One Messy Face and Five Clean Teeth!

One messy face and five clean teeth are both new, exciting and good things for Ms. Scarlett! She has had a messy face as of late because she is EATING! Now granted it is not much, but she is actually eating, her favorite is white cheddar cheese puffs. Anyone that knows about oral aversions know that they are tough to break through, but not only is she eating, she sees her toothbrush and she happily lets me brush her teeth, then she wants a turn! I can not tell you how happy that makes this Momma! With Scarlett being a cardiac patient one thing she will always need to stay on top of is her oral hygiene.

We do not have an update on cath/surgery schedule as of yet, but that is a good thing. She is not critical enough to "blip" up on CHOP's radar as of now, which is good. We do not need to see cardiology until after she does have her surgery unless I have any concerns, which as of now I have absolutely none :), GI said she is not due back for two months, she just received her last Synagis (RSV shot), had a great 18 month well, Audiology is yet to be scheduled, developmental clinic is not until April, ENT doesn't need to see her unless I have any concerns,  and it feels odd not having all these impending appointments to go to. I will update again on her cath and surgery as we get more information :)

And So, We Prepare...Again!

Slowly, we are approaching the time frame for Scarlett's third, and hopefully final, open heart surgery and so the preparation and testing begin. This week or next she will have a sedated echo and EKG done, it will be sent to CHoP (Children's Hospital of Philadelphia) for review and they will call to schedule her Cath and surgery. I was a little caught off guard when her cardiologist said that her surgery would follow her cath by about 2 days, I was thinking I had months to prepare myself for this, not weeks. Although, as any parent going through anything similar knows, as much as you TRY to prepare you are never ready to hand your baby over to the surgeon and the older they get the harder they get. Which, when I was pregnant with Scarlett and trying to figure all this out, all I could think of was how tiny she would be when I had to hand her over for the first time and that it would be harder the smaller she was, but it is completely opposite. Having her at home with no hospitalizations for a whole year by the time her surgery comes is MUCH harder than watching your 4 day old baby being wheeled into surgery. I will update again when I have the results of her Echo and EKG and surgery dates  :-)

What a difference a year can make!

^{One year ago today, December 15,2011, I can safely say was the worst day of my life. Scarlett had a coughing fit, and I picked her up because I thought that she was upset and I was trying to calm her down. Her nurse returned from getting her medications and immediately called for the cardiology fellow because she did not like what was going on. As I leaned her back, I had been holding her up to my shoulder trying to comfort her and as I leaned her back, I saw that her body was completely grayish white and she went completely limp. Athough, what was happening did not set in until I had to borrow the hospital's phone to call my husband to the hospital, since my cell was MIA at the time, and I could barely udder the words while Scarlett's social worker and case manager stood at my side hugging me, simultaneously her room filled with doctors, nurses, a crash cart and finally a ventilator. They never once asked me to leave the room, and for that I was grateful. They explained every medication they gave, every line they put in and everything that was happening on her monitor, again, I was grateful. Scarlett had gone into an arrhythmia, her oxygen saturation dropped into the 20's  and if the combinations of medications that they had given did not work, they were standing by with the paddles ready to shock her heart back into a normal rhythm, she had already been paralyzed, sedated and intubated and a nurse or doctor, honestly a lot of it is a blur, was breathing for her with the bag. Thankfully the medications worked. After this happened, what was going on finally hit me when they told me to have Justin bring Noah, they were not going to deny him seeing his sister whether he had a cold or not and we had to wait for him to see her because they had to turn her room into an operating room, essentially, to get a central line, which ended up being an 8 french double lumen in her right Jugular (her neck). That night one of the phone calls I made was to our amazing military extended family in Germany and they called the hospital and had a care package sent up, which included a rainbow balloon (they didn't choose it either, I will explain this in a bit). The bag arrived after I left for the night and I saw it the next day, which both brought me to tears and gave me a sort of peace with everything that was going on. Two days later, on December 17, which happened to be our seventh wedding anniversary Scarlett's military cardiologist came to Children's to see her and this is when he told us that our only option at this point was a transplant because Scarlett was having "mini heart attacks" and it was damaging her heart, so for the next few  days she remained intubaded and the next few weeks she remained sedated.
 
