Monday, December 28, 2009

Elijah Walks! God is Cool!

Sometimes it's easy to forget--even for me and Melissa--that Elijah is 3 years old and not a little baby. But this video proves, once and for all, that he is developing better than we ever dared to hope, both physically and mentally:

THAT'S RIGHT. Today... for the first time... Elijah walked upright on his own. His Grandpa Ken built the pipe frame, and it's a pretty impressive feat of engineering. It's the EXACT right height for Eli to stand and rest his arms on the top of the frame, then slide underneath him as he walks forward. This was not even on my radar today when Ken brought the frame by the house. Elijah walked today for the first time. I feel like our faith has been rewarded just when we needed it most. Ken, thank you very much.

Be sure to read Melissa's recent account of Elijah's dramatic birth three years ago this month, then watch this video to see how far we've come. God bless you!

Finally, the Prayer Book we put together for Melissa's present was a huge success. I received several from the mailman, and I put those in a scrapbook (thanks, Lori Reed) along with the ones I printed from e-mail. If you'd like to say a prayer for Elijah before the big surgery on Jan. 5, e-mail me or post it here, and we'll included it in the book. (If I sent you an invite to participate, and you didn't get it, I messed up your e-mail address. Sorry 'bout that.)

Sunday, December 27, 2009

On the third anniversary of my extraordinary son's birth

Here's my disclaimer: This is how I remember Dec. 23, 2006 and the few months following. I am well aware that I have some blanks in my memory. I know I do not remember the entire first 24 hours or 9 days or even 2 months. I think my brain has blocked some memories so that I could survive. I will be updating this with my entire recollection and I will let you know when you should take another peek when I feel it is as complete as I can make it.


On the third anniversary of my son’s birth, I’m embarking to tell the story of that fateful night of Elijah’s arrival the weeks leading up and the bit afterward. Perhaps I want to write it so as to forget…knowing it is recorded for posterity. Perhaps I want to write it so as to remember it. Either way, I believe I am ready to see the story on the page.

My obstetrician, the one I trusted with my daughter’s birth and returned to for my second child, knew something was wrong. I can remember the exact visit I had with him when he figured it out… and didn’t tell me. I was sitting on the table asking mindless questions like: my back hurts is that normal and I’m seeing spots in my vision is that normal. He was very occupied with my charting – furrowing his brow as he calculated the size of the child within me. At the time, I was not alarmed…at all. He would answer my questions with little thought or consideration of the question. He stood and returned to me to feel my stomach.

At the first ultra sound, the doctor reported to us that the child may have club feet, but that the report said both feet and generally when the report says that, it’s wrong…chalk it up to positioning of the baby. So, we had a second ultra sound. During that test, the technician was working very hard to get a look at Elijah’s hands. I questioned her, why are you doing that. She said, “I don’t know, it just says to look at the hands, I guess they couldn't see really well in the last one.” She also told me the feet still appeared to be clubbed. At my next doctor’s visit, the doctor told me that the clubbing was still apparent, but again on both feet and that is usually not accurate. He assured me that club feet is very repairable. I asked him why the focus on the baby’s hands. He said, and I’ll never forget it, “Oh, that’s nothing, I don’t know of anything that affects the hands and the feet.” Well, sir, meet my son!

Toward the end, I asked him, “how much do you think he weighs?” He said, “um, six pounds.” I was really surprised. I was near the end of the nine months and I figured the baby was larger than that. The doc questioned, “Doesn’t he feel smaller than your first did?” I said, “yes.” Again, I didn’t think anything about it. The baby was simply smaller than my first.

I must interject that I’ve decided it was truly for the best that we were not fully enlightened about Elijah’s challenges before Dec. 23, 2006. The knowledge would have caused more trauma and fear. My only regret is that Elijah wasn’t born earlier. He was lacking amniotic fluid. I told the doctor I was leaking and he convinced me I was not.

The doctor was planning to induce my labor around Dec. 15 so we could get the ordeal done before the holidays. Seemed like a fine plan to me. December 15 neared and the doctor said my body wasn’t ready for delivery and we would have to keep waiting. I was disappointed, but fine with more waiting. He considered it again later in the month and again determined it simply wasn’t time.

On December 22, I was watching TV with David, his dad and Sophia when I started having stomach cramps. I got in bed. The pain got much worse, very, very fast. I realized it was coming and going in intervals, but coming very, very fast. I told David we must go to the hospital. It was about 9 p.m.

