Been a LONG time.

I forgot my password, that's how long it's been.  Thank goodness for the ability to reset.

I guess it's a good sign that I haven't updated this blog in forever (apologies if anyone is still reading or occasionally checking in) - Laura's health has been pretty stable cardiac-wise.  She did have to have a stent placed in her new conduit a year after the surgery to replace the conduit. 

Laura has undergone a few other surgeries related to other birth anomalies.  We were unable to find a doctor to repair her limb deficiency - tibial hemimelia -  so at the age of 3 1/2 she had a thru-the-knee dis-articulation.  It didn't take long for her to get accustomed to using her prosthetic as she had been wearing a modified version with her deficient limb.  Last summer she had corrective surgery on her left foot, the same surgery she had at 13 months old, we are hoping it works this time - only time will tell though.

Laura will be entering first grade in a few weeks, my how time flies.

For her sixth birthday Laura went to Disney World and celebrated with dinner at Cinderella's Royal table.

Conduit Replacement for Christmas

Not exactly like the song goes, Laura has her two front teeth, but she needed a new conduit for Christmas, and that's exactly what she got.

Back in October we went for Laura's semi-annual echo and her cardiologist said he thought it was time to talk about replacing her conduit. He scheduled a catherization for the last week of October just to be sure. The results were the same, recommending a conduit replacement before Laura showed signs that she was in distress.

We were able to wait until the new C.S. Mott Children's Hospital opened but waiting also meant we weren't scheduled for surgery until the week before Christmas, Monday December 19th. Dr. Bove was her surgeon again, and he said she did a marvelous job and that the surgery was uncomplicated and as easy as one could expect. It seemed like now time before it was over. The surgery started around 7:30 and by 1pm we were able to go back and see her. And she looked great, not puffy at all. She was extubated that night and alert, asking for water.

Tuesday we moved to the regular floor once a room opened up and it was very nice to have our own room with a beautiful view on the 11th floor. Laura continued to do well, eating, drinking and mostly carrying on like she'd had a hang nail removed. There were a few boughts of crying but nothing that was too extreme. Wednesday there was talk of removing her chest tubes but the drs. wanted her to move around a bit more just to make sure that all the drainage was out of her belly. The tubes were removed on Thursday, the echo looked good and so did the x-ray on Friday so we were sent packing just in time for Christmas.

The only meds Laura is taking is motrin and tylenol for pain management and she's not taking much of those either, she is such a strong little girl!


Here's a picture of Laura and our hero, Dr. Bove:

I'm a bad blogger

I haven't looked at this blog in FOREVER as evident by the last post saying "Laura's 15 month check up" !

I have been better at using her carepage to update friends on how Laura is doing, I'm not sure anyone even reads this blog or if they did they probably don't anymore given the above :) Understandable.

It's so hard as a working mom, to maintain a blog and a carepage and a house, the list goes on and on.

So a brief summary of the last 9 months -

Cardiac-wise:

Laura has had 2 appts. since the last post both were excellent as far as news goes. The one in November 2010 she had a sedated echo - the girl is not going to be a "happy" drunk - she did not like the feeling the medicine gave her and fought it for a good 15 minutes before finally giving in and going to sleep. So the next one in April 2011 they just gave her the lighter dose to relax her and allowed her to watch some videos while they did the echo. That went over much better, they even gave her a lollipop (her first!) but when the effects of the drug wore off she threw a huge tantrum - no doubt due to hunger, since we anticipated a sedated echo she wasn't allowed to eat after 6 am and it was now almost 3 pm when we finally saw her doctor. It wasn't pretty - lol.

Anyway, she's doing good, still has a little stenosis in her conduit, and a little leak in her VSD patch but nothing to warrant intervention. Her sat rate was 100% and we don't go back again until November.

Overall Health:

Laura has been in over all good health, only a few minor colds and a couple of ear infections. We did not have to do any breathing treatments over the winter, her pulmonologist felt Laura was stronger this year and didn't need any additional protection against the dreaded RSV, so no Synagis shot either.

Tibia Hemimelia

In February we took a trip down to Florida to visit Dr. Paley at the Paley Institute. I found him while looking for information regarding Laura CLD (Congential Limb Defect) and was so excited to think we had an alternative to amputating her right leg. I didn't want to get my hopes up, but read some very promising things on his website. It was a long trip to drive from MI to FL but we stopped and visited an old friend in S.C. and it was so great to see her again, then we stopped in Titusville and was able to see the last launch of the Space Shuttle Discovery. When we finally arrived in West Palm Beach it was late and our appointment the next day took up most of the day so we really didn't get to do any "touristy" stuff. We got dressed up and when downtown to the Cheesecake Factory for dinner and then to the beach the next day for about an hour before starting our way back home.

