Coming soon to your television screen – Eli!

Happy Spring!

It’s been a busy month around here. Seattle Children’s has just fallen in love with our boy. They recently contacted me to ask if we’d share our story on an upcoming television special. Yes, television! I hesitated for a second. It’s scary putting ourselves, my family, out there. But if I can help the hospital that has literally saved my child’s life numerous times, I will. Plus, I love telling Eli’s story. We met the producer and interviewer a few weeks ago. We filmed at the hospital and at our house. The whole experience was surreal. We saw a commercial for the program with our son’s picture. I cried with excitement. Eli takes it all in stride.

The show, “Stories From the Heart: A Mother’s Day Special”, airs this Saturday, May 3rd, at 8pm on KOMO Channel 4 (the Western Washington ABC affiliate). Please watch and, if you can, please donate in honor of a mother you know, love, or admire. For each donation of $10 or more, a card will be sent to the mom telling them a donation to Children’s has been made in their name. What a wonderful Mother’s Day gift! For those of you who are not local and cannot watch, a link will be provided after the broadcast. I will share that here when it becomes available.

Children’s has chosen our family as the face of their uncompensated care donation campaign. They are trying to change people’s misconceptions about who that fund helps. Most families, like us, have insurance. But, co-pays and out of pocket expenses, quickly add up when your child is sick. Many times, the parents have to take time off of work. Bills do not stop coming. You still have to pay your mortgage, electric bill, etc. The uncompensated care fund helps cover the costs of medical expenses for your child. The very last thing you want to worry about when your child is hospitalized is how you are going to pay for it. Last year, when we first applied for help, I figured we’d be denied. When I was filling Eli’s prescription for pre-surgical soap and ointment prior to his heart surgery, the pharmacy clerk told me I didn’t owe anything because we’re covered through Children’s. I was confused. I called the financial department to clarify. When the lady on the other end told me all previous bills and any future bills would be covered by the uncompensated care fund, I cried. I promised her I would one day give back any way I could.

So, this is our way of giving back. You never know if you will one day be in need of Children’s services. I never thought we would. I listened to the telethons on the radio while driving into my hotel sales job. I watched the television specials, crying along with the families as they talked about heartbreak, loss, hope, and cures. I donated each time, NEVER thinking we would one day be recipients instead of donors. Life changes. Circumstances change. It could happen to you.

In other news, Eli celebrated being one year seizure free. I am filled with such gratitude that his battle with Infantile Spasms is over. I admit, I still wince when I see any unusual movement from him, but the anxiety is dwindling. I continue to pray that he stays seizure free forever. There are so many other children that aren’t as lucky.

He turned 18 months old (a year and a half!) a few days ago. They say time flies when you’re having fun, and lately, we’ve been having a lot of fun!

Thank you all for supporting our family. This Saturday, we’d love if you joined us in celebrating our journey. Please watch the special and donate to Children’s if you can. Eli, Cody, and their grateful parents thank you. ❤️

It’s almost Christmas!

I love this time of year. I truly love it. I love the memories and traditions we’re creating for our family. I love the happiness and joy that seem to be prevalent around the city. I love the Christmas music, the lights, the decorations. I often wish the spirit of Christmas would continue throughout the year. But, if it did, I suppose the holiday season wouldn’t be near as special.

This year, instead of going to a tree farm to cut down our Christmas tree, we went to Fox Hollow Farm and picked out a pre-cut Christmas tree. We rode on a train, played in some kid sized houses, pet horses, a baby cow, miniature goats, a pig, cats, a dog, and some very large turkeys. The best part of the day was when Cody actually talked to Santa and let him hold him – just long enough to tell him want he wanted for Christmas! He hasn’t been that close to Santa since his very first Christmas when he was only 7 months old.

Later that evening, Eli was thrilled to sit on Santa’s lap at a charity event my friends put on for Seattle Children’s Hospital. Cody was not interested and felt the task had already been completed. He told him his list once already and was adamant he would not speak to or sit with him again (lol).

Both boys helped decorate our tree and Cody got the honor of putting the star on top. He was excited!

Cody swore it was Christmas Eve when he woke up to find it had snowed! I tried to explain to him that snow didn’t equate to Christmas but the movies he’s watched don’t help with that theory. He’ll be disappointed when he wakes up this Christmas to no snow on the ground – but he’ll get over it quickly I’m sure!

The best part of Christmas is spending time with those you love. And this mama loves these boys!!