I was excited that the timing worked out that David’s parents would be in town for the birth of their second grandchild. I had invited Anna to be in the room during the birth, but she declined the offer…cannot blame her. So, the plan was my mom and David would be firsthand witnesses.

The ride to the hospital was difficult. I was certain this was it. I knew I wouldn’t have one of those stories about being sent home from the hospital due to false alarm. My dad called as we were driving to the hospital. I told him where we were headed and knew they would be meeting us there. The contractions were familiar, but yet very different from Sophia. They came very, very fast.

I was quickly put in a delivery room. A nurse came to check me to say I was at a four. I was shocked. A four…it took me hours to get to a four with Sophia. I asked if I could have the epidural. They said yes and put it into motion. It took about an hour to receive. Upon completion, the nurse checked me again. I said what am I, she said 10. Again, SHOCKED! I asked her about the water breaking…she said she didn’t feel anything but the baby’s hair. They called the doctor to come deliver the baby. As I waited, someone came in to find the baby’s heartbeat and had trouble…she called in backup. They found the heartbeat, but instructed me to lay on my side and wait. Another nurse came in and set me up to practice pushing. She said push, I did. She yelled, STOP, stop, stop. I did. The doctor finally arrived, poked his head in to ask if he had time to change his clothes. The nurses said yes, hurry. I had asked for a mirror. I didn’t do that with Sophia and I decided I would with this one. The doc came back and asked me to push. I did. Stop! I did. Turns out the baby was so small, the process of getting him out was too easy. At some point in all of this, I knew something was really wrong. I remember turning to my mother and saying, “something isn’t right.” She reassured me by saying “you are lucky to have an easy second birth.” I appreciated her perspective. I wasn’t reassured though. I did the final push. The baby was out. My mom said, “He is so small.” I remember thinking, cry, cry. I didn’t hear anything. I asked “what’s wrong” and no one answered. Soon, I realized the baby wasn’t in the room any more. I turned to my mom and said “did they take him away?” She nodded. I laid in the bed with my doctor working on me…not saying a word. I kept asking him, what is wrong and he just kept working. Finally he answered me, his forearm (pointing) appears short, that’s all I could tell.

Okay. Um. Okay.

He asked me if I had the blood test I said yes. Finally, my doctor was finished with me and said, “I’ll go and see what I can find out.”

A nurse came in and said to us, “he’s going to be fine. I hear him yelling his lungs out down there and that is a good sign.” I don’t know her name and I cannot picture her face, but she was the only voice of hope in those moments of true fear...the kind of fear you cannot imagine unless you've experienced it.

At some point in these few moments, David left the room to go to speak to those in the waiting room: my sister, my brother, David’s mom, David’s dad, Sophia and my brother’s girlfriend. Clearly, I wasn’t there, but I think he caught his parents in the hall and spoke to them. While he was in the hall, the neonatologist came down to talk to us. I could hear him talking to David in the hallway and I told my mom to get out there and listen. The nurse heard me say that and interrupted the hallway conversation asking the neonatologist to come in and speak to me too.

His words are unforgettable. Forever etched in my mind. With an even tone, he said, it appears your son is missing a bone in each arm, he has no thumbs and it appears he is missing a bone in each leg. That’s all I remember about his discussion with us. There must have been more. I am blank.

I was staring at the wall – with no emotion. My mother said, it’s okay to cry…and I did so, violently.

My doctor came back in to say, Dr. X said he told you the child might have clubbed feet. I nodded. Pretty sorry thing to say. Looking back, that was Dr. covering for Dr.

Soon, they rolled Eli in to the room in a covered bed. David said “can we hold him,” I said, “no, I don’t want to hurt him.” The nurses got him out and handed him to David who put him right down on my chest. I kissed his head and they took him away. His head was perfect. I saw nothing more. He was swaddled.

Some time through all of this I was told he weighed 4 pounds 2 ounces. I knew that was not good. I didn't understand. He was born on his due date...I expected him to be 9 least. I was shocked and scared.

I also know that at some point my mom told my sister to tell those in the waiting room that his legs and arms were affected. That really is all we knew at the time. My sister remembers going to the waiting room. She was crying so my brother's girlfriend took Sophia away to visit the vending machines. Lori doesn't remember telling them, but assumes she just went up to dad. The waiting room was empty except for those awaiting Eli. I know God planned it that way.

