Stella's Story: Part 1

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

The Boys' Grief

Now that we're in the midst of the holiday season, coping with our grief from losing Stella has gotten both easier and harder. We are all looking forward to spending time with family up north, and I'm especially looking forward to the boys being distracted by new playmates and new toys. The way the boys are currently dealing with losing their sister has been very hard on us.

Milo still thinks Stella is coming back. This past Sunday night, on the way to watch the Children's Christmas program at church, Milo said to us, "Mommy, we put Stella in a pot?" Confused, I looked at Mike, and he whispered, "He means casket." Patiently, we explained to him that Stella's body was in the ground, but her spirit is in heaven. Then Milo asked, "After I go to heaven, Stella come back?" Well...technically, that's correct, but explaining the principles of death let alone revelation to a three-year-old is impossible. So, I told Milo, "No, sweetie, Stella isn't coming back. She is with God forever."

Reminiscing about the two very short visits he spent with Stella, Milo says emphatically, "And I touch her hand!" Smiling sadly, I affirmed his sweet memory . "Yes, Milo, you touched her hand." Then,sorrowfully, Milo says, "I wanted to tickle her." Aw, my loving little Milo. He wanted to be able to play with her. I could feel my heart breaking. I tried to encourage him and told him that someday he would get to play with Stella, but that we would pray for another baby to play with here on earth. As painful as it is, I am thankful that my little Munch continues to remember his sister. I hope he will always remember his sister.

Ely has been harder to read in his grief. A few weeks ago, we were talking in the car about Ely's shopping list for Santa's Secret Workshop . This year was the first year Ely got to shop by himself for Mommy, Daddy, and Milo. (I can't wait to see what he picked out!) Mike asked Ely, "Besides Mommy and Daddy, is there anyone else you'd like to buy a gift for?" Ely thought for a few seconds, and then said, "Tasha." Surprised, I asked, "Do you have a friend Tasha, or do you mean Mommy's friend Tasha?" He replied, "Your friend Tasha." He continued, "We need to take the presents to the hospital, because her baby's at the hospital."

I was blown away by the heartfelt generosity of my big man. He wanted to help someone who wasn't even technically his friend (not one of his classmates or friends from church his own age). "Ely, that is really sweet, but Marissa (Tasha's baby) isn't at the hospital anymore. God healed Marissa, and she is at home now." Even though Ely was in the back seat and I couldn't see his face, I knew his head drooped and his eyes lowered when he replied sadly, "But not our baby." I told Ely that God had healed our baby Stella, too, just not in the same way and that she was healed and was with God forever. I asked Ely if he still wanted to bring Tasha a present even though Marissa wasn't still in the hospital, and he said that he did.

After this conversation with Ely, even though he has shown thoughtfulness toward others, I have begun to notice that he is sad and confused (and I think also a bit angry) about why his friends have gotten to bring their babies sisters home and he did not. That same night, Ely also talked about Aidan and how Aidan's mommy got to bring home her baby. We can explain over and over that Stella is in heaven and that God is taking care of her, but we can't change his little heart or make him understand. It is so painful to watch him suffer the loss of his sister, and it is even more painful to watch him be angry with God.

Tonight at dinner, the boys brought up how much they want another baby. Ely loves thinking of names for his hypothetical brother or sister. His first suggestion tonight was "pink," and after we gently rejected that one, he wanted to use the name Stella. We explained to Ely that we can't use the name Stella again because he already has a sister named Stella. Ely's response was, "I had no sister." Okay, now I can handle a lot of questions and responses, but for Ely to deny his sister's existance brings a new level of pain that I cannot even describe. Ely turned away from us in his chair and crossed his arms. Mike said, consolingly, "Ely, Stella will always be your sister." Ely said (as he often does these days), "nuh uh." No matter how we tried to phrase it, Ely refused to acknowledge that his sister had been with us.

Please continue to pray for us, but please pray specifically for Ely. He has become angry and defiant at times and has changed from the boy who wouldn't let anyone else say grace at meals to the boy who doesn't want to say grace at all. He doesn't want to go to church or talk about God. It seems he is blaming God for the loss of his sister.

Please pray for us, too, that God would bless us quickly with a healthy baby. I have walked the road of infertility twice now, and I just don't feel strong enough to walk it again. We will allows love our sweet Stella, but we are hopeful that a new little one will help us continue to heal.


We got our genetic results back yesterday. Dr. Tag called me personally to tell me the results.

Drum Roll..............................They were completely normal!

I let out quite a loud "Praise the Lord!" from my corner "office" (really, it's just a decent-sized cubicle). This news made my day, well, my whole week, really!

It is crazy, though, that what happened to our little Stella was, in medical terms, de novo (purely spontaneous). God obviously had a higher purpose in sending us our little girl. She wasn't meant to stay here on earth, but her memory lives on in us, and we hope to continue to bless others as a result of her death. We would like to continue to help families whose babies are born with heart defects or genetic disorders, specifically. Families who have chosen life for their babies, despite the diagnosis, and despite the odds.

