Saturday, August 17, 2013

The fetal intervention

Monday, August 12th, was an amazing day.  It was such a mix of emotions; apprehension, fear, excitement, hope, but it turned out wonderfully.  Here is the whole big, long story...

We headed to the hospital at 7:00am in the pouring rain and almost rear-ended the same BMW twice which added some totally unnecessary excitement to the morning.  First stop at the hospital was at the lab to get my blood drawn.  Then it was up to the Fetal Diagnostic Center to have an ultrasound.  The ultrasound showed that the function of Caroline's left ventricle had decreased even further since the last check and blood flow between the atriums had fully switched and was now going left to right.  Definitely not something that we wanted to hear but it reinforced that we had made the right decision to have the intervention done.

We then met with doctors from both the pediatric cardiology department and the fetal diagnostic center to go over the procedure, associated risks, and any questions.  I was able to meet with the hospital chaplain and receive anointing of the sick along with a special blessing for Caroline.  Even though I was nervous about the procedure and the risks involved I definitely had a sense of peace and hope and was ready to get things going.

I was taken to pre-op and met my awesome nurses.  I cannot say enough how fantastic everyone at Mott Children's is.  From the surgeons, to the anesthesiologists, to the nurses, to the greeter at the front desk, they are all so personable and kind.  My procedure was scheduled for 12:30pm and Ryan was able to stay with me until I was taken into the operating room.  It was a bit odd for me because the procedure was not performed under general anesthesia.  I had an epidural and was completely awake the whole time.  I guess we are somewhat of a special case because the operating room was PACKED.  There must have been at least a dozen other doctors and medical students in there not including my doctors and nurses.  I was moved onto the operating table and then the fun began.  The first and most important step was for the doctors to make sure that Caroline was in the right position for them to do the procedure.  And of course she was not.  I lay on the table for about two hours while the doctors manipulated my stomach and tried to get her to move.  Finally it was decided to move me to recovery and wait to see if she moved on her own.

I got to recovery around 3:00pm.  Ryan was there waiting for me.  The doctors told me that they would give us until 5:00pm and if she had not moved we would need to come up with another plan, like coming back the next day.  Whatever other medicine they had given me in addition to the epidural made me very happy and squinty eyed, so the time passed fairly quickly and with little stress (Ryan laughed at me a lot.)  Periodically a doctor would come in and do another ultrasound to check her position.  One doctor tried to get us a 3D image of Caroline's face but she was not cooperating.  All we got to see was her ear and a LOT of hair.  It will be interesting to see if she keeps it as all the babies in my family have been bald, bald, bald.

Caroline finally moved around 4:30pm into the "perfect" position and I was ushered off to the operating room again.  Back in the OR with all my medical friends I was asked to move very carefully back onto the operating table.  I tried to move as carefully as one can when one's legs are useless pieces of lead but Caroline decided that this was her cue to shift out of her "perfect" position.  It took another half hour or so of coaxing for her to move again and then there was a sudden rush of activity.  Doctors shouting that we had to go NOW and giving instructions, nurses holding my stomach so she could not move again, and anesthesiologists telling me that they were working to get me more medicine as fast as they could but that the doctors needed to start the procedure right away.  I was amazed at how calm I was.  Up to this point there had been no drapery put up so one was erected and we were off and running.  Thankfully the meds had taken full effect and I just laid there listening to everything going on.  An incision was made in my stomach and a needle was then put through Caroline's chest into her heart.  A balloon was then threaded into her aortic valve and inflated three times to help widen and loosen the valve.  The doctors were all very professional throughout the whole thing and Caroline handled it very well.  The doctors were able to see an immediate improvement in blood flow through the aortic valve and they all sounded very excited, one of them said something about what a "slick" job they had done:)