Next, a nurse came in and said to me, you don’t have to worry about your son tonight. I will be right by his side all night long in the NICU. Again, I cannot picture her face, but her words were light on this dark night. Thank God for that procedure of reassuring the new mom with the baby in the NICU.

David was there…I just don’t remember him. I know when they wheeled Elijah out of the room, I said to David, “follow him.” He did. My mother stayed with me. My dad, brother and sister from the waiting room came in to the delivery room to check on me...maybe Sophia came too...I don't remember. I don’t remember our conversation. They left to go home.

Faster than what one would expect, they moved me into the maternity ward of the hospital. The nurse on that floor came in and said “they told me what happened, I’m very sorry, you just get some rest.” I was alone at that time. My mom and dad came in to tell me they had seen him. My dad said “he looks good, you all had me worried.” We all agreed I would go to sleep and they would go home and be back in the morning. Eli made his entrance at midnight so this must have been 3 or 4 in the morning.

I knew David was in the NICU with the baby. I was alone in my dark hospital room.

I had an undeniable feeling that someone was standing beside the bed. The person was a huge comfort to me. I had this overwhelming feeling that everything was going to be okay. I had barely even set eyes on my child, but I had indescribable peace in my heart. It was at that exact moment that the overwhelming fear of the night disappeared. The person by my bed stayed for awhile comforting me. I think about that moment, that divine peace, often as I face hardships with Elijah. I know that my Savior holds Eli. I know he is surrounded by angels. He is light.

I cried a lot. Despite the feeling of comfort, I cried. I didn’t sleep even a single second. At some point, David returned to the room and began snoring on the couch. I’m glad he slept.

The next morning, I was ready to go see my child. It was a significant walk (wheelchair ride) from my room to the NICU. David pretty much had the system figured out and got us in and beside Eli’s bed in record time. Eli was naked, under a heat lamp. I stared in shock. I didn’t know what to expect. I knew I loved him, I knew nothing else.

I'm blank here.

Later, I remember being beside Eli’s bed with my mom. I was so impressed with her instant and unconditional love for him. She spoke to him in a soothing voice. I couldn’t talk. My mom encouraged me to speak to him. I couldn’t get around the lump in my throat. My mom told me to look beyond his body to his spirit.

I was scared of my child. Perhaps I was scared to get attached for fear of the unknown.

Family and friends wanted to come to the hospital to see us. I did not want to have any visitors. My mom counseled me that it didn’t matter if they sat in the hallway, people wanted to be close to us as their show of love and support. I agreed…they could sit in the hallway.

Sophia came to visit. She was so excited to have a baby brother. She had no idea that the experience we were having was not the exact normal experience for giving birth. She was the most compassionate and kind 5 year old…today, she is the most compassionate and kind 7 year old. Her love for Eli knows no end and no condition. He feels the same way.

I remember being offended by some people’s reaction to me. I was offended with their sympathy. I was offended when they pretended nothing had happened. I was deeply hurt. I’ve grown as a human being as I’ve walked this journey with Elijah. I’ve learned that people don’t know what to say so give them a break. I’ve learned that doctors are just practicing and that you should never, ever put all your faith in them. I’ve learned that instinct is that still, small voice of God leading me. I’ve learned that people are kind. I’ve learned that complete strangers can make a difference in my life. I’ve learned that I am not in control.

We took Eli home from the NICU when he was 9 days old. David was ecstatic about taking our son home. I was scared to death. Now, I know that with each part of Eli’s journey, one of us is the steady head and one of us is shaky. God put us together like two puzzle pieces to make a whole. The doctor sat us both down to talk about taking Eli home and all I could do was cry. David answered the questions correctly so that Eli would be released to us.

His first night was misery. Eli wouldn’t sleep. We were so frightened. The next four weeks, I was breakable. I had extreme fear of being alone with Eli or driving him in the car solo. I was nearly paralyzed. David was my rock and my mother was his relief. It was a very, very hard time for me.

People showered us with kindness. I sat in amazement at how kind and generous people were....some who didn't even know us. I will name a few of the kindnesses...not intended to be a complete listing:

My fellow employees at the Red Cross where I worked brought us four meals a week. We ate them. I forgot how to cook as a result. : )

My mother and father in law bought us a new computer so that we could do our research on each new finding on Eli.

My mom and dad paid for all of Eli's co-payments until we were able to get him on secondary insurance.