We rejoice in knowing that there is nothing adversely affecting our boys or my sisters. I am amazed every time I see a healthy baby, knowing that God put that little being together perfectly. And even one someone isn't genetically normal, it doesn't make his or her life any less precious or any less valuable in the sight of God. The thought that has comforted me through this time is this: "Stella's body wasn't strong enough to contain her soul."

Stella is the most precious gift that I have lost here on this earth. But losing her has also given me the greatest spiritual gain I have ever experienced (since I came to know the Lord, that is). Because of this, even in the midst of sorrow, I can still say that God is good.

On this side of heaven, I pray that our loss would translate for others into the greatest gift in this life: knowing Jesus as Lord and Savior.

Born to Be

Today, I feel weary. I think I'm fighting something off in more ways than one. The burden of grief has been particularly heavy. When that happens I start to have trouble sorting through my thoughts. Time slows down and begins to drag.

Today was one of those days when the pain got so bad that I couldn't breathe. My chest feels compressed and so does my heart within it. The bittersweet that is so prevelant in everything I do now tastes more bitter than sweet, and smiling isn't so natural.

I don't think the twenty-something, chilled-to-the-bone weather helps. Mike mentioned that he'd like to curl up in a ball under a blanket and sleep for a long time. Sounds pretty good to me.

We both felt like curling in a little ball together after the service this morning. I know that Ron didn't mean the sermon to be sad; it was about our Savior, after all, but it was hard for us to swallow. It wasn't difficult only because Ron mentioned us by name and our daughter being the "baby who has already gone home to be with the Lord" (out of the 15 or 16 babies born in our church this year). Ron preached about Jesus coming to earth as a baby, and in his sermon he mentioned many sweet details of being a parent. He talked about how parents in biblical times carefully considered the name of their little ones because it was believed that the child would become their name. I couldn't help but think about how careful we were to give our Stella a great name even before she was born, a name she could live up to.

Stella did become her name. She became an extraordinary star, shining the way to Jesus in our lives. And hopefully, she's shining the way to Jesus in other people's lives because of the way she's changed us.

Not only was the sermon sad, but so was the special music, at least to me. "Mary Did You Know" has always been a song that causes me to think solemnly about Christ coming to earth. But, this year, it took on new meaning. "Mary, Did you know, that when you kiss your little baby, you kiss the face of God?" Of course I can't compare meeting our Stella to Mary meeting Jesus in baby form, but I feel like I can now understand just a small part of what Mary felt. It's as if I got to know God a little better after looking at my baby's face.

My mind doesn't always work in a linear way, so when I was listening to the sermon and to "Mary Did You Know," I thought of the song that has been in my head the whole week: Stellar Kart's "Born to Be." I thought about how as much as it hurts not to have our daughter here with it, that she was born to be a part of something holy. That we are all born to be part of something holy. This thought has giving me consolation today, a day that has seemed unbearable otherwise.
Stellar Kart
Born to Be

"We were born to be,
A part of something holy.
All of us are restless 'til we find.
We were born to be,
A part of something holy.
Bigger than, bigger than
Bigger than you and I.
Bigger than all our lives."

Please pray with us that our Stella's life and our lives will be part of something holy.

My New Normal

Losing my daughter has forever changed me; I will never be the same, and I don't think my life will ever be what other people classify as normal. I've read several meaningful and encouraging stories by godly women who have lost children, and they all describe life after tragedy as their "new normal."

The past few days have been particularly difficult for me as I adjust to my new normal. It's been harder than usual to find joy in the mundane routines like going to work and even in the more exciting events like going on a date to see Harry Potter (it was a MUST GO, by the way). Not that I don't enjoy doing these things; I do. It's just everyday normalities remind me that she's not here. I don't have a choice but to tackle life with an intensity of mixed emotions that just plain wears me out.

My new normal is having an emotional battle every time we go out for dinner. Going out to dinner is one of my favorite pleasures, but it also causes me to miss Stella a lot. When I'm in a restaurant, I think about how the Eber family wouldn't be going out to eat if we had a newborn at home. I'm saddened by how our "party of four" should be a "party of five." Ely reminded me again of this thought tonight, while we were eating dinner at The Olive Garden (thank you, Aunt Rosie!) We were seated at a round five-top table. The empty chair next to Ely prompted him to announce, "Somebody's missing. A girl's missing. Know who's missing? Baby Stella's missing!" This is one of the only times that I've seen Mike visibly upset in public. Little did he know, but Ely was echoing how I feel all the time.

My new normal is always having the feeling that somebody's missing. It's a little like the feeling when you lose your phone or your keys, or maybe even your dog, but multiplied by a million. And, on top of that, you'll never find what you lost, not in this life anyway.

My new normal is crying all the way to work every day. I feel ashamed that I ever complained about having to go back to work. While I do love what I do, I love my daughter even more, and I would have gladly given up my job to take care of her. During my one-hour commute, inevitably, 104.7 The FISH will play at least several of the songs that deeply touch me, and I'll have tears streaming down my face. I've never really been one to cry much, but let me tell you, the tears flow easily now, even when they're not visible. Now I long to do something more meaningful than web design, something that touches the hearts of those who are hurting. Though, as we sang in church two weeks ago, "Take my life and let it be consecrated Lord to thee."