As for the appointment. . . well it was sorta middle of the road, the one thing I didn't expect. I was hoping for an excited "I can help you save her leg!" or "I'm sorry, there really isn't anything I can do." What we got was "well, it's one of the worst cases I've seen. I can fix it but you really need to weigh the cost - physically, emotionally, and financially. She will need to come here every 4 or 5 years for surgery and rehab, which could take up to 4 months each time. I don't know what your jobs are, so you need to evaluate if you are able to take that much time off, and you need to consider having to pull her out of school, and losing part of her childhood. Really she's no better off with her own limb versus a prosthetic. IF both of her legs were like this I would definitely recommend doing the reconstuction on one of them." Hmmmm. The good news is no decision is needed right.this.minute.

And then a funny thing happened in April. A friend of a friend met a new neighbor, who just happened to have a 13 yr. old daughter that was born missing her fibula, similar but slightly different than Laura, and he was so excited to hear about Laura that he insisted on getting my number and calling me. He recommended that we take Laura to the Rubin Institue in Baltimore to see Dr. Herzenberg - Dr. Paley's old partner. I never even thought to see if Dr. Paley had a partner when he was in Baltimore, when Laura's U of M ortho said that Dr. Paley had moved from Baltimore. Dr. Herzenberg is a former U of M dr. and this guy - Dave - who called me said, "please go to Baltimore, we've been going there for years, Dr. H is the best. Dr. Paley was there when we first started going and pardon my French - he's an asshole" lol.

So now we are thinking we might need to take a trip next spring to Baltimore . . . I would definitely be interested in Dr. Herzenberg's opinion. I guess it will depend on how we are financially, and how Laura is cardiac wise.

In the mean time, here's a few pics of her from the last 9 months. She just turned 2 last month, I can't believe how fast time flies:

15 month check up = 15 lbs.

Laura had her 15 month check up on Friday, we're a little behind as she will be 16 months next week but we were a month behind for her 1 year check up as well, so we're just following her dr.'s redesigned schedule.

Laura is doing very well and is an incredible 28 1/2" long! But with only 15 lbs. 2 oz. on her she's a little string bean. Shoot she's almost 1/2 my height - lol. I knew she was getting bigger looking at how long she is when I hold her. So hard to imagine those first few months and how small she was 15" long, she's almost doubled her height.

She's saying lots of things, not many that I can understand - lol - and will carry on conversations in her own Laura language. She's still not saying mama unless she's crying but if someone says "where's mama?" she looks right at me. She loves saying dogdog though and she's always trying to pet them.

She spent Friday night with Aunt Linda while mommy went scrapbooking and apparently they had a very fun "girl's night in" eating pizza and watching TV. Well, Laura didn't eat any pizza but she did have some garlic bread - thanks Aunt Linda for the stinky diapers I had to change on Saturday. lol

Next month we go to cardiology for a check up but until then more zoo visits and a trip to the cider mill are planned. Hope to post some more pics of those adventures.

So... from the beginning.

Every heart family has a story, and I must say from reading a lot of them we all have so very much in common. Although the diagnosis may be different and all alphabet soup, the feelings and emotions are the same. "What? My baby has what?" whether you find out at an ultrasound, or I think even worse after your baby is born, you are just overwhelmed by it all. But somehow faith gets you thru.

This is our story. March 12, 2009, my sister's birthday and the day of our "big" ultrasound. Even though we weren't finding out the sex, we were excited to see how our little one had grown. The appointment was late in the afternoon, so I didn't have to take too much time off of work. I was saving my sick leave and vacation for my maternity leave since we don't get paid maternity leave where I work.

The tech was chatty and everything seemed rather uneventful. Then the tech said she needed to step out and for me to lay on my side to see if we could get the baby to turn a bit. We only waited a few minutes before a dr. came in and said she was taking over as they were running behind and the tech needed to get started on another patient. Then she asked why I was laying on my side. I told her and she said "well roll back over and let me check the baby" and after what seemed to be 3 seconds of scanning she said "mm, mm" told me to wipe the gel off and as I sat up said "your baby has a heart defect - it's either Truncus Arteriosus or something else, but it's totally fixable. Can you come back tomorrow for more scanning? We are running behind and don't have time to do more scanning today" "What?? My baby has what?" I said "well I have a heart murmur, is it like that?" She said "No it's more serious than that but you shouldn't worry" and she patted me on the hand.

