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!

Scarlett is home!

YAY! Scarlett came home last Thursday! :) What stinks, however, is I think she had a tummy bug yesterday and today. But she saw her Cardiologist today and he said that the fluid in her lungs is almost completely gone, her breath sounds are clear, she is doing good on her meds and gaining weight nicely! He also said that she is a little more blue than most Glenn patients and breathing faster than she should, but it could  be because she isn't feeling well because she wasn't breathing that fast or so blue in the hospital. She may need to go back to CHOP for another Cath. Otherwise she is doing good.

Scarlett is liking it at home. She looks around and smiles, makes faces with her amazing big brother, laughs and smiles, oh and flirts with all the neighbors ;)

Slow and Steady!

Slow and steady...that is Scarlett's progress lately. The Chyelothorax was quite a scare and it hasn't completely gone away but hasn't really reaccumulated. Finally, Wednesday, after 64 days in the ICU (of all types) she made her way to the Pediatric Ward! It's nice because we can stay with her and get used to doing all of her care, but then again it's rough on Noah not being able to spend anytime as a family except for at the hospital.

Scarlett has been completely weaned off of all of her sedation medications and now just has Reglan (spelling?), Prilosec, Vitamin D, Lasix and her Lovenox Shot. YAY!! That is a huge change from when she came from CHOP, her medications list was 2 pages long!! They have been letting us give her Lovenox shot since we have to do it at home and it's not as hard as I had thought it would be. They are using much smaller needles than they did in CHOP.

They are working on getting her on a much more managable feeding schedule than the 24 hour continuous feeds and once that happens they said she can come home!  :) 

CHD Awareness Week- Wear RED to help raise awareness.

Feb. 7-14 is CHD Awareness week.

She is my reason for wearing RED!

42 Days and Counting.....

Fourty two days and three hospitals to be exact. That is how far we have been on this leg of our journey. Countless miles, countless tears and no end in sight quite yet. We are now at Walter Reed, but not sure for how long.  Scarlett has a pleural effusion, or fluid filling in the pleural cavity in her chest (the area around the lungs).  It is not uncommon for the type of surgery that she had. They have drained it once and got four ounces of fluid out.  It is not the type they were hoping it was, because the kind it was will and is coming back.  They have given her more diuretics and are going to change her formula to try and stop it. If this doesn't work then we will end up back at CHoP to get a cardiac cath and a chest tube put in to let it drain.  If that happens it takes a long time, an  estimated six to eight weeks, to heal. The good news from all of this is, it WILL heal, it could just take a while.  That is the worst case scenario and I can deal with that. Of all the reasons to be going back to CHoP, even though I would rather not go at all, I am ok with it being this.  I did tell Scarlett the next time we travel I would prefer it to be to Mexico, I'm hoping that's the case.

I want to thank everyone for thier thoughts, prayers and help that everyone has given!  I will update, hopefully with good news, soon.

The Power of Prayer!!

"Momma, did you hear what they said?!?"

Scarlett is in shock and so are we and we are thankful, excited, happy and the list goes on! Scarlett is not in need of a transplant right now. Her second surgery worked and went much better than expected! She is going to get transferred to Walter Reed sometime next week.  We are very thankful to everyone for all of the help and prayers!

She is very happy to be going back to her "home hospital"

The Smile of an Angel

Angels. . . . to me these are the people caring for and about children (and thier parents) in the hospitals, especially the nurses, doctors and surgeons. The look on their face says everything, it can be a punch in the gut or a sigh of relief. They are the pillars that help you stand when you can't stand on your own anymore. The nurses shoo you out to make sure you eat, take walks, are drinking enough and make sure you are sleeping, all while taking amazing care of and saving the lives of babies all day everyday.

Thankfully on Thursday I saw the smile of an angel when the surgeon came to talk to me. She said that "everything in the operation went as well as it possibly could have". Before the surgery, she laid out all the options for me: if things did not go well she could have ended up on ECMO, which is the heart lung bypass machine on the floor, would have been listed for transplant within 48 hours and if she had been waiting for a heart for more than a few weeks they would have put in a Berlin Heart, which is an artificial heart, until she could get a transplant. I was a complete wreck before the surgery, but after talking with the surgeon, knowing that they had a plan in case things did not go well, I felt much better. The operation Scarlett had is called a Bi-directioal Glenn. They took out the BT shunt and connected her Superior Vena Cava where the shunt used to be on her Pulmonary Artery. They were also going to patch her Pulmonary Artery where there was narrowing, but it was the shunt and as soon as the shunt was disconnected her artery was fine. YAY less healing necessary!



