Thursday, July 1, 2010

Thursday, July 1, 2010

Today we had our marathon of appointments in Ann Arbor. This will be another long post, but the abridged version is that everything went well and once again, we were very, very impressed with all of the people we dealt with.

As you may have noticed, I did not post from my appointment on Tuesday. So, in typical Jen fashion, it's here, but late. Once again, the baby did not feel like participating. If the nurse buzzes him with the noise/vibration stimulator, he jumps and wiggles, but his heart rate never goes very high. He will move and wiggle, screwing up the monitoring, but never provides the nice rise and fall they are looking for. This week there were no major contractions though, so that was promising. The doctor is not necessarily concerned about the less than stellar performance of the non-stress test. The baby may be too young still or too mellow.

Now for today's news. We got to Ann Arbor for our first appointment at 8:00 am. We met with the genetic counseling department. We found out that the heart defect is probably due to "multifactoral" conditions. This means that we have ruled out the chromosomal causes and the most common gene related causes as a result of our normal amniocentesis results earlier this spring. Because I had no exposure to any teratogenic things (x-rays, chemicals, drugs, etc), that leaves the multifactoral cause. The general idea is that a bunch of little things happened at the same time the heart was forming to cause the defect.

Our second appointment was with the obstetrics department for an ultrasound. The baby is measuring exactly on schedule (to the day) and is estimated to weigh 4 pounds, 4 ounces. Everything looks great with the exception of his heart.

Our third appointment was with the obstetrics doctors. They have scheduled an induction for August 16th, when the baby is 39 weeks old. If I go into labor before that, we will check in with our local doctor or the hospital to determine if we make a mad dash to Ann Arbor or if we stay here. This is a great compromise as far as we are concerned. If the labor is induced, we will most likely go to Ann Arbor in the afternoon or evening of the 16th and hopefully, the baby will be born on the 17th. This will be one day before Maeve's birthday. If you are counting, that will mean we have a boy and girl birthday in February and a boy and girl birthday in August. Now Phil and I will never get the right birthdate for the right kid.

After our appointment, a nurse took us on a tour of the floor where the baby will be born. We will move to a traditional delivery room (where they do Cesarean sections) because they are located right next to the Neonatal Intensive Care assessment area. If he is pink and doing well, we will get to spend some time with him before he goes to the NICU. He will then stay in the NICU until his surgery.

We finally finished up at around 12:30 and headed to lunch before our next appointment.

Our next appointment was with the Pediatric Cardiologists. They did a fetal echocardiogram and determined that everything looked the same as last time. There were no changes and no new problems. We finished early and headed off to meet with the Pediatric Cardio-thoracic surgeon. They even got us in early!

The surgeon was VERY impressive! He walking in and introduced himself as "Rick". He gave us his email address and told us to contact him if we have any questions. He told us that he does the work that he does because he loves it. He explained the condition and how he would fix it. The overall picture was the same as we learned previously. While it is a serious heart condition, it is not unusual or especially tricky to fix.

The first surgery will probably be between two to seven days after the baby is born. The surgeon said that he will probably perform the pulmonary artery banding instead of the shunt. The baby looks like a good candidate and the surgery has fewer complications. He told us that the recovery time was around 10 days. The baby will go to the Pediatric Cardio Thoracic Intensive Care Unit (PCTU) until he is stable enough to be moved to the general care area. The surgeon said that if I can carry the baby until at least 36 weeks, we should be in good shape. That is only three and a half weeks from now!

When we finished, the Pediatric Cardiology social worker took us on a tour of the PCTU and the general care area. In the PCTU, the nurse/baby ratio is 1 to 1. When the general care area, a parent is allowed to stay overnight in the room and take over the majority of the standard care for the baby. This is when we can start trying to get him to eat properly and get him ready to go home.

We found out that we will be able to be with the baby anytime we choose to, as long as they are not performing a procedure on him or the babies around him. This was a huge relief for me. Siblings are even allowed to visit in the intensive care areas if they are healthy. We have been pleasantly surprised by the concern for the entire family, not just the clinical health of the baby. We toured the family area as well. There is a craft room that has a three hour program for siblings each day and an outdoor play area located on the rooftop of 7th floor.

We are not scheduled to go back to Ann Arbor until we go for the induction. The obstetrics people said that they only wanted to see me if the cardiology people were having me back. The cardiology people only wanted to see me if the obstetrics people wanted me back. No one really wanted to see me, so we don't have to go back!

Before we left, we went to the Ronald McDonald house and asked to be put on the waiting list. They have 29 rooms, charge only $10 per night and are located about a ten minute walk from the hospital. The place was wonderful. About five nights per week, community groups, churches, etc. bring in dinner for the residents. There is a large communal kitchen and dining area. There are refrigerators and lockers to store supplies. There are family areas, a game room and a playground. Hopefully, we will be able to get in and stay there.

We left Ann Arbor feeling more hopeful than we have in a long time. We are even going to let Ella, Sam and Maeve pick out an outfit to bring the baby home in. Considering the rollercoaster this pregnancy has been, this is a major milestone. We know that we have a lot of trials and tears to come (we didn't make it without tears looking at other people's babies today!) but we have hope and feel that we couldn't be getting any better care. God has taken care of us this far, and we know that however this turns out, he will continue to be with us and give us the strength we need. We have been blessed with a family and friends that other people only dream about and we truly want to thank you for your thoughts and prayers!

1 comment:

  1. So encouraging and sounds like you're being so well cared-for! That's wonderful!! Can't wait to see Sherbert......and love him up.