Saturday, May 30, 2009

Our Happy Baby Is Back!

We have our happy girl back!! Madi has been a completely different baby 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 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

Thursday, May 28, 2009

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 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.

Monday, May 25, 2009

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.

Sunday, May 24, 2009

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 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! :)

Saturday, May 23, 2009

Pics From Today

Here are some pics from 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.

Friday, May 22, 2009

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, 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!!!

Thursday, May 21, 2009

The Longest Day...

Wow, what a day for the Kang family. Madi's surgery was a success and she is doing well as we speak. The surgery ended up being a lot longer (about 6 hours) and much more complicated than originally anticipated. Here is a quick explination (to the best of my abilities) of the complication that was found:
Madi's heart needed a patch between the two (right and left) ventricles. Once the surgeon was inside her heart he noticed that her chordae tendinae (chord-like tendons that connect the muscle of the heart to the valves) were crossed through the center of her heart where he needed the patch to go. At that point he had two decisions...he could not repair the heart and she would always have one ventricle, or he could give it a shot and do his best to continue with the repair. He told us that if it was his child he would have wanted her to have a shot at it so he went ahead with the repair. He literally had to weave the patch through the tiny tendons in order to close the hole and repair the valves (which is why the surgery took so long). They did an ultrasound once he was done and as of now the valves are functioning and not leaking!!! This added complication does increase the risk of the valves eventually leaking and possibly needing another repair (10 years down the road). All in all (and despite the ulcers formed by mom and dad) things are looking good so far. Madi is doing well and continues to be a strong fighter!

Madi is resting comfortably and is heavily sedated. They are going to definitely keep her on the ventilator through the night and therefore they are keeping her very sedated. It was so extremely hard to see her with all of the wires and tubes. It amazes me how much strength I have gained from her. Watching her literally fight for her life is incredibly inspiring and moving for me. I would do anything to switch places with her. I feel so completely helpless! As her mom it is my job to protect, care for, comfort and provide for my baby. It is so hard to just stand by and watch as doctors, nurses, respiratory therapists etc tend to her. We just lef the hospital to try and get some sleep and it is so odd to be home without her. I know she is in great hands and she has an a amazing team working on her. It is insane how chaotic her room in the ICU is...there is constantly someone monitoring or doing something. I keep telling myslef that each minute that passes is a minute closer to a healthy and happy life for our sweet girl. We know she is on the road to recovery and we pray that she has a good night!

We will be back at the hospital by 7am so we can catch all the doctors on their rounds. Thank you again for all of the support, love and prayers. It means so much to us! Here are some before and after pics. Just to warn you...the after pics are a little tough to look at! :( One day we will be able to show her how strong she was, even as a tiny baby!

Surgery Day...

It has been quite a while since I personally wrote in this fact, the last entry I scribed was during the first few weeks of Madi's life while in the NICU...

Pins and needles. NO. More like, spikes and knives...

Wow, the day that we have been anticipating (in both a positive and fearful way) has arrived. So, this morning/today has quite literally been the hardest day of my life thus far-hands down. The starvation, sleep deprivation, and physical challenges of Ranger school, two combat tours in Iraq, being wounded, losing comrades, being broken up with Jenn for 3 days in college :) , ALL the emotional and mental challenges of life up to this point...none can compare to watching your 6 1/2 month old daughter being carried off into the OR for open heart surgery. I was nothing but helpless at that point...

Utterly helpless...

A moment in time that will never escape the memory of my heart played out like this: after Jenn and I allowed one of the OR nurses to take Madi from us and start heading to the OR area, we both noticed that just before Madi disappeared around a corner, she was straining over her shoulder to look around the nurse and catch one last glimpse of mommy and daddy-tearing up and trying to maintain composure in the hallway. That event yanked at my heart...almost right out of my chest.

As a father, the emotional challenges of this event revolve around the premise that I am completely powerless to protect shield her from the pain and discomfort that this lifetime is sure to produce. Because the procedure is a MUST, to enhance the quality of her health and life, what else can I do but humbly deal with the emotional shackles to which I am currently bound...?

