Some thoughts

This post has been niggling in my brain for a few weeks. (not sure if niggling is really a word, but I tend to make stuff up). A few weeks ago, on two seperate occasions on the same day, I had the same conversation that is bugging me still.

Both times, I was talking to a woman about the staggering abortion rate of babies with Down syndrome. Both times, the women were Christian moms who are very pro-life and who have been very supportive of Eon. Both women expressed dismay when I told them that 90% of women terminate their pregnancies when faced with a Ds diagnosis. Both times, I thought we were on the same page...until they expressed the same sentiment that caused me to suck in a breath.

"That's terrible. I know someone who was told that her baby had Down syndrome, but it turned out to be perfectly healthy." What? Did you mean to just imply that it would be a greater tragedy if she had aborted her "perfectly healthy" baby than it is that so many babies with Down syndrome are aborted?

I know that I am super sensitive to this issue, and I am convinced that neither woman intended to express that sentiment. But, I do think that somewhere in their world view, a belief has taken hold that briefly poked out it's ugly head. The belief that much of society adheres to: "People are valuable for what they can do, versus that they just are." They would deny it, if confronted with it, and I do not think that it is a conscience thought, but it is there. Deep inside, both women believe that aborting a child with Down syndrome is less of a tragedy than aborting a child without it.

It makes me sad. I have more thoughts "niggling" but we are late to an open house.

We have a surgery date!

Eon's surgery is scheduled for June 12. We go to Riley on the 11th for pre-op which will take 5-7 HOURS! We will not know until then what time his surgery will be. I am so glad we live close to the hospital. I can't wait to be on the other side of this! I'm doing very well and continue to have amazing peace about putting his life into another's hands, probably because I already have. He is not mine. His life belongs to the One who made him. I will fight for him, pray for him, love him, challenge him, disciple him, play with him, and provide him with every opportunity for a full life, but ultimately, I am not in control. Praise God - I am not in control!

We've had a busy weekend attending graduation open houses. Eon seems to enjoy being passed from person to person. He's a big hit with our friends and the friends of his siblings. Speaking of siblings, the middle four are staying with their Aunt Tonya for a week so we can get some projects completed around here. It is very quiet. I think Eon misses the commotion and bedlam as he seems a little fussier than usual. I think Aunt Tonya should be considered for sainthood. :)

Home...for now

Simeon was finally discharged from the hospital yesterday. We were so blessed to have a private room for most of his stay. We didn't realize how blessed until they had to move us into a double room a few hours before discharge. Oh my. We were even more excited to be released!

He had his nap study in the morning, but I was told it was to be in the afternoon so I let him sleep after his 6:00 a.m. feeding. Ugh. So he just dozed a little bit during the study and never got into the deep, scary sleep. Needless to say, they didn't find anything.

What they did find (that is not related to the apnea, apparently) is that he has a double aortic arch. It's a fairly rare congenital cardiac abnormality that basically means that his two aortas form a ring around his neck, compressing his trachea and esophagus. He is virtually asymptomatic at this time, but as he grows the compression can cause scary respiratory and swallowing issues. It is very good that they found it so early because the worse the symptoms before surgery, the longer the recovery time. So, we are waiting on the call to schedule his surgery for sometime in the next few weeks.

Cardiovascular surgery is a little frightening. Strangely, I have perfect peace about it. I believe that God was protecting our little guy when he woke me up to check on him the other night ,and I believe that he was also protecting him when he allowed the doc to find the DAA on his upper GI test. As much as I would like to be in control, I am not. Amazingly, there is a peace with that knowledge.

Still here

We were supposed to be a direct admit yesterday, but someone forgot to tell the ER, so we visited with them for 4 1/2 hours. Of course, they wouldn't let Eon eat, so he went 6 hours without a feed. He was an amazing little trooper and a huge fan of pacifiers dipped in sugar water. We finally got a room (and Eon finally got a bottle), but by then it was too late to get any of the tests that were ordered. Disorganization seems to be the rule around here.

Today, he had an upper GI, and ultrasound, and a speech consult for feeding issues. Tomorrow, he is supposed to have a contrast CT scan under general anesthesia in the morning and a nap/sleep study in the afternoon. Tests seem to breed more tests, so all of that is subject to change.

