Surgery Date

Today I received an unexpected phone call. The University of Michigan Cardiac Surgery Department called with the date for Nevaeh's third open heart surgery. I wasn't expecting to hear from them so soon, because we were told that Dr. Bove was out of town until the end of the month! They have her scheduled for May 7th, which is a Wednesday. We will have to have her up there the day before for her pre-op testing. They usually do a sedated echo, EKG, chest x-ray, as well as any needed blood work. We will also meet with the anesthesia department, as well as cardiology. Since this isn't the first time we've had to go through this, we won't need the tour of the unit. Unfortunately we're pretty familiar with it, as they are with Nevaeh! Hopefully this will be the last major procedure she will need for a while. I've looked back, and the poor thing has not gone longer than 4 months without something major! Between all of the heart catheterizations, the first 2 open hearts, and the PEG tube placement, she literally hasn't gone more than 4 months without some type of surgical procedure. This should take care of things for at least a couple of years I hope!

Now the fun part begins. The getting ready to head up north. We'll have to line something up for Gabby because I'll have to stay with her in Ann Arbor. During the last admission a couple of weeks ago, if I got more than 5 feet away from her crib, she started to cry. It even lasted for a day or two at home! There is no way that I'll be able to leave her if she is consious without her getting worked up! I'm really hoping this time that she is able to get off the ventilator much quicker than her previous surgeries. The first one she was on it for 10 days, and after extubating her they had to re-intubate for another 4 days because she did so poorly. The second surgery she was again on the vent for 10 days, but once she came off of it, she did well. Hopefully this time whe only need to be intubated for less than a week! Then maybe she could come home in a couple of weeks, instead of taking a detour through Toledo! I guess the fact that its been so long since the last major surgery, and she is so much bigger & stronger gives me hope that she'll do better. I guess we'll just have to wait & see how things go with the surgery itself, and go from there!

Having Fun!

Today was such a wonderful day here! We had to go out for an appointment, and the sun was actually shining for a change, so it was a good day to have to go out. When we got home, Vaeh had her physical therapy appointment. She usually screams through the whole session from the time that Barb knocks on the door. Today, however, she was a happy & jovial little girl! She smiled the whole time that Barb was here, and actually showed some improvement with things. She started to move herself backward while on her belly, which was a big accomplishment! Barb said it was pre-crawling! And we were beginning to think that she would never crawl, but go straight to walking! She also did much better with cruising along the bolster! Barb said she only needed a hand for safety, & that she was basically doing it herself. I can't believe she did so well, especially after being in the hospital. I figured she would be more cranky than usual. Guess thats what I get for thinking ahead!

We're still waiting to hear about a surgery date, but I don't think we'll here anything for a couple of weeks yet. Dr. Bove is scheduled to be out of town until next week, so it will be at least the second week of April before we here anything. So we'll just go on with the status quo here until we hear anything new!

Please keep a couple of our 'friends' in your prayers. As I mentioned in a post earlier today, Edgar has passed away. Please keep his family lifted up in prayer as they go through this rough time. Also would you keep Emma in your prayers! She is supposed to have an open heart surgery which was scheduled for this Friday, but has again been postponed. She has had some little speed bumps with colds, etc., and she has been rescheduled for sometime in April. Hopefully she will remain healthy and will be able to have the surgery on the next scheduled date, and will have a speedy recovery!

Thanks for continuing to check in on us! We appreciate it!

Sad news :(

I've been on a support group online for families affected by tetralogy of fallot. In checking the message board this morning, there was a post from a woman who's nephew was born with tetralogy. His name is Edgar, and I'm not sure how old he was, but he had not yet had any surgery to correct his defect. He had "extreme TOF with pulmonary atresia," which is very similar to what Nevaeh has. He had been doing fairly well, but today she posted that he has passed away. He wasn't able to have surgery in time. They live in Zambia, I believe. Please keep Edgar's family in your prayers through this rough time in their lives. I can't imagine what its like to loose a child. I know I have had nightmares about such a thing, and it saddens me to know that people have to go through such terrible times. Again please keep Edgar's family in your prayers!

Just hangin' out!

Things have been going well for the last week. Nevaeh came home one week ago, today and has been doing very well. She hasn't needed the oxygen since last Thursday, but only for 15 minutes or so. Seems to be when she is in a deep sleep is the only time her sats tend to lower, and if she changes position it goes right back up to where she is supposed to be. Last night she stayed in the high 80's all night long! It seems our biggest challenge right now is getting used to new bowel habbits, LOL! Since changing her formula she has been doing wonderful with not throwing up/ refluxing hardly at all. But her bowels aren't used to having to work this hard. I know, not the best subject... but when you have little one, it tends to come up in conversations more easily!

