Last week marked four years since the birth of our daughter, Kate Austyn, on June 5, 2010. Kate was our fourth child, our third daughter.
Looking back, it is startling how unaware we were of what awaited us when we drove calmly to the hospital in College Station, Texas, that Saturday afternoon. What we thought would be our fourth routine delivery became the beginning of a journey that would teach us to hang on to hope through the heartache of losing a child.
Rather than trying to retell our experiences from memory, what follows are excerpts from emails we sent to our family and friends describing our experiences in real time. These notes reveal some of the emotions we felt. There was fear and sadness, but we also felt strength and hope from our faith in Jesus Christ and from the words of love and encouragement from family and friends who supported us through it all.
Today, our conviction that families can be together forever through the ordinances and promises of the restored gospel of Jesus Christ is stronger than ever. With great anticipation, we look forward to reuniting with Kate again one day. It is our hope that Kate’s story will be a blessing to all who read it; in that way, her influence for good will live on.
Sunday, June 6, 6:30 a.m. (approximately seven hours after Kate’s birth)
Email to Bishop David Garlick
I wanted to fill you in a little bit. We've had a very hard night. The baby's birth has been nothing like our other three. It would be hard to go into all the details now, but when we have time to visit, I can share more.
The first obvious sign of problems was that the baby was very small when she was born. Holly carried her for 39 weeks, but she weighed only 4 pounds 6 ounces, which is obviously a huge contrast with our other three kids who were all over 8 pounds.
Everyone in the room seemed worried and rushed when the baby was born. We hardly even got a photograph before they rushed her away to the NICU.
The cord was short, so there's a possibility that her small size is simply due to malnourishment in the womb. But there is also a chance that she has some type of genetic abnormality, which obviously frightens Holly and me a lot. Let's just say we didn't sleep much last night.
We got to go see her in the NICU for about an hour at 2 a.m., and she is so small and precious. Holly hasn't been able to nurse her or anything yet. So it will probably be hard for a few days while things get sorted out. We certainly need all of your faith and prayers. I am not sure what to do with our kids. Do you think our kids could go to church with your family? I guess you could tell the ward we had a baby girl and Holly is fine and the baby is ??? sort of fine, but I'm not sure the best way to say that. I'll leave it up to you.
Sunday, June 6, 9:50 a.m.
Email to friend Don Adamson
I've been thinking a lot about you and your family the last 12 hours. Holly delivered our baby girl last night — one week early. She carried the baby 39 weeks, but the baby weighed only 4 pounds 6 ounces. The doctors had never picked up on her being so small in any of the ultrasounds, so it was a huge shock and surprise to us.
The neonatologist came to see us last night and said she is almost positive it's not Down syndrome, but it is almost certainly some other type of genetic disorder that could potentially be very serious. We have felt really frightened about the possibilities, but we know things are in the Lord's hands, and it won't do any good to worry until we find out exactly what's wrong.
It's been really hard hearing people at the hospital say they are sorry about our baby or feel bad about her. They are just trying to be nice, but you never want to be the one family on the floor that has the baby everyone feels sorry about. We never thought it would be us, but here we are.
I gave her a blessing in the NICU last night and we feel at peace that our family will be fine, and we will be blessed to have her in our home. I'll probably call you later this week once we have more information.
Tuesday, June 8, 11:27 a.m.
Email to family and friends
We're now here at the NICU at Texas Children's Hospital in Houston. We are not allowed to use cell phones in the NICU, so using this email address is going to be the best way to keep in touch.
They have not operated on Kate yet, and we are finding out that the operation will probably be delayed until later this week or even next week. Besides the aortic coarctation that they know she needs surgery for, Dr. Ayers told us she can see a few other things with her heart that are a little concerning.
Kate is very stable right now, breathing on her own without oxygen. We obviously have full faith in the team of doctors here and appreciate how considerate they are of us and our concerns. We will meet again later this afternoon with her cardiologist after they've had a chance to review all the images of her heart. The hope is that by the end of the day, they'll at least know about when the surgery will likely take place.
We will send updates as we find out more information each day. We appreciate the prayers and support on Kate’s behalf and ours.
Wednesday, June 9, 4:33 p.m.
Email to family and friends
Two different geneticists met with us yesterday, and both examined Kate to try to figure out what's happening. One of them drew a visual family tree of both of our families that would have impressed any ward family history consultant. We should have asked to get a copy for posterity!
Although they won't know until the results start coming back tomorrow, they are still leaning toward Turner syndrome. They have noted, however, that Kate has some symptoms that are not usually characteristic of Turner's; and she is also missing a few of the typical Turner's symptoms. So it could be anything.
Thursday, June 10, 10:10 p.m.
Email to family and friends
Today has been very tough. We knew it would not be good news when the neonatologist told us this afternoon that we needed to sit down before hearing what the chromosome tests had found. As it turns out, Kate does not have Turner syndrome. Instead, she has a much more serious condition called Trisomy 18.
We met first with the neonatologists, followed by a meeting with all of Kate's doctors: the geneticists, the cardiologist and the neonatologists. We were very blessed that Bishop Haymond, the endocrinologist with whom we've been staying, was able to race over to the NICU in time to actually attend the meeting of all the doctors with us. It was so nice to have him there to hear everything and help us process things after the other doctors left. We had the opportunity during that meeting to ask all our questions about Kate and her condition.
Trisomy 18 has a much different prognosis than Turner syndrome. Nearly all infants born with Trisomy 18 die within one to six months. The list of complications is enormous. As a result, the surgery Kate needed for her heart is now not an option. Because Kate has her heart defect, the doctors believe it is likely that once they take her off the medicine that is keeping her heart working, she could pass away within days or weeks or maybe months.