I would give you an update on what they found and what they're looking for, but honestly, I've decided that ignorance is bliss and have tuned out all explanations of possibilities. I just want them to tell me what they find and how they plan to fix it.

I'm finding it difficult to be here. The staff is wonderful, the disorganization is frustrating, and not having a bathroom in the room is maddening. I don't like to leave him unless he's sleeping so I'm trying to coordinate my bathroom trips, meal runs, and pumping sessions with his internal clock. I'm learning to really multi-task when Shawn is here so I can meet all of my needs while he stays with the baby. This morning, I didn't eat breakfast until he came at 11:30. I was hungry, but mostly I just really needed coffee! :)

We have had some positives though. The nurse came in to check his vitals at 4:00 a.m. and I decided to go to the pumping room. I came back to her holding my wailing baby. The second he heard my voice, he instantly calmed. I didn't even know he knew I existed! He is definitely showing a preference for both Shawn and I. Shawn passed him to another nurse while he fixed a bottle, and he would have none of it! That bottom lip started puckering and then he lost it.

I was doing some belly time with him and he suddenly rolled over. He's done that a few times, but it's never been intentional. This time, when I put him back, he immediately rolled over again! Yeah! Now he does it every time we place him tummy down. He gives us a huge grin, like he's pretty proud of himself, too.

Hopefully, we will come home tomorrow evening, but I'm not holding my breath.

Terrifying!

There have been two times that I checked on Eon in the middle of the night and thought he wasn't breathing. A gentle nudge was all he needed and he'd flinch and breathe and I thought maybe I'd imagined that he wasn't. Until last night. I woke with a start and went over and laid my hand on his chest. No movement. I slid my hand lower and still didn't feel or hear anything. So I gently shook him. Nothing. Shook him side to side harder and still nothing. Panicked, I picked him up and as I lifted him from the crib, he startled and loudly inhaled.

I held him the rest of the night and didn't sleep. Took him in to see the ped today who checked him. (He looks great!) The ped called the developmental ped at the Ds clinic and they recommended admitting him today for a full work-up. Only, because it's Friday, they wouldn't really do anything until Monday. Worried about secondary infections and medical screw-ups, I talked them into a home apnea monitor for the weekend and he'll be admitted Monday morning.
Terrifying! Please pray for peace for me and safety for him.

Feeding Woes

This morning Eon took 6 ounces of thickened milk instead of his usual 4. I've noticed him wanting more in the last two days, but I'm not sure if it's a growth spurt or he's just needing more calories because he's getting older and bigger. I've never had a bottle-fed baby before, so I feel like I'm floundering here.

The problem is that I am not making enough milk for him. I've been exclusively pumping since he was 3 weeks old and had the swallow study. I know other EPers who pump and have freezers full of milk. At first, I probably could've done that, but it didn't make sense to me to continue pumping every two hours and store up milk that I'd never use, so I settled into a routine that allowed me to pump just enough to keep up with his needs. Until now.

I need to pump more frequently, but who has the time to do that? It was easier to pump every two hours when he was tiny, because no one expected me to do much. Now, however, our lives have returned to the "new normal" and everyone is involved in their various activities. I'm expected to feed them all, and keep up with everything else...you know...little things like the education of my children, laundry, bookkeeping for the business, baths, housekeeping, etc.

I don't want to transition him to formula. I'm still hopeful that he will one day be able to nurse (although that hope is waning). I also know that breastmilk is the best to help him stay healthy. And, last but not least, formula doesn't seem to agree with him. He's spit up and struggled more with constipation when he's had it. (He rarely spits up.)

I guess I just need to suck it up (or out, as the case may be) and increase my pumping sessions. Yet more television and fast food for my littles won't kill them, will it?

Regrets

The following is a post I wrote on the Down Syndrome Pregnancy board at babycenter.com.

We did not have a prenatal diagnosis of Ds, although we did have some markers. Still, when Eon was diagnosed (before I even had a chance to hold him...grrrrr), it was a shock. A wave of emotion and fear hit me, the likes of which I'd never experienced before. Most of that fear and sadness abated as soon as I held him, but some of it clings still.

