Hard to believe I am writing on this blog again. I thought I left it behind after Olivia’s twin sister Allie died during the last pregnancy. And when we learned of Avery’s diagnosis 19 weeks ago, I had no intention of writing on this. Even a few weeks ago when Jessica told me she had written here, I had no intention of even looking at the blog…much less writing on it. But here we are. I am going to tell my version here, more for my own processing of these events than anything else. Read if you want. Skip what you want.
I. THE EXTENDED BACK STORY (IN AGONIZING DETAIL)
Jessica first told me of the pregnancy when I was in Houston teaching for our dear friends’ (Kyle and Melissa) Optometry Board Prep Course. Kyle was with me, while or wives and children hung out together back in Nebraska. Somehow Melissa knew Jessica was (less than 4 weeks) pregnant and encouraged her to take a test. I think that is the day I became a true believer in women’s intuition…although Jessica had no idea she was pregnant until the test was positive. She cried about having to tell me over the phone. For women who want to avoid this, I would suggest not taking a pregnancy test while your husband is out of town. Nonetheless, we were ecstatic.
When I got home, of course we were all thrilled…though perhaps no one more than Emily. She was jumping up and down with excitement. As I have told many people, I told Emily that Jessica and I would need to make sure she was strong enough before she would be able to hold the baby. The next day when she awoke, she immediately told me she wanted to go down to the unfinished basement (aberrant behavior for a child who loves her breakfast first thing). She told me we both needed to work out. Picking up Jessica’s 5 lb. weights, she curled them to shoulder level, then pressed them over her head. Then she was done.The event was joyous for me and Jessica as well. We had long discussions about whether or not to even try to get pregnant or to pursue adoption after the twin-twin pregnancy last time. Seeing the toll it took on Jessica, me, and us, I was reticent to take the proverbial leap. After much prayer and talking with Jessica though, we had made the decision to try. We had no rational reason for being anxious in November, but I was guarded. When we learned of the twin pregnancy last time at 14 weeks, I had serious misgivings that also had no rational basis. One of the lessons to me after it was said and done was that things usually turn out right…but that I shouldn’t ignore misgivings. In November I had no specific misgivings but still noticed my enthusiasm was dampened relative to the last two pregnancies.
The weekend of January 7 I was in Columbus Ohio and Jessica didn’t tell me when we spoke on the phone that she felt something abnormal that made her worry she might have a problem with her pregnancy. When I arrived home from the trip, she shared her feelings and it was clear she would have no peace of mind until we got in for an appointment. They set her up for an ultrasound and appointment the morning of Tuesday, January 10. Frankly, Jessica was concerned that the problem might be with her cervix; I had little concern anything was wrong because I thought there was no way that kind of problem would show up this early. An hour after her appointment time there, my MA at work pulled me out of a room. Her OB, Dr. Jacobi, was on the phone telling me I needed to come over to her clinic. Sensing my confusion, she explained that there were concerning ultrasound findings and Jessica was beside herself. My clinic canceled my appointments for the rest of the morning and I got over to the Women’s Hospital clinic as quickly as I could. From then on, all appointments were scheduled on Tuesday afternoons (my afternoon off).
Jessica remembers that morning how she appreciated my calm demeanor and reassuring her that we would get through this. I remember saying that we didn't have a diagnosis and that until we did not to panic. However, I also remember frantically calling friends on the way to and away from the hospital. And I remember Jessica apologizing again and again, saying that we never should have tried to get pregnant again. Of course, how could she know this would happen? (The statistics of this were terrifically unlikely. Eventually I would learn that the likelihood of a twin to twin pregnancy followed by Trisomy 18 is somewhere in the neighborhood of 1:5,000,000.) I was glad that she and I had discussed it as much as we had; we went in with our eyes open. Admittedly, neither of us knew what was ahead.
Two days later we sat with the perinatologist who explained that the abnormalities required surveillance but were by no means diagnostic. In the two weeks that passed before we saw him again, we enlisted the prayers of family and friends. To our amazement, on January 26, the size of the abnormality seen on the first ultrasound had returned to being within normal limits! We left overjoyed that the chance of our baby having a chromosomal abnormality (the most likely of which was Down’s) had returned to average for the population.
In the days from the first ultrasound to the repeat, I felt a kind of callous resignation. When on January 26 we learned we were back to average risk and just needed to return in another four and a half weeks to recheck the 18 week ultrasound, I was happy. Still, in the back of my mind, I wouldn’t let myself rule out the possibility of something still going wrong. No point dwelling on it until I had more reason to dwell on it.And that brings us to the 18 week ultrasound, where substantial cardiac defects, brain and skeletal abnormalities were strongly suggestive of chromosomal problem. In a matter of 60 seconds, we went from normal to the need for amniocentesis. As the doctor was getting his materials for the procedure, the clinic manager came in to tell us the more than $1000 procedure would not be covered by our insurance. Methodist’s insurance. At the clinic attached to the hospital for women and children. Rrrrrrrrright.
