Waiting for Lincoln

Last week brought an interesting change to this pregnancy. I had already been struggling with pelvic bone issues and having a lot of trouble getting around. I guess my bones were just a complete mess because scooting forward in the bathtub resulted in an injury to my tailbone. I heard and felt a loud crack/pop sound and it hurt quite a bit. I was okay until I tried to stand up to get out of the tub, and then I broke out into a sweat, got really dizzy, and thought I was going to vomit. Somehow I got myself to my bed. Thankfully Jason was already on his way home. I called the on-call OB for the first time during this pregnancy and he said I should go to the hospital to be admitted. Obviously, that's not an ideal thing when one has 2 other little ones to care for and a husband working to meet a big work deadline. So I asked the doc if there was anything else I could do. He said I could take pain meds, try to stay comfortable at home overnight, and then go to his office the next morning for an orthopedic eval. I hated so much to take the pain meds, as I've tried to avoid all meds with this pregnancy. BUT...I had to have them and the doc said it was safe. A pregnant mom being in a lot of pain isn't good for the baby.

Still unable to walk, I called the doc's office the next morning. A different doc was there and said there was nothing that could be done for a broken tailbone. He advised me to stay home on full bed rest and keep taking the pain meds. The nurse said, "Go to the hospital to be admitted if it gets 'too bad." Well....what is "too bad?" Not being able to walk? Not being able to go to the bathroom without help? Not being able to care for myself? Ughhh! I got reeealllly frustrated with different directions from different docs.

After a couple of days, the pain lessened and I was able to walk with my cane and walker, with the most painful thing being going from a sitting to standing position. But it no longer made me feel like passing out; it just hurt a lot. Jason was off work for Christmas and was great about bringing me meals and making sure I got to rest. What a husband I have!

Yesterday was my weekly checkup and ultrasound. I am almost 37 weeks along! Jason took me and helped get around while I was there. After sitting in the waiting room for an hour and 15 minutes (GRRRR!), I was finally called back. I was NOT happy, as sitting is very painful. I sat on my coat part of the time and stood up for a while also. I was in a lot of pain by the time I was taken back for ultrasound. Thankfully, Lincoln seems to be perfectly fine despite a major lack of movement for 2 days (may be due to the pain meds). He has turned and is HEAD-DOWN!!!! So, this means I can hopefully have a vaginal birth and avoid a return trip to the OR. My belly is measuring 38 weeks, and Lincoln is estimated to weigh 6 lbs. 10 oz. already! My amniotic fluid level is great, and that's a huge relief since this is the point at which it pretty much vanished while pregnant with Gabby. My blood pressure remains excellent and was 102/64.

After the ultrasound, we had to go back to the waiting room for another 15 minutes or so. Then, I was taken back to the exam room where I had to wait (with nothing but a sheet on from the waist down) for nearly 40 minutes! Sitting on an exam table with a tailbone injury is...very difficult. I stood up as much as I could, but the pressure from standing was making me nauseated and dizzy. FINALLY, I was seen. I made it pretty clear that I was in a lot of pain and the doc said I needed an orthopedic eval. She examined me and told me I am 1 CM dilated and 50% effaced. It's not much, but it's great for 36 weeks and means my body is gearing up for labor. Because of the pain and disability factor, the doc offered to check Lincoln's lungs via amnio for maturity and schedule an immediate c-section. I declined. I DO NOT want a repeat c-section. I realize my last one was made a little more complicated by all the stress of having a baby with lots of health issues in the NICU and worrying about her future. BUT, recovering from a c-section with all the orthopedic problems I have would be harder than recovering from a vaginal delivery. So, I am praying that Lincoln stays head-down and that my body does what it is supposed to since I cannot be induced. I may have to struggle through a couple more weeks of pain and immobility, but that's a small price to pay.

After my exam, I was sent over to the orthopedic doc and he did a physical exam. He said my tailbone may or may not be broken but probably is because of the crack/pop sound I heard. However, he did not feel comfortable doing a MRI or x-ray and said the only thing I can do is take pain meds and stay off my feet. He advised using a doughnut cushion for sitting, but sitting is painful, so I am not doing much of that. Right now, I am using a Boppy breastfeeding pillow to sit at my computer. It works fairly well. The doc said I may break my tailbone again during delivery, but it would not be paralyzing or anything like that. He advised that I get an epidural and not try to give birth naturally. I had hoped to do that this time since epidurals never really worked well for me anyway and they always ended up turning them off during labor.

