Thursday, April 30, 2009

OT today

Today, Eon had his second OT session. For some unknown reason, he didn't nap this morning and so was completely out when his therapist, Jenny, showed up at 2. He smiled a bit and seemed happy when I woke him up...for about 5 minutes. Then he just fussed and fussed. I fixed him a bottle so she could observe his feeding. After telling her how well he's been doing, he completely proved me wrong and obviously aspirated a few times. Little stinker. I think the milk was too cold as I'd gotten it out of the fridge and didn't spend a great deal of time warming it up. Of course, I didn't come to that conclusion until she was gone.

I used to work with Jenny when we were new grads. It is really fun having her back in my life! Eon didn't appear to be a big fan, today, though. He continued to fuss after he ate and really gave her a hard time as she attempted to treat him. Oh well. She had some ideas for me to try with him and did say he's tracking better than last time. Next time, she'll see him in the morning. Hopefully, he'll be nicer to her!

Wednesday, April 29, 2009

Bad Momma

Simeon has feeding issues. He was aspirating thin liquids, so we thicken them. At the last swallow study, the specialist thought he was simply afraid of aspirating so he was self-limiting because feeding was scary for him.

I've been measuring the infant cereal that I add to his bottles in a metric container. This morning, I realized that I left that container downstairs. Too lazy to run down and get it, I decided to do the conversion to English measurements in my head and use the measuring spoon I had upstairs with me. Bad idea.

After mixing the bottle, I sat down to feed him, only to have him gag and sputter. I tried again...more gagging. What in the world? I kept trying with the same result. (What's the definition of insanity?) Finally, I clued in that I mis-measured. I ran downstairs and retrieved the metric container and realized that I only gave him half the thickener he needs. Ugh. Poor kid!

By the time I got it right, he was so freaked out he just clamped his mouth closed. Smart little cookie. He finally did take it, but eyed me suspiciously the whole time.

Bad Momma!

Tuesday, April 28, 2009

God is good

I shared this testimony at church on Sunday and wanted to post it here because it's part of the journey:

I find myself at peace with the developmental delays and the intellectual disabilities that Simeon will face; but, I also find myself filled with anxiety about all the things he could face medically. We are blessed that he was born healthy, with only some minor glitches, but the list is long of all the things that can go wrong with these little bodies with extra chromosomes. And so I fret and worry and wallow in self-pity.

Last week, a young mom shared that her baby, Faith, fell down a flight of stairs and, "because of God's love and protection", was unharmed. Sometimes when we're in pain, we become very selfish. I'm ashamed to admit that my response was, "Well, I'm pretty sure God loves me and my baby has Down syndrome!"

I struggled with it all week. On the one hand, I knew that she was absolutely right to give God the glory for Faith's safety. The Bible clearly states that all good gifts are from above. Protection of our children is a gift. He gives us such gifts because of His great love for us.

On the other hand, He loves us each, individually but equally, and I know that children are hurt and die all the time. He loves those parents, too. How come they didn't receive the gift of their child's protection? How come they weren't blessed?

It all comes down to the age-old question "Why?". And I was asking it. Why does my child have Down syndrome? Why does he have to struggle to hit milestones that come easily for others? Why do I have to listen for each breath as he struggles to breathe during one of his many colds? (as he has now.) It wasn't a "shake your fist at God and yell 'Why?!'" It was a "help me understand. I really want to know" why.

And so, the Lord began to minister to me. I've always thought that a gift was a temporal blessing; something that made my life easier or better. I started to realize that maybe He has a different definition of blessings and gifts. It's in times of pain and uncertainty that we learn to rely totally on Him, and to realize that His strength is perfect in our weakness. It's in those times that we learn, with every fiber of our being, that He is good. It's only in those times that we are conformed to His image and begin to store up for ourselves treasures in heaven. Maybe those times are a gift. His word says, "For we know that all things work together for good for those who believe and are called according to His purposes." I'm beginning to think that, while sometimes the "good" in this verse becomes evident with time, sometimes it will not be evident in this realm. But it is there, and it is real, and it is good. Maybe that's why we're instructed to give thanks in all things.

As I was coming to these conclusions, a friend of mine (who lost a baby boy a few years ago and also struggles with these things), sent me this. It was in her church bulletin:

“Judge not Christ’s love by providences, but by promises.”
Thomas Wilcox

Experiences are very powerful. They often feel more powerful than promises. So it's tempting to interpret prosperity and ease as God’s blessing and tribulation as God’s displeasure. And sometimes they are. But often they are not.

