will be able to come off of the ventilator right away. And please pray that we will have the strength to endure the day and what it will bring.