We are praying for comfort and direction from heaven, and we are so grateful to know that no matter what happens, Kate is ours forever. She is our little angel.
Friday, June 11, 7:45 p.m.
Email to family and friends
Today was a beautiful day for our family. We began early this morning, when we gathered to give Kate a name and a blessing here in the NICU at Texas Children's. It was a wonderful experience, and we felt the presence of angels — the one in our arms and others who were watching.
Later, my mom brought Kennedy, Jackson and London here to the hospital for some much-needed family time. At first we brought them to Kate's room and let them each enjoy holding her. They also wrote cards and drew pictures for her. The hospital even let us wheel Kate outside into the courtyard so the kids could enjoy being with her in that setting.
After bringing Kate back inside, Holly and I met privately with the kids in Kate's room to explain to them that Kate's heart couldn't be fixed and that she probably won't be with us very long before she is called home.
Kennedy was so sweet and cried hard, wanting to know why Kate couldn't stay with us on earth. Through everyone's tears, we could testify that Kate's heart would one day be perfect and whole. Sweet Kennedy worried that Kate might come back again as a baby in someone else's family, but we assured her that Kate would always be ours.
While we have never known such heartache as what we have felt this week knowing our own child cannot be healed and will leave us sooner than we would ever want, there is also unspeakable joy knowing she will be taken home to our Father in Heaven, and we will see her again one day.
Sunday, June 13, 11:26 p.m.
Email to family and friends
As we mentioned last night, tonight is the final night we will spend in Texas Children's Hospital with Kate. It's also the last time we'll send a regular update like this. Starting tomorrow, we will take Kate home and love and enjoy every day we have her with us. When we take her home tomorrow, she will keep her feeding tube, but nothing else will be hooked up to her. The uncertainty surrounding how things will go once we get home is hard to think about, but we know that events will unfold in a way that is according to the Lord's plan for her and for our family.
As anxious as we are to get home, we will miss being around the doctors and nurses who have watched over and cared for Kate (and us). This morning when we got to the hospital, a nurse who was assigned to Kate several nights ago stopped by to tell us she had come to our room last night and held and sang to Kate for several hours, just because she wanted to help. That's what everyone here has been like. They regularly tell us that they are praying for Kate, and many of them tell us Kate is one of the sweetest, most peaceful babies they've worked with. We have spoken of Kate as our angel all week, but we also feel like the medical people at TCH have been angels to our family too. Elder Holland taught: "When we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with — here, now, every day. Some of them reside in our own neighborhoods. ... Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind." We won't forget the doctors and nurses who were our angels this week.
The Haymonds were also ministering angels to us. To think that when we first made contact with them (through a friend) by phone on Monday, they had never met us or spoken to us; yet by the time the night was over, they had given us a key to their house and opened their hearts to us, too. We have thought of Matthew 25:35-36. "For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me." We thank them for taking us in. We also thank our friends, the Prices, for spending time with us almost every day we've been here.
Thanks to all of you for ministering to us, too. Each note, text or email we have received from you this past week becomes part of our book of remembrance to help us never forget what this wonderful week has been like. Finally, Holly has been a much needed angel to Kate and me all week. Some of the people here have assumed it is Holly's medical background that has made her so strong and able to deal with the challenges of this week with such grace. But I know it is much deeper than that, and for that I am very, very grateful.
Monday, June 28, 11:56 a.m.
Blog post by Holly
Kate turned 3 weeks old on Saturday! She is such a joy and we love her so much. She is taking almost 2 ounces every three hours (a little by bottle and the rest by her feeding tube), and she lets us know almost to the minute when it's time for another feeding.
Her cry is very soft, but also heart breaking. Fortunately she doesn't cry very often (only when she's hungry, needs a diaper change, or is gassy — the nurse is bringing some drops for that today, and I hope they help). She sleeps pretty well, but we get up with her every three hours to feed her whether she's awake or not.
Kate has gained 12 ounces and grown 1 inch since we've been home. Wow! She is now 4 pounds 13 ounces and 17.5 inches. To celebrate 3 weeks, Kate had her first outing to one of our favorite yogurt places, Spoons. My parents were in town visiting and enjoyed the trip with us as well. Jackson and Kennedy have a new bedtime routine of holding Kate as we read a book and say prayers. It has turned into a favorite time of day.
Tuesday, July 6, 12:21 p.m.
Email to family and friends
This morning, Kate passed away peacefully around 8:35 a.m. while in our arms, one month and a day after she was born.
We brought Kate home from the hospital three weeks ago, and we could not have asked for a more wonderful three weeks with her. She was sweet and peaceful and endearing the whole time she was with us.
After a very difficult night on Sunday, the doctor visited us on Monday morning and told us that Kate was transitioning and that her blood circulation was beginning to show signs of slowing. He prescribed some pain medication, and Kate spent the last day of her life looking and feeling very peaceful, while awake and alert much of the time.
Our bishop and I gave Kate a blessing last night, and, as we hoped, she was very peaceful throughout the night until her sweet release this morning. Our kids had a chance to come into our bedroom and say goodbye to Kate this morning; and we had a tender family prayer together. We are so grateful for the brief time that Kate was with us, for the impact she has had on all of us, and for the memories of her that will bless our family forever.
Kate’s funeral was beautiful; the outpouring of love and support from family and friends was incredible.
Wanting to keep Kate’s memory alive, we planted a garden in our backyard with several flowering trees to remind us of Kate. We also donated a bookshelf to our children’s elementary school library, and asked family and friends to donate children’s books for it in Kate’s memory. Books came from all across the country, and the bookshelf remains a popular location in the school library today.
Holly delivered a baby boy in January 2012, whom we named Austin in memory of his older sister, Kate Austyn. Since Kate’s passing, we have visited her grave weekly as a family, to spend a few moments remembering her and honoring her memory.