Actually, what we see all the way through the Bible is the Lord training His disciples to trust His promises more than providences. Think of Abraham and Sarah waiting for Isaac, or Jacob losing Rachel, or Joseph in slavery and prison, or Job’s suffering, or David running from Saul. Think of Lazarus and the heartbreak of his death and the constant tribulations of Paul. And of course Jesus set the ultimate example by looking to the joy set before Him as He endured the cross (Hebrews 12:2).

Strange, isn’t it? In the Bible, pain is often the path to unspeakable joy, and prosperity is often an obstacle to it. What’s going on?

Simply, God wants us to treasure what we can’t see more than what we can. “For the things that are seen are transient, but the things that are unseen are eternal.” (2 Corinthians 4:18) And we find out that it’s pain more than prosperity that makes us look for what our eyes can’t see, and long for a satisfaction that doesn’t exist in this world.

So Thomas Wilcox’s advice is worth heeding. For those of us who are experiencing a bitter providence: “Bless God for shaking off false foundations, for any way whereby He keeps the soul awakened and looking after Christ; better sickness and temptations, than security and superficiality. ~Jon Bloom

So, today, I'm rejoicing that Faith was unharmed in her fall. And, I'm rejoicing that Simeon has Down syndrome. Because God is good, all the time.

Monday, April 27, 2009


Today we went to see the cardiologist, after having Eon's echocardiogram repeated last week. He had one done shortly after birth which showed a moderate VSD and a small ASD (holes in the heart for all you non-medical folks). The cardiologist later downgraded the VSD to small.

We waited for quite a long time in the plain, boring exam room with only children's books to look at. When the cardiologist finally got to us, he was just as nice as I remembered him. Last time we saw him it was at the end of a very long and discouraging day at the Down syndrome clinic. He was our one bright spot.

Anyway, he told us that both holes are significantly smaller and he doesn't need to see Simeon for two years!!! At which time, he fully expects both of them to be completely closed.

God is good...all the time!

Sunday, April 26, 2009


A friend of ours has a brother with Ds. He has been such a blessing to us since Eon's birth. Today, he said, "Your children will never lack for love with Eon around." I just thought that was so encouraging! He has only postitive things to say about growing up with his special needs brother.

Last week, I was explaining to Ellie (9yo) some of the challenges Eon will likely face. I mentioned that, while we hope he will become independant as an adult, he may need to live with one of us. To which she instantly replied, "I want him!" I told her we didn't have to decide today. LOL!

Saturday, April 25, 2009

A Little History

Simeon has been remarkably healthy. He has a small VSD (or hole in his heart) and the cardiologist is hopeful that it will close without surgery. We visit him again on Monday and are hopeful for a good report. Eon breastfed for his first 3 weeks until it was discoverd that he was aspirating. Since then, I pump and he is bottle fed breastmilk mixed with cereal to thicken it. I hope that we can return to nursing one day, but, honestly, I'm just not sure it will happen. His next swallow study in June 1. I was instructed to nurse him after pumping once a day, but he really doesn't do well with it - coughs and sputters - so, I really don't do it daily and just re-try every so often. He receives physical and occupational therapies on alternating weeks and is doing great.

He is a delight! He smiles and coos and is just a cutie! He is already fascinated by his siblings and the noise and chaos they bring. He is so snuggly! After Zak, his next older brother, I was ready for a baby who cuddles. Zak is almost 2 and still won't be still for longer than 15 seconds. Speaking of Eon, I hear him worming around in his crib right now. Time for a bottle and a change!

How it began

This is Eon's birth story: (He was born 1/29/09)

All day Wednesday I felt crampy and crabby. I spent much of the day putting snow gear on little people and then removing it, and then putting it back get the picture. We'd received a foot of snow and Shawn and Michaela worked all day out removing it leaving me with the littles. About eleven p.m., I started having contractions that actually hurt, but were 10minutes apart. After about 5 minutes, I'd convince myself it was nothing, only to have one come back. We have a friend who thought she was constipated all night while in labor, and I was sure that I would be the one who thought I was in labor, only to find out I was just constipated.

My friend Jeanne was to come over if I needed to go to the hospital in the middle of the night. I knew that Thursday was her birthday and prayed that God would let me hold out until morning because I wanted her to be able to sleep in on her special day. After a shower around 3a.m., they slowed in frequency and I was able to get some sleep (with weird dreams about the bad guy that was coming to squeeze my intestines. I kept thinking, "Here he comes!" when a contraction would start, yet I was cognizant enough to time them. Bizarre!).

