Friday, March 28, 2008
Wednesday, March 26, 2008
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!
Tuesday, March 25, 2008
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!
Friday, March 21, 2008
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!
Wednesday, March 19, 2008
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!
Tuesday, March 18, 2008
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!
Monday, March 17, 2008
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!
Saturday, March 15, 2008
Well, we started off doing fairly well after the angioplasty. The procedure itself went well, only taking 4 hours this time! Dr. Butto only had to balloon 2 of her vessels because the first angio did a better job than he expcted, so that was a plus!
He then suprised us with the news that it was time for her VSD to be closed, in about a month!! That was a shock. I wasn't execting to hear that her next open heart would be that soon! Then he said that she would probably be able to go home that night! Another unexpected turn, but in a good direction. He said everything went so well, and she looked so good that she would be okay. So that evening we headed home.
We had trouble with her sats on the way home, which worried me a little, but she stabilized and was doing well by the time we arrived home. She needed about 2 liters of O2, but was sitting in the high 70's to low 80's. Then the fun began!
Around 2:15 AM, her sat monitor alarmed, and she was down in the 60's. Over the course of the next 15 minutes, I had her on 8 lpm and she was still in the 60's. So after a call to the cardiologist, we decided to take her to the ER. Once there, they of course had to start an IV, draw blood, etc. I was so scared, because the last time we were in a similar situation Vaeh ended up on a helicopter to Toledo. This time it was in an ambulance instead, but we were on our way back up north! It was again pneumonia like the last time, but not as severe. At least this time we weren't intubated.
So we've been in Toledo since early Friday morning, and it looks like we're here until Monday for IV antibiotics. She is doing much better today, with better oxygen saturations, and a slightly better chest x-ray. Now its just getting well enough to go back home. We'll find out at our April appointment with Dr. Butto when they may possibly do another open heart after he speaks with Dr. Bove. So much in our future, so much that's uncertain. But we know for certain that God is in control, and taking care of all of us every step of the way!
Tuesday, March 11, 2008
Today we went up to Toledo for Vaeh's pre - op testing. We had to go to the hospital for standard tests (blood work - yeah!, chest x-ray, etc.). Of course, there was already a bad taste so to speak in our mouths from the last experience at this hospital. I tried to go into it with an open mind. Thankfully, Daddy was able to go with me (he tends to level me out in these type situations!). The first lady that took her information started us off on the wrong foot. She asked for the insurance card, and when Jon gave it to her, she said "this is the prescription." It took a couple of times to convince her that this card covers everything. Then the redundant questions begin, so much fun! We finally got done with, and then on to the lab for blood work. This was the biggest source of stress about the day for me. The last time here, there were two girls that tried on her, and dug on her. So I left Daddy to handle this and removed myself from a major source of stress. Amazingly enough they were able to get the draw off of her wrist. I was quite supprised, as last time they had to wait until she was under anesthesia. From there we went to have the chest x-ray done, and that was fairly easy. Then we met quickly with the anesthesiologist. All in all, not too bad so far. We'll see how Thursday goes.
We then went across town to Dr. Butto's office. She did fairly well there. Although the nurse couldn't seem to get a blood pressure reading. The cuff kept inflating, and by the third time without a reading and almost black fingers I asked that we try again in a little bit. From there we went to the echo room, where she did fairly well. They didn't have to give her any sedation, which was suprising considering she wasn't very cooperative usually. Dr. Butto then came in and said she looks good. He said everything looks good for her cath on Thursday. We did ask him about the sites he would use, and he said he will try to go in through the femoral veins, but most likely will have to go subclavian. He also said he would check the left leg, which he hasn't passed a line in for some time because he feels it may be blocked, but he was willing to try to see what we have.
Jon also asked about her formula and if we could possibly change it. Dr. Butto was suprised to hear that we still had her on Pregestimil. He said that usually they are only on this for about 2 months. Boy was he suprised when we told him it had been well over a year for Vaeh! We got the okay to change her to a regular formula for older babies. He even said she was a little over weight for her length and age! Ha! It wasn't that long ago they were pumping her full of calories so that she would gain weight! It seemed almost over night she caught up and surpased her goal! Now she's a chubby little bubby!
I'm just thankful that in a few days, this procedure will be behind us and we can move on! Who knows when the next one will be, but I'm hoping we get more than 6 months between this one and the next. One can only hope! I'll update as I can after her cath on Thursday - thanks for checking in on us! :0)
Monday, March 10, 2008
Well, we've begun the waiting game for the week. Hurry up and wait for the pre op appointment, hurry up and wait for Thursday. I just wish it were Friday evening, then it would all be over and we'd be home! Oh well. Today was another PT session, and the little stinker basically screamed through the whole thing! I've also figured something out. She will make herself gag now when she's upset. Today with Barb, she started getting worked up as soon as there was a knock on the door. At times she was screaming so hard, she was almost purple. She'd get so upset that she would start to gag and then the little hand would go up to the mouth and - gag! I think its becoming more of an attention thing, or a way to get out of doing something she doesn't want to. What an independent little spirit! Oh well, I guess you could say she gets it honest (from her Daddy!). Please keep us in your prayers this week as we go through this next heart cath! Thank you all!
