Our Happy Baby Is Back!

We have our happy girl back!! Madi has been a completely different baby today...no meltdowns and lots of smiles and laughs. It is so great to see her back to her happy self again. Her potassium levels are back up so she doesn't need to take potassium anymore...thank God! We also switched her blood pressure medicine to one that is a much smaller volume so it is much easier to give to her. She has taken all her meds today like a champ with not a tear shed...so much different from the past few days. I think the main difference is the potassium which I think burned/hurt and set her up for a horrible day. She is now also on a steroid as she has a little build up of fluid around her heart. It is not the best tasting but she did pretty well with it and I made sure she had a bottle close by for a chaser! She will only be on this for 5 days and I am hoping this will also help her lungs out a bit. The best news of all is that we are going home tomorrow!!!!! Madi will go home on a little bit of oxygen (1/8 liter) and will probably only need this short term. It is just going to take some time for her lung pressure to balance out. We will most likely have to go to a pulmonologist eventually to work on her pulmonary hypertension. Other than that, not much new to report. Her heart still looks good and her surgeon and cardiologist are happy with the repair. A huge thanks to the awesome medical team who did a great job...especially Dr Woods who worked his magic and repaired what he said was "the most complicated AV Canal he had ever seen"!

It is amazing to sit back and think about what has happened over the past week. I look at my little baby and can't believe that she had open heart surgery 9 days ago...she is amazing! If you looked at her today you would never know (well, minus the oxygen she is hooked up to). I have gained so much strength from her and watching all she has gone through. I feel so bad for her, but know that this will only make her stronger. Here are some pics from the past few days:

Madi plotting a way to escape from the hospital

Playing with Nonna and Grandpa

Showing off her tough-girl scar

Reading books last night

Rough Day

It has been a pretty rough day here for Miss Madi (and just about as rough on Mom). I think Madi is completely done with being in the hospital. She is tired of choking down medicine and being messed with every few hours. She was quite the grumpy girl today with multiple meltdowns that turned her blue. I think I am going to need to take some of her blood pressure medication! Speaking of medicine, here is Madi's list of meds she is taking: Lasix 3 times a day (a diuretic), Captopril 2 times a day (for blood pressure), Prevacid once a day, Potassium 2 times a day, and tylenol as needed for pain. She is now taking all of these orally and it is torture to give them to her. The potassium tastes awful and ever since she started taking it she has no interest in taking any medication. She literally screams, turns blue and sucks in tons of air which later gives her gas pains...it is awful! I am at a loss of how to make this situation better. If anyone has any suggestions please let us know. She used to take medicine like a champ but seems to have lost all patience. I hope and pray it will get better once we are home but who knows...I see no end in sight right now. Speaking of going home, we may be getting released tomorrow or Saturday! Madi may have to go home on oxygen as she still is having a hard tiime getting completely off of oxygen...hence the meltdowns that turn her blue. Her lungs still have some fluid in them. So, we may have to go home with oxygen for a bit until her lungs get better. They told us this is fairly common and it just takes some time. Her lungs still look fairly crummy on the chest xray which may be why they are taking some time to adjust. So again we are trying our best to be patient. It was just so hard to see Madi so upset today. I literally spent half of the day holding her and cuddling (which I love) but that was the only thing to keep her from screaming. So tomorrow we have another busy day with an echocardiogram, chest xray and bloodwork to make sure she is responding well to the meds. Please pray that her potassium levels are back up so we can stop giving it to her...that would make us all so much happier!!! Thank you again for all of the love, support and prayers...we truly appreciate it.

So Far So Good

So today has been a busy day for Miss Madi. She had a good night and rested peacefully. She even cracked a few smiles for me at 4am!!! I was so happy that I had to wake Dave up so he could see our smily girl. It was so good to catch a glimpse of the Madi we know and see her feeling well enough to smile. She has been taking tylenol with codine for the pain and that seems to be keeping her comfortable. She has had some major constipation issues and needed some help to get things moving! We'll just say that she has found some relief and is a much happier baby.

This morning we had the echocardiogram of her heart as well as a chest xray. We were very nervous to se ethe results of the echo as this will tell us whether or not the repair was still successful. We were just praying that the valves were not leaking excessively! Everything on the echo looks good. Her left valve has a minimal leak which is very normal. She can have a nominal leak like this forever and never have any problems. The right side did have a larger leak but that is due to pulmonary hypertension (high blood pressure of the pulmonary artery which is a blood vessel that carries oxygen-poor blood from the right ventricle to the lungs). Her cardiologist said it is very common to have higher lung pressures post surgery and that this is all in the realm of normal. He also said that it is very common in kids with down syndrome. He said it usually just takes time to get the pressures lower and oxygen helps. So, we will not be weaning Madi off of oxygen for a few days. There are some medications that can help pulmonary hypertension if it doesn't get better with oxygen and time. The main one used is Viagra. Yes, you read that right...I did say Viagra. He said that Viagra was initially used for pulmonary hypertension and they found a great side effect to make them millions! :) So, our little girl may be on Viagra...hmmm! They are going to do a repeat enchocardiogram on Friday to see how it all looks. This is all good news and we are no longer concerned about the need for another surgery immediately!!! Woohoo

Maid is pretty worn out this afternoon and has not been the happiest girl today. Every time anyone in scrubs comes near her she makes a sour face and starts to whine. She has already figured out that someone in scrubs = getting prodded.