On to the meaning behind the rainbow, the first time we had recieved bad news after Scarlett was born was the day she had her first cath done, we found out that day that her coronary arteries were not properly formed and she would likely need a transplant. This is a tough pill to swallow about your 4 day old baby. On our way to bring Noah home and go eat dinner we saw a rainbow that seemed to be right over our house as we saw it the entire drive home, and for some reason it gave me an inner peace. The day that she had her BT Shunt placed we saw another one. And as the Lord said to Noah 12} And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: ¹³ I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth.  


We took this as a sign that everything would be okay, and it was. Then after she coded the rainbow balloon stared me down in the darkest of times and made me believe that everything would be okay. As we found out we would be headed to CHoP I turned around to see a bright, full, double rainbow outside of Scarlett's window in her CICU room, it was the brightest, biggest one I had ever seen! I just knew that somehow, everything was going to be okay. When Scarlett is having a tough day, I usually see a rainbow, be it in a reflection of something, on tv, somewhere somehow I see one and it helps me calm down and know, that no matter what happens and what journey we have to go on, everything will be okay.

This is the double rainbow. Keep in mind this is through a tinted window.

That eventful day in the CICU at Children's we had one of our favorite Nurses, Michelle. In January I got an email from The Hope Marietta Foundation asking for Nominations for Nurse of the year. I, of course, nominated Michelle and she won. The way she  responded that day and how quickly she reacted to her gut feeling saved Scarlett's life and for that I will always be grateful.

Now, 366 days later {don't forget it was a leap year ;-) } Scarlett is a happy, as healthy as can be, active, talkative 16 month old. You would never be able to tell the journey she went on this past year by meeting her. She is the happiest baby you could ever meet

So Many New Things....

There are so many new things going on! First not having to go to Cardiologist visits every month, we are out to every 6-8 weeks,Woohoo!! Second is hearing her cardiologist say "she looks great!" when we bump into him randomly around the hospital while there for other appointments. Then comes the new things Little Miss Scarlett is doing. She now waves hi and bye, she blows kisses and is babbling like there is no tomorrow!
Yes, I know every parent is full of pride and joy when their child does something for the first time, but a whole new level gets added to that when it is something that you were told they would never do! When Scarlett was about four weeks old and still in the hospital recovering from her first surgery, the genetics team sat down with us and told us that our beautiful baby girl was likely deaf. I did not believe them, I just knew that she could hear, but there is always that part of you that goes "what if they are right?' My heart was heavy that my baby girl may never be able to hear my voice, or her Daddy or her big brother. I never gave up hope that she could, I still sang, talked and read to her like I would have if I had never been told of the possibilities. As she grew older she started to make eye contact and tracking and I was convinced, at this point, that she could hear even though she failed her hearing test time after time. When she was in the hospital the second time, sedated I would sit and sing and read to her and tell her about everything that Noah did that day. By 6 months old she still had not started to coo or "babble", so I started to get a little nervous. While she was in the NICU at Walter Reed they thought she had an ear infection, but couldn't see into her ears, up until this point at her well checks her ear canals were too tiny for them to even try to look into, so the ENT doctor did an exm with a microscope. The result: Ear Canal Atresia, her Ear Canals do not open all the way to her ear drums. After this discovery a different type of hearing test was performed, where they send vibrations through the skull and she responded almost perfectly to that one! Several months later, in June, she recieved her Baja, a bone conduction hearing aid. Here we are now on December 7 and she has finally started "babbling", and creating consonant sounds. She has been "OOO" and "AAA" ing for a while, but we wanted to hear the consonant sounds and today we got them "dadadadadadada" and "babababababa". I could not have been happier to hear my baby girl talk! It is an amazing feeling knowing that the trouble of her hearing aid (somedays) is worth it!

Scarlett wearing her Baja and riding the train with her big Brother Noah.