My new normal is having life and death conversations with my kids on a daily basis and hearing about them having life and death conversations with their friends. While my dear [pregnant] friend Jennifer was watching the boys last night, her daughter pointed to her mommy's belly and told Ely, "Mommy has a baby in there." Jennifer told me Ely lowered his head and sadly replied, "My baby died." Jennifer and her parents cheered Ely up by reminded him that Stella is in heaven. My sweet, sweet boy. At times, my heart breaks more for Ely and Milo than for myself, knowing how desperately my boys wanted to be big brothers. Ely, in particular, is very good with babies. Baby girls have a special placein his heart, and he'll gladly abandon favorite friends and toys to sit on the floor with their baby siblings to roll a ball back and forth or make silly faces.

My new normal is having a room in my house that I can't yet bear to use. Last week, after telling Ely for the umpteenth time that Stella isn't coming back, he reminded me, "but we still have her room." I replied that yes, we did and asked him, "Would it be okay with you if we redid her room?" Ely shyly and sensitively responded, "when you can handle it, Mom." Sometimes I really think God speaks through my boys.

My new normal is navigating the waters of friendship with those who have been blessed with healthy babies. I praise God that not for a second have I been angry, bitter, or resentful toward any of my friends who have recently had or is(Lord-willing) soon to have a healthy baby. I do find myself frustrated, though, when friends complain about what I consider insignificant problems like what room to put the baby in or not having enough help after the baby comes. Yes, these are valid concerns. But, what are these concerns in comparison to the blessing of having a perfectly healthy, beautiful baby?

My new normal is trying to figure out how to answer the question, "How many kids do you have?" Do I say two and not have to go into all the details about how Stella came into this world and left in six short days, or do I say three and explain everything? Two weeks ago, at the Children's Imagine It museum, I was faced with this question, and I just decided to say, "two boys" to avoid the follow up questions. Now I regret what I said.

My new normal is having the incredible burden that God allowed this to happen for a reason, and that I must not waste one single moment that I could be sharing the hope and faith that God has given to me. I keep going back to the line in Matt Maher's song that says, "This is the first day of the rest of your life." Every new day is the first day of the rest of our lives. I don't see the point in living without salvation, and I so desperately want others not to see the point either. I am so human, though, and I fail so often. But I want this part of my "new normal" to stay a part of me.

My new normal is anything but "normal." But it's my life now, and I can't turn back time. Please pray for me as I continue to climb uphill on this new terrain called "my new normal." Although I am spiritually the best I have been in a long time, I get so tired emotionally. My body feels the weight of my emotions, and I'm still having trouble healing physically.

Aaron Shust - You Watch Over Me
"You watch over me in the darkest valleys
You watch over me when the night seems long
You help me to see the way before me
You watch over me; You watch over me"

Psalm 34:18
"The LORD is close to the brokenhearted and saves those who are crushed in spirit."

Everything Looks Different

Warning: Slight "Tangled" Spoiler.

Okay, I admit it. I'm a complete sap. Movies really affect me; they always have, and animated Disney movies are no exception.

I took Ely to see the new Disney movie "Tangled" today, and even though it had a happy ending (what fairytale doesn't), it had some really sad and moving parts. Having gone several days without experiencing the consistent deep, stabbing pain of loss, I was hardly anticipating that a trip to the movies would break my streak. But it did.

In the movie, every year the people of the town release flying lanterns to celebrate the lost princess's (Rapunzel's) birthday. On Rapunzel's 18th birthday, there is a scene where the king is crying because he desperately misses his daughter. Cue the tears. Yes, I know I'm identifying with an animated fictional character, but I couldn't help myself.

Then, in the same few minutes, Rapunzel and Eugene sing a song that kept the tears flowing. The main line in the song is "All At Once, Everything Looks Different Now That I See You." I thought of Stella. I thought about how I had a hard time becoming attached to her while I carried her and how I worried that I wouldn't bond with her after she was born. Having decided against prenatal genetic testing, I had no idea what she would look like and the types of deformities she might have. What if she looked strange? What if I was scared by the way she looked? What if I didn't think she was beautiful?

Oh, but if only I had known how I would feel about her. I saw her for only thirty seconds after she was born, but "All at Once, everything looked different now that I saw you." I had an immediate, intense love for Stella that I did not experience with my boys. And she didn't look "normal," but gosh, she was beautiful. And seeing her changed everything.

My whole world looked different the day Stella came into my life, and my whole world still looks different. I cherish moments with my boys, with my husband, and even with complete strangers in ways I didn't before. My perspective has shifted to much more of an eternal perspective than an earthly perspective. I feel so deeply, and my heart has been tenderized, not just to my own pain, but to the pain of others. I'm so much healthier spiritually than I've been in a long time. Nothing matters more than glorifying God with everything I do.

I'm trying to be a better mother, to remember and hold dear the sweet and bittersweet things my boys say and do. I know that God is teaching me through my boys. He is using my boys to both help me hold on to and to let go of my precious Stella. I think their worlds look different, too, now that their baby sister is gone.

Today, I was priveleged to see more of a glimpse of what Milo is feeling (and a little later on, Mike, too.)

Every year, I buy an ornament for each boy that's representative of something from that year. We have a Christmas ornament that's a milk bottle for Ely when he was one. Thy boy loved his milk at that age and did up until about six months ago. It was the end of the world if we ran out of milk. While the boys were decorating the Christmas tree, Milo became enthralled with the milk bottle ornament. He gingerly lifted it from the Christmas tree and brought it over to me.

"I need some of this, mommy," he told me.

"You need some milk, Milo?" I repeated after him.

"Yes," Milo explained, "because I want a baby."

Mike and I looked at each other with tears in our eyes and extended bottom lips.

I noticed that Mike's sad expression hadn't left his face an hour after he and the boys had finished decorating the tree. I encouraged him to talk to me. It's a rare occasion that my introspective husband takes me up on this offer, but this time, he did.

"I was looking at the ornaments, at all the ones with the boys' names on them, and it made me sad. The hardest is the letter ornaments." I couldn't remember what letter ornaments Mike was talking about, so I asked him. He walked over to the tree and showed me his M. "These ornaments. The cookie cutter ones. We all have one. An M, J, M, and an E." And I filled in the blank. No S. "They're on the other side of the tree so I don't have to see them from the couch," Mike finished. More eye welling and protruding lower lips.

As Mike was tucking the boys in tonight, and they were praying together, I heard Milo mention baby Stella. When Mike returned from the boys' room, I asked him what Milo had said. Mike interpreted Milo's prayer to his best understanding. Milo had thanked God that Stella was with him. Oh, Milo. My little three-year-old boy was again echoing his mommy's heart. Glad that our Stella is with God, but so hoping for a [healthy] baby.

"All At Once, Everything Looks Different Now That I See You." Everything looks different for all of us now that we've seen and met our baby Stella. Everything looks different now that we've seen and met God. And He's met us.

Letting Go

"I've walked the valley of death's shadow
So deep and dark I could hardly breathe
I've had to let go of more than I could bear
And questioned everything that I believe
But still even here in this great darkness
A comfort and hope come breaking through
As I can say in life or death, God we belong to you."

Steven Curtis Chapman and Jonas Myrin

Psalm 131:1-2 "My heart is not proud, Lord, my eyes are not haughty. I do not concern myself with great matters or things too wonderful for me. But I have stilled and quieted my soul..."

Today, on my way home from the doctor, I began contemplating one of my biggest fears: the fear of the unknown. Anyone who knows me knows that I'm a bit of a control freak. I like to know what is going on and when. Like my dad, I love to research, plan, organize, and execute, then start the process all over again. I'm a designer, an artist, and for me, beauty is in the details. I love details. It drives me crazy when details are elusive. The unknown-the lack of details-scares the crap out of me, in all honesty, although at least now I can say it scares me a little bit less.

Although I've always struggled with the fear of the unknown, this year has been the year when my fear would rear its ugly head in a way it never has before.

After two years of trying for a third child and the unknown of whether it would ever happen, I accepted the fact that our family was complete, only to be overjoyed in February when I discovered I was pregnant. Pregnancy is naturally filled with unknowns and worries. When will this nausea and fatigue fade? Will something go wrong before the thirteen-week sigh of relief? Will I have a boy or girl? How will we make it financially after the baby arrives? and the most important one..."Is my baby healthy?" No one is ever prepared for a negative answer to this one; I know I wasn't. The unknowns of pregnancy proved far worse for me than I had imagined they would be.

At nineteen weeks pregnant, during the routine anatomical ultrasound, the doctors began to suspect that something wasn't quite right. We were told that our daughter was measuring small, that they couldn't get all the views they needed, and to come back in a few weeks so they could look again. What was normally a day to celebrate the news of the baby's gender and health began, for us, a plunge into twenty weeks of very frightening unknowns. Each week, as I visited multiple doctors to learn more about my baby girl's condition, additional problems were discovered. Every problem the doctors uncovered led to more unknowns until we were left with the ultimate unknown: will our baby survive?

And if she doesn't, how will we?

Now I'm standing on the other side of the unknown. Now I know how it feels to be "held when the sacred is torn from your life and you survive" (Natalie Grant's Held). Now I know that God will give the grace and the strength and the peace that is completely impossible to believe in or understand when you're not yet faced with a horrific situation.

Being on the other side of this year's unknowns has changed me. I fear the unknown a little less now. God tells us we will have times in the valleys and times on the mountains. Sometimes the valleys are huge chasms with no visible way out. Losing Stella was (and still is at times) a huge chasm for me, but God has been giving me mountaintop experiences with him, showing me how to let go.

I remember how "Let Go and Let God" was a catch phrase in college, and it was so cliche to me until just recently when I realized that the key is to add a "fill in the blank" to this expression. Let go of ________________ and Let God. The blank changes depending on where I am in my own spiritual wallk. For me, this year, not only is it "Stella Rose," it's also " my fear of the unknown."

Believe me, there is still plenty of the unknown out there. I don't know if God will bless us with another healthy baby or if he will add to our family in some other way. I don't how Stella's life will change others. I don't know what she'll look like when I see her in heaven. I don't know some days how I will make it through the day. I don't know. But, I do know that God is greater than the unknown. And that I need to worry less and trust a lot more. Life isn't as scary as it used to be. "As I can say in life or death, God we belong to you."

So, how's the baby?

It's weird how sometimes I can be perfectly calm explaining Stella's death to aquaintenances and even strangers, and other times, something really small sets me off.

Today I had to go to the OBGYN because my incision was separating a lilttle bit in one area, and it was oozing slightly, so I wanted to make sure it wasn't infected. I called and left a message for the nurse to tell her what was going on and ask her if I really did need to make an appointment. She returned my call within an hour, and as I suspected, she wanted me to see a doctor. Two minutes after I got off the phone with the nurse, I aw the OBGYN's number pop up again on the phone. Confused, I answered, and the same nurse says to me, "I forgot to ask you if you're bottle feeding or breastfeeding or if you're supplementing." I took a deep breath, and with my voice cracking, I told her, "Our baby passed away." She was immediately apologetic and told me over and over how sorry she was. Her apologies then turned to concern, and she began firing questions at me. "Are you okay? Have you gotten help? Are you talking to a counselor?" I could barely speak at this point, and as tears were streaming down my face, I forced out, "Yes, I'm okay" and "Yes, we have a great support system at our church." The questions continued on her end, and I'm sure my sobbing answers were really convincing.

I managed to pull it together for the most part as I drove Ely and I to the OBGYN (Ely was at home with me because his tummy hurt), past Kennestone and the bittersweet memories of Stella's birth, wondering if I would ever deliver another healthy baby again.

Not surprisingly, there was a newborn baby and many pregnant mothers in the waiting room. I was okay, then, though. Ely was there, distracting me aloud with his train of disconnected and amusing thoughts. Except for two trips to the water dispenser, Ely was surprisingly calm, rocking next to me, and patting my hand every once in awhile. I think he could sense that it was hard for me to be there.

I met a doctor today who was new to me, Dr. Alarcon, and I can see why some of my friends really like him. Apparently, though, no one informed him of Stella's passing. He was the third person to ask me, "So, how's the baby?" After I explained (again), he apologized for the entire staff, saying there was no excuse for them not to have put it in my chart so that I wasn't asked about it multiple times. I appreciated his apologies, but I still wondered how it is that an OB office didn't communicate this type of information among their staff. I told the doctor who delivered Stella what happened, but maybe she didn't pass it along? The same thing happened during my pregnancy. I'd have nurses tend to me who had not read my chart, and would ask with great enthusiasm, "So, how's the baby?" My own experience makes me think twice about nonchalantly asking routine questions and expecting the canned "good" or "fine." You just never know what people are going through or have been through.

Needless to say, I was relieved to be done with my appointment and on my way home. It was really nice to meet Dr. Alarcon, though, and the conversations I had with Ely on the way to the OB were precious and priceless. I'll save those for another post, though. :)

Life Support

It's been one month from the day we said goodbye to our sweet Stella Rose.

As I continue to heal physically, I mourn the loss of having Stella with me, not only after birth, but before birth as well. Even though I was in serious pain at the end of my pregnancy, I miss feeling Stella push against my belly. She didn't often kick me hard or flip around like my boys did, but she was safe and sound inside of me. At almost every ultrasound, Pam or LeShaun would comment on how happy Stella was in there, and how she was not in distress.

Stella acted like a normal baby while I carried her, sucking on her hand, blinking, opening and closing her mouth, wiggling around. Even though her heart wasn't put together right, it didn't matter as long as she was connected to me. Her heart beat evenly and strong, and although she wasn't growing "on track," she was still growing. I was her life support. My body was keeping hers alive.

In the same way, God is our life support. Despite our imperfections, as long as we are connected to Him, we are alive. We can grow at our own rate, and our hearts beat strongly. He carries us through life's hardships, and He protects us from harm.

As soon as Stella was born-when she was disconnected from me, her quality of life began to deterioriate quickly. She lost the ability to breathe on her own after the heart meds were started. Her little kidneys could not flush the toxins from her body. Her BNP levels (that measure the amount of stress on the muscles in the body) were so high that they couldn't be measured. She couldn't open and close her mouth, suck on her hands, blink, or wiggle around much. Our little Stella was in distress. She was one sick little baby.

When we're disconnected from God, we're no longer experiencing life as God intended. Our quality of [spiritual] life deteriorates quickly. We can't "breathe" on our own or flush out the toxins without Him, without an intimate and personal connection to Him through the blood of his son, Jesus Christ.

My prayer now is that from now on, I will always be intimately connected to my Savior, that He will be my Life Support. It would be dishonoring to Stella's memory if I forget the many truths her life and death continue to reveal to me.

I continue to pray that everyone who knows of Stella will also know the One who is her (and my) Eternal Life Support.

Feeling Alive

I am still marveling at how good it felt to be back in church yesterday and how different I felt. It was like I had never worshiped before, or at least not for a really long time. Every word of every song I sang rang with true conviction, and every song we sang felt like it was written just for me.

"Everyone needs compassion, Love that's never failing; Let mercy fall on me."

I now know what God's compassion feels like. It's amazing and awesome, but really, there are no words to describe it. His compassion does not erase pain, but somehow, His compassion allows me to embrace the pain and yet rise above it in order to hold fast to His great promises at the same time. I'm not sure that makes sense, but that's the only way I can think of how to describe it.

And His Love is never failing. Like Angie Smith said when she first received the news that her baby would not survive outside of the womb, "My Jesus is the same." Reading her faith-filled response took my breath away. Before I knew God, and even as a growing Christian, I could not help but to see God having the same sort of conditional love as an earthly father might have: rewarding us for good behavior and punishing us for bad. Losing Stella and talking with other friends who have experienced the loss of a child (thank you Bethan!) has helped me continue to understand that God does not punish us. He does allow circumstances to challenge us and help us grow, and He gives us the free will to choose how we will react to every degree of trial, whether it be an annoyance or a tragedy. Since God is our perfect Father, He loves us before and He loves us after every trial we face. I am writing this down, because I know there will be times I will be tempted to believe the opposite.

His mercy has fallen on me. I have already seen the many ways His mercy has fallen on me and on my family, and I continue to see mercy fall every day. While I am deeply saddened by the loss of our dear Stella, I am not without hope, and more often then not, I am not afraid of waking up in the morning and facing a new day. "This is the first day of the rest of your life. This is the first day of the rest of your life. And even in the dark, we can still see the light. It's gonna be all right." (Matt Maher, Hold Us Together)

After facing death, there are moments like these when I feel so alive, a new type of alive that I've never felt before. I hope this feeling never fades.

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.

Growth and Struggles

I haven't written an update for awhile because I've had trouble sorting through my feelings. Only two weeks remain until my scheduled C-section date. Now that I'm officially on bedrest, I have even more time to think about the upcoming weeks.

First for the update - Stella's Growth:

I am very thankful that Stella went through a growth spurt and is now estimated to be over four pounds. This Friday, we will find out if she has kept up her growth spurt and has made it to five pounds. This past Friday, though, my amniotic fluid dropped to between 7 and 8. This is the lowest it has been, and if it keeps dropping at the current rate, I won't make it to 38 weeks 6 days (my C-section). Low fluid combined with the concern about her size (plus, my asthma has gotten really bad) are the reasons Dr. Potter put me on bedrest. He didn't realize that I wasn't already on bedrest, so I'm glad I have made it this far without being on more than partial bedrest. Dr. Potter told me, "No website is worth the poop in her diaper." Very funny, but very true. I keep hoping and praying we'll be bringing our baby home at some point.

Some of my struggles:

I have been praying tons, of course, but lately, I feel like I can't focus well enough to pray coherently. So, I'm glad that so many people are praying for us. I'm finding it hard to wrap my head around the fact that we will soon be welcoming our daughter into the world. Part of me still doesn't believe that this is happening. I still don't know if I will be able to hold Stella or see her before she is transferred to Egleston (where she will have surgery). C-sections are scary enough even when you have a baby to hold afterwards, but that's not going to be the case this time. I'm trying to prepare myself for recovering without her.

It's funny how certain passages of scripture never strike you as difficult or even something that you'd question until you go through certain trials. Over a month ago, in Sunday School, we were challenged to read through Psalm 139 every day for one week. I found it really hard to do because these two verses kept sticking out to me:

13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

I have read these verses so many times before, but they now seem difficult to swallow. Is my baby really fearfully and wonderfully made when her heart and her kidneys aren't put together the way they should be? What went wrong? How is it that so many women drink, smoke, and don't take care of themselves while pregnant, and their babies are born perfectly healthy?

Last week in church, we sang "The Stand," which is currently my favorite worship song. One part of the song is "So what can I say? What can I do? But offer this heart, O God, completely to you." When I sing this line, I think of both my heart and Stella's little heart, because I know that we have no control over what happens. The chorus has been my prayer and what I try to focus on when I feel I am losing focus. I don't do so well when left to my own thoughts.

"So I'll stand with arms high and heart abandoned
In awe of the One who gave it all.
So I'll stand my soul Lord to you surrendered
All I have is yours."


Every little improvement or normalcy is a cause for praise! I went to my weekly perinatologist appointment yesterday, and for the first time in my whole pregnancy, my amniotic fluid is in the normal range! 12 is considered normal, and my level was 12.37. Week 34 is the peak week for amniotic fluid, but hey, better to decrease from a normal amount of fluid from here on out. We're praying for Stella to hang in there and keep growing.

Baby Stella Update

This week was a rough one for us. I three appointments including one at Egleston to meet the surgeon and social worker.

On Friday, the perinatologist did Stella's growth check. She made it to three pounds - barely. She is still in the 2nd percentile and measuring four weeks behind in her growth (29 weeks 2 days). Her current rate of growth is only about a 1/4 lb a week, which puts her at only 4 1/2 lbs at birth. We need a serious growth spurt! If she is too small, she may not be able to have surgery right away, which poses a whole other set of problems.

I also found out on Friday that my amniotic fluid has dropped again. It's down to the lowest it's been at an index of 8. It's supposed to be between 10 and 25 in a normal pregnancy and usually peaks around 34 weeks at which point it decreases until birth. I was again told to keep drinking as much as possible and to lay down as much as possible. I'm trying to follow their directions, but I'm not sure it helps. I did some reading and found out that the danger level is 5. If my fluid drops below 5, they may deliver Stella right then. I'm at 33 weeks now and really hoping to make it to my scheduled C-section on October 11th.

Meeting with the surgeon (Dr. Kirshbom) on Tuesday was really hard for both Mike and I. The more we find out, the worse it gets. We really do like the surgeon and feel comfortable with him, but learned that it is not unusal for the diagnosis to change after birth when they can do an echo on the baby. He told us that we may be having a completely different conversation after Stella's birth because visibility is only so good in utero. We also learned that flu season usually starts in October, so it's very likely that the boys won't be able to see their sister once she goes to Egleston. That was really hard for us to hear; we know it's going to be especially hard for Ely. I also got conflicting information from the surgeon than I did from the cardiologist. The cardiologist told us that we'd have some time with our daughter before they hook her up to IVs, etc, but the surgeon said that they'd probably want to hook her up right away, meaning I wont have a chance to hold her at all. Dr. Kirshbom assured us that we would be able to hold her before surgery, but I'm not sure I'll be there yet depending on when her surgery is, when I'm discharged, if I feel good enough to make the trip to the hospital, etc. We're not sure exactly when her surgery will be because of a multitude of factors. Dr. Kirshbom told us every baby is a "custom job" and there's no way of predicting a schedule. There are many, many more details, but I don't really want to try to remember everything all over again. Please keep praying for us. I spent most of the day Wednesday in tears. It's a good thing I was working from home!

While I firmly believe that God can perform miracles, I know in my head that he does not promise them. It's not that I'm trying to be pessimistic or unhopeful. The whole pregnancy I have had a bad feeling. I think this "intuition" prepared me in some small way not to be completely shocked when finding out about all of Stella's problems. I still can't shake the feeling that everything is not going to be okay. Of course I hope and pray that it will be, but I also know (again, in my head) that God is no less God or no less great if we have our little girl for only a very short period of time.

If any of you want to help us out, we could really use help at this point. Mike is doing his very best at taking care of me, the boys, and our house, but he is only one person. I feel physically horrible and have lots of cramping (I think because of the low amniotic fluid). I try to do a little bit here and there, but I am really not supposed to be doing anything strenuous.

We could specifically use help with cleaning our house, yardwork (our front yard is looking like a HUD house), and painting Stella's room. I honestly don't even want to do her room, but the boys have been asking and even praying that her room will get done. We could also maybe use a meal or two a week (although we will also need meals after Stella is born for quite awhile, so I was trying to hold off asking for meals).

Thank you everyone for your support so far.

Stella's Growth Rate Declined

I had a perinatologist appointment today, and although Stella's condition hasn't worsened, she is now 4 weeks behind in her growth. She dropped from the 4th percentile to the 2nd percentile and weighs 2lbs 9oz. My C-Section has officially been scheduled for Monday, October 11th (at 38 weeks 6 days). We are really hoping for 5+ lbs at birth.

Two nights ago, I started experiencing pretty intense cramping. The doctor I saw today said that Stella is being squeezed, and her growth is being further restricted. He put me on medicine that is supposed to relax my uterus. The medicine (Terbutaline) is one that is often used for preterm labor, but it has a lot of controversy surrrounding it. It also has a lot of potential side effects. I'm really hoping that if it's good for the baby, my body will handle it well.

Please keep praying!

She's Growing!

Just like I do every Friday now, I went to the perinatologist this morning. There is some good news! Stella has gained half a pound in two weeks. She is now 2 lbs 1 oz. She's still measuring three weeks behind around the 5th percentile, but she's not getting any further behind at this point. She's maintaining her own little growth chart. Go Stella! (and Go God!) Nothing else has changed; that means that her condition has not worsened at all. To me, that's good news!

Stella was also kicking away while the sonographer scanned her. She has become much more active in the past week. This is also encouraging.

Please keep praying for her and for us. I go through good days and bad. Ten weeks still seems so far away to me. The longer she can stay in me, the better! We see the pediatric cardiologist next week.

Update on Baby

First, we'd like to share our baby girl's name with everyone, so I can talk about her specifically. I feel like it's important for us to recognize her identity, and calling her by name and praying for her by name is helping me bond to her. So here it is: Stella Rose.

I thought maybe it would get easier to know more details about Stella's condition, but it's just getting harder. I've read several blogs of parents who have a child with the same conditions our baby girl has, and in every situation, the first year seems to have been a nightmare: doctors, surgeries, tubes, monitors, medications. We keep gaining more and more knowledge of what to expect, but so much is unknown. Right now, I'm trying to take it week by week, but time is going so slowly.

There has been some good news. For the past two weeks, the pericardial effusion (fluid) around Stella's heart has been normal, and she is showing no signs of distress or heart failure. The fluid increased slightly today, but it was still nominal. Before I knew that the amount of fluid was nothing to worry about, the nurse practioner totally freaked me out, mentioning how concerned she was and that I might need to go on bedrest (I'm kind of on bedrest already when I'm not working). Thankfully, I was able to speak to the head doctor of the practice. He was encouraging, which I totally needed. Dr. Potter told me that the fluid level "was nothing to get excited about. Every baby has a certain amount of fluid around her heart that allows it to beat freely. The fluid is only dangerous if it surrrounds the entire heart at is 4+ mm at the thickest part. The fluid around Stella's heart is only 2mm, and it's only in one spot, which is normal because the fluid shifts depending on the position of the baby."

Last week, we thought that perhaps there had been a mistake about the worst of the heart defects (Interrupted Aortic Arch), because the sonographer told us she thought she saw the whole aortic arch. However, she informed me today that she misread the sonogram, and one of the other veins was mimicking the aorta. She showed me the real aorta and where it cut off. I saw it distinctly for the first time today. It was sad. I still believe that God could peform a miracle, but I don't know if the miracle will be through medical intervention or maybe just in the hearts of those who are following our story.

The doctor confirmed again today that Stella has the same heart defects that we suspected, but that her condition is not worsening at all. I have an appointment with the pediatric cardiologist in two weeks.

I am becoming more and more emotional about the whole situation as I continue to bond with Stella. ( At least I get to kind of see her every week.) Ely is making it really hard for me, as he is already really attached to his sister. He made her a picture, and he wanted to put it on the fridge "so baby Stella can see it." I teared up immediately at his request, and prayed that God wouldn't let anything happen to this baby. Not just for my and Mike's sake, but for Ely's sake. Ely is such a sweetheart, and he is so excited to meet his sister. What's crazy, though, is that he knows the reality of life. He said to me today, "Mommy, if Stella dies, will you have another baby?" Not that these hard realities haven't crossed my mind, but for Ely to voice them makes them even harder to consider.

On top of Stella's difficulties, I am not feeling very good. I am waiting to hear if I have digestational diabetes, and my blood pressure is a bit elevated. I am supposed to be resting. My body tells me to rest, but my mind keeps wanting to nest and do projects. The doctor told me again today that I'm not supposed to do anything that I don't absolutely need to do. Mike has been absolutely amazing at taking care of me and the boys and forcing me to relax, but then I feel bad that he has such a big burden on him.

Please pray for peace for me, that my body can be at rest and nurture Stella the best that it can, and that the next 11 weeks will go quickly - and, of course, that I'll make it to or close to 40 weeks. And, please keep praying for Stella, for our family, and for all those affected by our situation. We need all the prayers we can get. Thank you to those of you have been helping us out already through prayer and through serving our needs. We really appreciate it!

Our Baby Girl - we're 1 in 100,000 - PLEASE PRAY!

To all our friends and family,

Today, we found out that our baby girl has a very rare congenital heart defect called Interrupted Aortic Arch (happens in 1 in 100,000 births). Here is a great site that explains IAA and the related heart defects that are associated with it, all of which are present in our baby girl:

What this means for us is a very long road of ups and downs for us over the next six months. It is 50% likely that our baby girl also has DiGeorge Syndrome because she has the IAA, a pelvic kidney, and is small for her gestational age. Most likely, we will not find out if she has a genetic disorder until after she is born. From what I have read, DiGeorge happens spontaneously 95% of the time and is not inherited.

The plan is for me to have a C-section at Kennestone hospital. If our baby girl is stable, we will have a chance to see and hold her. I won't be able to feed her, though. Within a few days, she will be transferred to Children's Health Care of Atlanta in Egleston for open heart surgery. If everything goes well, she will be there for an estimated two-three weeks. They hope by the time we bring her home she will be able to eat from a bottle at least partially and receive the rest of her nutrition from a feeding tube.

We saw the ICU at the Children's Hospital today, and it was totally heartbreaking. It was hard enough to see other people's babies after surgery; nothing will prepare me to see our own baby. Not to mention that I won't be able to be there for her right away since I'll be recovering from a C-section.It is really important for our baby to make it to full-term, and right now, the doctors aren't sure if the placenta is completely healthy or if the fluid around the baby's heart will prevent a full-term delivery. Please pray that our baby will grow as big and strong inside of me as she can before birth for the best possible chances of survival.

The song from the band Fee has been my song to say it all and explains the hope I'm clinging to. I'm grateful that so far, God has given me the grace not to be angry or bitter about this sad news. I know that this child is not an accident, and if this is what it takes for God to receive the glory, that all I can do is trust. We are hoping for the best and trying to be prepared for the worst. We will try to keep you updated.


You said
you'd never leave or forsake me
when you said,
this life is gonna shake me
you said
this world is gonna bring trouble on my soul
this I know

when everything falls apart
your arms hold me together
when everything falls apart
you're the only hope for this heart
when everything falls apart
and my strength is gone
I find you mighty and strong
you keep holding on
you keep holding on

when I see
darkness all around me
when I see
that tragedy has found me
I still believe
your faithful arms
will never let me go
and still I know

Sorrow will last for the night
but hope is rising with the sun
(it’s rising with the sun)
there will be storms in this life
but I know you will overcome
but I know you will overcome


About This Blog

My photo
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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