Jessica learned of the Trisomy 18 diagnosis at 3 p.m. on a Friday a week and a half later…two and a half hours before I got home from work. I have little recollection of the events that followed. Steve and Terry Walters (family friend and mentors, and Steve officiated our wedding) spent much of that weekend comforting us and our family, and we are forever grateful for their availability at a moment’s notice, their wisdom, and their genuine care.
The weeks that followed were marked by a deep hurt that was easy to repress amidst the needs of my family. Jessica’s tender heart was wounded, and I love being her protector. We struggled to find the balance of honoring her wish not to be out in public and be asked by well-meaning people about her pregnancy with the need to avoid isolating ourselves from our support network. Much prayer, time spent with her family, friends, bible study and mentors has done amazing things for Jessica. I was able to avoid confronting my own fears, pain, and doubts for the most part. While so many men around me offered their time and counsel, for the most part I have chosen to focus on the needs of Jessica and the girls. It has been good to be reading through the bible in one year with our church, and until the last month or so, I have continued singing with our worship team at church. Still, I was consciously making a decision not to deal with this pregnancy emotionally or spiritually until I had to.
From a planning standpoint, Dr. Jacobi has managed Jessica like a normal pregnancy with a couple exceptions:
1. We have seen her every two weeks since the diagnosis (our request, she has been as
much counselor as physician)
2. With Avery’s multiple problems, Dr. Jacobi recommended not monitoring Avery during labor. As it was, Avery has been at risk for dying in utero and was at high risk during labor. Dr. Jacobi thought that risks of proceeding to C-section due to fetal distress would outweigh the potential benefit, and we agreed.
3. We met with the comfort care team to prepare for how to make the hospital experience and the short time we would have with Avery everything it could be.
We set the induction date of this last Tuesday on July 3. Even then, it didn’t really hit me how close we were getting until a week out from induction. After all, life had reached a steady state of pseudonormality. From about 26 weeks on, Jessica felt mentally much better than she had initially. She was feeling Avery moving frequently and Emily was loving it. (We chose Avery’s name by around 28 weeks and let people know because we had no idea whether she would ever be born.) Jessica was measuring near normal and felt all the normal symptoms of a normal 3rd trimester pregnancy.
But when July 10 came, suddenly the mental countdown started. We had read the statistics: 50% of babies with Trisomy 18 are dead by 7 days, 90% by one year. Most of the 50% who pass within the first week actually die within the first few hours due to heart defects like Avery’s. So it felt like less than a coin toss’ chance of her surviving a day. Still, Avery had been a living part of our family for 37.5 weeks, we had felt her moving and had been treasuring it for several months. She is an important part of our family, and however short the time, we were already used to her. Anxiety mounted as the veil of pseudonormality evaporated. We weren’t counting down to her birth; we were counting the days until her death.
Up until last week, Emily had been seemingly unfazed by the gravity of Avery’s condition-- even though she understood that Avery might die before she was born and told her friends the very same blunt facts. Thursday night, Jessica was at a planning meeting for the MOPS (Mothers of Preschoolers) group she helps lead at church. The girls and I were going through our usual bedtime routine with Bible story from the Jesus Storybook Bible, then prayer and putting Olivia to bed before going in to listen to Emily negotiate her way into reading another book. After Emily and I finished Fancy Nancy: Posh Puppy, she was talking about Avery and getting ready for her arrival (as she has done almost daily for the last 4 months). I was again explaining to her the situation with not knowing whether we would meet Avery alive. Picturing Emily’s grief at the moment she would first discover that Avery had already passed, I began to weep knowing how much she had anticipated her baby sister's arrival.
Seeing me cry got to Emily. She turned away from me, but when I apologized for crying and asked if it made her uncomfortable, she just nodded her head, “No.” She faced away from me for a few more minutes, before rolling on to her stomach with her head buried in the pillow. Her shoulders began to shake seconds before the great sobs came. For another fifteen or twenty minutes she cried, turning away from me when I tried to hug her or talk to her. Never having seen her like this, I even asked at one point if she wanted me to leave. Again I got the head nod. Eventually, she did turn toward me but kept crying. And when she was finally able to utter the words, “I just wanted to be a big sister to a baby so bad,” we both began to sob. She collapsed in my arms. No longer could either one of us ignore our feelings.