I am still working on the one year post,patience please, the pictures are giving me soo much trouble! :)

Day by Day or Breath by Breath

Day by day or breath by breath you will make it through, as hard as it may seem. I was inspired, yesterday, by a nice lady on the phone with my insurance company. I called to check and see why only half the normal amount had been taken and apparently last December they sent us a check that never got cashed, then it hit me: December 11 was the date the check was mailed. NO WONDER! " I know why that check never got cashed. My daughter went into the hospital on the 13th", I told her. Of course her response was "I hope everything is alright with her.", and so we got into the conversation about Scarlett and her loving, mended, little heart.  I went on telling her Scarlett's story, that part of it anyway, and as she said to me "You are an inspiration to me, with the sheer joy that comes through when you speak, you should write a memior", it almost brought me to tears. I am glad that through this time in our lives where we can mostly live day by day, our story and our strength can be an inspiration to complete strangers. I then told her about a letter that I had seen in the entry way to the new Cardiac Intensive Care Unit at Children's National Medical Center. It was a letter from a website called aparentsletter.org, it said "...the tears will flow, they must, but what your child wants to hear from you is your laughter, a conversation (even if it is with the nurse on how their day/night is going), they want to hear YOU..." That day that I read that letter was one of the hardest days and the end to one of the hardest weeks of my entire life! That week on December 15th Scarlett coded and had to be rescusitated and intubated, two days later on December 17th (our 7th wedding anniversary), we were told that our four month old baby girl was in need of a new heart and that we were now going to be in the process of getting transferred to CHoP (Children's Hospital of Philadelphia, BTW hope really does live there!). Back to the story, the end of that week I walked into the new unit looking for the social worker and stopped to read that letter and that day I decided I was going to be happy, no amount of tears I cried or worry I burdened myself with would change a thing and things definately could have been better but they also could have been worse. Scarlett didn't want to hear me pouting or crying. She wanted me, my laughter, my singing to her like I always did.

I won't lie, even to this day there are days that are hard,that I take breath by breath or hour by hour. I do cry, I scream even. Everyone has a point where they just can not take anymore and they break. This is where a good support system comes in, they pick up the pieces and put you back together. When I am struggling or having a hard day emotionaly all I have to do is look at her and she smiles at me and I think, "If she has a reason to smile, so do I. Cheer up Buttercup!" I do not deny that we have been down a long road and still have a long way to go, but we are walking it together as a family and accompanied by some great friends and extended family, sometimes I feel like we are blindfolded, walking backwards, near a double sided cliff, but we get through.

Scarlett update: She is doing well, we have a cardiology visit next week I will update more after then. For now, at her 15 month well check she is 21 lbs 10 oz, 68cm long. She is growing like crazy, still has no teeth, is finally babbling, is scooting around on her bottom instead of crawling but is surely wanting to crawl, and still no progress with eating, she still gets 100% of her nutrition through her G-tube. She is also still the happiest baby I have ever met.

Congenital Heart Walk- May 5 2012

Hi everyone! We are Walking with Mended Little Hearts and raising money to help raise awareness and research for CHD and we need your help! 1 in 100 babies is born with a CHD. CHD is also the leading cause of death among children from birth to age 15. The Congenital Heart Walk is May 5th at Geoge Mason University in Fairfax, VA.  Follow this link and it will bring you to Scarlett's donation page. The donations go to the Childrens Heart Foundation the Adlut Congenital Heart Association and the team we are walking with: Mended Little Hearts of Washington DC.
http://congenitalheartwalkdcmetro.kintera.org/faf/donorReg/donorPledge.asp?ievent=1004186&lis=1&kntae1004186=F5AD79AE40A9467CB5E3CACFD15CBA87&supId=355241133

Scarlett, I and all the children and families affected by a CHD thank you!!

Scarlett's progress



Look at those rosy cheeks!



 Just an update! Scarlett is growing like a weed and doing well! Scarlett weighed 14lbs 12oz at her last dr visits on Thursday. She is doing bolus feeds now as tolerated, she is doing OK with them, could be better. She is enjoying tummy time a little more to where she can lift up her head and look around. She is sitting on her own for about a minute, but can sit with Boppy assistance for about 10-15 minutes :) Her Cardiology visits have gone from once a week to every 2 weeks and now we are up to a month between visits. I asked if she was ok to travel and he said YES! He is not too worried about her having any issues. She just can not fly, so wherever we go we are driving. Now we just have to see what plays out with the house offer and then we can go home for a little bit!







She loved the dancing flower the Easter Bunny brought!



getting to be a BIG girl!