4 Months old

"You were so very meant to be. And while I thought I had life figured out, I realize no one really does. Life is too grand to contain into the box I thought it should fit in. And it is made up of so much more than I thought I'd ever know. One thing is certain. You are ours, Little One. And we are blessed." -Kelle Hampton, kellehampton.com

. . . On Monday our baby Lincoln turned 4 months old. He is now 12 lb., 15 1/2 ounces (every 1/2 oz. counts!). He's getting stronger every day and his physical therapist (who comes every other week) is always amazed at the progress he makes each time she sees him. That's what we focus on right now- the fact that he continues to make progress. He has started to laugh a lot and makes the cutest cooing noises. It melts our hearts. We all stand around to listen. It makes our day! I love to listen to Jezelle talk to him, and say the exact same things I say to him.

To say this kid is loved around here would be an understatement. We are all pretty obsessed. Truly, he couldn't be any sweeter.

....but he's pretty much impossible to take a picture of!

and yes, I'm determined to get a picture of my two children looking at the camera . . . maybe someday it will happen!

can you hear her? . . . "just turn your head a little Linc Linc."

hm.....close!

Look! We did it! It's a miracle.

Our sweet Lincoln

I've been thinking about how to write this post for a week now, composing it over and over in my head; about what to say, and how to state it in just the 'perfect' way. I worry that I will never be able to truly express my thoughts or find words that are eloquent enough or powerful enough to describe the love we have for our sweet baby boy. And of course I then realized that it doesn't really matter how I tell Lincoln's story, for when I put it down in writing it will be so real. So definite. So defining. However that doesn't stop me from telling this story, because I want it documented. I want Lincoln to someday read this and know how much I love him. I want the world to know how blessed we are to have our sweet Lincoln in our lives.

And yet, this is probably one of the hardest things I will ever have to write in my entire life. Mostly because it's sad and amazing all at the same time. And so I begin to try and tell our story.

When I was pregnant with Lincoln and I found out we were having a boy I cried. I cried for joy and excitement, but I also cried because I was terrified. I knew the chances of having a boy with special needs was much higher than a girl, and I never ever wanted a child with special needs. I have worked in the field of special education for over ten years now and have had the incredible opportunity to work with the most amazing and inspirational families. They have lifted me up, given me hope and helped me be a better person . . . yet, I never ever wanted to have a child with special needs. I never ever envied those families no matter how life-changing their experience was or how blessed they felt for raising a child with special needs. I never ever wanted a child with special needs. But in ten years of working with families of children who have special needs I never ever heard a parent say that I would love my child NO MATTER WHAT. I have learned that for myself in the 3 1/2 months we've had Lincoln in our life.

I was instantly in love with Lincoln when he was born. And I loved him more each and every day I saw him fight for strength while trying to gain weight and get healthy. I loved him more as I watched him accept a tube being stuck up his nose and endure the heart burn he felt throughout the day. I loved him more as spit-up came out his nose and he learned to sleep in a new position so his apnea spells would stop. I love this kid so much I wonder sometimes if my heart will burst.

And I think the Lord has played a huge part in gently and slowly warming me up to the idea of Lincoln's needs and differences. When we learned he would be needing a feeding tube I cried. Everyone reminded me that it was temporary, that things would be ok, but I knew deep in my heart that there was more there than feeding issues. Next, we learned from an MRI that his brain had some abnormal and delayed growth (delayed myelination). That was a lot to take in, yet again the doctors told us they didn't really know what that meant for Lincoln's development. And then last week we learned that he has a chromosome abnormality on chromosome one- with both deletions and duplications of a specific place on that chromosome. Although I kind of felt sick to my stomach and wondered how we would get through this, I had been prepared for the blow. I knew deep down that Lincoln was different and had started to accept that since when I was pregnant with him. Somehow I just knew. Again, doctors don't know how his development will be affected and what his future looks like from having this chromosome abnormality. And so we take life one day at at time. We get out of bed every morning and celebrate each and every milestone he makes. We slow down and enjoy every smile he gives us and every giggle we hear from him. And suddenly the things that seemed important in life before are not so important now. Although I worry about Lincoln and what his future may hold, I also worry about how I will tell others the news and how those people will react. I worry about how he will be treated and what people will think. And yet, I worry about those same things with my sweet and typically developing child as well, so I guess that's part of being a parent.

What I have quickly learned through all of this is who our true friends are. We are so blessed to have amazing friends and an incredible family who steps in to help out without hesitation. People call or email to check in on how Linc is doing, to let us know they are thinking of us, and that means the world to us. And I must add that Shane has been the rock through all of this and continues to amaze me with his strength and faith in the Lord. And he too loves this kid more than life! My parents are incredible and I cry just thinking about them and the incredible love and support they have been. My dad said, "Well, what are we going to do, give him away? No. We will just love him for who he is. Always."

