Stella's Story: Part 1

Here is the beginning of Stella's Story: Stella's Story: Part 1
The rest is coming soon!

Roller Coaster Conversations

When Ely and Milo came home from helping Daddy clean out the cars today, I was reading Angie Smith's blog and crying intermittently. Ely asked me if they were pictures of Aidan's mommy's baby, and I said no, that these were pictures of another mommy's baby who had died shortly after she was born. I showed him the picture of Audrey Caroline, and he said, "Baby Stella died too." I told him that yes, he was right, and that she is in heaven. Ely replied, "Mommy, I'm happy." How bittersweet. Mommy's sad.

As the boys were eating lunch, Milo was looking at wall photos of Ely as a baby, and he thought they were of him. He's made this mistake dozens of times, and every time, I feel like a terrible mother because I don't have a collage frame full of Milo's first year. (I really need to fix this.) Milo says to me, "Mommy, was I born like baby Stella?" I replied, "Yes, you were born like baby Stella." (Oh boy, here comes the rush of emotions again). Then Milo continues, "Will I go to heaven too?" Fighting back the tears, I told him, "Yes, but hopefully not for a long, long time, when you are old and have had a family of your own." I explained to both of my boys that I hoped they would grow up and get married and have children. Ely says, "You kiss a girl when you get married." Mike and I laughed and both began our answers with "Well..." and Mike interjects, "That's a great plan, Ely. Waiting to kiss a girl until you get married." Then Ely wants to know if he will go to heaven too to be with baby Stella.

On our way to dinner tonight, "Everything Falls" came on the radio. Our very observant Ely recognized the song and then asked me if I created it. Surprised by his question, I replied, "No, bud, but it is one of Mommy's favorite songs." Ely told me he remembered Chad singing the song at church (at Stella's memorial service.) and "I really like this song, too, Mom." Then, as Ely randomly does, he counted the members in our family, "1, 2, 3, 4. There are 4 people in our family." I corrected him. "Actually, bud, there are 5 members in our family. Baby Stella will always be a member of our family even though she's in heaven." Pointing out the number of people in our family again, this time Ely counted to five, adding in Stella. Staring out the window (we were driving on Lake Road), Ely then pronounced, "I want to jump in the lake." Mike and I laughed heartily and asked him why. He replied, "'Cause I want to get my hair wet." Mike challenged him, "I know a way we can get your hair wet. It's called a bath." Ely smiled and said, "No" like it was the silliest idea he'd ever heard.

When we arrived at Applebee's, Ely again changed the course of the conversation and said to me, "I'm still sad, Mom. Are you sad?" Of course my answer was, "Yes, Ely, I will always be sad that baby Stella isn't here with us." Ely then admitted, "I'm sad too, Mom." For a few precious seconds, Ely held my hand (which he never does anymore because big boys don't hold their parents' hands), and he melted my heart with an "I love you, Mom." Peering over Mike's shoulder, Milo yelled to me several times, "Mommy, I love you, too." He followed it with, "Come give me a kiss." I was especially touched because our punk three-year-old often refuses hugs and kisses just assert his own little will over ours. After I happily obliged his request, Milo asked for a hug, too. My boys definitely know how to make me feel better.

Then, inside of the restaurant, when we were asked how many people were in our party, Ely says (slurring the "v"), "Five." Amazingly, I held it together and explained that while we do have five in our family, Stella isn't here with us on earth, so we only need to tell the waitress "four."

Life is such a roller coaster of emotions for us right now, and the highs ands lows change as quickly as the seconds pass. My boys make me weep uncontrollably and laugh hysterically, sometimes at the same time. I praise God for my two crazy, sweet little men who have helped make my sorrow bearable over these past few weeks.

