Baby Remele Remele Baby Remele

First post: May 10, 2019 Latest post: Jun 17, 2021

Brett and I found out we were expecting baby girl number 2 in September of 2018. Shortly after several follow up anatomy exams in February, we were referred to a Maternal Fetal Medicine (MFM) Doctor for concerns with the baby's heart development. Of course, I am impatient so we scheduled as soon as possible to find out that it appeared she had a Transposition of the Great Arteries, with a smaller right ventricle and a ventricle septal defect (VSD). Unfortunately, the state of Alaska does not have have any pediatric cardiothoratic surgeons so we knew that we would have to deliver and do follow up surgeries out of state. It was suggested that we go where family was available to help support and immediately we decided that we would be headed to Indiana where my family is.

Over spring break, Emryn and I flew down to Indiana to visit with different hospitals and doctors to set up the transfer of care there. After visiting and meeting with different teams, we choose to go with IU Health Methodist and IU Health Riley's Children's Hospital for the delivery and follow up care for our daughter. However, in the process we got a more significant and complex diagnoses than previously thought. It appears that girl number 2 has a Double Inlet Left Ventricle (DILV), with an underdeveloped right ventricle, and ventricle septum defect (VSD). It has been difficult to confirm this as this girl is stubborn and often in a less than ideal position (have you met her parents) and you can only see so much through an ultrasound. The end plan - deliver her as healthy as possible at 39 weeks, see what her echocardiogram looks like at birth, and make a plan for surgery. Typically, with this defect there are a series of three surgeries performed over the course of 2-4 years to create a single ventricle heart system. First surgery, depending on the severity and needs, a pulmonary artery banding and/or Norwood operation is needed shortly after birth.  Second surgery, between 6 months and 1 and half years of age, is a hemi-Fontan or Glenn. Third surgery, between 2 and 4 years old, is a Fontan. 

In the meantime, Emryn and I went back to Alaska to soak up some beautiful weather, time with friends and family, and get ready to relocate to Indiana for at least the summer. There have been continued weekly visits with the MFM doctor in Alaska to check babies growth, biophysical profiles (check for movement and breathing), and make sure I am doing well. Outside of that, this has been a typical pregnancy and really not much in our control other than to continue growing a healthy baby. We officially relocated back to Indiana in the middle of April and Brett will be joining us in the middle of May closer to the little one's due date. 

Since arriving to Indiana, it's been a whirlwind of adjusting to new living situations, spending time with family and doctor's appointments. The positive news - while not much has changed with the diagnoses from our last fetal echocardiogram it appears that the blood flow in and out of the heart looks good, the baby may not need to go on medicine immediately to keep the blood flow open in the heart, and she may only need a PA banding initially which is not considered an open heart surgery. Of course, this is all dependent on the situation when she finally arrives. We also had a fetal MRI to check on her lungs as there can be a concern with fluid build up in the lungs in utero and that can alter the plan. From our fetal MRI, lungs look good, all other organs look good, brain looks good, and to my relief it appears that there is not any cleft of the lip or palate as was brought up recently. From her growth ultrasound, she's a big baby 7lb at 35 weeks but not much concern there as a Emryn was big and there have been no concerns of gestational diabetes, high blood pressure, or other things they look for. In fact, her being bigger is good in this situation as it allows for bigger organs to operate on and a size helps. 

Moving forward, I will go in twice a week to have non-stress test completed and an OB visit each week. We will have another growth ultrasound at 38 weeks to make sure she hasn't grown too much and isn't bigger than Emryn. If I have not gone into labor naturally, I am scheduled to induced on May 23rd at 39 weeks. There will be a team for my delivery and a neonatal team for the baby. When she arrives, she will be stabilized and spend two to three hours at Methodist before be transferred to Riley's. 

This is going to be a long and stressful road. There is still much uncertain moving forward but we are thankful for a lot of things already. We are thankful to be close to family to support and house us, that Emryn will be well loved while we are busy with this one, and that we know ahead of time so we are not thrown into an emergency situation at birth. The more positive news in the last few weeks has been welcomed and we look forward to meeting this little one. All we ask for is prayers and positive thoughts and appreciate the many we have been flooded with already. We will do our best to update as this little one arrives and appreciate you checking in for updates.

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