Bobbie and Marvin bought all of Eli's first his diapers had to be special ordered because his booty was so tiny.

Someone from our church staff came to the hospital to visit us every single day that Eli was hospitalized...that's a lot of days, folks.

Family, friends and friends of family and friends sent us cards, gifts, meals and money.

After birth, we immediately started working on Elijah's clubbed feet. It was one thing I thought we could fix and check off the ever lengthening list of issues. We had to drive Eli to OKC to see a specialist who would weekly cast his feet for straightening. During one of our visits when Eli was four weeks old, between taking off a cast and putting on a new one, I weighed Eli. I was so scared when the scale said 4 pounds 2 ounces...his exact birth weight. He had lost the weight he had gained. I knew that was not a good thing. I called Eli's pediatrician. She instructed us to take Eli to the hospital for an upper GI to make sure everything was okay with his internal system. We did that and then he was admitted to the hospital for failure to thrive. We were shaken.

In the next week, Eli had a feeding tube surgically placed. His first of many surgeries. We then began feeding him through his tube. In a few days, we took him home from the hospital and that night realized as we dumped food in, he dumped it right out. It was violent. The next morning he was readmitted to the hospital for dehydration.

It was after that hospital discharge that we visted a GI specialist who declared Eli was allergic to the formula...he perscribed an elemental formula called Neocate and Eli's weight began shooting 5 pounds. We were estatic.

The next weeks and months were consumed with visits to doctors, therapists and specialists. Each time we'd see a new doctor, we'd be told something new about Elijah's condition. He doesn't have knee joints. His legs won't grow. His skull is fused where it shouldn't be and must be opened for his growth. He cannot hear. He cannot see. He has no thumbs. He has thumbs. He has a missing finger. He has no equillibrium. He has this syndrome. No. He has this syndrome. No. He has this syndrome. No.

Finally, one geneticist discovered Elijah's genetic mutation blamed for his challenges -- RECQL4 mutation. A very, very rare mutation that can cause three different syndromes...Eli has pieces of all three syndromes. He's in a new class called RECQL4 related disorder.

Next week, Elijah will have his feet amputated. Since the day at the Shriner's hospital when the doctor told us he has no knee joints, we have been on this path. It's been the haunting future. It's a requirement, but that doesn't mean it will hurt any less...him or me or the rest of us who love him dearly.

Thank you all for praying for Eli during these years of struggles. We love you.


Thursday, December 24, 2009

Happy Birthday Eli

Elijah turned three years old yesterday. Ask him how old he is and he will respond tree...he might say two (then respond to a strange look with) tree! So proud.

I promised my recollection of Dec. 23, 2006, which I will post soon...though unfinished.

Merry Christmas, friends.


Monday, December 21, 2009

Casting Stone

So, I've been embracing this idea that I would enter Jan. 5 with a sculpture of my son's feet. Some may think it morbid, but I just wanted a lasting memory...for his future. So, I bought a do-it-yourself kit that included two tries. The company automatically sent me a third try...that's when I realized their "make it look simple" video must have been a bit deceiving. So, I tried. First one, complete disaster as the mold became too hard too quickly and I didn't even get Eli's foot in it. To the trash. Next one, I made the mold with some difficulty and filled it with the stone mixture. Eli's foot has such a turn to it that I didn't get the stone into the toes of his mold. So, it's almost perfect, but less than what I had hoped for. I just did the final try...have to wait 24 hours to see how I did, but I won't be taking this up as my new career.

Does anyone know of someone who does this professionally in the Tulsa area? I'd love to just find the expert and ensure I have the memory. Help?


Saturday, December 19, 2009

Lessons learned

I'm listening to an inspirational song sent to us by a dear, dear friend As you can imagine, Elijah's upcoming surgery is crowding our thoughts these days.

Of all the things I've learned in these three years of Eli's life, one I learn over and over is that people are so kind. Last week, our fellow Little Light House parents and some of the teachers and therapists built us a basket of kindness for our upcoming trip to Shreveport. I was in awe of how they had the basket packed with things David and I really like...Dr. Pepper, pringles, Cherry 7-Up, Reese's, gift did they know that? We were so touched that fellow parents, who are in similar situations as we are, would make such a generous sacrifice for our journey. I'm deeply touched by the amazing kindness of people.