Stella Rose - Mercy in Suffering (What I Shared at her Memorial Service)

Several months ago, before we knew the full extent of Stella’s problems, we studied Job in Sunday School. I remember feeling a personal connection to Job’s story. I wondered “Why Job?” and “Why now?” Despite my uncertainty, one thing I knew for sure was that I would NEVER be able to suffer loss as Job did and say, “The Lord Gives and the Lord takes away, blessed be the Lord.”

But that’s just what God had in mind. He knew that I would suffer great loss, and He knew how I would be changed. Even in the midst of the many difficulties we’ve faced during this long and treacherous journey, I can look back now and see God’s grace and mercy poured out in my life. I’d like to list just a few of these mercies God has shown to me and to our family.

  1. God allowed us to meet our daughter. When I was about 24 weeks pregnant, I prayed that God would be merciful and take our daughter home then if she wasn’t meant to live. While I thought this would be the best scenario given Stella’s bleak prognosis, God knew that we needed to meet her to learn the many lessons he had in store for us.
  2. God allowed our daughter to know who we were. It was completely amazing that Stella knew her Mommy, Daddy, and her brothers. Our nurse for three days, Jeremy, commented that Stella never responded to him, that she would always lays still with her eyes closed until she heard our voices. She would then open her eyes and squeeze our fingers with her tiny hand. This was incredibly remarkable because usually babies with severe brain problems do not recognize people, even when they are older. Stella would relax when I held her, and when I put her down, she would open her eyes and squirm a little as if to say, “Where did my mommy go?” And although she could only open her eyes halfway, we knew she knew us. There was a deep connection that words can’t even explain. We loved her with all our hearts, and we knew she felt our love.
  3. God confirmed our decision to let her go be with Him. By late Saturday afternoon, even while Stella was still hooked up to all the hospital equipment, she was already unresponsive except for the occasional flicker of her eyes. Even when we gave her a bath, she never moved a muscle.
  4. God preserved my fertility. When I was being prepped for my C-section, the nurses told me my OB had ordered two IV lines “just in case.” I had no idea what that meant. Dr. Tag visited me before the surgery, and she explained that I had an anterior (front) and low-lying placenta, and that sometimes, especially with multiple C-sections, the placenta grows into the scar tissue. When that happens, there is no way to remove the placenta safely without the mother bleeding to death. In this case, an immediate hysterectomy and blood transfusions are needed.” So, on top of being scared for my baby’s life, I was now scared for my own life. Thankfully, during surgery, Dr. Tag leaned over to me and told me that the placenta came out just fine and not to worry.
  5. God helped me understand scripture in new ways. I struggled so much with Psalm 139 verses 13-16 during this time. God (ironically) gave me the answer to my struggles through my single sister, who said “and you know what? i think she is still fearfully and wonderfully made because no matter what is wrong with her physically, she's still a tiny, completely new soul that has come into being...that is perhaps the most amazing thing of all.”
  6. God gave me another reason to look forward to heaven. It’s not that I don’t want to go to heaven or meet God someday – I do. But, like any other wife and mother, I want to live a long life on earth with my husband and children. I don’t feel that’s wrong. Afterall, life is a gift. As terrible as it sounds, and as much as I love God, I’ve never really been all that excited about heaven. I think maybe it’s because of my human nature, that I couldn’t see how heaven is better than this life. Now I have another reason to long for heaven – to be reunited with my little girl.
  7. God gave me an amazing husband who I have grown to know and love like never before. We have been able to share our thoughts and feelings about everything that has happened, and our prayers together have so intimate and vulnerable. Mike was so incredibly in love with his daughter, and I admire his courage to let her go.
  8. God has given me an amazing church family that has helped us through these hard times. I love Matt Maher’s song “Hold Us Together.” It perfectly explains how I feel sheltered by both my family and my church family.

    The chorus says

    “Love will hold us together
    Make us a shelter to weather the storm
    And I'll be my brothers keeper
    So the whole world will know
    That we're not alone”

    We are both very grateful for all the love, prayers, and support we have received from our church family. Thank you from the bottom of our hearts.

