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 :)
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This was very interresting Amy! Will keep up with baby Jensens progress and continue to pray for the three of you! Glad both grandparents got to tag along he is a very lucky little boy surrounded by lots of love!
ReplyDeleteGreat news. When you hear that everything is remaining stable, you breathe a sigh of relief. Love the blog! Continued positive thoughts and prayers to you all. (((hugs)))
ReplyDeleteMyself and my family are praying for you and little Jensen. He is a blessing from God, and God is going to see him through all this. Keep your head up and stay strong. -Ashley
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