Happy Memorial Day!!! Please take a moment to honor the true meaning of Memorial Day and remember those who have served our country and especially those who have given their life! Thanks Daddy and rest in peace Rick and Dale.

Out of The ICU

Today Madi was moved out of the ICU and onto the regular floor...yeah! This is one step closer to home! I am now able to stay with her overnight...I even have a chairbed (chair that pulls out to a bed) and our own bathroom with shower. We are set...it is like our own little apartment. :) Dave said he is going to bring in his sleeping bag and camp out on the floor...not the cleanest idea but I'm sure he's been through worse.

Madi is still doing well today. She is much less sedated but is in some pain today. She is squirming around quite a bit and can't get comfortable. She has been crying out today...which is good to get her lungs moving but hard for us to watch. She is definitely not her normal happy self. Even when she is awake she is not the happiest camper so we have been trying to get her to sleep as much as possible. She did have a bit of a fever this morning but is responding well to tylenol. Her cardiologist will be doing a follow up echo (ultrasound of her heart) to look at the repair and make sure everything looks good. They did hear a slight murmur today so please pray that it is nothing major!!!! We will continue to keep you updated. Thank you again for all of the prayers...and please keep them coming! :)

Pics From Today

Here are some pics from today...no more ventilator or chest tubes!!! :)

Our sweet girl

She still loves to hold Daddy's hand

Daddy's Little Ranger

Well, Madi is having another fantastic day! This morning the Dr's decided to take out her chest tubes, pacer wires, catheter, and arterial line. The pacer wires were hooked to a machine that would pace her heart if it got into a funky rhythm. The chest tubes are tubes that drain the excess fluid around her heart. They had to sedate her to pull out the wires so she has been pretty sleepy today. If she hears our voices she tries so hard to wake up and look around but she is still pretty out of it. The good thing is that she seems very comfortable. Now that the wires are out she is off of the heavy pain meds through the IV and is getting pain meds by mouth as needed. This will help to wake her up more so she is not so out of it...she is definitely still in her "happy place". Getting these wires out is a huge step and she is doing great!!! They said as long as everything continues to go well tonight she will most likely be out of the ICU tomorrow and on to the regular floor for the next few days.

I was also able to hold her today!! It has been so hard for me to not get to hold my little girl and finally after all the wires were out...the moment came. It was almost as wonderful as holding her for the first time after she was born. I was a little afraid of hurting her but she seemed very comfortable back in mommy's arms!

We are just so incredibly proud of her. She has been such a trooper through all of this and she is doing so well. She truly is our little fighter...she is Daddy's little Ranger! :) I will post some more pics of her once we get back home. It is so nice to see her sweet face without the ventilator!

Thank you again for all of the love, support and words of encouragement through this tough time. We already feel like she has come so far and we are so close to a full recovery. It is so nice to know that the surgery is behind us and we can move forward and get her feeling better.

Our Tough Cookie

Madi is having a great day! She had a busy but good night and she is doing wonderful. She did spike a temperature over night but they put a cooling blanket on her which did the trick. Obviously, it is very common to have a bit of a fever after surgery but it is important to keep her blood pressure down right now, so they have tight perameters for where they want her temperature to be. When we arrived at the hospital this morning Madi was awake. She is still pretty sedated and sleepy but definitely wakes up and looks around a lot. She is squirming all over but is not fighting the tubes. It is great to see her doing so well but was hard to see her awake and squirming to try and get comfortable. She is still on the ventilator so she is unable to make any noise. She looked at me a few times and I could tell she was trying to cry by the look on her face and it literally tore my heart out!!! I can only imagine what she must be thinking...mom, why aren't you picking me up...what is going on. I keep reminding myslef that she will not remember this...thank God! It is so reassuring to see her doing well and to get positive updates from the nurses and doctors. Currently they are weaning her off of the ventilator and plan to have her off of it sometime this evening!!! Her lungs are a little "wet" so they are also working on trying to loosen the fluid and suction it out. Every hour they lower the amount the ventilator is helping her and she is handling it beautifully. She is our tough little cookie!!! Dave just helped give her a sponge bath and change her bedding. She is now resting peacefully...awake but definitely comfortable! We will continue to keep you posted. Thank you again for all of the prayers...they are working!!!