I was pretty upset when I learned the news about Lincoln's chromosome abnormality and wondered if I would just be sad forever. And then I found a blog that changed my attitude very quickly. http://www.kellehampton.com/. Kelle is my age and has a baby girl with Down Syndrome. She is an incredible writer and puts my exact thoughts into words in a much more eloquent way than I could ever state them. And so, for a few minutes I'm going to quote pieces from her blog that I relate to perfectly:

"A week. How can it already have been a week? I've thought a million times what I'm going to write here and how I'm going to begin and what order I'll put it in and I think I've been so afraid to come back here...so afraid of not doing justice this very precious night...of leaving something out...of attaching simple words to an event that is so far from simple, it might just not be possible. But I need to get it out. I don't know how it's going to come or if it will make sense, but I'm just going to write. And when I get stuck, I will pick up this tiny blessed life beside me and hold her tight. I will breathe her in and remember..."

"I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."

"I couldn't emotionally handle telling anyone and yet, strangely, I wanted people to know as soon as possible because I knew I needed the troops...I was falling, sliding, tunneling into a black hole and I needed as much love as possible to keep me up."

"Life moves on. And there have been lots of tears since. There will be. But, there isus. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.

The story has begun..."

And oh how we love this sweet little boy. Our sweet little Lincoln. We feel so blessed to be his parents and continue to have hope for the future.

Love

When I was pregnant with Lincoln I was told how much joy I would get by watching my children interact with one another. I was told, but words cannot even describe the overwhelming happiness it brings to watch them together. Since having Lincoln Jezelle has taught me more about unconditional love than I have learned in 32 years! I don't even think she notices his tube anymore and could care less that he doesn't always smile back at her or even sometimes act interested in her. She just keeps on loving, not matter what. He often lights up when she's with him though. He loves watching her and she loves him to death (almost literally sometimes when she squeezes too tight!). She always wants to be with him or around him and when people come up to see him, she runs over quickly to proudly announce that "this is my baby!" I've already seen her be very protective of him, especially when other children ask why there is a tube in his nose. Jezelle always responds matter of factly, "because that's how he has to eat sometimes." (Duh!!)

3 months old

Lincoln will be 3 months old tomorrow! Today at the doctor's office he weighed 11 pounds and 10 ounces. Good boy! Three weeks ago he pulled out his feeding tube and when they did an x-ray to confirm placement it was NG and not ND anymore. So, our GI doctor said to go ahead and try keeping it NG to see how he does with food in his stomach again (ND is placed past the stomach into the small intestine). Thank you Lincoln!!! It was meant to be because he showed us that he is able to tolerate feeds into his stomach! YIPEE!!! (However, since then he has pulled his tube out twice. And somehow I have gotten stuck putting it back in! . . . something a mother should NEVER have to do- way to traumatizing!)

Last week we met with our feeding therapist and the GI doctor. Together we came up with a new feeding plan to begin doing bolus feeds with Linc- a HUGE step in getting this feeding tube out! He's done fantastic with it! Bolis feeding is essentially feeding him in "meals" rather than having the feeding pump going 24 hours a day. So, he takes as much as he can from the bottle, and then the rest is pumped directly into his stomach, through the tube in a short amount of time (over about a 1/2 period). He's doing really well with this and takes more and more through the bottle each day. His feeding therapist, Jenn, is an angel sent from God! Seriously. We would not be where we are today without her. She's amazing and when she listened to him swallowing last week she said he sounds fantastic! His next swallow study is scheduled for the 2nd week of July. If he is no longer aspirating then, and is taking enough volume through the bottle than we can take the feeding tube out! Trying not to get our hopes up about that but definitely a light at the end of the tunnel. Right now Lincoln loves to:

look at his fish in his swing

hold his binkie in

hang out with his Daddy! He gives Daddy WAY more smiles than anyone else!

2 months old!

Our monkey is two months old!!! I took these pictures last week of him smiling on his 2 month birthday! I can't really say I feel like the time has flown by- it's been aVERY long two months, but we sure do love this boy!

He has the same lips as Jezelle.

(and yes, we KNOW he has big ears that stick out.Funny story: while in the hospital we met with a biochemical geneticist- sounds so fancy- and the first thing he asked about were his big ears! Unfortunately he was destined- with big ears on BOTH sides of our family! Poor guy!)