I was back in recovery around 7:00pm and was met by Ryan and our parents.  Unfortunately I had to stay in the hospital until almost 11:00pm because of some nausea but other than the doctors and nurses were very happy with how Caroline was doing.  Ryan and I came back the next morning for a follow up echocardiogram.  All indications were that the procedure was a success.  There is increased blood flow through the aortic valve and the aortic arch, and we are back to bi-lateral blood flow between the atriums (not ideal but better than flowing from left to right.)  By having this procedure we have given the left side of the heart a chance to heal itself and now we just have to wait and watch.  There is still the risk that Caroline will develop hypoplastic left heart syndrome but the success of the fetal intervention has lessened it.  We are so thankful and blessed to have such an incredible medical team on our side.  And the support from family and friends is overwhelming as always.

On a sad note, Ryan left for Rome on Thursday.  He is settling back into our apartment and life as a temporary bachelor.  He will continue to work in Italy until closer to the baby's due date in October.  I will remain here in Michigan and continue to be seen by the doctors at Mott Children's.  Caroline's condition will be monitored through regular echo's and ultrasounds.  We will continue to keep you all updated.  Thank you again for everything.

Caroline's new onesie from University of Michigan CS Mott Children's Hospital.

Thursday, August 1, 2013

The terrible, horrible, no good, very bad day

It's been three weeks since our last fetal echocardiogram at Mott Children's.  Our spirits were  bouyed  by the impressive facility, amazing staff, and positive outlook.  We spent these last three weeks visiting with family and friends, shopping for the baby, and even having a baby shower, something I was very hesitant about.  I was finally feeling comfortable with the pregnancy and the diagnosis.

Then, on the 31st, we had our second fetal echocardiogram at Mott's.  Things did not go so well.  Heading to the appointment I felt ready for whatever news they had for us.  I felt like we had already run the gambit of emotions, from our devastating diagnosis in Italy to our more encouraging echo in Michigan.  I was sure I could emotionally handle anything.

The echocardiogram went as normal and afterwards we sat down with the head of the pediatric cardio department to discus the results.  Caroline's condition has gotten worse since the previous echo three weeks ago.  Her condition is evolving from aortic stenosis into hypoplastic left heart syndrome (HLHS), a much more serious defect.  In hypoplastic left heart syndrome the left ventricle doesn't develop properly and the baby is left with only the right side functioning.  A series of heart surgeries are required to essentially reconstruct the heart and make it functional.  The first surgery usually takes place within 7 to 10 days after birth.  Hypoplastic left heart syndrome if left untreated is a uniformly fatal condition.  The outlook for babies with HLHS improves as they get older and if the baby makes it to three years old their survival rate drastically increases.

This new information was extremely difficult to hear.  I thought I was ready for anything but I wasn't.  I guess I was just hoping that everything had stayed the same since the last appointment.  I held it together until about halfway through the consultation and then became a weepy mess.  Ryan on the other hand was awesome as always and asked all the right questions.

They also informed us that we are now candidates for fetal intervention.  The doctor told us that Boston has the most experience this procedure but that Mott's has done several as well.  The  procedure is high risk for the baby, but if it is successful will decrease her chance of developing hypoplastic left heart syndrome by half.  Without the fetal intervention she will almost certainly lose function on the left side of her heart.  Fetal intervention can only be performed within a certain window of time so if we opt for the procedure it will happen within the next two weeks.  Our file is being sent to the doctors in Boston to get their input on the situation.

We have been left with a lot to think about and some very large medical decisions to make.  Please keep us in your prayers.  All of your support so far has been incredibly helpful and it is reassuring to know that Caroline has so many wonderful people praying for her.  I am sorry if I have not gotten to responding to all of your comments and emails, I am working on it.  Please know that they are important to us and mean a lot.

We heard back from the doctors at Boston Children's.  They agree that we are excellent candidates for fetal intervention and see no reason why it cannot be performed at Mott Children's.  After much consideration we have decided to have the procedure done.  It will most likely be scheduled for August 12th.
Sweet Caroline