Fast forward, we decided follow up with pediatric cardiology at the University of Michigan the next month and transfer my care into their hands. They were so much more compassionate and caring than the hospital we were at in March. I'm so glad we made that move, as the original hospital had said they could continue to follow my case and would then turn us over to U of M at 32 weeks. We didn't make it to 32 weeks. At the beginning of May I was hospitalized for a kidney infection and then move into full blown pre-eclampsia. I was transferred up to U of M at 28 weeks 5 days and remained there on bedrest until Laura was born at 31 weeks. She weighed 3 lb. 1 oz. and was 15" long. And she was beautiful. And so small. And our doctors said they would work very hard to get her big enough to have heart surgery.

So we rode the NICU train for 7 weeks, watching and waiting for Laura to grow. We had some scares where she stopped breathing, sometimes for no reason at all but she was only vented for about 10 hours when she was first born. Finally she was showing signs that she was growing tired and she couldn't wait for her surgery any longer. On July 16, 2009 Dr. Bove took our baby to the operating room and performed the miracle we had so desperately waited for. He came to us and said the surgery was beyond his expectations and we could see Laura very soon. When the time finally came, we were stopped short by another dr. - Laura had too much pressure building in her chest and they were doing emergency surgery at her bedside to open her chest again to relieve the pressure. We didn't know it then but we almost lost our sweet baby as she was bleeding out.

After a few days, her swelling went down and her chest was closed, her vent was removed and only 3 weeks after surgery we were on our way home for the very first time. We weren't prepared! My husband, Craig had to rush home in the few days before discharge to paint the nursery and put together the crib and dresser. I bought the mattress the night before she came home. We had great hope that this day would come but were so fearful that it wouldn't and we couldn't face looking at a nursery with no baby in it, so we put off everything.

August 6th, Laura was finally home. No more nurses or beeping machines, just Mommy and Daddy and 2 furry siblings to watch her, and take care of her. And so far we have been very lucky. Laura has not had any major illnesses, in fact she only got her first ear infection a week before her first birthday. We can *almost* live a normal life. I know it's always in the back of my mind, wondering when the next surgery will be. She does have Truncus, one of the rarer CHD's, and she'll need probably 3 more surgeries as she grows but with new technologies being used every day we're hoping that maybe we can avoid a few full blow open heart surgeries.

A new cast for another week

Last Sunday I decided Laura needed a proper bubble bath instead of the sponge bath that we were told to do until the cast comes off. I had given her a bubble bath a few days before too, both times I carefully wrapped her cast up with a plastic bag and made sure there weren't any holes. But this time water got in :( I think I had too much water in the tub and after I took her out I found a hole in the bag. I wonder if her cast might have poked the bag, as she loves to kick her legs when she's in the tub.



So Daddy had to take Laura to the dr. on Tuesday, 2 days before our scheduled follow up and they said "yep, cast is too soggy, we need a new one." Laura did not like the saw - the noise was too much for her - and she turned bright red as fat tears rolled down her cheeks. She continued to cry all the way out the door even though this time she got a pretty purple cast. Dr. said her toe looked good, we were told it was going to be shorter than the rest and it was. Sometimes I wonder if we did the right thing, but if we hadn't she would never be able to wear a shoe on her foot.



On the word front, Laura does say Mama just not when she's awake. I had her laying next to me the other night watching TV when she started babbling in her sleep, it was like "blah, blah, blah, Mama, blah , blah blah." Plain as day - Mama. Stinker! During the day we say "say Mama" and she laughs and shakes her head no.

A new place to find out what Laura's up to . . .

I decided it was time to move over to a new forum for tracking Laura's progress, and while I can't promise that I will update this anymore frequently than I did the carepage, it will certainly be easier to add photos and videos of Laura here than it was on the carepage. I will still update the carepage too but this is where more of the everyday stories of what Laura is up to will appear.

Right now it's a work in progress, I have a few pics over on the side but I will replace that with a slide show as soon as I get one set up.

If we're friends on Facebook then you probably will see a lot of repeating in the pictures and videos, but I will probably bore more people over here with minutiae of Laura's days than I would on FB. Tonight we had quite the photo session, she was in such a good mood, giggling and stuff. We tried on the hat that Aunt Mary got her on the 4th of July, and I had her making silly faces. I was really trying to get a good shot of her cast and tiny toes hidden away. Here's a couple of shots:

Okay so she wasn't digging the hat at first but then she loved it :)