Scarlett 2 days after her Glenn 1/7/12



After they brought her back to her room and I was able to see her they let me know that they were prepping for ECMO and getting the bloodbank to hold the blood for her because the first few days were critical and if she took a turn for the worse she could still end up on it.

We are a few days out now and I am thankful that I can say she is doing well. The doctors are very happy with her results and when the docs are happy, Momma is happy!

New home, new family

We all arrived here in philadelphia safe and sound yesterday. We have started meeting the new doctors and nurses. They all seem really nice so far. We again have a great social worker which is nice.

They did discover something new yesterday: both of Scarlett's femoral arteries are completely occluded so they started her on levonox then switched to heparin since her surgery is coming up tomorrow. I am praying that I will have good news to update with tomorrow.

They did get us a room at the RMH in Camden, NJ. We can stay there until Scarlett is discharged if we need to. Sorry for the short update, but that's it for now.

Where we are now.....and it's ONLY the beginning!

The heart of a child is a rare thing, full of wonder, joy and a zest. Some babies are born with broken hearts, and those let the joy,wonder and zest spill over into their spirits. Scarlett was one of those born with a broken heart, however, unlike most her's can not be mended like first thought. We are soon going to be headed to Philadelphia to wait for a new heart.

On the Thursday after her g-t...ube was put in (Dec 15th) she coded and had to be ressucitated or as I say permanently claimed her spot in the CICU. She is having mini heart attacks and it is damaging her heart muscle. We will be headed there as an in-patient transfer as she is too critical to be taken off of the oxygen and medications. We will have ro wait for a heart to become available, then wait about four months after to make sure she does not reject it.

This is in no way an easy journey, but we are surrounded everywhere by amazing people. Our families, the hospital staff, and our amazing friends, new and old!! And of course our faith, we know that no matter how much we worry, it will not change what is going to.happen.

We want to thank everyone for being our support system!!

The Start of Our Journey

It is said that a baby changes everything and OH BOY is little Miss Scarlett ever proving that one true! At my 20 week anatomy scan we found out we were having a GIRL! We also found out that they couldn't see one of the chambers of her heart. I wasn't too concerned, the same thing happened with Noah and 2 ultrasounds later they could see his entire heart. Well with Scarlett, two days later I was in the Maternal Fetal Medicine Clinic because it wasn't that they couldn't see her entire heart, they could, but a portion of it was not forming correctly. She has what is called Pulmonary Atresia with an intact Ventricular Septum.That day they also did an amniocentesis because this heart defect could be caused by a chromosomal abnormality that would prevent her from living outside of the womb, if she survived until birth. The three weeks waiting for those results were HELL! Feeling her move around and not knowing if I would ever get to hold and snuggle my baby girl is a feeling I would not wish on my worst enemy! The amniocentesis came back ok, which was a huge relief. I felt like I could breathe again, for a second anyway. In no way will the road ahead of us be an easy one, but it is one I am glad we get to travel when three weeks prior we had been told we may never get to hold our baby girl.

The next doctor appointment went as well as it could. The doctors and nurses that cried with us in sorrow and pain three weeks before, cried with us tears of joy as they told us " I really think she has a chance". The Hypoplastic Right Heart can be bypassed through a series of  surgeries, one at birth, one at three to four months and one again at 18-24 months.

Being located in Germany, the military did not have the resources that were required to help us so we said Auf Wiedersehen Deutchland...Hello Maryland!! They PCS'd us to Maryland, where I recieved the rest of my prenatal care and Scarlett was born at the National Naval Medical Center, now Walter Reed.

At 12 hours old Scarlett was transferred to Children's National Medical Center, 2 hours later I was discharged so I could join her.There we met the most AMAZING people. The entire staff not only care for your child, they care for you as well. They make sure you remember to eat, sleep and take an occasional walk, all of which seems trivial, but those are the things that will keep you sane, and you can't take care of your child if you haven't taken care of you!

At four days old Scarlett had her first Cardiac Cath, which is when we found out about her abnormal coronary artery. Her coronary is dependent on her hypoplastic Right Ventricle and is stenotic, which means narrowed and it has a kink in it that doesn't let the blood flow as it should. This is the day that we first heard the "T word". We were hopeful and pushed on with the single ventricle track. At eight days old on August 16, 2011 she underwent her first heart surgery to place her BT Shunt. And finally after a total stay of 47 days and some feeding issues we got to bring our little miracle home.

Noah is the BEST big brother, he can calm her down just by talking to her, he loves on her and she responds to him like noone else! They go together like Peas and Carrots  :-)  He was the first to get her to smile and to giggle.

Thanksgiving came around and, FINALLY, we felt like a pretty normal family! We had gone two whole weeks with out any appointments! That was the longest strech since March 21 when I had my first anatomy scan.