34 Weeks!

Not only have we made it to 34 weeks, but I also didn't need to get an amnio reduction today. Praise the Lord! The baby looks great. The fluid level has not increased since my reduction last Monday, my cervix has only shortened slightly, and I'm still not dilated. Given the extent of my contractions lately, those are somewhat surprising findings. Even though I'm still on bedrest and taking a good dosage of Procardia, my contractions are coming more frequently and are becoming fairly painful at times. But the chances of making it to at least 36 weeks seem to be better. Given his surgical requirements, 36 is pretty important. 38 would, of course, be even better. So we're praying for that, though I'm not so sure my sanity can take four more weeks of bedrest.

Thank you so much for your prayers, everyone. God is definitely protecting this little guy.

It's good...

... to be at home for Christmas. There were a number of hours on Christmas Eve that I didn't think that was going to happen. Dr. L drained 1.5 liters of fluid Monday (quick way to drop 3 pounds!). Surprise, surprise, I was having contractions afterwards. Then she got the results of my FFN (fetal fibronectin) and it came back positive so she checked me into L&D (again). If it was just one or the other, then she probably would have let me go home. No such luck. A shot of Terbutaline was only effective for about an hour. I was contracting every 5 minutes.

I think my last nurse must have pleaded my case well with the on-call doctor because they let me go home around 4:00pm (my appt with Dr. L started at 8:30am) even though I was still contracting every 5 minutes. But really, it shouldn't have surprised anyone. I had the following procedures done yesterday morning: a pap (for the FFN), a vaginal ultrasound to check the length of my cervix, a needle stuck in my uterus for 1.5 hours for the amnio reduction, and a vaginal exam to make sure I wasn't dilated. Seriously... how much abuse can one uterus take?

The FFN being positive was not a good sign. A negative result means you will not go into labor in the next 2 weeks (barring unforeseen circumstances). The positive result I got yesterday means that I'm at higher risk for going into labor in the next 2 weeks. Baby really needs to bake for 3 more weeks (I'm 33 weeks now).

Christmas stuff: Nathan was beside himself excited about the train set and table his Granddad Roth gave him. He ran into the family room and immediately started playing with it and jumping up and down with glee. He didn't even glance at the other presents under the tree. And he'll usually open any and every gift he sees. But it was all about the trains. If I can figure out how to download a video, I'll add it here later. Unfortunately, the first video is rather short because I didn't think to check ahead of time to see how much room was left on the tape. So we only got about 10 seconds before I had to change tapes. Bummer.

Here's the view before anyone else made it downstairs:

I pray you all had a blessed Christmas!

Our little parrot

Nathan is in the stage where he frequently just mimics what we say. Cute sometimes... dangerous sometimes. Tonight it was simply hilarious. There's a tradition in Neenah where a firetruck drives all the streets of Neenah followed by a truck towing a decorated flatbed with Santa. Santa talks to all the children on his microphone, there's Christmas music blaring from speakers, and everyone goes outside to watch this (Mark has fond memories from his childhood).

Mark carried Nathan outside to watch this spectacle. It was quite fun. But Nathan has never heard of or seen Santa before. He was just watching all this in wide-eyed wonder. He had the same sort of bewildered look on his face as they came back in the house. I said to Mark, "Nathan's probably thinking, 'What in the world was that?'" Nathan was heading into his playroom and he said, "What in the world was that?"

Amnio reduction

Warning: If you have a queesy tummy, you might not want to read this post.

Dr. L drained one liter of amniotic fluid from my belly this morning. In short, not an especially pleasant experience. But it appears I'll need another one on Monday. My AFI (amniotic fluid index) was 40 before the procedure and 35 after it. The level last Monday when I was admitted to the hospital was 35, so this only took me back one week (refresher: anything above 20-25 is considered "high"). She would have liked to have drained more, but I was contracting quite consistently toward the end which was constricting the flow through the needle (told ya it could get a bit graphic), which was becoming rather painful. The baby handled this like a champ... no fluctuations in his heartbeat or anything like that. Of course, when he was bumping the needle that didn't feel so great.

Anyway... I get to stay on bedrest and the medication. If she had been able to get the AFI lower I might have been able to lower the dosage and possibly increase activity. But we get to try all this again on Monday (yes, she's working on Christmas Eve). Great. Something to look forward to.

The kindness of our friends has been expressed so well to us. We have meals coming every night this week, then Mark is home next week through New Year's and my mom comes back on 12/23 through New Year's. And our fine friends (ATL Kraft's) have given me a NetFlix subscription so I won't get too bored! But I should probably work on Christmas cards... hmm.

