Before the third ultrasound appointment, Jeff and I reached the decision that as parents we desired to hold and comfort our child as it passed away. We wanted our baby to be able to spend some time with her father, and to be hugged and kissed and told how much we loved her. We decided that at whatever point the doctors felt our baby would pass away, that we would chose a delivery date slightly in advance of that time, by a week or two. We knew that deciding to carry as long as possible risked her passing away before delivery, but we could not attempt delivery without maximizing the possibility of her survival because we knew that when we delivered her life after that would be very short. When we went in we envisioned having maybe another month or so before delivery.
We met with yet another specialist, Dr. O, prior to the ultrasound and told him that we desired to carry our baby for as long as possible, and for her to be as healthy as possible to survive delivery. We told him that our greatest desire was the chance to hold our child while it passed away. Dr. O knew of our situation from discussing it with the other specialists, but had not yet seen the ultrasounds. He assured us that he thought it would be possible to give us a timeline, and that he thought the fluid accumulation would probably not be a problem until later in the pregnancy. He seemed to really understand our wishes, and we felt great going into the ultrasound. After the ultrasound we were to have a meeting with him, a NNICU doctor, and our social worker to discuss a plan. The ultrasound was quick and easy, and we got a great picture of Leah’s face.
During the proceeding meeting we received terrible news. The hydrops had progressed far more than they had expected, leading Dr. O to change his mind about us having an extended pregnancy. Due to the rapid accumulation of fluid in the two week period between our high-level ultrasounds, he declared he did not feel comfortable advising us to wait even another week. In one weeks time Dr. O could not be sure that the baby would be strong enough to survive labor, if it was still alive. He advised us to schedule delivery for Monday (the ultrasound was on a Friday).
This all happened in a meeting with a NNICU doctor, Dr. D. and our social worker. Dr. D offered to be present at the delivery in order to provide us with reassurance and do heartbeat checks. Even though we knew there was nothing that Dr. D could do medically to help our baby, it was so comforting to have a doctor that cared so much about our feelings that he volunteered his time just to hear a heartbeat, something many other people on hospital staff could do. We appreciated his sensitivity and kindness so much.
During the meeting Dr. O and Dr. D went over what to expect after delivery. Whether our baby survived or not, we planned to hold it. Since we had unclear ultrasound images they had to prepare us for an array of possible deformities that our baby might have. They knew that the baby would have a bell-shaped torso, with a small rib-cage and normal stomach. Also, all of the baby’s facial features would appear slightly smashed, from being pushed up against the uterine wall without a fluid cushion. At that point we did not know the sex of the baby, and although they hoped they would be able to determine that at birth, there was a chance that it could be unclear. They also did not know if the baby had hands or feet. If there were hands and feet they could be clubbed or have missing or extra digits. Other possible problems included a cleft-lip/palate, and other missing or disfigured features. We had long been aware of these possibilities. None of them would stop us from wanting to hold and love our child.
After the meeting our social worker helped us prepare a birth plan, and spent time talking with us about the birth. She warned us that we might feel apprehensive about seeing the baby, but not to worry because the baby would look perfect to us (She was right!). We also created a birth plan to bring in with us on Monday. We had thought a little about a birth plan before, and had some ideas about what we wanted. If there were no hands and feet I asked if we could do an alternate print of an ear or the baby’s butt cheeks. That made her laugh. I guess few people are as creative as I am. Truthfully, I just wanted a print, any print, because that is what you do when a baby is born. First you clean them up, then you get them all inky and stamp them on paper. What could be more normal? I just wanted my baby treated as much as possible like any other delivery. And more than anything I wanted proof that our baby existed. Prints are proof.
Leaving the hospital that morning, I felt like I had been broadsided by a bus. I spent the time between weeks 20 and 23 convinced that I could be going into labor at anytime. Then I spent week 23 and part of 24 thinking that we would have lots more time. Then, mid week 24, I found out that time was running out fast. It was a huge mental readjustment from the place where we had been. It was so sad. However, we had prayed and prayed for a clear timeline, and our prayers had been answered very clearly and directly. We finally had the information we needed to make a decision, and after weeks of agonizing we finally felt peace. We began preparing to deliver on Monday.