The next night at bedtime, we finished the Bible story and said prayers. Even though we had prayed for mommy and Avery on countless evenings before that, the events of the previous night no doubt led Emily to ask, “Daddy, when we pray does it work?” Uh oh. “If we ask God to make Avery healthy, will it work?” And again, though more matter of fact this time, “I want to be a big sister to a baby so bad.” I had no easy answers but felt a kinship to her in hearing her ask that question. What followed was not rehearsed but felt more like an explanation I was hearing for the first time too. I told her that our prayers are conversations with God, and that in a relational sense the prayer itself is valuable for us and God. He most wants us to relate to and rely on him, so that kind of prayer is pleasing to him. And I said that sometimes it does work in the way we want it to. In my experience, prayers for this kind of healing for the most part though are not answered in the way we want. I told her that when Emily asks her earthly parents to do things, we don’t always say yes. And when we say no, she doesn’t always understand why. Still, she trusts that we love her.
Far from perfect, it is an explanation that gives some perspective but leaves much to be desired. This isn’t us asking God to do something he cannot do, nor something that is contrary to his will. And to be honest, the “spiritual” answers that made sense to me when we went through Allie’s death no longer satisfied. I stayed up Friday night thinking that this was exactly the reason I had avoided dealing with my own feelings about Avery and this pregnancy. Deep down lies the fear that some part of my faith died the day we learned of Avery’s diagnosis.
Starting Friday night, I sat down at the piano to try to make sense of things. A very simple chord progression without words felt like it was expressing something inside me. Saturday night at bedtime, we (coincidentally) read the story of Jairus’ daughter from their bible. Someday I may share more of the exact wording, but sufficed to say for those not familiar with the story that it recounts the miraculous healing by Jesus of a young girl already declared dead. More to the point this time, Emily asked, “Dad, why won’t God do what we want him to?” She just cut right to the core of the issue with the same bottom line question I refused to admit I was asking. Ironic that my five year old was the one with the courage to say it out loud.
As I sat at the piano late Saturday night, words began to come to the simple chord progression. Slowly it began to don on me that this was a song for Avery’s funeral. The words came from my heart, from Emily’s question, from the story of Jairus’ daughter. And in the midst of it, I got the first glimpse that maybe I could do more than just survive through this process. Oh, and I forgot to mention this was happening while I was on call last weekend. 49 calls and six admissions left me rather tired by Monday, but I fortunately I have this whole week off.
ALRIGHT, IF YOU HAVE BEEN SKIPPING TEXT BECAUSE YOU JUST WANT TO KNOW WHAT HAPPENED SINCE TUESDAY, BEGIN READING NOW!
II. THIS WEEK (IN AGONIZNG DETAIL)
Tuesday morning at ~6 a.m. we arrived to the hospital. The pitocin (to facilitate labor because Avery was so high in Jessica’s pelvis) was running by 6:45, and Dr Jacobi arrived to break Jessica’s water by 8:30. At 11, Jessica was 5cm and getting closer. The plan was to check again at noon and if she was 7cm to call Jessica’s parents to bring the girls. Aside from Jessica’s health, my biggest concern for things we could reasonably hope to control was that the girls be at the hospital (not in the room) at the time of delivery to maximize the chance they could meet her before she died. At noon, Dr. Jacobi said, “You’re going to have a baby.” I am by no means an OB but felt I already had a grasp of that insight. She then clarified what she meant in saying, “Avery doesn’t have a lot of hair on top of her head. I am looking at it right now. It shouldn’t take more than a push or two.” After frantic calls to our dads, I thought I was going to vomit. No amount of preparation actually had us ready for that moment. On top of fear for my ability to remain composed was the fear of Emily and Olivia missing their sister alive. With Jessica, Dr. Jacobi and our wonderful L+D nurse Abby looking at me, the question was whether I wanted to wait. It felt like a silly question, and ½ a push later, Avery was out at 12:08. 5 lbs, 2 oz., 17 inches.
She was so blue and was gasping for air but was alive. After Dr. Jacobi cut the cord, she immediately gave Avery to us and we sobbed as we felt her slipping away from us. It was a crazy mix of joy, sorrow, and desperation at the fleeting moments. After I steadied myself, the girls arrived within a couple minutes and I went and got them to bring them in. Olivia I had to pull and Emily I had to keep from running. We had a good while with the four of us. Our friend Melissa (the first one to know of Avery’s existence, even before Jessica) was there capturing every moment. She took pictures of us, the kids, our parents, and everyone who came into the room.
