Latest Updates on Noah
This page is a permanent place for the most significant days and events in Noah's journey, generally with a good bit of detail. For the absolutely most up to date news on Noah, you can also visit his Facebook page by clicking here. Please note you'll need to be logged in to Facebook to see Noah's page.
Thursday, January 5, 2017: Noah's Glenn Procedure
This is Noah's second open-heart surgery. In this procedure, his surgeon removes the Sano shunt which was inserted as part of his first (Norwood) surgery, and then connects one of the large veins that normally returns blood to the heart (the superior vena cava) to the pulmonary artery instead. This allows oxygen-poor blood coming back from the head and arms to pass directly to the lungs (to become oxygenated) before returning to the heart to be pumped to the body. This procedure reduces the work of the right ventricle, Noah's only pumping chamber.
This procedure only directs blood from the upper half of the body to the lungs before it reaches the heart to be pumped out to the body again; it does not pass blood from the lower half of the body directly to the lungs. This will be done in the third surgery, the Fontan, when Noah is roughly between 18 months and 3 years old. Note as well that the blood going to the lungs is doing so only passively, before going to the heart. There is still no pumping chamber dedicated to pumping blood just to the lungs, as is the case in a healthy heart
Noah's First Thanksgiving
Thursday, November 24, 2016: Noah's First Thanksgiving
This Thanksgiving, we had a lot to be thankful for!! Noah continues to do well during this "interstage period" - that time between his first surgery (the Norwood) and his second surgery (the Glenn).
...continue to live your lives in Him, rooted and built in Him,
strengthened in the faith as you were taught, and overflowing with thankfulness.
Noah at home at last!
Tuesday, October 25, 2016: Noah Comes Home!
After 59 days in the hospital, Noah finally got to come home. Fortunately, he slept the entire way home, even through the crazy Boston traffic! He woke back up literally as we pulled into the driveway at home.
To tell the truth, it was a bit freaky to bring Noah home, no longer having doctors and nurses all around, 24/7. The first night, we could hear a pin drop. Nevertheless, there really is no place like home!
Noah after getting his g-tube
Friday, October 21, 2016: Noah gets his G-Tube
Because Noah has been having trouble taking much food by bottle, he needed to get a gastrostomy tube ("g-tube"). This will allow us to feed him directly into his tummy. You can read about the Mic-Key gastrostomy tube here. This surgery went fine, and was very minor compared to what Noah has already been through.
Noah's first trip outside - in Prouty Garden
Tuesday, October 18, 2016: Noah's First Trip Outside
At 50 days old, Noah goes for his first trip outside. It was a beautiful, warm day, and we took Noah out into Children's Hospital Prouty Garden. Of course, he slept through most of it, but it seemed like he liked the fresh air before he dozed off.
Ride to Step Down Unit
Monday, September 26, 2016: Noah makes it to the Step Down Unit
Tonight Noah moved from the Cardiac ICU to "the floor" - meaning he does not need to have quite so close an eye kept on him. This is the single biggest step before being ready to go home.
Tuesday, September 6, 2016: Chest Closure Day
Noah had his chest closure today. Since his heart surgery, the doctors have left his chest open, and covered up with a protective patch. This is done so that in the unlikely event that something happens or goes wrong, they can quickly get at his heart to help him. It was determined that today Noah is ready to have his chest closed.
Wednesday, August 31, 2016: Surgery Day: Norwood Procedure (with Sano modification)
Noah's Operation Diagram
Today Noah had his open heart surgery. His chest will never again be without a scar.
They came up to his ICU bed around 8:00am to get him, and he was in surgery for a total of about ten hours. Noah had some complications immediately following his surgery, relating to the oxygen levels in his blood. This wasn't unexpected, however, due to the partial restriction in his foramen ovale (the hole in the wall between the two atria) prior to birth.
This operation is the first of three that Noah will ultimately have. It is also the most involved and "trickiest". It involves reconstructing the aorta (which in Noah was very underdeveloped) by connecting it to the trunk of the pulmonary artery with a patch. It also involves creating a pathway for blood to also get to the lungs from the one pumping ventricle that Noah has to work with. Noah's particular surgery is called the Norwood operation with the Sano modification (see image), where a tube is inserted to connect the right ventricle to his pulmonary artery to get blood to the lungs. This is in contrast to the alternative method used in the Norwood procedure, wherein a tube is used to connect a branch of the aorta and the pulmonary artery (click here for image). The same objective is achieved in either situation, namely, to get some of the pumped blood to the lungs; which one is used depends on the particular baby and his or her anatomy. Finally, the Norwood operation includes the removal of the interatrial septum, the wall that separates the two atria of the heart. (Note this step is not shown on the diagrams on this page).
Sunday, August 28, 2016: Noah's Birthday!
Happy Birthday Noah!
Noah arrived two weeks ahead of his orignal (40 weeks) due date of September 13! He was born in the morning on Sunday, August 28, 2016, and weighed 7 pounds, 2 ounces. It is so wonderful to have him here, and so great to be able to hold him for the few days that we can before his heart surgery. Noah has a long road ahead of him, but he will never be alone.