As our countdown to Santa’s arrival gets shorter and shorter, I wanted to be sure to pop on here and wish you all a very Merry Christmas. I can never thank you enough for following my family’s journey. As life becomes a little more monotonous (thankfully!) I find that I have less to write about, or maybe it’s just that I have less time now. Either way, I appreciate you sticking this last year out with us. Thank you for every prayer, every note of encouragement, every kind word spoken about my little family. I am so grateful for the new friendships I have gained because of this awesome path God chose for us! I’ve said it numerous times before but I can’t say it enough – We are blessed. Truly, truly blessed.

Merry Christmas!
xoxo Melanie

Update on Eli

I’m sorry I have not written sooner to update on Eli’s surgery. As you can imagine, the days blur into nights and by the time I have a moment to myself I am too tired to think. Tonight, I am forcing myself to stay awake. Thank you for your patience. So, here goes…

October 4 – Surgery Day
What a long, stress filled day. Surgery was scheduled for 11:15am. We checked in at 10am. My mom and sister, who both accompanied us to the hospital, said their goodbyes then we headed to the pre-op area.

While waiting to meet with the surgeons, we took the opportunity to take pictures and snuggle our little Superman.

My nerves were a mess. I did not want to go through with saying good bye. I was so scared. I was filled with so many doubts and negative thoughts. But, the time eventually came and I had to. He happily went into the arms of one of the anesthesiologists and off they went. We cried and prayed and let go of the fear and the doubt and the worry. It was in God’s hands now. Let go and let God.

We found my mom and sister in the cafeteria. They were sitting with Shelby, one of the founders of an organization called Cranio Care Bears. They provide care packages to children (and their families) who are undergoing cranio surgery. She is local and wanted to drop our care package off personally. Not only did she fill Eli’s bag with wonderfully comforting items, she stayed with us the entire time. She was there from the very beginning to the very end (when we finally got to see him). Her heart is large and her commitment is amazing. It was such a nice distraction having her there. We instantly “clicked”. She was so easy to talk to! We talked about our families and our faith. We discussed life and some things Chuck wishes he wasn’t privy too (lol!). I was able to ask her questions about the surgery and what to expect which reassured me when my mind would start to wander into worry. I can honestly say, I’ve made a lifelong friend.

After 4 1/2 hours, we finally received the page that Eli was out of surgery and all went well. The surgeons came out and spoke with us. The neurosurgeon (Dr. Lee) said the surgery was “uneventful” (which is a good thing to hear when it comes to surgery!). Dr. Birgfeld (plastic surgeon) said his head shape was markedly improved. We couldn’t wait to see him! After about an hour they called us back to the ICU. I practically ran to his room. When I got to the door I stopped short in my tracks. The room he was in was the EXACT SAME room he was in after heart surgery. And he was in the EXACT SAME bed (it was a double room)! What are the chances? He looked good. Better than I expected actually. He was pale (needed a blood transfusion during surgery) and he was still in an anesthesia induced deep sleep. But he looked so peaceful. So angelic. We hung up his Superman cape and prayer chain (from Cranio Care Bears!). One of the chains had the following quote, “Let go and let God”. This time, I took it as a directive from The Lord himself.

Eli never fully “woke up” until the following morning. The nurse said I could hold him. I couldn’t wait! Once he was safely in my arms, I started to cry tears of relief. The hardest part was over. Now it was time to heal. While he was in my arms (I wasn’t letting him go!) they told us he was ready to be transferred out of the ICU. 12 hours post invasive skull surgery and we were already on our way! When they put him in bed to transfer him, he sat up and smiled! That smile told me everything was going to be ok.

October 5 – October 8: Post Op, Days 1-4 We settled into our room and our routine. We met the nurses, sat by as they took vitals, helped administer medicine, watched him sleep, held him, played with him, met with the doctors, drank coffee, watched football (on a very tiny hospital tv!), visited with people who came to see us, cried when Cody would leave, ate dinner, went to sleep (in Eli’s room on a semi-comfortable pull out vinyl sofa), woke up every 4 hours when the nurses would come in. Repeat. Being in the hospital can be a little like Groundhog’s Day (the movie) – same thing, different day.

The only challenge we had this time was getting Eli to eat. He did not want to participate. We had to keep him hooked up to the IV longer than anticipated. But, eventually he ate and on Tuesday (day 5!) we were on our way home. What a relief!

Post-Op Day 2

Post-Op Day 3

Post-Op Day 4 – Going home!

We’ve been home for 3 days now. It’s overwhelming at times. Eli requires more supervision now and Cody demands more attention. We have struggled to find the balance but each day gets better. Eli has not had any pain medication (besides Tylenol) since leaving the hospital. His last dose of Tylenol was 24 hours ago. His strength and resilience amazes me daily. I have never been more proud of him than I am now. I was once afraid of what people would think or do when they saw his scar. I am still a bit timid, but on our first outing out of the house today I announced to two complete strangers that one week ago our little cutie was undergoing skull surgery. Proud mama moment.