How to Help Grieving Parents

I didn't write this, and although I think that whooever did expressed their opinions with some sense of bitterness/cynicism (and not entirely from a Christian perspective), I do think there is some good advice. These don't all apply to our specific situation, but a lot of them do.

"When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy and infant loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss. When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

  • Don't say, "It's God's Will." Many terrible things are God's Will; that doesn't make them less terrible.
  • Don't say, "It was for the best" - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.
  • Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between losing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.
  • Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?
  • Don't say, "Thank God you lost the baby before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.
  • Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.
  • Don't say, "Now you have an angel watching over you." Oh, great just what I wanted an angel. You're right. I didn't want my baby; I wanted an angel. I didn't want him to be my angel. I wanted him to bury me in my old age.
  • Don't say, "He/She is in a better place." What better place is there than in my arms? How is it better that my child is in heaven than with his mommy and daddy? How is that better? Since you want what is best for your children too, would you rather have your child in heaven?...Didn't think so.
  • Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently. And especially don't say this and associate it with something like your isn't the same.
  • Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.
  • Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before my baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.
  • Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.
  • Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.
  • Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.
  • Do say, "I have said a prayer for you."
  • Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.
  • Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.
If you're my boss or my co-worker:
  • Do recognize that I have suffered a death in my family - not a medical condition.
  • Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.
  • Do understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come.

    Above all, please remember that this is the worst thing that ever happened to me. The word "loss" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me."

Stella Rose - Our Precious Miracle

Around 5:00 PM last night, our precious Stella Rose went to be with Jesus. Her passing was very quick and painless. After the ventilator was removed, I got to see her lovely face without tubes for about a minute when she opened her eyes slightly, raised her hands, and took her last breath. It was sad, but also beautiful. An overwhelming peace swept over her and over us as she went to be with her Creator.

We are very confident that we made the right decision. She held on until yesterday for us. When I arrived yesterday morning, she opened her eyes and reached out her hand to squeeze my finger. This was remarkable because for the past two days, she could barely move or open her eyes. By the end of yesterday afternoon, she was not longer responding to touch or moving at all. She was ready to go.

Mike and I are deeply appreciative of the many, many prayers that have been lifted up on our and Stella's behalf. We were all praying for a miracle - I realized yesterday that Stella herself WAS the miracle. Against the odds she made it to birth, and we spent six wonderful days with her. I was told over and over that babies with as many problems as Stella had rarely make it to birth. But, by God's grace, she did make it to birth, and she has changed our lives forever.

Meeting our miracle - our precious Stella Rose - has changed our hearts in so many ways. Mike and I now have a much, much greater love for each other, for our boys, our family and friends, and for life itself. So many "things" and everyday difficulties now seem so inconsequential. God used the miracle of Stella's life to perform miracles in our lives. We hope and pray that her short stay on earth performs miracles in other peoples' lives as well. Nothing would honor the memory of Stella's life more than to know that God has touched the hearts of all who know her story.

We feel like we've known Stella and loved her for a long time, not just for a few days, and we know that we will be reunited with her again someday. Though the next few days, weeks, and months (and probably years) will be difficult and emotional, we are at peace with letting Stella go. Please pray for continual peace for us over the coming weeks.

Although I did not ever believe that I could say and mean this, God has given me the grace to say as Job did,

"The Lord gives, and the Lord takes away. Blessed be the name of the Lord." (Job 1:21)
Please join us in praising the Lord for Stella's life.

Stella is Coming on Monday

As Dr. Potter put it, "the gig is up." Although my amniotic fluid had not decreased, Stella has not grown at all in two weeks. She is still estimated to be only about 4 lbs. She is scheduled to arrive on Monday morning a long as she maintains her activity over the weekend. I am still in shock, as I expected her to make it until the 11th. Please be praying!!!!!