Thank you to all the doctors, nurses, and everyone involved in Noah's delivery, which went super fast! Being a heart baby, Noah had quite the ensemble of medical folks waiting for him; Rick counted sixteen people in the room at one point!
We still cannot believe how quickly he came. We noticed that Kristina's water had probably broken around 11:00pm Saturday night, and rushed to York Hospital in York, ME, where they confirmed he was indeed on his way. From there, Kristina and Noah took a little ambulance ride to Brigham and Women's Hospital, with Rick not far behind. This was approximately 1:00am, and Noah would take his first breaths of air not even seven hours later.
Wednesday, August 17, 2016
36 Week Ultrasound
We had an ultrasound today and Noah continues to grow on track. They estimated his weight at 6lbs, 8oz! We go back next week for another prenatal check up.
Don't be afraid, for the Lord will
go before you and will be with you;
He will not fail nor forsake you.
As of yesterday, we are only three weeks until when we expect Noah to arrive! It's hard to believe that it's really coming! While there is a lot to worry about, we are focusing on sending all the worrying up to God. We know He is with us, can do anything at any time, and will help us though this.
Next week we will also have a meeting with genetics. We will be talking with them about testing Noah for the few syndromes that HLHS is sometimes associated with and any other disorders that he might have that led to his HLHS. We've just been assuming that this was a fluke thing that happened, but there are sometimes genetic components to congenital heart defects. So, the more information we have about Noah, the better.
Also, to parents expecting heart babies, check out the Newborn Possibilities Program through the Cord Blood Registry. The program offers up to five years of free cord blood banking for babies born with certain birth defects. We completed the application with our doctor today and are hoping to get approved*.
We got to check out the Yawkee Family Inn through Children's. We will be staying there for a little bit while Noah is in the hospital. The woman we met was incredibly nice and gave us a quick tour. We were really happy that we stopped by to see where it is.
So blessed to be able to receive care for Noah at the best hospital in the country for cardiology!
* Update 8/19/16: We got approved! :)
Wednesday, August 3, 2016
34 Week Ultrasound
All went well again today. Noah is continuing to grow on track. We go back in two weeks for another ultrasound. We only have three more appointments with the OB practice and then it will be time to bring Noah earthside...very exciting, but so scary! We also got to meet two other heart families while we were in Boston today, which was fabulous!
Thursday, July 21, 2016
Noah's growth looks great, he is right on track. Kristina will most likely be induced September 6, and we are now scheduled to go for routine OB visits every two weeks and then once per week starting at 37 weeks (this is all normal practice even with a healthy baby).
We also had a great meeting with Noah's cardiologist at Children's. There were no changes with Noah's heart. His heart has stayed the same since we first found out about it in May. We do not need to do another heart check until Noah is born. When he is born, they will do an echo of his heart and probably a chest xray. This will give them a better look at his heart and will allow them to see how his heart functions outside of the womb, which is much different than on the inside, since now his lungs are responsible for providing oxygen to the blood, whereas in the womb it's taken care of by umbilical cord.
Thank you all for your positive thoughts, prayers, love, and support. We are so grateful! Please keep praying!!
Wednesday, June 22, 2016
We had a really nice visit to Brigham and Women's Hospital, where we found out that Noah is still growing well, and is very active! One of the most frequent comments we get from folks doing ultrasounds is that he is very active and “strong”!
Kristina and Noah also had an MRI as part of a study we are participating in that is seeking to learn more about brain development in babies with certain heart conditions, including HLHS.
Finally, we had a great meeting with the NICU doctors at Brigham and Women’s Hospital. They’re doing upgrades and renovations now, but the new NICU will be ready by the time Noah is born! We are still not sure where we’ll be though; so much is up in the air and we won’t know until Noah is born whether we will actually spend any time there, or go straight to Boston Children's Hospital, or, perhaps, Noah may be able to stay with us in the room where he is born.
We are very encouraged by our checkups, and know that Noah is in the best possible hands! We are still praying for the miracle of a healthy heart when Noah is born, but having so much support from family, friends, and healthcare professionals is very encouraging and makes all the difference!
Thursday, June 9, 2016
Our last checkup at Boston Children's Hospital and Brigham and Women's revealed that Noah is still doing as well as can be with this condition. The main thing being watched right now is the condition of the foramen ovale, which is an opening (a hole) in the wall that separates the two upper chambers of the heart (the "atria"). Right now, the hole is open (or "patent"), which is a good thing because it will need to be kept open after birth.
HLHS Heart Diagram
The foramen ovale naturally closes during the first few days of life (as does the ductus arteriosis), which in a healhty heart is a good thing because it causes the baby's heart to pump blood to the lungs separately from pumping to the body, and this allows for separation of oxygenated and deoxygenated blood. In Noah's case, with a heart with HLHS, if the ductus arteriosis and the foramen ovale are allowed to close, then not enough blood is able to get to the body, which causes the life-threatening situation. This is explained very nicely in this video (from 2:30 to 3:15 in particular, though the whole video is very informative).
Both of these issues are corrected during the first surgery, called the Norwood, which is performed in the first week of life. This surgery is explained in the same video as mentioned above, from 3:29 to 4:38.