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.