Katie Rose Maria Rose

First post: Aug 3, 2017 Latest post: Nov 21, 2019
At our 19 week ultrasound on June 21, 2017, our baby was diagnosed with the most severe form of spina bifida. The vertebrae near the bottom of the baby's back (at the L5 level) did not come together properly in the first weeks of pregnancy and part of the baby's spine is protruding out of its back. Spinal fluid is leaking out of this opening which causes the back part of the brain (the cerebellum) to be pulled down toward the spinal column. When this happens, it blocks the proper flow of spinal fluid between the brain and spinal cord and fluid is building up in the ventricles of the brain. At this point, our baby has mild fluid build up in the ventricles. Babies with spina bifida often have trouble walking and issues with their bladder and/or bowels. Traditionally, when a baby was born with this condition, surgery would be done soon after birth to close the opening and often another surgery would be done to put in a shunt to drain fluid from its brain. In the last 20 years, they have been able to close the opening in utero, and are finding that some of the damage is halted or reversed for the baby. This is not without huge risk of preterm labor, rupture of membranes and premature delivery. The average baby who has this surgery in the womb is born around 33 weeks. As you can imagine, this was a very weighty decision for us to make. We felt that we needed direction from the Lord before we could go ahead with this surgery. We felt that He gave us this is a very special way from Psalm 50:15. Tomorrow is the day, may His will be done for myself and for our little one. We are in His hands! We (the baby and I) are scheduled for surgery at the Mott's Children's Hospital in Ann Arbor tomorrow morning, August 2, at 7:30.
I will be under heavy anesthesia throughout the surgery and the baby will also be given medicine for pain. They will open my abdomen completely so that they can lift my uterus out. Then they will move the baby until its back is underneath the part of my uterus where they can make an incision. They will then make a cut in both my uterus and the amniotic sac. Once this is done, the open area of the baby's spine will be exposed. They will then put the spinal cord and nerves back where they belong and stitch them into place. After that, they will put a patch of preserved skin over the opening. The hope is that with time the baby's own skin will grow over the patch. Once the surgery on the baby is complete, they will close me back up one layer at a time. The surgery usually takes between 4 and 8 hours. There will be 2 neurosurgeons for baby, 2 OB surgeons for me, pediatric surgeons, 2 teams of anesthesia for me and baby and lots of nurses in the room. I will be in the hospital until at least next Monday, Aug. 7. Then we hope to stay either in an extended stay hotel here in Ann Arbor or in the Ronald McDonald house for at least the next 2 weeks. I will have weekly ultrasound until delivery. If things are going will, they will let me return home, maybe around the 21st. I will then continue with weekly visits to Bronson Maternal Fetal Medicine in Kalamazoo. There are many unknowns. If all goes very well, I will be on bed rest for the next month, with very limited activity after that and not deliver until 37 weeks. I could also need to have the baby at anytime. My water could break, and I would need to be here in Ann Arbor for weeks in the hospital, Things could go wrong, and I would deliver a little 25 week baby tomorrow! We also could lose this precious little one, and then we always will have and empty hole in our heart and arms. We have no idea what the road ahead looks like. But we know that the Lord sees what we cannot see, and our tomorrows are in His hand. We have received many offers of help from family, friends and our church community. We are so thankful and feel overwhelmed! At this point, we have a plan for the care or our children at home and myself for the next 3 weeks. Our future is very uncertain, however, and the time of help needed may be greatly increased if I need to stay in Ann Arbor longer. We will update you if we have needs that are unmet.

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