Crosses

"We all have our crosses to bear." You've heard the phrase before. I don't know who first said it. It's not a direct quote from the Bible, but it's likely someone's interpretation of the verses:

1. "and anyone who does not take his cross and follow me is not worthy of me." (Matthew 10:38)
2. "If anyone would come after me, he he must deny himself and take up his cross and follow me." (Mark 8:34)
3. "And anyone who does not carry his cross and follow me cannot be my disciple." (Luke 14:27)


In two of those verses, Christ was talking to his disciples. It could have been the same conversation as recounted by two different men (Matthew and Mark). In the verse from Luke, he was talking to large crowds. None of these people, disciples included, imagined that Christ was going to be crucified on a cross. But it seems to be the best way to describe that Christ knew we would face trials. I mean, do they get any greater than dying on a cross?



I read this quote in the Streams in the Desert devotional yesterday and it really hit me:

George Matheson, the well-known blind preacher of Scotland, who recently went to be with the Lord, said: "My God, I have never thanked Thee for my thorn. I have thanked Thee a thousand times for my roses, but not once for my thorn. I have been looking forward to a world where I shall get compensation for my cross; but I have never thought of my cross as itself a present glory.
"Teach me the glory of my cross; teach me the value of my thorn. Show me that I have climbed to Thee by the path of pain. Show me that my tears have made my rainbows."


I don't want to look at our baby as a thorn or a cross. But the situations surrounding our present condition seem to present themselves that way sometimes. My prayer is that God would show His glory through our son's life and ours.




On a separate note... we're leaning toward having an amnio reduction on Monday (where the dr will drain amniotic fluid in hopes that it will relieve some pressure since the fluid level is so high already). Dr. L doesn't necessarily think this will eliminate my restrictions or medications to stop contractions, but it might allow me a bit more freedom to leave the sofa and go to church, for example. She thinks I'll be on the meds through the duration of my pregnancy and that I shouldn't consider lifting anything that I can't hold outright in the palm of my hand (I think at almost 28 pounds, that includes my sweet Nathan). My appt is at 9:30 on Monday morning. Please pray it goes smoothly and does not cause my water to break. Dr. L has basically said at this point that she is hoping we can make it to 34 weeks with 36 being ideal. It used to be 36 and 38. But please keep praying for at least 36 (mid-January). Thanks so much.



Oh, for those of you in the South who have had wonderful temps in the 70's lately... here are some photos. This snow has been here for 2 weeks now. Mark and Nathan built the snowman 2 weeks ago and it is still standing. No worries... they didn't block a real entrance to the garage. Our house actually has a 3-car garage (that could park 3 cars plus the snowblower, lawnmower, and patio set), which is common up here (compared to our shrink-wrapped garage in GA where we couldn't even fit 2 cars and a lawnmower).
This is the longest period of time Nathan has actually worn a hat. He was having so much fun making a snowman with Mark that he hardly noticed. Don't you just love his rosy cheeks?
The last photo is from our back deck. Can you picture deer back there? We haven't seen any since the snow, though. I don't know where they all went.

Eric

My sister, Kara, lost her husband, Eric, to cancer yesterday. It's been a long, rough road for them and Eric's body just couldn't take it anymore. The bone marrow transplant he had back in April apparently did its job in knocking out the cancer. But it also attacked his lungs and he never recovered.

Please pray for them. Needless to say, Kara is beyond devastated. And Eric's teenaged sons are going to need some major support. I so wish I could go out there to Massachusetts and help in some way. But that's not in God's plan for me right now as I sit here on my sofa. Please pray that I would find some way to minister to Kara's heart. I can't imagine losing Mark... I have no idea what she's going through.

Bedrest

It appears we might have blamed the wrong culprit for the contractions on Saturday. Trudging through the snow probably exasperated things, but after my ultrasound with the perinatologist yesterday morning, the cause of the contractions has become more clear. My AFI (amniotic fluid index) was up to 35 (it was 30 last week and anything above 20-25 is considered high). After the ultrasound, she connected me up to a monitor and found my contractions consistent at every 3 minutes. "I know you don't want to hear this, Jennie, but we need to check you in down the hall." (L&D - Labor & Delivery). Great. I got a shot of betamethasone to help mature baby's lungs (and another shot today) and they tried the Terbutaline shot again. This time it only worked for 30 minutes. After taking procardia and then upping the dose of that and still not seeing much of a reduction in contractions, my ob informed me he was keeping me there for the night.



So, after a night in L&D (trust me... those beds are meant for activities other than sleeping), I'm finally home with a prescription for Procardia and orders for bedrest. We now have to decide whether to do an amnio reduction on Monday to reduce the amount of fluid in my uterus. That could help in eliminating the contractions. But the risk is that it might break my water and cause me to go into labor. I'd really like to see if these meds will help with the contractions long enough to keep us from making that decision too early.