**Thank you to Nana and the Lemmon and Peabody families for taking great care of Cody in our absence. He had so much fun he may not have realized we were gone! Thank you to the amazingly skilled surgeons, Dr. Lee and Dr. Birgfeld for “fixing” our son’s skull. These two make a great team! I appreciated their kind bedside manner and thoughtfulness in which they spoke to us. They treated Eli as if he were their own and that’s what makes a great doctor. Thank you to the countless other doctors and nurses we encountered at Children’s during our stay. Most were personable and knowledgeable and willing to include us in the decision making (I love the parent driven team approach at Seattle Children’s!). Thank you to Shelby Davidson for her companionship and newfound friendship. And last, but most certainly not least, thank you all so much for your prayers, your love, and the well wishes you’ve sent our way. I’ve felt it all and I am forever grateful that you have embraced our family. I once thought that Eli would change lives. Now I know.

Skull surgery. Nailed it.

Post surgery update (with pictures – warning!)

It’s been a long day. I’m functioning on 45 minutes of sleep right now so if I get through this post without falling asleep and dropping my phone (from which I’m writing this post) to the floor it will be a large accomplishment.

Speaking of large accomplishments, Eli is off the ventilator. While this is wonderful news, he didn’t tolerate it as well as we had hoped. He was coming off his anesthesia (although still quite sedated) and had passed the breathing test. He was a prime candidate for extubation. They removed the breathing tube while he squirmed, kicked, and tried to cry. He worked himself into quite a tizzy. His heart rate increased drastically, his blood pressure sky rocketed, his body temperature went up and his breathing became very fast, deep, and labored. Worse than anything we’d seen prior to heart surgery. The attending physician suggested CPAP. Unlike when he was in the NICU after birth, the CPAP does not pose a great risk to the lungs at this age because his lungs are more developed. He is now resting comfortably with a little breathing assistance. The CPAP is still less invasive than the ventilator, although it looks more obtrusive.

Now I’m debating whether or not to stay at his bedside where I’ll get zero sleep or go home and get a good night’s rest. He has one on one nursing with a nurse stationed at his bedside throughout the night. His nurse has encouraged us to go home since we need to be rested when we go to the “floor” (cardiac surgery recovery wing) as he’ll have less nursing attention and we’ll have more parenting responsibility. Considering I’ve fallen asleep twice while writing this, the idea of sleep is winning the argument.

Thank you to our parents for going through the longest (albeit considerably short!) wait of our lives here at the hospital today. Many thanks to my dear friend Alicia for taking care of Cody while we were here. Also, a HUGE thank you to everybody who has been praying for Eli and our family. Please keep praying for a smooth recovery for our super hero. I am truly inspired and awestruck by this tiny human.

Here are some pictures. WARNING! Some ARE graphic.

Saying goodbye before surgery

First time we saw him (he looked a lot less scary than I had anticipated)

Post breathing tube removal

Resting comfortably with CPAP

My HERO

Anxiously approaching Tuesday

On Thursday, we had the pre-op appointment for Eli’s surgery. We met with the surgeon who explained what would happen during surgery as well as the risks. I chose to try and not listen much to the risks. He kept giving us the odds (1 in 600,000, etc.) of something happening. I finally stopped him and told him we don’t really pay much attention to odds considering we were the 1 in the 1 in 1000 parents who are blessed with a baby with Down syndrome. He took interest in our story and asked about how we found out about Eli, etc. It was nice that he actually seemed to care. He is a highly skilled surgeon and seems quite compassionate.

He told us Eli’s surgery is an “easy” one. That was comforting, considering. We will be away from him for 6-7 hours start to finish. I thought about writing about the details of his surgery but it may stress some of you out. The synopsis is that it’s open heart surgery to repair a large hole in his heart. His heart will be stopped and a machine will function as his heart and lungs. This is what terrifies me the most. That’s where most of the risk lies. But I have faith that the Good Lord will keep watch over our sweet baby. He will guide the surgeons and nurses in their care for him.

I am anxious about seeing him after surgery. I’ve been warned that he could be puffy and will be hooked up to multiple tubes, IV’s, drains, and machines. I obviously will not be able to hold him. Luckily, as long as he’s intubated, he’ll be sedated. Once they are confident he can breathe on his own they will remove the breathing tube. After that is out they will decrease his sedation. I am so hopeful that he will not feel much pain. Seattle Children’s Hospital has a great reputation for pain management so I trust they will take care of his needs. He will most likely be in the CICU (Cardiac Intensive Care Unit) for 2-4 days then moved to the surgery recovery floor. His stay on that floor will last until he is ready to go home. Our total hospital time could be anywhere from 4 days to 3 weeks. We pray that Eli is a good healer and strong enough to go home sooner than later.