Our second home . . . Children's Hospital

As Lincoln's health history gets longer and longer I feel like I need to try and document it as best I can, incase I need to refer back to details.Unfortunately our baby Linc is back in the hospital, and will probably be here all weekend. On Thursday during his feeding therapy he started having desats (decreased oxygen saturation, where he holds his breath and stops breathing for a second or so), also called apnea. What the heck! So, they put him on a monitor, where they watched his oxygen levels in his blood and saw him do it enough that it was concerning to them. We were admitted to the ER on Thursday night, where they placed a smaller feeding tube in, hoping to decrease the obstruction to his airway. Fortunately that has helped tremendously!! For the first time in weeks he is not congested and his breathing is clear! Thank goodness. Why they did not just put a smaller tube in, in the first place I do NOT know!!! On Thursday night he had multiple apnea episodes so they switched his sleeping position to his tummy and so far that seems to be working well for him. He is in a funny thing called a 'tucker sling' where he is on the wedge, on his stomach, and then the sling holds him in, kind of like a diaper, so that he doesn't slip down to the bottom of the wedge (see pic below).

He also got an MRI done yesterday, which was pretty disturbing to watch as a mother. His tiny body laying in that huge MRI machine just didn't sit right. He was so good and cooperated through the whole thing- thank goodness they did NOT have to put him under general. They just strapped him in and put ear plugs in his ears. He went right to sleep and slept through the entire procedure. The radiologist asked me if I wanted to wait in the waiting room or stay in the room with Lincoln. Uh- I think I'll stay with my baby! I just sat in the room and cried, as the loud banging and clanking of the MRI machine went on and off. Unfortunately the only way to confirm placement of an ND feeding tube is to have an x-ray done, so he has had about five of those in the past two days, trying to get the placement right. Lincoln hates it when we have to stretch his tiny body out to take a picture. It's still not in the right place. Today we will meet with the neurodevelopmental specialist and go over the MRI in more details. We love our Lincoln and feel so proud of him for being a fighter!

Trip #2 . . . and 3 and 4 to Children's Hospital

When we found out that Lincoln has severe acid reflux we made an appointment at Children's Hospital to have him fitted for a "wedge". Apparently babies with reflux like to sleep at a 30 degree angle, so the PT department at Children's makes custom foam wedges that you take home, where your baby sleeps, to help lessen the pain. I have had friends who have gotten them for the babies and it's suppose to work like a charm! When we went in for that appointment the physical therapist also looked at how Lincoln ate and was worried about how loud he gulped his bottle and winced in pain when he swallowed. So, a swallow study was ordered, which we did last Friday. This is where they take a video x-ray of him drinking a bottle to watch how he swallows (which apparently is the most complex motor coordinating process your body does!).

I have a bachelor's degree in speech therapy and learned all about swallow studies in college. I'm sure I'd seen about a million of them by the time I graduated. I remember thinking they were so interesting. So, it was ironic to find myself looking yet again at another swallow study, but this time, of my son.


above was the chair they strapped Lincoln in to feed him the bottle and x-ray his swallow.

below is what his little mouth and throat look like on screen.

They found that Lincoln aspirates when swallowing, which means he does not close off her air way and sometimes allows liquid to go down into his lungs. He of course could choke when doing this and long term it could be very damaging to his lungs. He had a high chance of developing pneumonia. They told me they were admitting Lincoln to the hospital that day and would be putting in an NG (nasal gastric) feeding tube to help get things under control. I of course was devastated and worried beyond belief, as I know way too much about this stuff. When the SLP (speech language therapist) doing the swallow study told me they were admitting him to have an NG tube placed I started to cry. She said it would be ok, that it was short-term and he would be eating again in no time. I looked at her and said, "I have a Masters Degree in Special Education. I know there is more to this than just that and oh how I wish it were that simple." She said nothing.

Here is Lincoln sleeping in his hospital room, on his wedge. They did a number of tests, found nothing structurally wrong with his mouth or throat, ended up putting an ND tube in (which goes past his stomach into his small intestine) and taught us how to put in the tube (incase it comes out) and how to work the pump. So much information in so little time. Currently Lincoln is being fed a small amount of food 24 hours a day by a pump, in hopes that he will gain weight, get stronger, swallow better, stop aspirating and decrease his acid reflux. It's been a long week. The entire thing overwhelms me but I realized that I just need to have faith and take things one day at a time. I sure won't ever take my children's health for granted. We were in the hospital for two days (and one night) and I about went crazy. I can't imagine having a child in the hospital long-term. Here is our sweet Lincoln, ready to go home from the hospital with his ND tube.


and here is my new accessory- the black backpack that holds Lincoln's food and pump.

He has gained weight since putting in the tube, but still not as much as they would have hoped. We go back to the hospital next week for more tests and to see the dietitian. We pray he gets stronger quickly! Thank you for all your love and support!