Thursday, December 22, 2011

Our first trip to Philly

We had a fantastic (but exhausting) trip, here's a few of the details. Leaving Raleigh, Jeremy got us bumped up to first class by giving them a sob story about his swollen, sore, pregnant worked like a charm!Thanks US Airways! Once we got to Philadelphia, Jeremy had planned to take me to the Mutter Museum as a surprise (isn't he wonderful!?)! It was a fantastic museum of anthropology and pathology, including slices of Einstein's brain. Our hosts were Sandy and John, parents of our wonderful friend Stephanie. They spoiled us with  homemade meals, desserts, snacks, and even let us use their toll pass!We had a bit of a culture shock driving on the expressway 20 miles over the speed limit and getting passed on both sides! Overall, we like the slow pace of the south a little better ;)

Ok, on to the good stuff! Our first appointment at CHOP was at 7:15 am, so we got there very early, and it is a good thing because it took us a while to find where we needed to be, the campus is huge! Once we got to the Center for Fetal Diagnosis and Treatment, they had breakfast waiting for us (I'm assuming they are used to having hungry pregnant ladies around!). We started our day with an in-depth ultrasound, so detailed, it took almost an hour and a half! They looked at every part of Jensen's cute little body and did not find a single abnormality, other than his heart. He has all 10 fingers and toes, weighs 3 lb. 14 oz (at 30 w 4 d!) and already looks like both of us! Cute right?!
Of course he was being uncooperative, that's how he rolls. So I had to spend a good amount of time flopping from one side to the other to try and get him to move! At one point, Jensen had his head down, and his legs were fully extended so that his toes were poking him in the eyes!! We get a kick out of this kid!

Our radiologist was Dr. Oliver who talked to us to explain again that everything other then his heart was perfect...such a relief!

Next we went for another fetal echo. They did not find anything new at this echo, which is always such a great thing for us to hear. We met with Drs. Rychik and Parnell (fetal cardiologists) who explained again what HLHS is and what each of the three surgeries will entail. They quoted us a 90% survival rate for the first surgery, which is vastly different from what we had heard at the other hospital. Another big difference between CHOP and UNC is the shunts used in the Norwood. CHOP routinely uses an MBT and UNC uses a Sano. There are a lot of technical differences in these approaches, but the most import to us is that if we went with the Sano, we are messing with Jensen's only functioning ventricle. The MBT does not involve the right ventricle. This, along with so many other things definitely made us feel more confident in CHOP. They talked about Jensen's complications when he is older which include cirrhosis of the liver, small bowel issues, and possible growth restrictions. Dr. Rychik also made sure that we knew that heart transplant at a later age is not a normal course of treatment. (We had previously been told that he would most likely need a new heart by age 20.) Jensen is at a larger risk for learning and attention disorders (about ~50% of patients have these issues). His IQ will likely be at around 90-95% of the "normal" bell curve. At CHOP we also leaned that only a small percentage of HLHS babies go home on oxygen and about 1/3 go home on an NG tube. (This was also very different from what we heard before.) 

We also met with an OB and a midwife, Dr. Camden and Lillie. They were both great about answering my questions regarding delivery! The plan is to continue OB care with my normal doctor, then when we relocate to Philly at 36 weeks, I will be seen by their OBs weekly. They want me to be pregnant for as long as possible to give this little guy everything he needs. So, Dr. Camden said I could go all the way to 40 weeks. I will be induced, unless Jensen decides to come early. The delivery will be completely routine, until he is born, then he will be whisked away for IVs and tests. The midwife told us to be prepared to not hold him :( We know it is for his benefit, but it still hurts to not be able to hold my baby boy! Once he is stabilized and in the CICU we will be able to spend quality time with him at the bedside, giving plenty of kisses! 

We also spoke with a genetic counselor, Mariah. She did a pedigree for our family, but our family has pretty standard issues, none that would indicate a genetic link to a congenital heart defect. She talked to us about getting a late term amniocentesis. This would allow Jensen's doctors to be prepared for any genetic condition that he might have. (About 22% of HLHS is syndromic.) We still have a lot to think about and will be making a decision about the amnio soon. 

