Thursday, August 27, 2009

Cardiology Update

Madi had a follow-up appointment with her cardiologist today. Here is a quick review to catch everyone up on Madi and the status of her heart:

Madi had open heart surgery on May 21st to repair a complete AV Canal defect. The surgery was much more complicated than they thought but they were able to repair her defect. Lots of prayers, some miracle working by Dr Woods, and a tough fighter for a daughter got us through! A few days after surgery the valves began to slightly leak (no big deal...this is common). They were only SLIGHTLY leaking so we were told they would just monitor the situation and there was a good chance that she would never need surgery again as long as there was not an increase in the leaking. She has had quite a few echo's done in the past 3 months and all looks great...until today! Today we received some good news and some bad (well, we'll just say not so good) news. The valve on the left side (the most concerning side) is now actually leaking less. This is great news because the left side of the heart is the side that pumps blood to the body. We obviously want that fully functioning! :) Looking at her echo today, the leak on the right side has gotten a little worse and her heart is actually enlarged now...something that we have not seen. There is a slight VSD on the right side that has started to leak more. It could CLOSE ON IT'S OWN (I am putting that in caps because I truly believe in positive thinking) but if it doesn't they will need to go back in and repair it. The surgery would be less involved than the first time as they would only need to go into the right side but it would still be open heart surgery with the bypass machine, ventilator, and chest tubes...the works. Her Dr did say that if she does need to have surgery, they probably wouldn't do it for at least another 6 months.

So here we are again. I am not freaking out yet. Actually I think it is odd that I am staying somewhat calm about this. Maybe it's because we knew there was a chance this would happen. Maybe it's because we've been through it (and although it was the worst day of my life) we know what to expect. Maybe it's because we truly are helpless in this situation and can't do anything to influence the outcome either way. Maybe it's because I have seen what my little girl is capable of and I know she will make it through with a smile on her face. Who knows! The fact of the matter is I am on my hands and knees praying that it will CLOSE. I am hopeful that it will and until I hear differently, I am hanging on to that glimmer of hope. So, I am asking to once again start the prayer chains for Miss Madi. I truly appreciate the support and prayers that are sent our way. They have helped us get to this place today and they will help us get through to tomorrow. So we have a follow-up scheduled for 2 months and they will do another echo to see how the leak looks. The appointment is actually scheduled for October 29th...Madi's 1st birthday. Maybe that will bring us some luck! :)

Wednesday, August 26, 2009

Our Angel

I am just so in love with this little girl!!! I feel so blessed that God trusted us to be the parents to such an amazing, "special" child. She has enriched our lives more than we could have imagined. The three of us have been through so much together already and we have come out stronger and more in love with one another. Thank you Madi for all that you have given us!!! We couldn't have asked for anything more.

Saturday, August 22, 2009

Summer Fun

Sorry to leave everybody hanging...Madi is doing much better! Her cardiologist bumped her lasix up to 3x a day and that did the trick. Within a few days she was breathing easier. I am so glad it didn't turn into a bigger issue. I have definitely learned that we still need to be germ freaks when it comes to Miss Madi. A typical cold to you and me is a lot worse for a heart baby with an underlying lung condition.

Madi now officially has 2 bottom teeth. They are both crooked and slant in opposite directions making an upside-down v! They are so cute...I will try and get a picture of them!

Madi has been a busy girl these past few weeks. She went swimming, took her first boat ride, floated on American Lake, went blackberry picking, and has gone on many walks and runs! We also went and spent the day with Aunt Sarah and cousin Mia. The girls actually play now and are constantly trying to poke, pull or suck on one another. Mia is scooting all over the place and Madi continues to steam roll across the room. It is pretty funny to watch them go. Madi did begin to "army crawl" a few days ago. It was very brief but she DID IT! I was not expecting it so it definitely surprised me. I swear this girl is going to scoot/crawl before she sits up on her own. I am so proud of her!

I do want to point out one thing that I absolutely LOVE about Madi that I often take for granted. She is such a cuddly little girl. When I pick her up she loves to just melt into me and literally wrap her arms around my neck and give me a huge hug. I know someday this may end so I am trying to make sure I appreciate every moment of it while I can. Oh how she melts my heart!!!Here are some pictures from a few weeks ago:

She is ready for the boat
Love the hair!
Madi with Aunty Amy
Floating on the lake
She LOVES the water