Stella's Story - Part 1

After two years of desperately wanting and trying for a third child, we accepted our family of four as God's plan for us.  The next month, in Janaray of 2010, we unexpectedly conceived. Overjoyed doesn't begin to describe how we felt.  I told my parents and a few friends right away so they could be in prayer for us, but something kept me from publicly announcing my pregnancy.

The week after seeing the much longed for two pink lines, I began  having some serious deep pain in my incision area.  Fearing an etopic pregnancy, I visited the OB several times.  During the first ultrasound, there was nothing visible, so I waited five days and returned for another ultrasound.  This time, there was a small sac in the right place!  This was not an etopic pregnancy!  Needless to say, I was so relieved.  My HCG numbers had more than doubled in two days time, too, and were on the high end of normal, so according to the OB, everything looked good.  I finally had the go ahead to be excited.  But, even early on, I just had a feeling that something wasn't right.

As the weeks passed (slowly!), I had all the normal pregnancy symptoms, plus a few more that I never had with my boys.  I had constant nausea and headaches, and my skin didn't breakout nearly as badly as in previous pregnancies.  With all my heart, I hoped for a girl, although of course, the baby's health was top priority.

My eight week ultrasound showed a normally progressing pregnancy.  We saw a tiny little peanut and heard the most amazing sound: our baby's heartbeat.  The ultrasound showed that I was right on target for an October birth.  My due date of October 19th was only four days past was I had originally calculated.  After two summer babies, I was really looking forward to a fall baby, especially since Mike had a lot of time he could take off and then two upcoming vacations (Thanksgiving and Christmas) that he could spend with our newborn child.

As I entered my second trimester, I began to become more and more aware that my belly wasn't growing as much as I expected.  With my boys, by thirteen or fourteen weeks, I could no longer fit in regular pants, but with this pregnancy, I still didn't need maternity clothes.  My lack of belly didn't seem to concern anyone but me.  Friends and family offered the explanation that maybe this baby was a girl, and she was smaller than my boys.  It was a nice idea, but I wasn't really buying it. 

My very kind OB let me schedule "the big ultrasound" at 19 weeks instead of the recommended 20+ weeks.  We scheduled for my husband and my boys to be there to find out if they were having a brother or a sister. After much anticipation, the ultrasound was initally uneventful because our baby was curled into a little ball.  The sonographer told us she was having trouble getting some needed shots because of the position of the baby.  I asked her if everything looked okay, and she said that the baby was measuring small and was only about 8oz. and should have been a lot closre to 1 lb. at this point.  She said her measurements were the equivilent of one-and-a-half weeks behind.  She asked me multiple times if I was eating enough, and I assured her that I was (like that's ever been a problem!).  Then came the much-waited-for moment when we would find out the gender of our baby.  Our baby had tightly crossed legs and wasn't cooperating, so the ultrasound tech pushed on my belly.  Thankfully, our baby loosened her legs enough so the sonographer could get a little bit better of a look.  She said if she had to guess, she'd say "girl."  Girl?  Did I hear that correctly?!!!  I asked her to give me a percentage of how sure she was; she said she was "about 90% sure."  90%?  That was good enough for me.  There are no words to describe how thrilled we were!  A daughter!  How perfect.  I had always dreamed of having two boys and a girl, and God had granted my desires.  I was so incredibly thankful. 

The ultrasound ended with the sonographer telling me I would need to return for a repeat ultrasound in four weeks when the baby was larger so she could get some better views.  I was worried about her size and inactivity, but I was trying to focus on our good news.  We had just found out we were having a daughter!  On our way to our celebration lunch, Mike and I took turns calling family members.  Everyone was so excited.  This was the first granddaughter on both sides!  I felt so blessed and privleged to be having a girl. My thoughts fast forwarded to pretty pink skirts and cute ribbon hairbows, dollhouses and wedding dresses.