Well, other than that, we're just hangin' out around the house waiting to go back to see Dr. Butto. Hopefully by then we'll know something about the final repair & how long it may be until they decide to schedule her for surgery. Her next appointment with Dr. Butto is in about two and a half weeks, so its just a waiting game again. That, and we're back to getting used to Mommy leaving the room for a few minutes. Since coming home from the hospital she's had some major separation anxiety again, but no wonder! It always seems to happen after something big, and after being in the hospital its no wonder that she's picked up that habbit. When she was in the hospital I couldn't walk more than 5 feet away from her crib without her crying. So I got used to waiting until she fell asleep! Time to retrain her that its okay for Mommy to walk away from her for a short time. Oh, the joys of kids!

Eating!

Boy, this yogurt is yummy!

While in the hospital earlier this week, Vaeh decided she wanted to taste some things. The nurses gave us some baby food, and she actually took a few 'tastes' from the back of a spoon. Tonight at dinner, Mawmaw brought some vanilla yogurt to try, and she actually took some of it! You have to get it in just the right spot on her tongue or it triggers a gag, but if you're careful... We may be seeing the light at the end of the tunnel.

She is doing so much better over all with eating (tube feeding) since we changed her formula while she was in the hospital. She hasn't been spitting up (vomiting) as much, so maybe the pregestimil was causing the problems instead of helping. We had questioned last year when they put her on it in the hospital that it didn't seem to make a difference and the only reason she had so much trouble in the first place was because of the NG tube. But what did we know, we're just her parents! Dr. Butto last week was suprised that she was still on the pregestimil at that point. He said that kids are usually on that formula for about 2 months, and Vaeh was on it for 13 months! Oh well, at least we're moving in the right direction. Maybe by her second birthday she'll actually eat a piece of cake! What a picture that will make!

HOME, finally!

We've finally made it home, and Vaeh was absolutely extactic! When we left the hospital, she was almost jumping out of her car seat. Its as if she knew that we were headed home. The look on her face said 'okay Mom, lets go I'm ready to go!' When we got home she was absolutely jovial when we sat her on the floor. She never looked so happy! We both had a very good night's sleep, too. My bed never felt so good. Now comes the part that isn't so fun! Dr. Butto will speak with Dr. Bove sometime in the first part of April about when Nevaeh's next open heart will be. The day of her cath, Dr. Butto said she should be repaired in the next month, but since Dr. Bove is out of town he'll have to wait until he is back to talk to him about it. The impression I got from Dr. Butto is that its not an emergency that the VSD be closed in the next few weeks, but the sooner it is done, the better. He (Dr. Butto) said that the pressure in the lower branch of her pulmonary arteries (one on either side) is too high and leaving it that high will cause damage to the lungs. He said that closing the VSD will decrease this pressure. So, I'm guessing that by the end of April or sometime in May we'll be going back to Ann Arbor for her final repair. What a gammet of emotions! Oh well, we'll take it just one day at a time! God has brought us this far, He certainly won't let us down now!

We're Going Home!

Finally - we're getting out of here! Dr. Butto just came in and said that her chest x-ray looked "much better" and that her breath sounds had improved since yesterday. Of course she'll be on an antibiotic for another 10 days, and follow up as needed with the pediatrician. We're just glad to be able to sleep in our own beds tonight!


I'm going home!

Maybe home today?!?

I'm feeling so much better!



Big sis here for a visit! Lucky, she gets a happy meal!




Sleeping peacefully!

We're still here in Toledo Children's waiting for those magic words - you can go home! They had thought that she would be able to go yesterday, but after seeing her chest x-ray felt she needed to stay for another day of IV antibiotics. Today she seems so much better, less wheezy sounding. She is acting like herself more, playing, etc. But we are both getting anxious to go home. It will be nice for Nevaeh to be back in her familiar surroundings, and she can really beging to heal up. The pulmonolgist was in a little while ago and said she looks good, but is still diminished (breath sounds) in the left. I haven't heard what her chest x-ray from this morning looked like, but overall she looks much better. Dr. Butto is in the cath lab all day, and will be in this afternoon to see her. Hopefully he will have good news for us, like 'you can go home!' I think once she is home and in her chair, she'll do much better!

Still waiting...

We're still here in the hospital, waiting to find out if today will be the day that Vaeh gets to come home. She is still on oxygen, at 1/2 a liter & doing quite well. At times we have been able to take it off for a few minutes, but she still needs that whif for the most part. They were just in to draw morning lab work, and got it on the first try! They have really done a wonderful job with the pokes here! Of course she fussed, but not much and its over relatively quickly. We're going to go down for a chest x-ray around 8AM. Dr. Butto wanted it done upright in radiology today to get a clearer picture. She is still very white on the film, meaning that her lungs are still full of stuff, but continues to show improvement daily!

She loves to play with the stethoscope, maybe preparing for her career! She was so playful & almost back to normal last night. Hopefully everything goes well with her labs & x-ray so that we can go home!