Sunday, August 16, 2009

Trip To The ER

Yes that is right...we spent yesterday in the ER with Miss Madi! She came down with her first cold last Monday and was getting much better as the week went on. She woke up Saturday morning and was having a hard time breathing...something that is not totally uncommon for Madi. She was diagnosed with chronic lung disease after her heart surgery (which sounds much worse than it really is) but it has been getting better with time. On Saturday I knew she was working really hard to breath and you could hear the fluid built up in her lungs. We took her to her pediatrician's office and they checked her oxygen sats which were reading 85%...yikes! They have never been that low and since surgery she has been around 98%. The Dr recommended we take her straight to the ER. They were concerned she may have pneumonia. The ER had a more accurate sat machine and there she was reading 87-93% which is better than we thought but still not great. That was definitely a relief! They did a chest xray and ruled out pneumonia but her lungs do look worse. They are enflamed and have more fluid in the space surrounding the tissue. They gave her some IV lasix and after talking to her cardiologist, decided they felt comfortable letting her go home. When she was released from the ER her diagnosis was pulmonary edema and heart failure. WHAT...heart failure?!?!?! The Dr explained that heart failure sounds horrible but really it just means that her heart is overworked and therefore not functioning to it's full capacity. I thought the fear of heart failure was behind us now that she has had surgery! So, we will most likely be visiting the cardiologist and possibly pulmonologist tomorrow. She seems to be breathing a little easier today but is still struglging and has quite a bit of fluid in her lungs. Of course, Madi is still her happy little self. Even as she is struglging to get a good breath, she continues to smile and laugh. She amazes me everyday and is so much tougher than I could ever be!

I am so grateful she is okay and was able to come home but honestly I am a little frustrated right now. Just as she seems to be making great strides forward, we have to take a few steps back. When will she just get to be a HEALTHY baby?!?! I thought these issues would be resolved after her heart surgery...which I guess was wishful thinking! She has already been through so just doesn't seem fair. I know it could be much worse and I truly am grateful for the health and happiness that she does have. Of course this also has an effect on her development. We were making huge strides with her gross motor development and I have noticed a setback just in the past few days. I know I need to be patient and focus on her health but it is hard to see her take steps backwards. I am trying my best to stay positive and focus on the fact that she WILL hit all the milestones at her own pace. I just sometimes wonder where she would be if she didn't have to deal with hear defects and chronic lung disease! I will keep you posted on how she is doing over the next few days. Please keep her in your prayers!!!

I will also post some fun summer pics from the past few weeks very soon.

Saturday, August 1, 2009

9 Months Old

Madi is now 9 months old and is doing great! She just got her first tooth yesterday. I knew it was close to coming in for a little while now but it finally popped its way through. So far she has done great with teething. She woke up once last night and once a few nights ago but was easily consoled and put back to sleep. It was either due to teething or the record setting heat we have experienced here...yes 104 last week. Don't forget that we don't have AC so we camped out downstairs for a few nights. Our upstairs ws at least 90 degrees at 10pm!!!

So Madi had her 9 month check up and here are her amazing stats:
Weight - 15lbs 6oz
Height - 26.5 inches

She is still our little peanut but is steadily growing! She IS starting to put on weight and grow...amazing what having a fixed heart does! Now that she is all healed up we are focused on working on her gross motor development. We knew she would have some motor setbacks from surgery but she has done so much better than I expected. We are still working on sitting and she is getting pretty close. It is amazing to sit back and reflect on all that she has been through in her short 9 months of life. She continues to amaze us and steal our hearts every day. She has developed such a fun personality...she really is a goofball these days.

Here are a few of her favoite things:
- Oliver (our 5 year old Beagle). She cracks up when she sees him and does all she can to grab him.
- Playing peekaboo! She puts a blanket over her own head and pulls it off, then cracks up when you say Boo.
- Any sort of clicking, popping, smacking noise you make with your mouth. She laughs and stares intently trying to mimick the noise you are making.
-Showing off how big she is. When you say "How Big is Madi?" she will put her hands in the air and smile to show you just how big she is!
- Singing...she even loves Mommy's voice!
- Sophie the Giraffe. For those of you who have no idea what I am talking about...Sophie is a rubber giraffe that pretty much looks like a dog toy. It is the absolute best teething toy I have found and she loves it.
- Drinking water out of a glass although most of it gets spit/drooled right back out.
- Cellphones...if one is anywhere in reach she will grab it
- Water...she is a water baby!
We have spent the last few days trying to stay cool. Madi has gone swimming a few times and absolutely loves the water. We need to get her into a swimming class! I was talking to her physical therapist and they are thinking of putting together a water play group for his early intervention kids. It would be taught by a physical therapist so it would be fun and therapy all in one!

Of course I had to post a few pics of Madi. She is getting cuter by the day!!!