At least I'm home. Hospital bedrest stinks. I hate that I can't pick up Nathan, but if he'll climb up into my lap, at least we can snuggle. Mark will be home from Chicago late tomorrow night. We're blessed that by God's grace, my mom is here this week. After Mark returns, we'll start making plans for Nathan for next week.

Please continue to pray for a 2008 baby for us (2007 would be scary), preferably mid- to late-January. Thanks!

Christmas tree adventure

I'll start this post with the moral of the story: it's foolish to take a 2-yr-old and a pregnant woman on a 1/2-mile trek through 6 inches of snow on 5-degree temperature day.

The romantic notion of a family adventure to choose and cut down a Christmas tree was a huge debacle. Nathan actually wore his hat and mittens for once and walked for a bit after riding in the sled for a bit. But eventually he just started crying and wanted Mark to hold him. We weren't able to find "our tree" at the first field. The owner was out in that area and he recommended the next area which was 400 more yards away and up a hill. At that point, we bailed. Nathan was now screaming. Mark took him and walked/ran back to the car. We ended up choosing a pre-cut tree and going home.

All that walking was probably too much for me. I ended up in Labor & Delivery last night due to consistent contractions. After explaining my situation to the nurse on-call at my ob's office, she told me to head to the hospital. My contractions were 2-5 minutes apart but my cervix didn't seem to be affected. The on-call ob ordered (by phone) IV fluids and a terbutaline shot and procardia to stop the contractions. I was out in less than 3 hours. I have an appt in the morning with my perinatologist so we'll see if she decides to put me on anything to minimize these contractions.

I'll be 31 weeks tomorrow and we absolutely need to make it to 34, preferably at least 36. Mid-January is our goal. Please continue to pray for that. Thanks for your support, friends.

Vanity

My appointment with Dr. L today was a much longer appointment than it should have been, and the vast majority of it was good. Baby D was moving around like crazy, as usual. The amniotic fluid level was up a bit from last week but it wasn’t a significant increase. His heart rate was fine (145). One of the last things she checks for is whether he is practicing his breathing. Unfortunately, he was not cooperative with this today and we had to wait 20 minutes for him to do this. And he didn’t do it for a straight 30 seconds, which is what they’re looking for. But the reason for that measurement is to make sure baby isn’t in distress, and given his highly active state during the rest of the ultrasound, there wasn’t a concern about that. But if he hadn’t done some breathing practice, I would have to be connected to a monitor to check his heart rate for accelerations during movement, etc. Given that this will need to be done every week for the next 8 weeks, I really hope he cooperates or these appointments will take up a ton of time.

Dr. L took some more cute pictures today. As I was leaving, she mentioned how cute he is. She also noted that his slightly flat forehead seemed to be the only physical feature that sort of showed Down syndrome. I think in some way she was trying to be nice and relieve any concerns I might have about how he might look. Honestly, it just made me cry the whole way home. This just shows off my vanity, I guess. I don’t want him to have Down syndrome features. I don’t want him to look “different.”

Maybe I’ve just been spoiled. Nathan is awfully cute and always has been. And I’m sure that this baby will be cute too. And I know that when we actually get to meet him, we’ll always see him as our beautiful son. And even if he didn’t have Down syndrome, there’s no reason to believe this little guy would be another “Mini Mark.” Anyway, that’s my struggle of the day.

New Photos & Visit to Milwaukee

As you can see on the side margin, I've posted some new pictures (Mark and I and one of our little guy on ultrasound yesterday). I thought the 3D/4D of the baby was so appropriate... he looks like he's boxing!

Our visit to Milwaukee on Monday was as expected. Our little guy does have an AV Canal. The cardiologist said to expect surgery around 4 months of age. If he comes early, though, he would likely need a minor surgery after birth prior to the more major surgery later. So let's hope that he doesn't decide to enter the world before 36 weeks (mid-January).

The cardiologist was great: very informative and supportive. She agreed that the majority of baby's cardiac care, barring the actual surgery, can be done here in Neenah at Children's Hospital - Fox Valley. We feel quite fortunate to live 10 minutes from that branch of Children's Hospital and that there is an excellent pediatric cardiologist on staff there.

We also toured the NICU and Labor & Delivery on Monday after we saw the cardiologist. It was bizarre, actually. I didn't ask how many deliveries they do there every year, so I have no way to compare that number with Northside in Atlanta (where we delivered Nathan... they do 18,000 per year!). But there were only 2 operating rooms for c-sections and multiples and neither was occupied at 10:00am on a Monday, which seemed rather bizarre to me.

