Six Weeks, Two Days

It has been six weeks and two days since Lincoln went to be with our heavenly Father. For a few moments every now and then it doesn't seem real. How can it be? How is it possible for a person to experience such pure joy and excruciating sadness in the same memory? My concept of time and emotions do not line up. Emotionally it feels like we just arrived home from the hospital for the last time after saying goodbye to our son. At the same time it feels like August 22, 2012 happened years ago. I don't think I'm able to articulate this concept like it really feels to me but that's the best I can do.

I got to hold my sweet baby for the first and last time on August 22. It was the most precious gift to finally be able to hold him after nine days. I am so thankful that we were allowed those few hours to be that physically close to Lincoln. I sat and watched as David held our son in his arms, my most amazing husband who has held me as I've cried more times that I can count over the past weeks. My mom told me at the hospital that I chose the BEST husband and I absolutely agree. David is the most incredible example of faith. He has been my rock, keeps me sane, yet shares my grief every day. My love and respect for him has grown so much as we continue to live with our incredible loss.

I don't know how to end this post. I don't have a closing thought or point that I was indenting to make. If you are one of the many people who have sent a card, brought a meal, donated to CHOA, emailed, or have prayed for us - you have been an indescribable blessing. We still covet your prayers and support as we continue to get back into "normal" life.

Abba

We played this song and video at Lincoln's Memorial Service on Monday evening, and I wanted to share it again with all of you ~ David.

The Story:

Abba |ˈäbä; ˈabä|

noun

(in the New Testament) an intimate term for God as father.• (in the Syrian Orthodox and Coptic churches) a title given to bishops and patriarchs.ORIGIN via Greek from Aramaic ‛abbā ‘daddy.’

"I wrote this song from a prayer of Brennan Manning in his book "The Furious Longing of God." The prayer is just five simple words: Abba, I belong to you. He tells you to take this prayer into a quiet place and with the rhythm of the your breathing inhale Abba and exhale I belong to you. As I began to pray this prayer the love of God began to wreck my heart. I realized that Jesus began a revolution with one word. When he said the word Father he changed everything. Now he has invited us into this reality, into this place of belonging. To call God our Daddy, our Papa, our Abba."

The Lyrics:

Abba
by Jonathan David Helser

You’re more real than the wind in my lungs
You’re more real than the ground I’m standing on

You’re thoughts define me, you’re inside me
You’re my reality

Abba, I belong to you

You’re closer than the skin on my bones
You’re closer than the song on my tongue

click here for more information on Jonathan David and Melissa Helser 

Memorial Service

Dear Friends,

We would like for you to join us on Monday to celebrate the life and legacy of our sweet Lincoln. The service will be held in "The Attic" at North Point Community Church on Monday, August 27th at 7:00pm. David and I want this to be a comfortable and casual environment, so please, no suits or ties. 

In lieu of flowers, we ask that you help us support Children's Health Care of Atlanta (CHOA) at Egelston and specifically the Sibley Heart Center. We are so grateful to them for the care and support they have given to us and to Lincoln throughout this time. CHOA is funded completely by private donations, and we want them to be able to offer this incredible support to other children with heart problems and their families.

You can donate online now by going to the following link:

http://giving.choa.org/sslpage.aspx?pid=298

or Mail your tribute or memorial gift(s) to:

Children's Healthcare of Atlanta Foundation
Attn: Tribute and Memorial Gifts
1687 Tullie Circle NE
Atlanta, GA 30329

*Be sure to include the honorees name and the designation as Cardiac Services with your donation.

One Week of Life!!

We are celebrating Lincoln's 1 week birthday. He has been such a fighter through this process so far and we are so proud of him! We are so thankful to our Heavenly Father for many answers to prayers and allowing us to have such a sweet blessing for a week now. Thank you for your continued prayers and support. We have been overwhelmed by all of the encouragement and outpouring of love by so many of you.

Our main prayer that we would like for you to join us in is for the miraculous healing of Lincoln's lungs. We pray that the Lord will breath His breath of life into our tiny babies lungs and restore them to perfect function.

I've been reading your beautiful prayers to Lincoln at his bedside. If you would like to send prayers for him or our family please email Prayersforthecoles@gmail.com

A Medical Update from David.

