Milestones

"Charlie is all mine," I told my four year old Ellie.

"No Mommy, you have to share (pronounced chair) him!!" Ellie stated forcefully.

"No, Charlie is mine!" stated my husband.

"No Daddy, you have to share him!" Ellie countered.

"Why?" asked Daniel.

"Because everyone will love him! And because he doesn't like you that much," Ellie explained.

Ellie & Charlie

The logic of 4 year olds can be entertaining as well as insightful. We hope that everyone will love our Charlie; it almost feels like everyone already does and for that we are grateful. We are also thankful that Charlie does like his Daddy, despite Ellie's statement.

We've passed the 2 month mark and Charlie is doing well. After his first couple of sleepy weeks, he finally got down to business with nursing and has been eating well ever since. He's gaining weight at a steady rate and has made great strides in his head control. After a few nights of sleeping all the way through the night at 2 months, he moved from the bassinet into his own bedroom and has been sleeping well there since. 

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He's had a few regular visits with his pediatrician and a first visit to his ENT (ear, nose and throat doctor). An ENT doctor is important with Down syndrome as many/most DS patients have narrower passageways - tiny ear canals and nasal passageways. It's more common for babies to experience fluid buildup, or as they get older frequent ear infections. It can also be a little harder to breathe, so we make sure to keep his nasal passageways clear with an aspirator (or as we refer to it in our family, the booger sucker). The doctor also explained Charlie will probably face some form of sleep apnea, but likes to wait to do a sleep study until the age of 5 as long as there are no issues before then. 

Charlie was accepted into Early Steps (aka Early Intervention), a program that works with kids ages 0-3 that have significant developmental delays or an established medical condition that will likely result in a delay. They evaluate your child and then set you up with a therapist(s) to give your child the best chance to minimize or overcome those delays. 

All that aside, we are doing well. Everything feels pretty normal, including the chaos that comes from being the mother of a 4 year old, 2.5 year old and 2 month old. 

I find I don't often reflect on the fact that Charlie has Down syndrome. It's a part of who he is, and he is a part of our family. It's our "normal". However, I do have moments, often unexpected, where something will hit me out of left field. 

My brother and sister-in-law welcomed their first child, a son, into the world about a week and a half ago.

Charlie and his new cousin, Xander

It is a precious thing to see people you love become parents when you know the many joys that are ahead of them. But I had a difficult moment when I saw my nephew holding his head up with more control than my 2 month old Charlie has. I picked up on another "skill" - I call it that because that's what my friend, an occupational therapist, calls it. My nephew was bringing his hands to center, or midline. I didn't know that was a thing until they asked me if Charlie was doing that when we did his evaluation for Early Steps at 4 weeks of age. Charlie has started doing it recently which I am happy to see, but it brought an emotion to the forefront that I didn't know was present. I guess if I was to be honest, it was jealousy. I was jealous that my nephew was doing these things on his first day of life when my precious 2 month old is still working on it. Jealous that it came effortlessly to this sweet newborn making me feel silly to call it a "skill" because it requires no learning period for him to do these things. Granted, pride and love and jealousy can occupy the same space. This wasn't an angry, resentful jealousy. I am thankful that my nephew already has such strength and development. I want to see him live up to his fullest potential in life. But it makes me consider that these 2 little skills that Charlie has had to work for at months are just the tip of the iceberg. 

Charlie is going to have many developmental delays in life. That is a fact. It will take him months or even years to acquire skills that come naturally to most children. He will have to work hard to gain many or most of these skills. It makes me take for granted less those abilities that children seemingly effortlessly acquire. 

My other nephew is almost 5, and he has difficulties eating. He has trouble chewing and swallowing his food.  He has undergone lots of testing and therapies to try to determine what the problem is, but his progress is achingly slow. My sister has shared with me how difficult it can be to watch other children eat, to watch them chew and swallow their food without thought. She and her husband are constantly prompting their son to chew, working constantly to get enough calories into him. I had no framework to understand this feeling until that moment in the hospital as I watched my newborn nephew. My sister and I spoke on the phone about this and she put it well. She said it's hard to watch other kids do something that your kid cannot do. 

I want Charlie to do as much as God has planned for him. I want to help him develop and grow and live up to his fullest potential. I will probably celebrate each milestone he accomplishes in a way I never did with my daughters, because of the time and effort it will take him to reach those milestones.

(If you read this post before and it seems different now, my originally published draft disappeared and I don't quite remember my final version...but I think the gist of this post remains the same :-)

Charlie's Birth Story

"You understand there are risks to anesthesia?" the anesthesiologist asked me.

"Yes," I managed to get out, waiting and wanting to be knocked out as quickly as possible.

After a few more quick questions, he placed the mask on my face and I blissfully fell into unconsciousness. I woke up in the recovery room about an hour later. I'm a little unclear on some of the details, but have managed to piece together most of what happened from family, friends, medical staff and paperwork. 

On October 13th, I woke up around 12 am from a contraction. It was strong enough to wake me up, but not a serious one yet. Kind of a warning. I continued to have contractions off and on for the rest of the night/morning, but managed to get sleep in between them. I had a scheduled checkup that day at the birthing center; I was hopeful that labor might be starting. My baby boy was 37.5 weeks (40 weeks is full term). The midwife agreed that something might be starting, but I tried not to get my hopes up. I continued to have contractions off and on throughout the day, but it hadn't developed into a pattern yet. We put all the grandparents on alert and made sure we had everything packed.