The NICU was very nice. It has 41 beds and on Monday there was only one bed open. Thankfully, Nathan is over 2 or he wouldn't be allowed in the NICU to visit during RSV season. As it is, we'll have to get him comfortable wearing a mask. Yeah, right. But our nurse coordinator, Andrea, from Fetal Concerns is sending us a mask with Mickey Mouse on it so we can try to teach him about it in advance.

I also had an appointment yesterday with my local perinatologist, Dr. L (she's the one who took that cute picture posted to the right). Baby looks good. His femur and humerous were both measuring about 2 weeks behind, which is common for babies with Down syndrome. He has hair on his head (no surprise, considering Nathan was nicknamed "Monchichi" by a friend in Atlanta). He was moving around like crazy, just like he was during the echo on Monday. I have a high level of amniotic fluid, but it appears it hasn't gone up since my last measurement 3 weeks ago. Due to the high level of fluid, however, I will see the perinatologist every week throughout the rest of the pregnancy (as well as my ob/gyn) to have the fluid level checked and the baby measured for growth. With all these doctor's appointments, I'm so thankful that we live close to Mark's parents, who have been so great about watching Nathan while I make my medical rounds.

The delivery is currently scheduled for Thursday, Jan. 31. For those of you counting, that means I would be in the hospital when the Packers beat the Patriots in the Super Bowl. I'm not too pleased about that schedule, but it's still tentative... Dr. L will give advice to the peri in Milwaukee as we get closer to the end of January.

Next step... I need to set up a tour of the NICU here in Neenah to try to determine whether we should push to get the baby transfered up here after he's released by the surgeon in Milwaukee. It could be weeks after that before he could go home depending on whether he's quick to learn how to eat.

Autism

Lest any of you think I'm kidding about not getting sleep these days, note the time on this post. Yuck. Tonight it's heartburn and stuffed-up sinuses.

I'm feeling a burden to post about my previous message about being most scared of our little guy having autism. This was in no means meant to offend any of my friends whose children have been diagnosed with autism. I think I'm most scared of that because it's the thing I know least about. I don't think I'm alone in that... does anyone know of a cause or a cure? There's a lot of speculation (vaccinations, growth hormones in meat, etc.), but I don't think anyone knows for sure.

The other thing I've learned is that I've probably offended someone in the past by saying, "He's autistic." I've recently developed a much higher level of sensitivity to describing someone by their diagnosis. For example, you wouldn't say, "That's a cancer kid." We should say, "He has autism," or "He's been diagnosed with autism."

The same thing goes for our little guy. He's not a "Down's baby." He's a baby. And yes, he has Down syndrome, but we will not let that define him.

On a separate note... we head to Milwaukee early this morning for an appointment with a pediatric cardiologist for a fetal echocardiogram. I'm still hoping that the perinatologist was wrong and our little guy's heart will be fine. After that appointment, we will tour the NICU and Labor & Delivery. On Tuesday, I have an appointment with my local perinatologist. I'll keep you posted.

Happy Thanksgiving!

As bummed as we are about some of our current life circumstances, we have much for which we can be thankful. So I thought I'd do a top 10:
10. The 10-1 Packers!
9. Fantastic friends who support us through thick and thin.
8. Excellent (though expensive) healthcare.
7. Living in the United States of America.
6. Good health for most of our family.
5. The expectation of a great son joining our family in January.
4. The best 2-year-old boy in the world.
3. The confidence that my husband would never (seriously) consider leaving me.
2. The best husband in the world.
1. Through God's mercy and grace, we have the gift of eternal life through Christ, reminding us that the troubles of this life are temporary and we can rest in the fact that we will spend eternity in heaven, the home for which we were created.

Happy Thanksgiving, everyone.

Anxiety

"Do not be anxious about anything, ..." Philippians 4:6a

Seriously, God? I shouldn't be anxious about ANYTHING? Including surgery the day after he's born? Including him not being allowed to eat for days after his birth? Including open-heart surgery before he's 6 months old? Including him receiving a lifetime of stares of pity and condemnation? Including not knowing how I'm going to be able to teach him the things that have just come naturally for Nathan? Including whether I can sleep in the same room as Nathan in Milwaukee and pump every 3 hours without waking him up? Including whether I'm going to completely lose it while I'm in Milwaukee? (should I just go ahead and ask my OB for a Rx for Zoloft in advance?)

Being anxious is something I do quite well. So the next part of the verse is where I need to be living these days: "... but in everything, by prayer and petition, with thanksgiving, present your requests to God." IT GETS BETTER... verse 7: "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Please pray for me that I will live in these verses every day.