Our social worker Jennifer was fantastic! She talked to us about all the logistics of moving to be close to CHOP and lodging once he is born. She was very helpful in answering any questions that we forgot to ask earlier and giving us lots of information. 

Each and every person we met at CHOP was friendly and helpful. I can't say enough good things about this hospital! It is a happy, bright place that gives you a good vibe just from walking through the doors. We feel so confident in the doctors and medical staff there! We are very excited to relocate next month! Jeremy and I still have so much to do before we go! 

We want to thank everyone for their prayers and support during all of this. It has been a roller coaster, but we are happy with how things are going! We are blessed with amazing friends and family, and I'm making more friends along the way (that's you heart mamas!!). I think this picture sums up perfectly the atmosphere at CHOP!!Hope everyone has a Merry Christmas and safe travels!

Thursday, December 15, 2011


Thank goodness our insurance finally approved our referral to CHOP! We have been fighting with this for weeks. The insurance coordinator at CHOP told me that we are the only military couple from NC to ever get denied?! I harassed the Center for Fetal Diagnosis and Treatment almost daily waiting to hear news of the referral. Needless to say, there were many petitions filed (and refiled)...and finally...its approved! Yay!

Now I can breathe a little easier :) CHOP here we come!

Wednesday, December 14, 2011

Day of appointments at UNC

Jeremy and I met with the team at NC Children's Hospital (UNC) on Monday. We are comparing the heart program there with the program at the Children's Hospital of Philadelphia (CHOP). We first had a fetal echo with our cardiologist, Dr. Robinson. His office is wonderful and he is a fantastic cardio. He will be our cardiologist we see throughout the course of Jensen's treatment.

The echo went well and they saw no further complications, other than HLHS. They were able to visualize J's heart better this time, he was being very cooperative! They confirmed that he has no left ventricle, mitral atresia (the valve on the left side of the heart is either narrow or not formed at all), the transverse aortic arch is about 2 1/2 mm (normal is 4-5), and the ascending aorta is not visible. Aortic stenosis (narrowing) is one of the factors that determines a patient's level of severity; Jensen is considered "high risk". However, no leakage around the other valve was seen, the left atrium is normal, and the right ventricle is working well, which are all good signs. Although this all sounds terrible, we were actually relieved that the diagnosis had not changed and no other abnormalities were found.

We asked a lot of questions about interstage. Interstage is the time between the first two surgeries, Stage I is the Norwood, Stage II is the Glenn. This will be a very critical time in Jensen's life and he needs to stay completely healthy. This means once we are back home, visitors will be extremely limited. Anyone who comes in contact with him will need to wash their hands thoroughly and Jeremy will probably implement a "clean" wardrobe consisting of gloves, gown, and mask (probably overkill!!).  During this time we will be closely monitoring Jensen's oxygen levels and weight, while watching for any signs of illness, fussiness, discolorations, etc. He will see his cardio at UNC at least monthly, who will keep in contact with his surgical team at CHOP or UNC.

On Monday we also went on a tour of the NICU and met with a neonatologist, Dr. Peter-Whol. In the delivery room, there will be a team from the NICU ready to stabilize Jensen if necessary. He will immediately be taken for an echo and started on IV prostaglandin to help keep his PDA open. He will remain in the NICU until about 48 hrs before surgery, then will be transferred to the PICU.

Our last appointment was with the pediatric cardiothoracic surgeon (CT surgeon), Dr. Mill. He was confident, informative, and even friendly! He went over the details of HLHS again and the specifics of the Norwood. He answered the many, many questions we had and we feel very comfortable with his skill level and abilities.

Overall, we had a great day. We were so lucky that both sets of grandparents got to be there! Jensen has so many people that love him so much already it is amazing! We are very blessed to have such wonderful, supportive families :)

Tuesday, December 6, 2011

First Blog!

Please bear with me as I learn how to blog! We want to keep our family and friends up to date on how things are going, so we will do our best to put all the information here. We are so excited to meet our little boy and give him the best care possible =) Thanks for reading!