After our celebration lunch at Sweet Tomatoes, we went to Babies 'R Us. Up until this point, I had not bought a single thing for our baby, which showed some serious restraint on my part.  I finally gave in!  Mike, Ely, and I had so much fun hunting for little girly things.  Since it was in the summer, it was a bit hard to find long-sleeved clothing, so Ely got a bit frustrated trying to pick out something season-appropriate for his sister. His first almost-successful pick was this gorgeous purple and white ruffled outfit. It was so beautiful that it took my breath away.  Ely ran up to me with it, beaming from ear to ear.  When he handed it to, me, though, I realized that it was a preemie outfit.  I delivered the bad news to Ely, and we returned it to the rack.  If only I had known our little girl would be the size of a preemie...I so wish I would have bought that outfit anyway.  It would have been so special to have our baby girl wear the sweet outfit her big brother chose for her.

The next four weeks drug by; my ultrasound at 22 weeks ended up being on the morning we were leaving for our Dollywood vacation.  I was excited to see my baby again and to confirm that she was, in fact, a girl, but I was worried about her size.  As it turns out, I had much more to be worried about.

The second ultrasound began like the first, with Stella being curled up in a ball.  This time, the ultrasound tech almost had to pound on my belly to wake our baby.  Our baby cooperated a little bit and opened her legs enough for the sonographer to confirm that was definitely a girl.  The ultrasound was taking a long time, and I keep hearing a lot of "hmms" from the sonographer.  The boys were getting totally antsy, so Mike took them to the car.  That was when things got serious.  The sonographer continued to scan the same areas of the baby again and again.  Of course I asked her, "Does everything look okay?" and she finally admitted to me that she couldn't find her second kidney, and that this finding combined with her small size (she was now two weeks behind in her growth) might be cause for concern.  She told me that I would have to stay and speak with the Dr. I held back the tears as I rushed to the car to tell Mike.  Panic immediately set in for him as I explained what I knew and then returned to the waiting area. 

As it turned out, the on-call doctor wasn't going to be available for several hours, so his nurse brought me back to his office and told me, "When we have an abnormal ultrasound, we have to send you to a perinatologist."  Abnormal.  The gravity of the situation began to sink in.  The nurse called around, and the first perinatologist she called couldn't get me in for three to four weeks.  She told them that was unacceptable and that I couldn't wait.  Oh my goodness. What was going on?  All this for a single kidney?  In retrospect, they already knew something else was really wrong.  The nurse was able to schedule an appointment for me for the following Thursday.  In the meantime, I was told to try to relax and enjoy my vacation. 

The next Friday, Mike and I spent four hours in the perinatologist's office.  Little did I know that I would spend the next sixteen weeks there.  The OB nurse warned me that the ultrasound would be long, but I wasn't prepared for how nervewracking it would be laying there while a sonographer searched every inch of our baby for signs of abnormalities.  Pam, our sonographer, began with our little girl's kidneys, but soon she switched to her heart, and she stayed there for a LONG an hour.  Poor Mike was sitting there squeezing my hand and trying not to have a nervous breakdown. 

After the ultrasound was complete, we again had to wait until we could see the doctor.  Dr. White was the one who delivered the devastating news.  Our baby was small (now two-and-a half weeks behind in her growth), had multiple heart defects and a pelvic kidney.  Dr. White pulled out her heart diagram and drew in our baby's VSD (ventricular septal defect) and co-arctation of the aorta (narrowing of the aortic valve where it exits the heart).  She explained the course of action for the next couple of weeks and answered our questions, although we couldn't articulate many at the time because of our shock.

We went home with a pediatric cardiology appointment scheduled for the next week and with anxious concern for the life of our baby girl.  We had no idea that things were about to go from bad to worse.


About This Blog

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This is the story of our daughter, Stella Rose, who went to be with Jesus after five days here on this earth. Stella was born with multiple birth defects due to a severe case of Wolf Hirschhorn Syndrome. Although Stella is no longer with us in person, she has changed us forever. Stella's legacy is my journey on a new road without my daughter, and how God is working in our hearts.

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