The rest of our CHW visit

Crazy. It's been five days since my last post. Sorry about that. I know I said I'd follow up with some more information about the rest of our day in Milwaukee but I haven't felt much like writing.

Here's a summary:
Our coordinator and primary contact at Children's Hospital of Wisconsin (CHW) is Andrea. She first introduced us to a Child Life Specialist, who gave us some good ideas of things to do for Nathan to adjust to life with a baby brother in the hospital (such as a brag book of his own filled with pictures of the baby and a doctor's kit for Christmas).

The next person we met was a genetic counselor who presented us with an opportunity to be part of a research study. In a nutshell, there are some doctors trying to come up with a blood test that could replace an amnio to provide women with a genetic diagnosis of their child in utero. We told her we'd get back to her. It's a tough call, really. I mean, it will probably happen anyway. But ultimately, what purpose does an early diagnosis serve? There is no "cure" and nothing that can be done to alter genetics in utero, so will a test like this serve to cause more women to abort their babies if they find out their child isn't perfect genetically? Yikes.

Next up: pediatric surgeon. He did a great job of explaining the baby's first surgery (at the time of meeting him, we hadn't heard about the heart issue yet), which will likely be the day after he's born. The doctor told us how the surgeons will work together with the neonatologists in the NICU both before and after surgery.

The next appointment was with the perinatologist (high-risk obstetrician). I told you about some of that appointment in my Ultrasounds post. He also expressed concern over the high level of amniotic fluid that is already present (and it will continue to go up). He did say that he was glad this wasn't my first pregnancy and that it was a good thing that I went full-term with Nathan (so my uterus has already been "stretched" ... nice, huh?). He did sound a bit more concerned about my Braxton Hicks contractions than my other doctors have been. But I don't know if I'll even see this guy again because it could be any one of four of them in his practice who deliver this baby.

The next appointment, after finding out about the AV Canal, was with a neonatologist. Nice enough guy (even though he went to Notre Dame), but he decided for some reason that it was his place to share with us other "issues" our child could face in the future due to Down syndrome. After I had to correct him on two counts because he was quoting from what was likely an outdated textbook when he was in college, I pretty much tuned him out. I mean, really... our son is going to be under his care for about four weeks. Shouldn't he be focused on those four weeks instead of talking out his you-know-what about Down syndrome?

By this time we were running behind. We could have gone on a tour of the NICU and birth center, met with the lactation consultant, or postponed both for our next visit (11/26). The lactation consultant was in the hallway and she was definitely willing to wait until next time, but we decided to just go ahead and talk with her since she was there. Feeding is going to be quite an issue with this little one. During our talk, I think she sensed that I was about to lose it so she didn't go into much detail about potential feeding issues in children with Down syndrome, especially following this particular surgery. Good thing. And given my emotional state when we left, it's probably good that we didn't tour the NICU.

Well, that's it for our first visit to CHW. I'll post more later about specific prayer requests.

Ultrasound

Ultrasounds are supposed to be fun experiences for couples expecting a baby. You see your little bean wiggling around, the ultrasound tech says fun things like, "Look at his cute little toes," you dream about the joy this little one will bring you...

I don't like ultrasounds anymore. We had one yesterday for the first time in five weeks (that's the longest we've gone during this pregnancy without seeing our little guy on the big screen). It seems like every time we go in, there is something else found that is wrong. When you ask the ultrasound tech about the baby's heart and you don't get a "looks great!" answer, you just know. They can't give you bad news... that's the doctor's job.

In a nutshell, the doctor told us that he thinks the baby has atrioventricular canal (AV Canal or AVC). We have an appointment with a pediatric cardiologist who will do a fetal echocardiogram of our baby's heart to confirm the diagnosis on 11/26 at Children's Hospital. This doesn't change the fact that he needs to have his intestines repaired the day after he's born. If he requires heart surgery, the desire is to delay it until he's 4-6 months old so that he can get bigger.

I just want to scream, "God, leave him alone! Doesn't he have enough to deal with?" But in the same breath I want to beg Him, "Please heal our boy!"

I'll share more about our day at Children's later. We never got around to our tour. No big deal... we'll be back.

Tomorrow, etc.

So much running through my mind today, I just don't know where to start. First off, please pray for our day in Milwaukee (rescheduled for tomorrow). It's going to be information overload. We met with the chief of pediatric surgery last week Friday while he was up here for the day doing consults. He was very informative and we are planning to go the Milwaukee route. I also met with the new perinatologist here in our local area to discuss how we can manage the remainder of my pregnancy with as few trips to Milwaukee as possible. We'll have an ultrasound with her in 3 weeks (at 29 weeks), another at 32 weeks, then weekly until delivery (likely at 38 weeks).

