So here we are in Bloggers world... There are so many people that we want to make updates and information available to that keeping up with sending emails to the mass of people was becoming impossible. In the coming days/weeks/months we will use this blog to share updates, information and stories on Baby Kate's situation and the happenings of our family.
The message below is the latest email that was sent on Thursday, September 27th. More posts will come as Matt and I are able to write them and updates with Kate's situation become available.
Hey Everyone,
We wanted to updated you after our day in Iowa City at the University of Iowa Hospital. It was a marathon day -- leaving our house at 5:30 am and returning home at 7:00 pm with non-stop testing and doctors visits from 8:00 - 5:00.
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If you did not receive the initial email we sent out yesterday, here is a super brief update...
Tuesday I went in for a routine OB appointment during which they wanted do a quick ultrasound to check the amount of my amniotic fluid. With both of the boy's pregnancies I carried excess amniotic fluid and wasn't showing clear signs of doing that with this pregnancy. An ultrasound at 34 weeks is not routine and many docs likely would not have been interested in the fluid levels since I am measuring on-track for normal fetal growth.
Thank God they did the ultrasound! They noticed Kate's heart was enlarged and that there was some abnormal vascular activity in her brain. I was immediately walked over to a perinatal specialists office who did another ultrasound and told us that Kate has a very rare aneurysm in her brain called the Vein of Galen Malformation. The odds of this malformation is 1 in 100,000 to 1 in 1,000,000 and given the size of Kate's aneurysm we're on the 1 in 1,000,000 range. We were immediately referred to the University of Iowa Hospital which is where we spent yesterday...
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Our first stop of the day with with Maternal Fetal Medicine (High-Risk OBs). They performed an ultrasound to confirm the findings of the previous day, observe the aneurysm and check the situation of her heart condition and general blood flow levels. Their feedback was that they were very concerned by what they saw and are first and foremost focusing on the condition of her heart. Any type of fluid around the heart can quickly lead to congestive heart failure (called hydrops) and can very negatively affect the situation and Kate's outcome. We left this appointment with a feeling of urgency that the doctors may decide Kate needs to be delivered in a matter of days...not the weeks were thinking/hoping for.
From maternal fetal medicine we were sent to a pediatric cardiologist who performed an echo cardiogram to take a detailed look at the current condition of Kate's heart.
(The cardiologist commented on the number of ultrasounds I had had in the past 24 hours...I told him I was fairly certain I could make it to the end of a dry slip-n-slide with the vast amounts of "goop" that had been smeared on my belly in the past day!--It's a challenge, but we're trying to outnumber tears with smiles.)
The peds cardiologist was a super nice guy and gave us a relatively positive report. Structurally Kate's heart is normal...it is just about twice the size it should be because it is having to work so hard to circulate blood to and from the aneurysm in her brain. When/If we can repair this problem and avoid any other complications it is expected that Kate's heart will either shrink to back to it's normal size with the release of the pressure or that she will grow into it -- maybe even in the first 6 months to year of her life. The doctor did not see any leaks in the valves due to the size of heart or any other seriously alarming signs of the immediate onset of hydrops (fluid around the heart) so his concern of an immediate onset of heart failure decreased. He decided that very close monitoring was the best course of action at this time and that we just MIGHT get a few more weeks in utero for Kate to grow and mature her lungs. We left this appointment on a high!
From there we were seen by a neonatologist who will be in charge of Kate's care after she is born. His visit was sobering. He reminded us how rare this malformation was and how complicated the entire situation is to manage and treat. He clearly informed us that when Kate is born she will be in NICU Bay 1 which is reserved for the sickest babies in the hospital. Should everything go well in the first 24-48 hours after she is born we are looking at least a number of weeks in the NICU (hopefully not months). During this appointment we were also assigned and met a social worker who will manage our case and provided us with some good resources as we begin this journey.
Our last stop of the day was back in the maternal fetal medicine ward for a wrap-up with our high-risk OB (Dr. Krupp). She had been on the phone gathering results from our team all afternoon. The team is not yet in consensus on the best time Kate should be delivered. They will continue reviewing the case today and tomorrow and hopefully come to a consensus...if not, they will present us with options on Monday when we are back in Iowa City and we will go from there. (Dr. Krupp did mentioned that after their discussion, the cardiologist thinks we are looking at a week...MAYBE two before she will need to be delivered so I guess we will be meeting our baby girl sooner rather than later.)
Dr. Krupp had also been in touch in the neuro department. The specialist that will be performing Kate's surgery is an Interventional Radiologist. (This type of abnormality is typically no longer treated by Neurosurgeons who do invasive brain surgery -- instead, most often catheterization is used to conduct an embollization which will stop the irregular blood flow in the brain.)
It is certain that Kate will be delivered by C-section. The entire team will be in the room for delivery and depending on her condition, she will likely be taken immediately by the Interventional Radiologist and Peds Cardiologist for surgery. The plan is to cut the umbilical cord long and use that to snake the catheter to her brain. Kate's aneurysm is large...we got the impression it may be one of the largest the team has seen. They will not be able to treat it with one procedure so the radiologist will insert one emboli and the cardiologist will then immediately check her heart function (apparently she may experience some relief immediately). This will be repeated as necessary (and as able).
At this point we were told very frankly of the severity of the situation and procedure. If there are no other respiratory or cardiac complications when she is born they are giving Kate a 50% chance of survival. We are hoping, praying and having faith that we will be on the right side of that coin flip!
Where we go from here...
Yesterday the docs gave me a the first of two steroid shots to boost Kate's lungs development and prepare her for a likely pre-term delivery. I have appointments today in Des Moines for an NST (non-stress test) to monitor Kate's movement and heart rate as well as the second steroid injection. Tomorrow I go back to the perinatal specialist (in Des Moines) for an ultrasound to monitor the function and fluid levels around her heart. Monday we are back in Iowa City for another ultrasound, echo cardiogram, meeting with the high risk department and meeting with our entire team of specialists. *(With all of the ultrasounds Kate has had already we have dubbed her "our most photographed child" which is hard to beat given the number of photos we have of our boys!)
Matt and I have been told to pack our bags now as any day, and any trip to Iowa City could be delivery day.
As scary as this situation is we also have found so many blessings:
--We found this early! The size of the aneurysm is such that had it gone undetected it very likely may have ended Kate's life before she was born and potentially soon after she was born. At least now we have a great team in place, have a plan and Kate has a chance!
--University of Iowa is one of only a very small handful of hospitals (like four) to which patients are referred for a situation like this...we feel like we are in the right place with the right people!
--Friends and family have been coming out of the woodwork with love and offers of help! *(Special thanks to Claire and Michelle who helped out in our clutch situation with the boys on Wednesday! We, and they love you both!)
We feel so loved, and while we're not quite sure what we need right now, we will need you whatever Kate's outcome is. It will be tough either way.
Thank you for your thoughts, prayers and for being the special people you are to us,
Much love,
Matt, Betsy, the Boys and Kate
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