At this very moment, we are sitting in the surgery waiting room, whispering our prayers and making every effort to keep thoughts positive and our minds elsewhere. Through the windows we can see a clear and sunny day; blue skies and green trees litter the picturesque background...a scene that has become a trademark for the changing season in WA. Today IS a beautiful day, indeed. Madi is currently being operated on to repair and strengthen her heart, and, we have endured yet another emotional hurdle that will strengthen our spirits and hearts as well. Life is a beautiful thing...and even more beautiful when you take the time to look at it through the eyes of your own child. All the introspection in the world cannot help you fully appreciate the fragility and the power of life better than the eyes of your flesh and blood.

Yes, Jenn and I are scared. Unbelievably scared. But we will get through this together...and more importantly, little Miss Madi will get through this. We will continue to keep you all in the loop with how things turn out...

Thank you for all the blessings, prayers and well wishes from our family and friends. Bless you all. Also, a special thanks to Grandma and Grandpa Lichtenberger for making the trip up from Sacramento and spending time with us at the hospital. Also, thanks to Beth (a great friend and Madi's Godmother) for taking the time to keep us company at the hospital and for always managing to help keep a smile on our faces. AND, a huge thanks from me to the Triple Play Stinger family. Thank you players and parents! The gift bag that Joy dropped off was VERY thoughtful and much appreciated. Thank you so much for your consideration as well as your individual places in my life. It really means a lot...

All Our Love, Dave, Jenn & Madi

Friday, May 15, 2009

Where does the time go??

Wheeeew we have had a busy few weeks. I can't believe May is already half way over!! Quite a lot has happened over the past few weeks so I will do my best to summarize.

On May 2nd Mommy had her alumni soccer game at Seattle U. It was a lot of fun to get together with old teammates and lifelong friends to kick the ball around and see if we still have it. I literally had not kicked a soccer ball since I found out I was pregnant so I knew the first few minutes would be pretty entertaining. It took a bit but eventually it all came back to me...just in a much slower and more painful pace. All in all it was a great time and I came away with no injuries and was surprisingly not too sore! Madi enjoyed wtching Mom play soccer for the first time and hopefully she learned a few tricks...she will be up and playing in no time!

Madi has also started going to physical therapy once a week. She still has some stranger anxiety but took to her therapist Larry really well. She had a good time and really works hard for us. We are so excited to see what the difference will be after she has recovered from heart surgery. Everyone is always surprised at how well she is doing and how much energy she does have despite her heart defect. We are still focused on lots of tummy time (which is a huge workout for her now), getting her to use her arms to push herself up, and sitting up. She has come such a long way and we are so proud of all she has accomplished already. The great thing about kids with down syndrome is that they will reach all the milestones that other kids reach, it will just be at their own pace. As of now she is not too far behind and it is our goal to do all that we can to help her reach those milestones!

On Wednesday we had Madi's pre-op appointment for her sugery that is scheduled for next Thursday. It was a long afternoon that consisted of a tour of the hospital, meeting with the surgeon and his team, bloodwork, echo cardiogram, chest x-ray and an appointment with the cardiologist. It was a lot on little Madi but she was definitely a trooper. The surgeon spent a lot of time with us explaining the procedure, rattling off a lot of statistics, discussing possible complications, and helping to prepare us for what to expect. We both really like him and feel confident that he will do a great job! He assured us that the success rate for this procedure is extremely high. They also helped prepare us for how Madi will look after surgery. She will have a pretty large incision down the center of her chest as they have to go in through the sternum. She will most likely come out on a ventilator, will have chest tubes for drainage and quite a few IV's...I think I am forgetting some things. Needless to say it is going to be extremely difficult to see our little girl like that. She should only be on the ventilator for a day or so and slowly as she becomes stronger they will be able to start removing the wires. He also said to expect a 7-10 day hospital stay. If you are interested in learning more about an AV Canal defect here is a link with some info

I had an amazing first Mother's Day (well the first one with her here with us)!!! The day started with breakfast in bed with my two favorite people! We then went for a walk in the afternoon and had a picnic at the park near our house. It was such a fun day to spend as a family. I absolutely love being a mom and I feel so blessed every day to have such a sweet and loving baby. Madi got me a new BOB jogging stroller so we can get out and go running together. I am definitely ready to get back into running but was unable to when it is just Madi and I at home. I was very excited for the new stroller and have already enjoyed a few runs with her.