We're going to try to get a tour of the Ronald McDonald House tomorrow morning before our appointments at the hospitals. After our day tomorrow we should be put on the wait list for the House. We've been trying to figure out how to best balance taking care of Nathan and doing what's best for the baby. We think that might be having Nathan and one of our moms stay with me in the House to minimize the amount of time I'm away from him. According to the surgeon we met on Friday, we should expect the baby to be in the hospital for 3-4 weeks aftger surgery (though it could be as few as 10 days if things go very well). We're planning to tour the NICU up here sometime soon to assess whether we might be able to have the baby transfered up here for recovery after surgery.

I've made some contacts locally via email and we hope to meet some families in person soon. One of those moms has a blog with a post that hit so close to home I can't read it without crying. I couldn't say it better myself, so I'll let you read what Melanie wrote. Her sons are 2 years and 4 months apart in age (exactly how far apart our sons will be if this baby makes it to term). And aren't her boys adorable!?

I'll update more after our trip to Milwaukee.

Miscellaneous thoughts

It's hard to believe it’s been almost three weeks since we found out our baby’s diagnosis of Trisomy 21 (T21… Down syndrome). But I think I’m doing better. I can occasionally talk about it without crying. I’ve received a lot of encouraging stories from parents of children who have that extra chromosome and I’ve gone to some of their blogs. I’ve found out I’m not alone… others have struggled through hearing their baby has Down syndrome. I still believe we made the right decision for us to find out ahead of time. It’s funny, actually… many people have questioned the decision with a statement similar to, “I’m sure the pregnancy hormones don’t help your emotional state.” As if post-partum hormones would be better! :-)

Along with some great family stories, I’ve heard some horrific comments made to parents of children with T21. One mom said that she had a woman ask her in a not-so-friendly way whether she knew ahead of time that her son had Downs. It wasn’t curiosity-based, either… it was asked in a judgmental way, as if to say, “Why would you actually CHOOSE to carry this baby to term?” Before we found out our boy’s diagnosis, I cried when I read that between 80-90% of babies with T21 are aborted when their parents are given an early diagnosis. But we all want the “perfect” family, don’t we? And even though I cried when I first heard that statistic, it unfortunately doesn’t surprise me anymore. Without a firm stand that you won’t ever consider aborting a baby, it would be way too easy to listen to a doctor tell you how difficult life would be with a child who has “special needs.”

Those first days of emotions after finding out your baby has T21 are so intense and overwhelming. And many doctors encourage termination. You’re reminded that you’re starting to show… you’ll feel the baby move soon… it will be easier to terminate before you get “attached.” Reality check! You’re already attached! But, as I mentioned before, I have a slightly better understanding of families making that “choice” now that we’ve been through that low point of hearing the news. Don’t go freaking out on me now… we would never consider it for our family. God has chosen THIS child to be ours to raise for His glory. But I just wanted to share so that if you ever hear of someone making that decision, don’t rush to judgment. You don’t know where they were emotionally when they made the decision. And there are plenty of families who want to adopt children with Down syndrome. But let’s face it… in our society, there’s almost a worse stigma attached to putting a child up for adoption than there is for “terminating a pregnancy for medical reasons.” Sad commentary on our society, huh?

Okay, stepping away from THAT touchy subject… Let’s talk about our little guy. According to what I’ve read, only 25% of babies conceived with T21 actually make it to birth (taking out the 80-90% termination statistic I mentioned above). I’m guessing that’s due to a lot of the health-related issues that are more prevalent in individuals with that extra chromosome. And we had some other issues with this pregnancy as well. I was on medication when this baby was conceived that caused me to have low estradiol and progesterone, which could have caused a miscarriage. I was on supplements of both during first trimester. At 5.5 weeks, even though we saw the baby’s heartbeat on an ultrasound, my doctor told us there was a 50/50 chance I would miscarry due to a subchorionic hematoma (SCH). I then had a few other SCH’s during first trimester. But our little guy has survived all of that (besides the fact that we weren’t supposed to be able to conceive “naturally” anyway!). He’s a fighter! And a blessing.

I’m a planner. Always have been. I look five steps ahead (often drives Mark crazy). So not having a reasonable level of confidence that our little guy will, for example, be running by age four is WAY outside my ability to cope. I guess that’s the point.

I’ve asked the question of “Why me?” Not from a victim standpoint, surprisingly. Rather, simply wondering, “How am I prepared for this?” It was almost a joke the first time I did a spiritual gifts assessment through church. The gift of mercy was low on my list. And since that time, it hasn’t risen much in the ranks according to recent assessments. So how in the world has God prepared ME to raise a child with special needs (not sure how I feel about that phrase… don’t all children have needs unique to them?... but I don’t know a better phrase…)?