Lincoln's official diagnosis when he was examined in detail after birth was the following:

(Being that i am no expert, please bare with me as i try to explain this in the best way i know how at this time. There are many websites out there that can give you a lot more detailed information if you are interested. I have found that The Children's Hospital of Philadelphia (CHOP) Website is very informative: CHOP

Hypoplastic Left Heart Syndrome With Intact or Highly Restrictive Atrial Septum

The pictures below show the typical differences between a normal heart and a heart with Hypoplastic Left Heart Syndrome (HLHS). They also show the details of the 3 step procedure that is typically performed in order for a baby with this situation to survive.

This link gives a lot more detailed information and even videos if you would like to take a look:

Details of Hypoplastic Left Heart Syndrome

Please be aware that the information above is unfortunately only part of the diagnosis.

Baby's with HLHS will typically be born with another defect as well, that actually allows the heart to function in a alternate way. This is called an Atrial Septal Defect (ASD), and this can also be seen in the pictures above. It is an opening between the left and right atriums that in a normal heart would cause a large problem, but in a baby with HLHS, it is essential for blood flow. This defect did not exist in Lincoln's heart, and this is called Intact (or Highly Restricted) Atrial Septum. Therefore, on his first day of life, the doctor's had to use a catheter to place a small stint in this area to allow blood to flow through the 2 atrial chambers. This essentially creates an "artificial" ASD (described above).

The situation directly above involving the Intact or Highly Restrictive Atrial Septum is our major focus right now. Before the issues involving the HLHS can even begin to be addressed, we must focus on this issue.

Unfortunately, because the ASD did not exist in Lincoln's heart from the beginning, a lot of damage was done while he was still inside the womb. This damage was done primarily to his lungs. Although his lungs were in limited use in utero, they were still developing and preparing for life outside of his mother's belly. During this important time of development, Lincoln's lungs were being "flooded" by the blood that should have been circulating through the ASD. This "back flow" resulted in  him having very weak and underdeveloped lungs when he came out.

Currently, the most important and essential objective at hand is to restore normal or close to normal function to Lincoln's lungs. The damage to Lincoln's lungs is extensive, and the road to repair is going to continue to be an uphill battle for him and his doctors.

The heart and lungs work so closely together, that without good lung function, Lincoln will never be a candidate to have the 3 surgeries described above. These surgeries are essential to his survival.

Lincoln Ryder Cole Day 1

Lincoln Ryder Cole was born August 13th at 9:46am!

On Monday around 2am I was woken by the feeling of something rupturing. I jumped out of bed and realized that this is what it feels like when your water breaks. Holy Moses. David jumped up as well and was calmly informed of what had just happened. After talked with the doctor on call, we decided to wait and labor at the house as long as possible. I took this time to finish reading the labor and delivery chapters of several books I've been reading. David vacuumed, cleaned the down stairs, paid some bills, took the dogs out and packed his bag. At 6am we were off to the hospital. My contractions were under three minutes apart at this point. 

Upon arrival at the hospital I was 4cm dilated. By the time I was taken into the actual delivery room about an hour later I was 7 1/2cm. This baby was coming fast! My contractions were coming strong and very close together. I was given a shot to slow them down with no success. A few minutes later, another shot, no success. They main thing we were concentrating on was Baby's heart beat. His heart rate would drop very low during my contractions and didn't have time to catch back up in-between because they were so close together. We watched the monitor and waited. I was offered an epidural and took the opportunity before it was too late. Epidural in, we waited and watched the monitor. No change. We were told there was no way this baby would make it through a vaginal birth. As much as I wanted to avoid a C Section, I had the mindset going in that I would be willing to do whatever was safest for Baby. David was given daddy scrubs, and everyone prepped for surgery. 

At 9:46 Lincoln Ryder Cole was born via C Section. They took him to clean him up where the respiratory therapist put an air tube in. Once the tube was in, David was able to cut the rest of the cord. They prepared for him to go to NICU but wheeled him by my head so that I could see him. They held him out to my so that I could get two hands on him and kiss him before he left. I was then stitched up and taken to recovery. 

After I left recovery, the nurses wheeled me into NICU so I could lay beside Lincoln for a little while. We then went to my hospital room and waited for news about his status. We were told by the Neonatologist that they were going to move him that day to CHOA at Egelston because they couldn't get him stable in the facility at Gwinnett. David was able to go down and see him all packed up and ready for transport. After his arrival at CHOA in the CICU, we got at call that he was going to need an emergency procedure done in the Cath Lab. They went through his leg with a catheter to put a stint in his heart in order to allow blood flow in-between his left and right ventricle. This is necessary for a baby with Hypoplastic Left Heart Syndrome. Typically, a baby with HLHS is born with this duct open, but Lincoln's duct was closed or almost closed. (David will explain more medical details in another post). This was a very delicate and dangerous procedure, but we received a call from the doctor later in the evening and he told us that the procedure had been a success. We were obviously very relieved and thankful.