Friday, March 7, 2008
Late yesterday afternoon Nevaeh did something she hadn't done before. She was done with her bolus feed, so I put her in her walker. I was shampooing a section of the carpet, so I figured this would keep her occupied and happy. Prior to today, she was only able to go backward in it, so I put her up against the one couch so she could see the veggie tales on TV. Before I knew it she had herself over in the entryway by the front door. She had moved herself forward before, but not that far! It was about 10ft. I moved her back over in front of the couch. Then she started across the living room. By the time she was done, she had 'walked' herself out into the kitchen, about 25 ft. I was so excited - she's finally somewhat mobile on her own. Now the only problem will be keeping her in one spot for her bolus feedings! Oh well, its just nice to see her finally making some headway in the right direction! I'm sure she'll be walking before we know it, probably before she crawls (she doesn't want anything to do with being on her hands and knees in a crawling position).
Thursday, March 6, 2008
Today was occupational therapy. Nevaeh usually cries through both PT and OT, but more so through OT. Michelle brought things to work on more fine motor activites, since PT & OT are starting to overlap. She had Nevaeh placing discs into a slot (ie: piggy bank), as well as taking things off and putting them on a stick. Basically she had to use both hands to complete the tasks. She did much better than either of us thought she would. She did everything with both hands, but tended to use the right hand more. Michelle said that she would test her to see where she is developementally in two weeks. Next week is the dreaded angioplasty, so we won't be having therapies then! I'm just glad that she's really starting to catch up with developement. Once we're able to go longer than 6 months without a major procedure, then we'll really make some major progress. That and once the G-tube can come out! Look out then!
Tuesday, March 4, 2008
Nevaeh had a much better night last night. She has been needing the oxygen again at night when she falls into a deep sleep. Her sats are supposed to stay between 70 to 90% (since the VSD is still open she is allowed to be so low). She hadn't needed the oxygen since about two weeks after the first angioplasty back in November. It was so nice to see her without all of the tubes connected to her! About three weeks ago, she had a fairly nasty cough. We went to the pediatrician, and had a chest x-ray just to be sure. Despite the x-ray being clear, she's continued with this cough since. She's also had a runny nose, which could be the cutting teeth thing! About a week and a half ago she started looking pretty dusky again. When we checked her sats, sure enough - dropping into the 60's. We've been using it fairly consistently since then, at times up to 1.5 lpm. With the pending angioplasty it hasn't been suprising that she's needed it.
Last night, though she was getting too high. She was in the low 90's at one point, and she's not supposed to be that high if she has the oxygen on. So I turned it off about 3:30 AM. I got up about 7:45 (taking advantage of sleeping in for a change!). She was holding her own in the mid 80's on room air! Hopefully we stay off it for a while. The less tubes the better!
Monday, March 3, 2008
Today was Nevaeh's PT session. We had a pretty good session as they go. Vaeh was actually able to cruise along a bolster today, something that she's never done! She was actually moving her feet along without anyone prompting her. I was so excited! Then it hit me, we're in trouble when she becomes mobile! Believe it or not, I can't wait!
We also worked on crawling. She doesn't really like going up on her hands and knees, but she will do an army-like crawl. Barb (the therapist) has to put her hands at Vaeh's feet, and gives her something to push off of. She struggles with it, but is improving day by day!
Speech therapy is tomorrow, and then Occupational therapy on Thursday. Our weeks are filled with therapy sessions, and the occasional doctors visit snuck in here or there!
Next week will be a little hectic due to the angioplasty on Thursday, March 13th. They are again going to balloon her pulmonary arteries in hopes to equalize the pressure inside her heart. Once that happens, then we will talk about the next open heart. Not something I'm looking forward to, but a necessary evil.
Nevaeh Kaylene was born on September 17, 2006. The next morning we were told she had a murmur. By that evening we were told she had Tetralogy of Fallot, and would require open heart surgery to repair the defect. She was transfered to Toldeo Children's Hospital and would undergo her first of many procedures at 4 days old.
With the first heart catheterization, we were told it would take several surgeries to correct her defect. Our journey had begun. Who knew where it would take us.
At 2 and a half months old, Nevaeh had her first corrective open heart surgery. Almost 8 months later, she would have a second open heart. Along the way, there were many heart catheterizations, including angioplasty of the pulmonary arteries. We are still waiting for the complete repair, as her VSD remains open.
In addition to all of the problems with the heart, Nevaeh has also experienced developemental delay due to multiple hospitalizations. She also is currently fed through a tube in her belly, as she forgot how to swallow.
Through all of this in her short life, she remains a source of joy for us every day. She is a normal, happy, "healthy" little girl if you look beyond all that she has been through. She will always be our reflection of heaven!