I wonder what that means. Could it be that our little boy doesn’t need me to be as merciful to him as I think he might? Maybe more than that, he will need other qualities in his mommy, such as being the one who will stand up for him and be his advocate. And I’m sure this little guy will teach me more about mercy than anyone else could. But still… I know so many others who are more prepared than I am, such as a special ed teacher friend, a speech pathologist friend, an incredibly empathetic friend, or a laid back friend. What do I bring to the table? I can't think of much, so I guess it must be faith in God. Better work on that too!

Long week

Where to begin? Now that we're two weeks into the diagnosis, I thought I would be coping better. I guess I am. I can occasionally mention Down syndrome and not burst into tears. But that only lasts until someone asks how I'm doing with the knowledge of our baby's diagnosis.

There are some great online support groups for parents of children with Down syndrome. One of these days I'll get connected to something in person. I'd like to be somewhat "together" and not so emotional before I connect in person. Maybe that's unrealistic.

I'll hit 25 weeks tomorrow. I've had a cold (with ups and downs) for 5 weeks now. It's not much fun. I'm sleep-deprived on top of all the emotional stuff and that is just not a good combination.

There was a tragic death in our family last Sunday so this week was spent trying to deal with that as well as our life-changing news of 2 weeks ago. But God is gracious and giving us some calm in the storm too. Mark and I spent some time discussing names last night. I feel like I need to be able to start talking about our little guy by his name. Please pray for us to give him the name God desires.

Hospital trip scheduled

This morning I had my first appointment with my OB since receiving the diagnosis. I'm measuring (by fundal height) about 2-2.5 weeks ahead. That will likely go up due to increasing amniotic fluid due to baby not "consuming" as much. That's another story in and of itself that I won't bore you with, except to say, "And you thought I was HUGE when I was pregnant with Nathan!" Anyway, Dr. E. said that he would get the ball rolling by calling the Fetal Concerns Program at Children's Hospital of Wisconsin (CHW, in Milwaukee). And wow, the ball is now rolling.

I received a call later this morning from Andrea at CHW. She will coordinate our "introduction" to CHW, which includes appointments with a perinatologist (who will deliver our baby), a pediatric surgeon (may or may not be the one fixing baby's duodenum), a neonatologist (from the NICU), a lactation consultant (some babies with T21 have difficulties with nursing, and it could be a bigger problem since he won't be able to eat for a few days after he's born), and a child life specialist (a counselor who will work with us on communicating with Nathan), and a tour of both hospitals (labor & delivery, NICU, CHW). Andrea is great. She suggested we not do it all in one day if we don't have to because it can be information overload. But with up to 2 hours of transit time each direction, it makes more sense for us to try to do it in one day. So she set off to schedule our day in Milwaukee. It only took her a few hours to call me back with a complete schedule from 11am-4pm on Tuesday, Nov. 6th. Impressive.

Specific prayers

Some of you have asked how to pray for our boy. Thank you! Please pray that

1. His immune system will be strong (many individuals with DS are more prone to infections)
2. He will not have a heart defect (40% of children born with DS have a heart defect)
3. He will not have any hearing loss (40-75%)
4. He will not have epilepsy (5-10%)
5. He will not have hypothyroidism (5%)
6. He will not have opthalmic disorders, i.e. cataracts, glaucoma, etc. (60%)
7. He will not develop autism (10%)... side note: this is the scariest to me because the others don't affect how he could learn.
8. He will be high-functioning
9. He will have good muscle tone

His ability to learn, grow, and communicate are most important to us. So please pray that we would find the right therapists to work with him.

One of these days I'll be able to say, "My son has Down syndrome" without crying. But I'm not there yet. So please pray for us too.

Are we sure?

A lot of people out there seem to know of someone (or multiple people) who "were told their baby would have Down syndrome but the baby was perfectly fine." I know these statements are meant to encourage me. But here's the deal: I have not heard of ANYONE who was given an incorrect diagnosis of Down syndrome by an amniocentesis.

The problem is that there are lots of screening tests done that are mistaken for diagnostic tests. For example... there is a screening test called the "triple screen." This combines an ultrasound that measures the nuchal translucency (fluid level on the back of the baby's neck), along with bloodwork that measures AFP (alpha fetal protein), HCG, and estriol. This is considered a non-invasive screening. All of those measurements are combined together to determine the odds of that baby having certain chromosomal issues. So, for the woman whose likelihood of carrying a Down syndrome baby is 1:750 based on her age alone, the results of her triple screen might change her odds to 1:20. That is a "screen positive" result (as compared to her odds changing to 1:10,000). And if her AFP is especially low, for example, her doctor might tell her there's a very strong chance her baby has Down syndrome. BUT THIS IS NOT A DIAGNOSIS.