As David and I are typing this, we are realizing that there is so much information and so many details from each day, that it would take a very long time to go back and write about it now. So for now, we will stop with day one and our next post will be what is currently happening. Its actually Sunday evening right now and more than anything we want to be able to keep all of you updated on what is most important to pray for. I will eventually write out Lincoln's "Birth Story" with lots of details that ladies will enjoy reading and guys can skip all the fun and gross parts. 

David holding his son's tiny toes.

Laying beside Lincoln in the NICU at Gwinnett after I was released from Recovery.

The transport unit about to take Lincoln to CHOA at Egelston

Transport team heading out. 

Tough 35th Week

Its been a rough week for this pregnant lady. Monday we had our scheduled ultrasound at Maternal Fetal Specialist which went well but the doctor did note that my fluid surrounding the baby was a little high. Anywhere from 3-24 is normal. I measured 24.5. The doc said not to worry and we'll check on it at our next appointment on Thursday.

Tuesday at work a little nausea turned into a LOT of nausea, dry heaving, hot flashes and sweating. So I spent the rest of the day on the sofa resting, but without any relief. The next morning I started getting ready for work and the nausea came right back as soon as I got out of bed. I feel like I'm very calm when it comes to these things - I know that 3rd trimester nausea is common, but I still called my doctor because something just felt off.

So back to the doctor I went, a day before I was scheduled to be seen anyways, this time at my regular OB/GYN. This ultrasound showed that my fluid is now measuring 33. Great. The doctor said this is most likely the cause of all the nausea and extra discomfort. She did order blood work done to rule out any other causes, but she felt confident that the increased fluid was the culprit of all these fun symptoms.

Please pray that my fluid does not increase. Although its just uncomfortable now (very uncomfortable), further increase can cause issues in delivery. When mothers measure 40 or above, they are often induced due to difficulty breathing, and therefore not supplying enough oxygen to the baby. Also, if labor was allowed to happen naturally, extra fluid can cause safety issues in vaginal birth, causing C-Section to be the only option. Non of these things are extreme or dangerous, but in our case, we want to go as close to full term as possible so Baby can strong, healthy and developed enough for his first heart surgery.

I have this verse as the background on my phone. It has been an incredible reminder of peace.

Sweet Showers

We've been so blessed to have been thrown three showers already!

Here are some pictures of our North Carolina shower organized and thrown by my dear friend Abi - Hosted by my mom, and sweet cousin Allison. It was so wonderful to have friends and family all together in one place. The trip was the last of my traveling before Little Mister comes, so it was a blessing to get to see such special ladies one last time pre baby.

Everything is better with Mason jars and pretty straws

Beautiful colors!

Little Mister Stash Cupcakes

The fabulous Event Planner Abi

Sweet Momma

Baby getting some Katelyn love.

My Grandmother saying Hi to her first great grand child.

A few weeks later, our friends the Carters and McNerneys threw us a shower back home in GA. Little did David know we decided to incorporate a surprise party for his 40th. We pulled of the surprise without a hitch! We have some hilarious photo booth pics that I will post as soon as I get my hands on them/when I figure out how to get them on here.

My sweet office family had a shower for us as well. It amazing how blessed David and I are for having such amazing support even from my employers and coworkers. The ladies I work with have fabulous taste, so our little guy will be very well dressed, and come home to beautiful clothes, toys, art...ect. 

I will be updating more medical information in the next few days...for now, it feels nice to be able to post about some fun and positive things. 

For Collection

I have started collecting the messages, texts, and emails that I've been receiving on behalf of Little Mister. It would be so awesome if you could email directly to This new address 

I promise to save and cherish all emails. I plan on making an album of all of them so that I can show our little one how loved and prayed for he was even before he was born!

(Incase this computer challenged mamma to be messed up the above link, it is prayersforthecoles@gmail.com) 

Thanks!

Confirmation

We've been living with the news of our baby's heart condition for several weeks now. After meeting with our cardiologist for the second time, he confirmed that there were no changes in the heart and Little Mister  most definitely does not have the muscle that should separate the left and right ventricle.