It's different, now. The fear is related to all the things that can still go wrong with him medically, the threat of anything that might take him from me. The sadness is related to the fact that I was ever afraid or sad to have a child with this diagnosis. I regret my sadness and fear. Is that even possible? To regret an emotion that you cannot control?

This child and his life are nothing to be sad about or afraid of! He is wonderful and perfect. He is his own little person and he is an amazing blessing to our whole family. His life is "normal", except he gets more attention than his siblings did - partly due to therapies and appointments, but mostly due to five siblings who refuse to leave him alone. :)

Two days after his birth, DH bought me a willow tree statue of a little boy holding a balloon in the shape of a heart that says, "Hope". I remember bawling when he gave it to me, because that summed up exactly what I was clinging to. Hope. Hope that he would be ok. Hope that he would be high functioning. Hope that others would love him as much as I already did.

It was a hope born out of fear. I just noticed that statue again. I cried again, but this time for a different reason. It represents to me all of those bittersweet emotions I experienced at Eon's birth. It makes me sad that the diagnosis of Down syndrome was such a monster in my mind, when, really, it's such a little part of life.

I still have hopes for Eon, of course. But they are more in line with what I hope for my typical kids. I hope that he has a strong faith that he can communicate effectively. I hope that he is a blessing to those around him. I hope that he will grow to be a responsible adult and/or be the best "Eon" that he can be. Most of all, I hope that he has a special love for his momma!

I want to encourage you, you brave mommas with a prenatal diagnosis. It's ok to be afraid, but soon you will realize that your fear is groundless.
Blessings to all of you, and Happy Mother's Day!

Difference is an Artist's Game

This is beautiful! I have to agree with this young girl.

www.youtube.com/watch?v=MO911lWVGpQ...

Eon got to meet Grammy and Grandpa for the first time today and I didn't take one picture! Egads! They've been in the Everglades for the last six months (Grandpa was a park ranger) and we were so busy looking at pics, I didn't take any. Ugh. Eon hadn't napped all day and finally fell asleep about a half hour before they arrived. Needless to say, he was not his charming self. But Grandpa says he's a keeper! :)

Finally, some pics!

Finally uploaded some pics of the little guy! He's smiling more and more, although they are usually directed at his mobile or Mr. Fan. He's also starting to suck on his hand. His oldest brother, Ben, sucks on his two middle fingers, leaving his index finger free to stick up his nose. Hoping Eon doesn't pick up that little trick!

Shortly after Eon's birth, I discovered a message board on babycenter.com for moms who have kids with Ds. It has been such a blessing! We discuss concerns, support each other, and brag on our special kids. Because I surf the net while pumping, I spend a lot of time on the computer. I've discovered that there are message boards or "communities" for just about anything you can think of. There's even one for those of us that exclusively pump. :)

Last night, I discovered one for those who have chosen or are choosing to terminate their pregnancies because of medical issues with the baby. Oh my. I wish I hadn't read the messages. Most of them aborted their babies because of a Down syndrome diagnosis. I feel sick. One woman posted because she is overcome with guilt and recently had a miscarriage. She was wondering if karma had something to do with her recent loss. All of the other women were quick to assure her that she did nothing wrong. In fact, according to them, she took the high road and was completely selfless in taking the life of her baby, so it didn't have to suffer. I have been devestated since discovering that the termination rate for prenatal diagnosis of Ds is 90%, and yet, even that did not prepare me for encountering these women. The lies they believe are many.

I couldn't help myself. I sent a private message to one who has an abortion scheduled for next Wednesday. Her baby, too, has Down syndrome. I told her how wonderful these kids are and how much they can accomplish. I told her I understood her fear, that I'd experienced it, too, but that it will disappear. I asked her to give her baby a chance. I've not heard back and I don't expect to.

As I was writing the truth about Ds, that these kids can accomplish so much, I was struck with the realization that therein lies the problem. We only value people for what they can do. I was trying to convince someone that her baby deserved to live because his defecits will not be that bad. If he were diagnosed with something that limited function more, I wouldn't have had a leg to stand on. How do you communicate to someone that they should value life because it's life? How have we gotten to this point that we have to?