I have been sick to my stomach since we left that appointment. Although I was assured that he will be in highly capable hands, I am made anxious by thoughts of what poor Eli will have to endure. Thankfully, most children were born resilient and our son was born a fighter. This will be his biggest battle but he’ll have an even stronger heart to do it with. I have no doubt he will be victorious. He will one day wear his scar as a badge of honor. As Eli’s parents, we could not be any more confident of his strength.

We ask that you continue to keep our precious son in your prayers. We ask for prayers for us as his parents. We pray for strength. We need the support and love of friends and family more now than ever. It is not easy for us to ask for help. But we also know that our superpowers may fade. Super Mom and Super Dad may need Super Friends to swoop in and rescue us. We have been blessed to not go through this alone. Thank you for your continued prayers and good thoughts for our family.

I will update this site as time permits. I’m guessing there will be a lot of downtime. I may need an emotional outlet (which is what this blog has become to me). Please forgive me in advance for any rambling I may do.

Love and blessings always. xoxo

Appointment scheduled

We have our first appointment scheduled with Dr. Vernon, pediatric cardiologist, at Children’s Hospital. We’ll have an echocardiogram done of Eli’s heart this Friday at 1:30. Prayers are appreciated! I’ll update when we know more. Thanks again to everybody for supporting our family through this difficult and emotional journey.

Disillusioned

Sometimes life just isn’t fair. After the tentative joy we felt after receiving some “good” news at the last ultrasound (the possibility that Eli had no heart defect) today we are feeling the exact opposite. We were told that Eli does have a small hole in his heart and something called Tetralogy of Fallot. As I do not completely understand what this defect is (yet) I have pulled some information from the Mayo Clinic website (www.mayoclinic.com):
The four abnormalities that make up the tetralogy of Fallot include:

Pulmonary valve stenosis: This is a narrowing of the pulmonary valve, the flap that separates the right ventricle of the heart from the pulmonary artery, the main blood vessel leading to the lungs. Constriction of the pulmonary valve reduces blood flow to the lungs. The narrowing may also affect the muscle beneath the pulmonary valve.

Ventricular septal defect: This is a hole in the wall that separates the two lower chambers (ventricles) of the heart. The hole allows deoxygenated blood in the right ventricle — blood that has circulated through the body and is en route to the lungs to replenish its oxygen supply — to flow into the left ventricle and mix with oxygenated blood fresh from the lungs. Blood from the left ventricle also flows back to the right ventricle in an inefficient manner. This ability for blood to flow through the ventricular septal defect dilutes the supply of oxygenated blood to the body and eventually can weaken the heart.

Overriding aorta:
Normally the aorta, the main artery leading out to the body, branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect. In this position the aorta receives blood from both the right and left ventricles, mixing the oxygen-poor blood from the right ventricle with the oxygen-rich blood from the left ventricle.

Right ventricular hypertrophy:
When the heart’s pumping action is overworked, it causes the muscular wall of the right ventricle to enlarge and thicken. Over time this may cause the heart to stiffen, become weak and eventually fail.

What does this all mean? Honestly, I’m not sure. This is still very, very new information that I’m trying to digest. Tomorrow I should get a call from the pediatric cardiology department at Children’s Hospital in Seattle to schedule an appointment. That appointment will focus on the echocardiogram (ultrasound of the heart) and should provide us with some answers as to what all this means. As it turns out, the cardiologist that our ultrasound doctor referred happens to be one of Chuck’s customers. Small world.

Our emotions are very raw today. We are once again asking, ‘why us?’, ‘why Eli?’. He didn’t do anything to deserve the challenges he’ll face in his young life. Either did we. My faith has wavered a bit again. I don’t understand why God doesn’t answer our prayers. I know He must have a different plan for us and baby Eli but, for once, I was hoping we’d be on the same page. I am angry. Our hearts have carried a heavy burden since this journey started. I sometimes wish we had a rewind button and could start all over. I’d also settle for the pause button. But, as we’ve been shown, life is not that easy. It’s not a horror movie. You can’t fast forward through the gory stuff. In real life you fight like hell to just get through it. And we will. Eli will. I know it. In this I do have faith.

The love and support we’ve received from family, friends, and strangers has been overwhelming and humbling. I am so very grateful to those that have prayed for us, thought about us, laughed with us, and cried with us. Thank you from the bottom of my heart for loving us and most of all, for loving Eli.
xoxo

A brand new day

We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.

If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.