I am currently 32 weeks pregnant with Baby boy Kerr! He is a busy boy. It seems as though he is never still! It is such a blessing to feel all his movements, especially knowing that his time on earth will be short. I have the constant reassurance that he is still alive with every kick. I am so thankful that I never have to wonder if he’s already gone to be with the Lord.
God is so good to us during this trial. We have given our special boy a name, and are looking forward to sharing it after he is born. In the meantime, we have been busy enjoying every moment with him while we can. We took him (and his big sister, Shiloh, of course) to Disneyworld, because we know that he will never get the chance once his is on the outside. We also went to the beach and enjoyed the warm water and the sand on our toes! We want him to have a special time on this earth. He is very much loved.
We had an amniocentesis done in early May. We’ve been told that there is nothing in his chromosomes that contributed to him having anencephaly. We are so thankful for this news! God is so good!
I have been feeling as though my belly is expanding more quickly and it feels quite tight (more so than my pregnancy with Shiloh). I have also been having many Braxton hicks contractions, some have even been quite painful. For these reasons, my doctor scheduled an ultrasound for early July. It was confirmed that I have polyhydramnios, or excess amniotic fluid. Right now my level is moderate. We knew to expect this because baby boy does not swallow. For now, we will continue to monitor the polyhdramnios based on how I’m feeling. If I begin to feel more uncomfortable I can choose to have a procedure to remove some of the excess fluid. There is a small risk of premature labor from carrying the extra fluid, but having the fluid removed carries the same risk.
Last week we met with our doctor and filled out the delivery consents and had a general check up. My health is still great and baby boy is doing great as well. We got an impromptu ultrasound because the nurse could not locate the baby’s heartbeat with the Doppler. We were thankful for an extra glimpse of our boy!
When you have a pregnancy where the child is not expected to live, the hospital arrange meetings with a special group called the palliative care team to help decide options for baby boy’s delivery and care plan. The palliative care team included a neonatologist (one I know from my previous job), a social worker, a NICU nurse (one I know from my previous job), a child life specialist, and Life Gift (organ donation organization).
- Neonatologist/NICU nurse: They will attend the delivery to assess baby boy. They will also help to make sure he stays as comfortable as possible during his short time with us.
- Social Work: She will help us to make sure all of our wishes are carried out. They will also help us with plans for after baby boy has gone to be with the Lord.
- Child life Specialist: She will help with memory making and help us with Shiloh
- Life Gift: They attended the meeting because we expressed our desire to donate baby boy’s organs to help save another family from experiencing the same pain we are experiencing. Unfortunately we found out that organ donation in that way will not be possible. The institution where we will be delivering does not allow that type of organ donation from an anencephalic infant due to ethical concerns which we support after discussing with them.
We are now busy working on developing a birth plan from the packet they gave us to fill out. It has every detail you can imagine. We can make special requests for photographs we want to take, special keepsakes of baby boy, how we want to include Shiloh, and many more things that I had not even begun to think about.
Thank you so much to all of our friends and family for checking in on us and for keeping us in your prayers. We are so thankful for each of you. Please continue to keep us in your prayers! Please continue to be in prayer for our family.
Specifically pray for:
- Safe delivery and speedy recovery for me
- That baby boy will be born alive and that we will get to spend some quality time with him
- That we will continue to praise God at all times and that our response during this trial will reflect his goodness
Hike the Good Hike,
Sherpa and Porter