Go a few more weeks down the road and a level II ultrasound shows "markers" (soft or strong) for Down syndrome, her doctor might tell her that her risk is even higher. BUT THIS IS STILL NOT A DIAGNOSIS.

The only way to know for "sure" (99.4-99.99% accuracy) is to do a CVS or an amnio. These are invasive tests, meaning, a needle is inserted into the placenta (called a CVS, usually done between 11-14 weeks gestation) or into the amniotic sac (call an amniocentesis, done anytime after 15-16 weeks). I don't know as many details about a CVS.

But here's what we know about the results from our amniocentesis. The doctor who performed my amnio is one of the leading geneticists in the U.S. His lab is in his office (the amniotic fluid was not shipped out somewhere else). The lab was able to create 30 cells, all of which contained an extra 21st chromosome.

So are we sure? Yes, we're sure. So to pray for our baby to not have Downs is definitely to pray for a miracle from God, that He would remove that extra chromosome from every cell in our baby's body. Can we pray for miracles? Absolutely. Can we pray for healing and God's will regardless? Absolutely. And Jesus gave us the example that we can do so because He did on the cross. In Luke 22:42 He said, "Father, if you are willing, take this cup from me; yet not my will, but yours be done."

Okay, that was my technical post. I'll follow up with today's state of mind later.

Pray for healing?

Should I pray that our little boy would be healed? This is a tough one for me. Our baby already HAS Down syndrome. Can you pray for a fact to change? I mean, I feel like I can pray for a change in heart (mine or someone else's). Or for something in the future (for example, that our boy does not develop autism as well, though the jury is still out on whether autism exists in a person before it's detected, I think). But to pray for a reality to change... I have a hard time with that. I mean, our boy has 47 chromosomes, not 46. And I would have a hard time with the balance of praying that he would be healed and preparing myself for what we have in store for us with a baby who has Down syndrome. But Christ has performed miracles before and He could do it again.

So, for those of you who feel called to pray that either a) the lab test was wrong (statistics show 99.4% accuracy), or b) Jesus would perform a miracle and remove the extra 21st chromosome from our son's body... please do so. Mark is praying for that. I know others are too. I don't know if I'll get there. But I so appreciate your heart for our son.

Holland

I'm not sure if I'm allowed to cut and paste the article into my blog, so I'll just include a link to an article/poem/analogy/short story, called "Welcome to Holland." I think just about every parent I've "met" online who has a child with disabilities has referenced this story so I thought I'd share it with you, my friends, who are trying to understand how we feel right now. Speaking of which, I'll try to write more later.

Diagnosis confirmed

My first blog. I had always admired those who could do a blog for their children. I love catching up on friends' lives who live far from me; however, my motivation to do so myself just never kicked in. But maybe this is what I need right now... a way to "verbalize" my feelings and thoughts about what is going on in our lives.

The call came yesterday afternoon at 1:50pm. "Hello, Jennie, this is Dr. H. I have the results from your amniocentisis and I have bad news for you. Your baby has Down syndrome." Should he have phrased it like that? Shouldn't he have been encouraging? Maybe something like, "You might have some challenges ahead of you, but I know you can do this?" I guess he doesn't know that. How could he? WE don't even know we can do this. But at this stage of the game, it definitely seems like "bad news." I confess that my first thought was not T21 (Down syndrome)... REALLY bad news would have been T13 or T18, right? Those are both terminal.

A friend told me yesterday that she was "excited." I guess that's related to hearing about how God is going to use this child. Here's my problem: it's easy for her to be excited because it's not HER life that has been permanently radically altered. She won't have to explain to a 6-year-old boy why his little brother can't throw a baseball yet. Or explain to a 4-year-old boy why these random people come into the house to pay extra attention to his little brother in order to help him learn and talk. Or be the one people look at with pity in their eyes when they see a child with special needs walking through the mall with her.

When we found out 10 days ago that our little guy would need surgery soon after birth to open his duodenum, I didn't cry. I mean, I worried, and I still do. But I didn't have the flood of tears like I've had since 1:50pm on 10/12/07. I know the tears will diminish over time. I know this is just part of the grieving process. I feel his kicks and he could be just like any other baby in utero. But he isn't. He's different. And he always will be. I know I should use the word "special" and not the word "different." But aren't all children "special?"

I'll share more details about how we got to this stage in later posts. But for now, I can't think of anything else to say. "God works ALL THINGS together for good." It's in the Bible, so I know in my head that it's true. I have to find my faith to lean on that as truth.