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.