In the morning, I told Shawn to call his parents to pick up the kids. Then I called my midwife who told me she'd meet me at the hospital. I posted my status on Facebook, too. Only to immediately freak out that I'd made a big deal out of nothing and call my midwife back to ask her just to check me at the office. She refused and told me to go to the hospital. I argued that it was too early because I was still nice. I cried and called my friend Peg to tell her I'd mistakenly gotten the ball rolling and now I couldn't make it stop. I just knew I was going to get sent home and, once again, face the walk of shame back to the car with my huge belly and overnight bag. Sigh. Then everyone was going to think I was a freak because, "this is her sixth child, for crying out loud! You'd think she'd know when she was actually in labor!"

Anyway, I told Shawn that if I were only 2-3cm, I was leaving and he could take me out to breakfast. I love to eat breakfast out! I told the receptionist to put me in as an outpatient as I would be leaving after getting checked. The nurse checked me and I was at 2cm. I started to get up to leave but she convinced me to let the mw check me, too. I was worried that the mw would make me stay and I really wanted breakfast so I mulled that over. Then it was too late, because she walked in, checked me, and announced that I was 3-4 (liar). By then the contractions were picking up (at 10:45) and she convinced me to stay and "monitor them for awhile". The nurse asked me about an epidural and I started to refuse. Shawn (who could barely move from shoveling us out of the driveway) jumped in and said, "Honey, we've done this with one and without one. Get the epidural!" So, I submitted to my husband. :) That was finally put in around 12:30 when I was 5cm and finally realizing that I wasn't going to go out for breakfast. Sigh.

The whole time I was there the nurse and mw kept telling me and each other how fast I was going to go. I wasn't too convinced (I'd heard that speech before from said mw and it was the longest labor EVER!). After the epi kicked in, my nurse went to lunch. I called about 20 minutes later to report my bag of waters was leaking. She came, checked me and stated I was about 8cm. and she'd call the mw, then she disappeared. About 10 minutes later, I called to tell them I felt like pushing. They came in and slooooowly started to get stuff ready. I told them I needed to bear down. The mw finally looked and said, "OH BOY!" Nothing was ready besides the baby. The nurse didn't even have gloves on when she helped catch him. Remember they were telling me I was going to go fast. Unbelievable.

After he was here and more nurses poured in to help, they were checking him and suctioning and my mw turns around and drops the bomb. "Tara, the reason we're looking him over so good is that he has some features consistant with Down syndrome." I said something like, "I wondered about that." I'm still not sure why I said that. I did wonder, but that was around my 20wk u/s. I really hadn't given it much thought in the last few months. Apparently, it was the right thing to say, because later the baby nurse told me that she knew then that we were going to be ok.
Shawn was shell-shocked. He just sat there and stared for a really long time. The nurse kept asking him if he was ok, and he barely responded. Finally, they left us alone and I asked him to hold Eon. He did and continued to stare into space. I just prayed. Soon, he looked at the little guy and started whispering to him. After a few minutes he looked at me and said, "Ok. What are we looking at, here?" I knew then that we would be just fine. I filled him in on what I knew and he responded, "So, one day at a time?" Exactly.

Back when we were told that he had a 5% chance of having DS, I prayed for 3 things: that he would be able to nurse (due to low tone, DS babies have a lot of feeding issues), that his heart would be ok (cardiac issues are almost always an issue), and that his bowels would function normally (another problem specific to DS kids). I am so blessed to report that, while we are working on some latch issues, he is a good little nurser and is gaining weight. His cardiac issues are not major and could resolve on their own, and he's a great pooper! :)

I think you go through stages. The shock was over quickly for me (within seconds). I'd expressed the desire many years ago to adopt a baby with Down's and I'm an occupational therapist, so his needs are not foreign to me. God has been preparing us for this for a long time. Now, I'm a little startled when people respond to the news by trying to encourage me. They mean well, but I want to tell them that I could never be disappointed in my son. He's my son. I know God has a plan for Simeon and for us. I know his days were planned before there were even one of them. I know that he was knit together in my womb by an Almighty God who knows exactly what He's doing. I am incredibly blessed to be this amazing little boy's mom and I am so very proud of him. We know there will be challenges ahead, but we plan to tackle them one day at a time.