I pulled out a puzzle to work on, to keep myself distracted and to keep myself upright/standing, in hopes that labor would progress faster. Around 9 pm I decided to lay down for a little while. I woke up to some very strong contractions around 11 pm and knew that I was done sleeping. They were really starting to hurt and it took all of my focus and concentration to work through them. We called the midwife around 12 am. The contractions hadn't established the pattern they say to watch out for (5 minutes apart, lasting for 1 minute, consistent for 1 hour), but things felt like they were progressing rather quickly. We said we'd meet at the birthing center at 1:15 am. 

We arrived and I was thankfully already 5 cm dilated (the goal is 10 cm). I climbed into the nice, deep bathtub; they thought it might help relax my body. Daniel stayed with me and the midwives went to fill out some paperwork down the hall. The contractions were getting stronger and stronger; I hadn't been in the water for more than 20 minutes and I was already feeling the urge to push. Between contractions, I mumbled to Daniel to get the midwife. She came quickly, expecting that maybe I needed a little encouragement. 

She was surprised to find I was already 9.5 cm, and it was almost time to push. A few more minutes passed and my body took over and started working to push baby boy out. I'm not sure how long I pushed for - maybe 10 or 20 minutes, but it didn't take long for him to come. I hadn't planned on having a water birth, but at that point there was no way I was able to get out of the bathtub. 

What a blissful moment it is to birth a child; for the intense pain to fade away to the background and you hold your child in your arms that you have carried in your womb for 9+ months. It is an intense relief for the pain to end as you come face to face for the first time with your child.

Charles Duncan Yarborough, Charlie for short, was born at 2:20 am, 7 lbs 5 oz and 20" long.

I snuggled him and we waited for the placenta to deliver...and waited...and waited. They gave me pitocin to help the process along, but it still wouldn't come. I'll spare you the details...but my blood pressure started to rise, and I started to bleed more than what was considered acceptable. I was so tired; I had lost 2 nights of sleep and just endured labor and delivery. And now this. 

They called for an ambulance to bring me to the hospital; the midwives wanted me to receive the care I needed before things got any worse. Daniel and I headed to the hospital; we left Charlie with the midwives for them to give him a thorough checkup. I was too weak and tired to have Charlie come with me. By that point the pitocin had really kicked in and I was having some pretty strong contractions again. My body was trying to push to get the placenta out, but every time I pushed I lost more blood. So I had to try not to push, which is moderately tortuous and fairly impossible.

We arrived at the hospital and they brought me straight up to the operating room. The surgeon and the anesthesiologist asked me a handful of questions, got my verbal consent and mercifully knocked me out with anesthesia. 

They were able to remove the placenta, and they gave me four units of blood. I had lost around 1.2 liters at the birthing center and I believe another 1.8 liters on the operating table, for a total of 3 liters lost. A pregnant woman has 6 liters of blood in her body. The placenta circulates .5 liter of blood every minute. I was very thankful for the quick actions by the midwives, nurses and doctors. I know that God used them to preserve my life. 

I woke up in the recovery room feeling worlds better, very thankful to have gotten my first real bit of rest in 2 days. Daniel was there with me. I had so many wires and tubes coming out of me, I felt like I could barely move. The midwives arrived shortly after I awoke and brought us our sweet Charlie. They had done his newborn exam and ran through a list of positive things concerning his health. Then, they very sweetly and gently started to tell us about a number of physical markers that they had also observed, saying they were probably markers of a genetic disorder and recommended we have Charlie admitted to the hospital so that they could run some tests on him. They spoke with the nursing staff and helped to pave the way for that to happen.

in the recovery room

After a couple of hours in the recovery room, they sent us upstairs to what would be our room for the next 2 days. It took until sometime that afternoon for the hospital to admit Charlie; I don't really remember in what order things happened, but a pediatrician and a geneticist both came and took a look at Charlie. They were both pretty confident that Charlie had Down syndrome, but we would need to wait 1-2 weeks for blood work to confirm that. In the meantime, they checked out his heart with an echocardigram (approximately 50% of those with Down syndrome have structural problems with their hearts), did an abdominal x-ray to check for intestinal blockages (also fairly common with Down syndrome), checked his hearing and his thyroid, and a handful of other things.

We were thankful to have everything check out okay. They let us leave Sunday afternoon and we brought our boy home with us. 

We did not have genetic testing done during the pregnancy. Sometimes there are false positives, and with some of the tests there is a risk of miscarriage. Besides, the results wouldn't have changed anything about what we would do. We believe that all life is created by God and that He is the giver and taker of life. 

We received confirmation of a diagnosis of Down syndrome a week and a half later. All of the doctors had agreed they thought that Charlie had it, so it wasn't a surprise to receive the news at that point.

We know that Charlie is our gift from God and that he is exactly who God intends for him to be. That much said, I did go through a short grieving process. The grieving was more for the loss of my expectations than anything else. Charlie will not have the life I had anticipated he would. He will not experience adulthood in the way I expected, and he will likely have more challenges to overcome than the average person.

But he will also experience life with a greater measure of happiness than most people, and he will share that happiness with those around him. One dear friend shared the results of this study with me, that 99% of  people with Down syndrome are happy with their lives. That brought me great comfort, because I had spent so much time thinking about what Charlie would not experience, about all of the things that would be lost to him for his diagnosis and being sad for him. But the odds are he will be the happiest out of all of us. And I believe one of the greatest desires for any parent is that their child would be happy. What joy that brought to my heart!

I have a lot more thoughts on all of this, but I think I will save them for another post. Thank you for reading our story.