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!