On Tuesday, David and I (along with a pal of mine from work) met at the Little Light House for a 12:30 p.m. celebration in honor of Eli's third birthday. I made a small cake for the kids. I wasn't really expecting much except eating cake. When we arrived, nearly every available employee of the LLH came into Eli's room to wish him a happy birthday. The therapy staff had a birthday cabinet they wheeled in with neat light displays. The children loved it. Eli knew it was all to celebrate his special day. The LLH thinks of EVERYTHING. I continue to be amazed at their care for extraordinary kids. Eli had been hearing the b-day song all day, so when it was time to sing to him, he sang right along and clapped enthusiastically at the end. Yes, he licked some icing. The LLH staff made Eli feel so special. It was the best day! How will we top that on his actual b-day Dec. 23?

I came to a heartbreaking revelation last week. The parents at the Little Light House are all just like me and David. They too did not select to go on this journey of hospitals, doctor visits, therapy, surgery and heartache. But, here we are. Together we are travelling down difficult paths...each very different, but each unexpected and very hard. As I walk into LLH each morning to drop off Eli, I don't see a single face of bitterness or anger. Everyone smiles. We greet each other with true empathy, patience and love. We have strong bonds in the likeness of our circumstances. One of the added benefits of having Eli a part of the amazing LLH.

Eli now calls Sophia "O Eah," so cute. He calls me Mum Mum. Sweetest sounds.

Eli's weekend Nurse Melody (who Eli loves) has worked with another young lady for 14 years, Lindsey. She died last Saturday at age 23. I cried and cried for her family this week. Please say a special prayer of peace for them as they celebrate Lindsey's favorite holiday, Christmas, without her this year.

I've been writing a recollection of December 23, 2006, and the days and months that followed. I plan to post it on Eli's birthday so stay tuned.

Wishing you each a Christmas of joy, peace and love. I know God will be carrying us through the coming weeks. Thank you for your prayers.

"If He carried the weight of the world upon His shoulder, I know my sister that He will carry you."

With love and gratitude,

P.S. David's been dealing with a debilitating migraine headache this week. No doubt due to the extra stress from thinking about Eli's upcoming surgery (though he wouldn't admit it). Currently he is at the urgent care center to get the dreaded shot to stop the pain in its tracks, but that means another 24 hours of sleep ahead. We really, really want to be in church tomorrow and planned on attending our Sunday School party tonight. We'll do our best.

Wednesday, December 9, 2009

Count down to THREE

Eli is doing great! He says more and more words and we are on the countdown to his third birthday. I joke all the time that it feels more like six or ten years, but it's only been three...three years. I can hardly believe it. He has come so far.

Thank you all for your prayers.

More soon.

Lots of love,

Wednesday, December 2, 2009

Eli's Better!

I'll be brief...

Last night, we took Eli to the hospital with 104 temp. X-rays confirmed he had pnemonia in his right lung. We came home and took two doses of antibiotic, one last night and one this morning. Today he was feeling MUCH BETTER. We played on the floor, we laughed and talked and rough-housed, and then he went to see his Grammie. Meanwhile at home, a nurse from the ER called to say Eli's blood culture was positive, and the recommended we come see them ASAP. We got there and learned that ASAP means "as slowly as possible." Two hours later, our favorite triage doc comes in and says that his blood probably just has some residual bacterium, and that the antibiotic he's on is probably wiping it out. More importantly, the fever's gone, he's eating all his food, he's in a great mood, and that's that! We came home, and he's still doing great.

I told Melissa I felt like the trip was a waste of time, but she's convinced that after she told ALL OF YOU GUYS that he was potentially in danger, all your prayers healed him before we could return to the ER. I agreed that's she's probably right, so now I'm thanking you for doing your part. Be on the lookout for the next time we ring the Bat-Phone.

Good night! Pray we get some sleep 'round here!

Eli's sick

Last night, David took Eli to the emergency room because his temporal temperature was 104.4. He has had fever since Sunday evening, but we've managed it with over-the-couter meds. Each time the med wears off, the fever was higher and then, last night, the number became alarming. Eli was sent home with a diagnosis of pneumonia and an antibiotic.

Tonight, the charge nurse from the ER called to say that we needed to bring Eli back in because his blood culture was positive for something. I asked positive for what. She was sketchy. I asked her if Eli would be admitted to the hospital and she said possibly, but that the pediatrician on call said he needed to be seen and have his white blood count measured.

Pray for Eli, please.

With love,