The outpouring of love that we have received as we slowly inform our friends and family of the news has been overwhelming. I have received the most beautiful words from so many of my sweet friends. A few ladies in particular have been praying and interceding on Little Mister's behalf and I have truly felt their prayers and encouragement more than I can say. 
-After a particularly emotional week, a friend sent me a link to a song that spoke directly to my heart. I've made sure to listen to it every day as part of my quiet time with the Lord. 
-A most precious lady that has known me since ninth grade has typed out her prayers for our family and sent them to me. Who knew you could truly feel the presents of God while reading a Facebook message? -After hearing a familiar voice at MFS I discovered that I knew one of the nurses there from my parent's church in North Carolina. She has the sweetest spirit and remembers me singing at church when I was ten years old. She is now unofficially "my" nurse and has been assigned to me at every appointment since. 
-Our small group has been such a blessing in this time as well. When we shared the news with them, there wasn't a dry eye in the room. Its such a blessing to have those four couples lifting us up in prayer on a consistent basis. 
-David has been part of a volunteer parking team at church for the past several months and the men in the group pray for us specifically every time they meet.


All of these encounters, prayers, songs, and love are a product of our amazing Father who has consistently poured out His love through the Holy Spirit. David and I have discussed almost feeling knocked over by the love that we have felt over the past several weeks. We have truly been living 1 John 3:1 See what great love the Father has lavished on us, that we should be called children of God! And that is what we are!


And Romans 5:5: And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.


David will be helping with my next post that will explain in more detail the medical side of things. 


Until then, I'll leave you with the amazing song that was sent to me.

April 5th, 2012 "This heart is definitely not normal"

April 5th, 2012

Last week at our 19 week ultrasound appointment, the doctor discovered some abnormalities in his (baby cole's) heart. We were immediately rushed upstairs to another office to see a pediatric cardiac specialist. After a long time with the cardiac specialist, a lot of tears and questions, this is what we know so far:

Our baby has Complex congenital heart disease in the form of single ventricle complex, transposed great vessels and pulmonary stenosis/atrisia. How I understand it: He is missing the muscle that should separate the left and right ventricle (the bottom two sections of the heart), along small arteries/vessels that should pump blood in and out of his heart. The doctor will be able to see the heart in more detail at our appointment in 3 1/2 more weeks (because he will have grown) and be able to pinpoint exactly how small, and how displaced those arteries are. 

Baby Cole will be able to go full term (praise Jesus) and be born at Gwinnett Medical as planned. Approximately two days after he's born, he will be transported to Egleston Children's Hospital at Emory for open heart surgery. Its estimated that he will have to stay there for 30 days after surgery. At 4-6 months old, he will have his second open heart surgery, and if these two go well, he will be able to have his third surgery between age 2-6 years of age. Of course, there are percentages of positive and negative outcomes of all of these surgeries related to his heart problem, but we are choosing to be as positive and proactive as possible. 

What you can do: Pray Pray Pray. I have thought about this a lot. My prayer for our baby is that he will be healed completely, either before birth or after. This leaves room for us to ask for a miracle, as well as praying for the doctors that he will be in contact with before and after birth. Please pray for all of our doctors (now four of them) that the Lord would give them wisdom, surgical brilliance, and steady hands as they work together for our baby. 

David and I would also appreciate your prayers for peace, wisdom, and the ability to regain our joy in celebrating this MIRACLE that God has given us: Our sweet baby boy. 

January 30th, 2012

all whit and formality aside, i feel terrible all the time. i had a bit of an episode at work yesterday. I ate a cliff bar at 9am, and by 11am i felt light headed and shaky. my hands couldn't stop shaking and then my body proceeded to follow. i went to the back and found some hummus and bagel chips and made myself eat. i was guessing that my blood sugar was low but it was a little scary. the last thing i want to do is pass out at work. luckily, i have one person at work that knows i'm pregnant so she gave me a coconut water (lots of electrolights) and after about 45 minutes i started to feel normal again. i have my 12 week check up coming up where they'll do a full work up with blood tests, ect. the most frustrating thing right now is that i'm just totally exhausted all the time. david is super supportive and sweet at home, but its stressful not being able to talk about it and share the news. we were at a birthday dinner for a dear friend this weekend, surrounded by people that we love and all i kept thinking about was how fun it would it would be to tell everyone.
it will have to wait though. i AM excited that stumbled upon the maternity section at www.asos.com. they have the cutest little dresses and brightly colored maternity jeans that i will be ordering later on for sure! i also found a helpful website full of lists for everything you need from your baby registry to what clothing basics you need to stock up on for the impending bump. www.thecradle.com is great and part of www.giggle.com, where we're thinking of registering.