We met with yet another specialist, Dr. O, prior to the ultrasound and told him that we desired to carry our baby for as long as possible, and for her to be as healthy as possible to survive delivery. We told him that our greatest desire was the chance to hold our child while it passed away. Dr. O knew of our situation from discussing it with the other specialists, but had not yet seen the ultrasounds. He assured us that he thought it would be possible to give us a timeline, and that he thought the fluid accumulation would probably not be a problem until later in the pregnancy. He seemed to really understand our wishes, and we felt great going into the ultrasound. After the ultrasound we were to have a meeting with him, a NNICU doctor, and our social worker to discuss a plan. The ultrasound was quick and easy, and we got a great picture of Leah’s face.
During the proceeding meeting we received terrible news. The hydrops had progressed far more than they had expected, leading Dr. O to change his mind about us having an extended pregnancy. Due to the rapid accumulation of fluid in the two week period between our high-level ultrasounds, he declared he did not feel comfortable advising us to wait even another week. In one weeks time Dr. O could not be sure that the baby would be strong enough to survive labor, if it was still alive. He advised us to schedule delivery for Monday (the ultrasound was on a Friday).
This all happened in a meeting with a NNICU doctor, Dr. D. and our social worker. Dr. D offered to be present at the delivery in order to provide us with reassurance and do heartbeat checks. Even though we knew there was nothing that Dr. D could do medically to help our baby, it was so comforting to have a doctor that cared so much about our feelings that he volunteered his time just to hear a heartbeat, something many other people on hospital staff could do. We appreciated his sensitivity and kindness so much.
During the meeting Dr. O and Dr. D went over what to expect after delivery. Whether our baby survived or not, we planned to hold it. Since we had unclear ultrasound images they had to prepare us for an array of possible deformities that our baby might have. They knew that the baby would have a bell-shaped torso, with a small rib-cage and normal stomach. Also, all of the baby’s facial features would appear slightly smashed, from being pushed up against the uterine wall without a fluid cushion. At that point we did not know the sex of the baby, and although they hoped they would be able to determine that at birth, there was a chance that it could be unclear. They also did not know if the baby had hands or feet. If there were hands and feet they could be clubbed or have missing or extra digits. Other possible problems included a cleft-lip/palate, and other missing or disfigured features. We had long been aware of these possibilities. None of them would stop us from wanting to hold and love our child.
After the meeting our social worker helped us prepare a birth plan, and spent time talking with us about the birth. She warned us that we might feel apprehensive about seeing the baby, but not to worry because the baby would look perfect to us (She was right!). We also created a birth plan to bring in with us on Monday. We had thought a little about a birth plan before, and had some ideas about what we wanted. If there were no hands and feet I asked if we could do an alternate print of an ear or the baby’s butt cheeks. That made her laugh. I guess few people are as creative as I am. Truthfully, I just wanted a print, any print, because that is what you do when a baby is born. First you clean them up, then you get them all inky and stamp them on paper. What could be more normal? I just wanted my baby treated as much as possible like any other delivery. And more than anything I wanted proof that our baby existed. Prints are proof.
Leaving the hospital that morning, I felt like I had been broadsided by a bus. I spent the time between weeks 20 and 23 convinced that I could be going into labor at anytime. Then I spent week 23 and part of 24 thinking that we would have lots more time. Then, mid week 24, I found out that time was running out fast. It was a huge mental readjustment from the place where we had been. It was so sad. However, we had prayed and prayed for a clear timeline, and our prayers had been answered very clearly and directly. We finally had the information we needed to make a decision, and after weeks of agonizing we finally felt peace. We began preparing to deliver on Monday.
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1 comment:
Wow, this is all such a gift. In reading all the journals, we almost feel like we know Leah. Thank you for sharing the pictures and the narrative of this incredible journey. It's like being with you, in a sense,
through each wonderful, frightening, heartbreaking, exhillarating step. As a result, Leah will always be a special child to us as well. Love,
Dave & Andy
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