As I mentioned in an email some of you may have seen, I literally was counting the seconds from the moment Avery was born. By the time we reached 1p.m., three things had happened:
1. Avery looked notably more pink than she had at delivery
2. I was beginning to count our time with Avery in minutes rather than seconds
3. Melissa had taken almost 1000 pictures (wow)
We stayed in that room enjoying her and letting family enjoy her with us. At 5p.m., we went upstairs to the 4th floor. The normal Mom-baby floor is the 5th, but the comfort care team helped arranged for special placement for us. We got situated there and were loving every second with this little girl. Everyone left by about 7:30 (so Jessica tells me.) Here is a pic from my phone that night at about 9 p. m.
Jessica had issues with bleeding that night requiring hourly checks and some medication. Dr. Mike (our pediatrician) stopped by at about 9 to check on Avery. About 1030 that night, she turned more blue. Her vitals were ok, and we decided not to put oxygen on her then as we expected this. With some repositioning and time though, she turned more pink again. Jessica wanted to stay with her as much as possible, but nursing staff and doctors had both recommended we send her up to the nursery. Around 1 a.m., I dozed off. At around 2, I awoke to Jessica sobbing that Avery was blue and not moving. I immediately picked her up off Jessica’s chest and gently bounced. Her respirations seemed to pick up and she rather quickly turned pink again. After that, we decided we needed to let the nurses watch her and we get some sleep. I think we were both dozing at about 2:45, praying we would see her alive when we woke up.
At 6:30 that morning, the nurse wheeled her in and we immediately heard her little grunt breathing. Sweet, sweet sound. The nurse told us that Avery transiently went a little blue when she got agitated but had overall done very well. Unfortunately, I was beginning to feel the after effects of having been on call the weekend before and felt like a dump truck ran me over. (Complaints on your wife’s 1st post-partum day don’t ever seem to be well received by onlookers though.) We were both tired—I am sure Jessica more than me, though she is tougher. With some help from parents, we got a little more sleep before getting up for the day.
By about 9:30, I started to believe Avery was going to make it to 24 hours. Just after noon, my dad brought up birthday cake, we light a candle and all (all 20 family members who had come up at that time) sang to Avery. What a joyous celebration!
That afternoon we began to think that we might actually get to bring this beautiful baby home. Then we realized we were absolutely unprepared to do so. My parents brought up the car seat we bought 3.5 years ago for Allie but never used. We talked to the social worker and Dr. Mike about arrangements, but last night began to fear what may happen at home. The biggest issue looming was her apnea that was responsive to repositioning. We felt like we might need a monitor but didn’t know if this was possible. Fortunately it turned to be relatively straightforward with the help of the team at the hospital making arrangements.
Last night we sent Avery to be held and cuddled by the nurses at 12:30, and she came back in at 6 making her sweet little sounds. After a smooth morning making preparations, we came home at 12:45. The hospice team arrived at about 1:15 and stayed until 2:45. The respiratory therapist arrived at 3:15 and stayed an hour getting us trained in her monitor (monitors Avery while she sleeps for heart rate under 50 or respiratory rate under 15, lets out ear-piercing alarm if need be) and her oxygen tank. Then we (finally) were able to nap.
What a cool and unexpected evening of firsts. Our first meal as a family of five (though Avery ate almost none of the dessert); our first Bible story time together (yes, those moments from last week remained fresh in my mind); she even stayed up past Olivia’s bed time and went in with Em to hear a Fancy Nancy story.Monday (the day before Avery's birth), I asked my friend Micah to reserve the chapel of our church for Saturday morning for Avery’s funeral. We had every expectation she would at best live a couple hours. She may still pass before Saturday morning, but as you read this would you celebrate with us that we are going to have to postpone that funeral? We are elated but remain very aware that we are living on borrowed time. To be sure, Avery’s days are numbered. But so are yours and mine. And while we think we have a better idea about her number than the rest of ours, someone forgot to tell her she was supposed to die within hours of birth. Far from causing us to fear, we have been given more time with Avery than we ever expected. This borrowed time is immensely invigorating. Maybe this is what the hospice social worker meant today when she said, “Avery has a lot to teach us.”
III. Closing thoughts as of today
III. Closing thoughts as of today
I also want to thank everyone for everything they have done. To say we are fortunate is an unbelievable understatement. And the phrase “we are so blessed” misses what I mean to say. No question we have been blessed, but I don’t intend to use the word as an adjective. I mean to tell all of you that amazing people have blessed (action verb) us by their thoughtful words, gifts, acts of servce, and absolutely yes, prayers. The right answer to Emily’s question is that healing will come to Avery’s body. That prayer finds its answer in eternity. Until then, thanks to innumerable friends and family who have knowingly and in some cases unknowingly been agents of healing and comfort to us.
For fear of leaving anyone out and for fear of missing any more time with Avery, will you forgive me if I leave the thanks there and not go into specifics? We hope to thank people individually ASAP.
Below are some of the pictures Melissa took within the first several minutes of Avery's life: