faith, funeral, grief, losing a child

Saying Goodbye

Hannah


The Sunday after Ellianna died I had no intentions of going to church, but I couldn’t bear to let Jacob, Baylie, and Bella be taken without me…what if they needed me?! So I went through the motions to get us there. I held myself together right up until the music started for worship. The tears wouldn’t stop. In the depths of my hurt I couldn’t even offer any praise. The only line I found the strength to utter was “My hiding place is You.” God was there all along—our worship leader told the crowd to sing it out again, but this time to sing it for the people around them that were at a place where they couldn’t. I knew that was me. All around me hands lifted high, holding us up, not even knowing who we were or what we were going through. Our ever-present help in times of trouble.

Wednesday night was Ellie’s visitation. Mark and I went early to have some time alone with her. Hard doesn’t even begin to describe it. She was so beautiful in her tiny white dress, a purple flower perched above her fluffy mohawk. She looked just like she was sleeping. I had been wearing the Piglet necklace Mark had gotten her at Disneyland… we wanted it to stay with her, so I took it off and fastened it around her neck. So sweet. The other kids arrived with Mark’s parents and we led them into the room to see their sister. All three of them crumpled into tears as soon as they saw her. Just when I thought my heart couldn’t break any more, it did. It was a hard night. Each new person that came brought more memories and emotions. We were so thankful to be surrounded by so many family and friends.

Thursday came though we willed it not to. Her service was beautiful. Just the tribute we wanted, with heartfelt music and sharing from close friends and family. As we followed her tiny casket outside I realized this was the last time she would be in our church. The ride to the cemetery was long and peaceful. The kids shared smiles about getting to ride in a limo…their laughter a balm to our bleeding hearts. Her graveside service was brief, and then we stayed behind to watch her be lowered into her final resting place. The great depth of her grave was terrifying to the kids, especially Jacob, but somehow it made me feel she was safe. The day continued with a reception time to visit with friends and family…

This past Sunday was our first day to just be a family again with our relatives and friends having traveled back home. Although the stillness seemed to bring more reality to missing her, it was also a time of peace and reflection. I got her room back in order and placed her flowers in many rooms of the house. I sat in her rocking chair and rocked…and just missed her.

So many have passed on words of encouragement, and as I have told them, even with our faith the hurt does not lessen. We will have a time of grieving where even though we have hope, we will have an ache and an emptiness that cannot be soothed. Ellianna’s death doesn’t have to be God’s will. If everything was God’s will, there would be no reason for us to have free will. We believe He is grieving with us. I’m sure there will be many stages we go through, and for us, the right thing to do is to embrace each one.

Each day holds special memories, sweet smiles, and painful reminders…each night, hollow emptiness and vivid dreams…. Through each tear we have seen promises of tomorrows and healing of yesterdays. One foot in front of the other, our journey continues.

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faith, losing a child

The Day The World Went Wrong

Hannah

It is hard to know where to start; my heart is so heavy…

Several weeks ago, I felt like I heard a difficult question in my heart. “Would I be willing to give Ellianna back to Heaven if it meant salvation for someone else?” Struggling to understand if this was even God, or if I had just made it up, I replied with an angered “NO.” Why would God even ask that of me? Ellianna already seemed to have crossed the scariest bridges and we had seen such healing in her.

Last Tuesday, Ellianna was fussy in the evening. She cried like something hurt her and she was not very interested in eating. She already had a check-up scheduled the next day, so I gave her some Tylenol and found she settled if she could stay snuggled against me. She slept restfully in my arms through the night, waking only briefly. The next morning she was frighteningly pale and refused to nurse and hardly sipped from a bottle. She screamed whenever we moved her. I felt panicked. Ellianna’s weight check was scheduled for 1:00 in the afternoon. We were expecting them to tell us she needed a feeding tube again because she just wasn’t gaining weight.   Worried about why she seemed so sick, we called to see if they would get her in sooner, but they said that was the only time they could see her. I had planned to spend some time with a friend that day, and since Ellie was calm and comforted laying on Mark’s chest on the couch, I headed out for a few hours before coming back to take her to the doctor.

By the time we got to the doctor, there was no denying something was WRONG, and I wasn’t going to let them just send us away again. I didn’t even have to plead though. When the doctor came in to see her, Ellianna was just lying there, hardly moving, constanly whimpering this pitiful, guteral groan. I was in tears. “Something is wrong, this isn’t her. Please DO something.”  We were sent right to the emergency room.  I didn’t even wait for the ambulance.  I told her doctor, “I can have her there before the ambulance even gets here to pick us up.”

Half an hour later we were settled in the emergency room. Once again, nurses were poking and poking, trying to get an iv, and finally giving up and putting in a feeding tube because “this poor baby just needs something to eat!” I bit my tongue, holding back the verbal lashing I wanted to unleash on these professionals who seemed so blind. I knew there was something else going on.

The pedicatric neurosurgeon was out of town…again. Finally an adult neurosurgeon came to examine her, and it took him about 5 seconds to see that there was a problem with the shunt in her brain. It wasn’t working. By this time, Ellianna was dfficult to awaken. She was just sleeping in my arms.  The surgeon told us he would have to do surgery to fix her shunt, but they needed to stablize her first.

Finally in the PICU they were able to get an iv started and get her some fluids to prepare her for surgery. I sat as still as I could holding Ellie. She whimpered every time I moved her at all. It broke my heart to know she was in so much pain. I sang to her, every song I could remember… hymns I learned as a child, and the song my mom always sang to me. I kissed her soft cheeks and told her it was going to be ok; that they were going to fix it and she would feel better soon.

 Mark came with her sisters to see her before surgery.  We both almost came unglued when they came in and said they had to poke her AGAIN for more blood because they must have mixed up her blood with someone else’s. “That couldn’t have been hers,” the doctor said, “she’s not that sick.” Big surprise when the next set of blood tests came back with the same terrifying results. Nurses were scrambling to start another blood transfusion before they started the surgery.  Our girl was very sick.

Since our oldest son Jacob was away at camp, it was Mark, Baylie, Bella, and I that walked Ellianna down to surgery. I remember this looooong tiled hallway…the four of us holding hands as we walked…and I looked back and thought, “I bet this whole hallway could be filled with all the people praying for us right now.”

Mark sat with the girls while I walked Ellianna back to surgery. In the holding area she was crying and I couldn’t hold her. She was posturing with her arms and legs and my medical background screamed the knowledge of what that meant. I wanted to be hysterical, but as the first tear fell, the nurse who was waiting with us grabbed my shoulders. “No,” he said, “She needs you. You’re stronger than that. You’ve got this.” And then they took her. The tall metal bars of her crib and all the pumps and equipment surrounding my sweet little symbol of grace.

Once we got news that the surgery went fine, Mark took the girls home for some sleep and I went back to the PICU to wait for them to bring Ellianna back to her room. She remained sedated with a breathing tube, but in a way it made me feel better that she was peaceful. Now, I thought, we heal. 

She looked better. The shunt had been fixed, she was pink again from the blood she had received, and her vital signs were more stable. The surgeon said the fluid in her brain had looked cloudy so it was sent off to be tested.

The worst was still ahead. Within the hour the results came back saying she had the most serious kind of infection, and she was to be taken back to the operating room to remove both of her shunts and put in an external drain to wait for the infection to clear. Mark was already tucking the girls in at home and was hardly able to move because of his recent back injury. He had to stay at home and wait for any updates. A couple good friends came by and stayed up through the night with me.

Back from surgery the second time, Ellianna was kept sedated.

Early the next morning I could tell the doctors were concerned about something. I don’t think the neurosurgeon even looked at me when he said “This is serious, and it may be that she won’t survive.” I was stunned, and Mark made arrangements to hurry back to the hospital.

We stood with close friends as they told us that her CT scan showed 50-60% of her brain had already been destroyed. We were shattered, broken, gutted. I cried with her physical therapist who came by to see her. I told her about what I thought God had asked of me. I told her I felt like as soon as I said “yes” to God, she would be gone, and I was not going to do it.

  It was not long after that report that the horrible reality started sinking in. We watched in horror as her heart rate slowly dropped lower and lower.  Early on in the NICU, her heart rate would drop and all she needed was a little stimulation and that number would jump right back up. “Rub her!”  I shouted at Mark.  But this wasn’t the same; the number continued to plummet. Beeping and dinging and running feet, and CPR was begun. Mark and I stood helpless in each others’ arms, watching her slip away. That’s when I felt it. An overwhelming peace. A peace in saying “ok, You can take her.” I didn’t want that peace though. I wanted to scream!  I hated that I felt that way. But it stayed.

After a few minutes, her heart beat came back and she stabilized. We sat in shock and disbelief. Then it happened again. More CPR, more helpless watching and crying, and then her heartbeat was back again. At this point the doctor told us—even if they kept bringing her back, there was really no chance of neurological function. Through our tears we knew we just wanted her to go in peace in our arms, without anymore trauma to her tiny body. They took everything off except the breathing tube, wrapped her in a blanket, and placed her in our arms.

We cried tears from the deepest places within us. Mark said “I’m sorry I never got to take you out for lunch on your birthday” and he did “Twinkle Star”, a bedtime tradition in our house. I told her how much we loved her and asked her to send butterflies for Baylie. We could tell she was gone, and asked that her breathing tube be taken too, so we could hold just her and see her precious, most beautiful face. I have never had emotion more raw or so deep. My chest felt physically crushed.

I started to feel frightened by watching her color change.  Her nurses took her back to her bed and made impressions of her hands and feet for us. They let me bathe her and my tears would not stop as I gave her her last bath and combed her sweet smelling hair into one last mohawk. By this time she looked more peaceful. Like a delicate porcelain doll, and boy did she look just like her daddy with all of the tubes and stickers removed from her sweet little face! We held her again, as long as we could until they came to take her to the funeral home. Setting her down on that stretcher broke the last piece of my heart and we sobbed as they took her away.

I have more to share about the days that have followed since then, but for now I am so drained from these exhausting emotions. Please stay with us, share in our grief, smile in our memories, and hold us up as we make it through this most impossible of weeks. We are thankful for so many people who are surrounding us in our time of heartache.

Please leave me a comment; it lets me know you’re listening!

brain bleeds, cerebral palsy, special needs

Holding On (for dear life)

Hannah






As Mark and I looked into adoption, we were drawn to children with disabilities. We felt we were strong enough and well-equipped to meet the needs of a child who might be passed over by others. Although we filled out our check list for a variety of special needs, I felt especially drawn to downs syndrome and cerebral palsy. I guess it was my pride that made me so sure I could handle these things…

Once again, God had plans…

I haven’t detailed all of the things we have been through with our 4 month old, Ellianna. In short, after bleeding in her brain due to premature delivery, she has had 3 brain surgeries and now has a permanent shunt from brain to belly to help her regulate the pressure inside her head. As these complications arose, we were told she was at high risk for disabilities, especially cerebral palsy. We were told we needed to get her into therapy as soon as possible to improve her outcome.

I have a confession…

When I first tried to accept that our daughter could be disabled I was very angry. I thought how dare we be given this burden when we had already said we were willing to accept and love a child that had been abandoned because of this. I felt extremely guilty. It was one thing to adopt a child that has challenges, but to give birth to my own that was this way made me feel responsible….like I had caused this harsh imperfection. Trying to grasp all of this and turn it into something good seemed impossible and I felt like I was sinking. That is probably very shocking for some of you to hear, but there it is, the sin in my heart.

Since her most recent surgery, we were told our sweet little Ellianna has many signs of cerebral palsy. So, ok. Here we go. I still have some unsettling thoughts about it, but I am trying to embrace this new chapter. God is showing us the trials of OUR OWN little baby having special needs… teaching us perhaps how much harder it is to love and care for one chosen by adoption? I don’t know, but I do know we are right where He wants us, so I am trying my best to be ready for whatever He has to show us. Life over the past many weeks has been a whirlwind that has left me little time to contemplate. We hope we are at the tail end of surgeries for awhile and will have as long a break as possible until the next time she sees the inside of an operating room. Our days are filled with trips to physical therapy, occupational therapy, neurosurgeon, pediatrician, and now weight checks and food therapy. I feel like I have to hang on or be thrown off. I have to remind myself to be still and to take the time to enjoy the small moments.

Here we are; at this bend in the road. Wondering what’s around the next corner. A little hopeful, a lot fearful, but clinging to faith. There are still days I’m frustrated and days I question my strength. There are days I pass the section of little girls shoes and burst into a storm of sadness and tears wondering if I will ever get to pick out sweet little shoes for Ellie, or if she will even walk. I keep repeating the verse a special friend gave me: “He who began a good work in you will carry it on to completion until the day of Christ Jesus.” (Philippians 1:6) This continually reminds me that this little angel was brought into our lives for a higher purpose.

Please stay with us as we embark on this journey. Celebrate the victories with us, and hold us up in the battles. We would be nothing without our army behind us.
Her most recent surgery, still healing.

All girled up—4 months old

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Uncategorized

In HIS time

Hannah


The Fruit of the Spirit that I lack the most is PATIENCE. I like to know what needs to happen and get it done.

God has been been speaking to me about this the past few days as it relates to adopting. I know that He has called my heart to adopt, but I have not stepped back before now to look for His timing. The very same week we decided to adopt, we found out I was pregnant with Ellianna. This is going to sound terrible, but I was a bit frustrated at first. I knew that most agencies will not process your adoption while you are expecting, and require you to wait until your youngest is a certain age. I decided though that we would just wait until the baby was the required 3 months old this summer, and then get the ball moving again with our home study. It was earlier this week when I started thinking again about what the next step is, that a song popped into my head that I have not heard in years. “In His time….In His time…He makes all things beautiful in His time…”. I had to stop and think. I realized that I have been pushing ahead; making checklists and deadlines without even considering what HIS timing may be. There have been way too many things in my path that have been saying to slow down. I feel convicted…stopped in my busy tracks…I need to focus on what is here now. God has given us challenges to work through with our son, hurdles to cross with our infant daughter, a marriage that can always use special attention. I am not fond of waiting… but God knows all my inner workings and knows I need the practice. So here we are… time to strengthen what He has given us and wait on the things to come.

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brain bleeds, faith, VP shunt

Catching Up

Hannah

LIFE got in the way of blogging. So here is a little update on life…
Little Ellianna is 2 and a half months old now. She tipped the scales at 6 pounds today!

The past 2 months have been a roller coaster of ups and downs. We finally got Ellie home after battling brain bleeds, digestive problems, and trouble feeding. She had 3 blood transfusions while in the hospital and surgery to place a shunt to drain the excess fluid from her brain. She fought hard and even gave a little attitude. 2 days after celebrating Easter, after 8 weeks in the NICU, we tucked her tiny little self into a car seat for the first time and drove her home to begin the rest of her life.

We all kept pinching ourselves for the first few days, basking in the surrealness of having her home. The older 3 are mesmerized by her. She sleeps a lot. Moments of quiet are punctuated by the shrill squeal of her monitor alerting us that she is not breathing or her heart rate is too low. She still will not nurse much, but she takes a bottle like a champ. Most of all, she is perfect. Beautiful, soft, delicate. A CAPTIVATING reminder of what an awesome Creator we serve.
This past week she had surgery again. She needs to have a permanent VP shunt put in to help her brain function. Unfortunately, there is still too much blood in her brain to do this. They went in on Wednesday to provide a temporary fix for now. We are expecting in 3 or 4 weeks she will need surgery again, hopefully to install the permanent shunt.
The first surgery was terrifying. She was so tiny, so fragile. They had to resuscitate her…then she was not waking up… a whole nother day on the ventilator…scared she might never wake up. She held on though. The second surgery was smoother. No complications and she woke right up. Being more alert this time meant she had more pain, but her cries were strangely comforting.
Today I was thinking… this journey has been hard… I have been scared and at times angry. God has provided for us all along the way. He has kept her safe and allowed us to keep His precious gift. I know that is not the case for every parent. Mommies and Daddies have had to kiss their sweet babies goodbye. They have gone home with empty arms and aching hearts. It humbles me to realize how GRACIOUS He has been through all of this. I want to savor each precious moment with Ellianna.

I was reading through my friend Linda’s blog today; she has been posting about Ellianna and asking her friends to pray. There is note after note of people….families, parents, children…on their knees for our sweet baby girl. People we have never met or even spoken to. People whose names we do not even know. The tears flowed. I am so humbled and touched and awed at what God is doing for us. Makes it seem silly that my faith is so small.
Please leave me a comment; it lets me know you’re listening!
birth, Preemie, pregnancy

And Then There Were Six…

Hannah

I guess I spoke too soon as I confidently joked “well this is how far along I was when Bella’s water broke, so I guess it’s all a piece of cake from here!” After being anxious throughout this pregnancy, I felt a bit of relief as I passed 28 weeks, confident the frequent exams and injections I was receiving were proving helpful in ensuring this baby stayed inside until she was well done. The events of March 2nd would tell a different story…

Over the past few weeks, I had been experiencing bouts of strong contractions, but making sure I was well hydrated or relaxing in a hot bath always seemed enough to calm them for another day or two. When my day started in the grip of contractions on Wednesday, I hardly thought anything of it, increasing my water intake and taking several relaxing baths throughout the day. The second half of the day they were much more noticeable, and I began timing them to see why it felt like they were coming so often. 3 minutes apart. On the dot. I have tried not to get too worked up about pregnancy symptoms or quirks, because I don’t want to be the crazy woman who calls her doctor every other day because she’s paranoid after a traumatic experience. So I took a deep breath, called my dear friend Jami to see what her plans were the rest of the day, and texted Mark, hinting I might need to get checked at some point, but not to worry. I tried to carry on with my routine.

When the time came to run the kids around for their evening activities, I had an overnight bag packed and had sent a more strongly worded text to Mark, trying to figure out when he would be able to break free from work. When I could hardly walk through contractions while picking Baylie up from cheerleading, I begged Jami to please come over and called my OB office to find out where the best place for me to go would be. I then sent Mark a text demanding he come home. I was trying to console Jacob and Baylie and convince them I would make it up to them that they were going to miss AWANA, when my water broke. This, although frightening, I had dealt with before. What I was not prepared for was to see that instead of being clear, there was meconium, a sign that the baby was in distress. That was the end of me feeling calm. I was panicked and hysterical inside, but forcing myself to stay pleasant so the kids wouldn’t be scared. I knew something wasn’t right.

Fortunately, Jami and Mark arrived at about the same time. He didn’t even ditch his work clothes, just hustled me into the car and we set out for the hospital.

Things were kind of slow at first as the nurses got vitals, hooked up monitors, and tried to track down records. It was confirmed I was in active labor and my water was definitely broken. I was given steroids for the baby’s lungs and then talked about seeing if labor could be stopped to give her a little more time. That plan was immediately aborted as little Ellianna’s heart rate began dropping and I suddenly started hemorrhaging. The doctor announced, “we need to have this baby now, by c-section.” After that, my room was a flurry of nurses and doctors rushing about to get me ready for surgery. It was scary to see the urgency on everyone’s faces.

In the operating room, it felt like such a long time before they finally got Ellianna out. It was not delicate, I remember feeling like I was gonna fall off the table, but was so thankful to not be able feel as much as I did with Isabella’s c-section. The chatter between the doctors and nurses was pretty unnerving. They didn’t hide their shock very well when they discoved what was going on inside. The placenta had torn completely away from my uterus, leaving Ellianna without her lifeline. Ellianna made her way into the world, still in the amniotic sac, which had to be pulled away from her. She had been delivered within a small window of precious time. One of the NICU members held her tiny delicate body up for me to see before they rushed her off. She looked so little!!!

I got to visit the NICU on the way to my room and got my first good look at my newest baby girl, Ellianna Grace, born at 8:10pm, weighing 3 pounds 5 ounces, and 16 inches long. She was all snuggled into her isolette, all kinds of tubes and wires helping her along.

So at 29 weeks, I have already traded in my baby bump for a precious baby girl. This will be a long road for her, with ups and downs along the way, but we will be there for every bit of it. We are blessed that she arrived safely and pray for her continued healing and strengthening. Can’t wait to bring her home!!!

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adoption, special needs

Baby Steps

Hannah

The first of our adoption documents have started trickling in. I am giddy with excitement! The growing packet of papers is a tangible reminder that bit by bit, we are getting there.

We have been watching the list of waiting children that our adoption agency posts, and are awestruck as we gaze at each hopeful expression that longs for a family. It’s both exciting as well as intimidating that one day, we will welcome one of those tiny faces into our home. It also makes me feel small and helpless to see how many there are, just waiting… longing…wondering if someone will make them their own. It’s my prayer that one by one these precious lives with by united with families that will fill their lonely hearts with love and acceptance. It begins with one…

We have been reading through the descriptions of the special needs that many of these boys are burdened with. We talk about what kinds of needs we feel we are capable of handling. While we are blessed with the motivation and resources to provide for even the most serious disabilities, we also believe it’s important to always consider how each challenge or health risk would affect our other four. We want to put the safety and comfort of all our children at the forefront of our decisions.

Another exciting development is God’s provision of a bigger vehicle for us. We were able to trade in my sardine can of a car for a spacious Honda minivan, which in spite of being, well, a minivan (which I swore I could never be persuaded to drive) is so roomy and comfortable, the kids are convinced we bought them a limo! It’s a relief to have them all able to sit without touching each other, as well as have a safe place for a new baby, in addition to still being able to save room for more. God is so good to us. He provides in ways we never imagined.

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adoption

Seeking…

Hannah


Praying, seeking, asking, discussing. Searching for answers that seem so big, and yet may be so simple. This is someone’s life we’re talking about. Uprooting a little child from all they’ve ever known to start them over a world away in what we believe will be a life that will offer them much love and hope. That’s a pretty big deal. It’s a position we want to know God wants us in, and know we are going about it in the way He has for us. We see Him daily in the little things; that’s how we know His hand is in the big things too.

Mark and I talk. We plan, we dream, we wonder, we read. We see so many choices and pathways out there in regards to adoption, and we know we must wade through it all and come out the other side with a reasonable plan. God has been whispering to our hearts…   

 We want to adopt an older child, past the infant stage, and are going to submit a package for special needs, which could range from anything such as skin discolorations, or major heart or limb defects. God has enabled us to provide, and we are choosing to trust Him to show us what needs we can best meet.

Life is a mysterious and thrilling adventure for us that has brought us to many challenges we are humbled to say we have made it through. Each new step brings us closer together as we revel in the excitement of what we have been ordained for.

It's a girl

All Pinked Out

Hannah


At the halfway point of my pregnancy, things are running smoothly. With frequent check-ups and the most up-to-date treatments, my doctors are ever-vigilant in doing everything possible to ensure our baby GIRL stays cozy inside for as long as possible. That’s right, more ribbons and curls! I have to admit, this news stunned the little ones a bit. In fact, my heart ached to see Jacob’s deep sobbing and his pitiful plea that “I have been waiting for a brother for 8 years!!” When we found out we were expecting, Mark and I talked about if it was a girl, would we still choose to adopt a girl over a boy. The answer at that time was yes. However, now that the possibility of a houseful of 4 girls exists, I find my heart stirring again. Wondering if Jacob’s loneliness and this little baby’s triumphant presence is God’s hand gently leading us toward a little boy that waits for a family. I just don’t know, but it is constantly in the back of my thoughts. All to do for now is to pray…and seek…and wait. In the meantime, we are readying our hearts and our home to welcome our newest daughter to the family.

adoption, pregnancy

Seeing Double!

Hannah


So there seems to be a little confusion about the tiny people we are adding to our family… it is true, in addition to the little child growing in our hearts as we pursue adoption, my belly is also growing as we are pregnant as well! God never ceases to amaze us by changing our plans when we think we have everything under control:) Mark and I are ever so grateful for the extra space we are blessed with in our new home. We are praying for good health and protection as we expand in size and in love.

Although our newest addition will push our adoption timeline a bit, we will continue to work on our paper trail and have some time to relax and enjoy the new arrival while we wait on a referral.

God is so good and we feel so blessed to be the parents he chose for our little ones.