Hopefully about 6 weeks after delivery, I can go back for a MRI and then start physical therapy to try to get my pelvic bones back to where they haven't been in over 8 years. I don't know how that is going to be possible since I'll have a baby that I cannot take to appointments, but I hope to figure it out and finally take care of this issue.

Please keep us in your prayers. It may be a long few weeks, and Jason cannot be off work due to his deadline coming up.

Baby Lincoln Update and More

I will be 33 weeks along on Friday. Yesterday, I had an ultrasound and doctor appt. Lincoln is estimated to weigh 4 lbs. and 12 oz. My huge baby belly is measuring 36.5 weeks. My fluid level was a little lower than last time, but it is still okay (YAY!). Little Mr. Lincoln is totally breech. Technically, he still has time to turn and get into the head-down position. But since I have SPD (symphysis pubis dysfunction...a separated pelvis), he is less likely to turn. I DO NOT want another c-section, but if Lincoln doesn't turn, there will be no alternative. The doctors will not attempt to turn a baby after the mother has had a c-section, especially a recent c-section.

My back/pelvic issues are worsening as Lincoln grows. By yesterday afternoon, I could not walk. My cane just wasn't helping. It's funny how much we take walking for granted until we can't do it. For a couple of months now, my mobility has been very limited. When that issue is added to needing to take care of a house and 2 children with some minor special needs, it's not a pretty picture. I cannot take the pain medicine that would help my back. While the girls are in school and that does help, I still have tutus to make and have to manage to take care of myself. Just getting to the bathroom is a challenge. Every step I take comes with pain - sometimes enough pain that I get tears in my eyes and feel nauseated. Most of the time, I can push through it. But sometimes my back just won't cooperate. When the girls are home, it is much harder. I daydream about having a housekeeper and someone to help with the girls. Ahhhhh...it's a nice dream.

The girls are going through a lot, and we're really struggling with trying to get them the help they need. We're not sure if Olivia's issues are due to concerns over having another baby in the home and worrying about losing him too or if she has something else wrong. I could write pages and pages about all the problems the girls are having, but instead I will just say that every day is extremely challenging. It's a continual struggle to get them the testing and treatment they need. I feel like I am pushing my head against a brick wall because of problems with insurance and other things. Lately, I've been realizing that Gabby's death affected them more than I thought. McKenna's anxiety is escalating, and I am doing everything I can to help her. I am worried about her physical health as well. She often goes from bouncing off the walls to being lethargic and saying, "I'm tired" over and over. She seems to shut down and we don't always know why. Tomorrow we're taking both girls to Louisville to a pediatric cardiologist. Due to some symptoms Olivia had as an infant and the chance of the girls having a congenital heart issue (because Gabby did and several other family members too), Gabby's cardiologist once recommended that we have both girls evaluated. I will not take them to Gabby's cardiologist in Lexington, for personal reasons, so we're heading to Louisville. When I spoke with the nurse there and told her about Gabby and our other family history of congenital heart defects, she said both girls will be having an echocardiogram. I hope this will simply be a precautionary measure that will result in a perfect cardiac report for both girls. The girls are naturally a little anxious about the appt. because of what Gabby went through. They went to some of Gabby's appointments and saw her having EKGs and echos. I cannot help but worry about how they might associate a trip to the cardiologist with a negative outcome. I have been using my best child development skills (thank you, college!) to find the necessary psychological approach to help ease their fears about their appointment. Please pray for my girls. They need lots and lots of prayers. And Jason and I need lots of prayers to help us parent them in a way that is best for them. I know their special needs are not major, but they are enough to affect every aspect of life for our entire family - a family that is grieving and dealing with a lot of other major life problems.

One year already

I can't believe it has been a year since Gabby left us to be in Heaven. On the 20th, we visited her grave and put some Christmas flowers there. As I stood on her grave and put my hand on my very pregnant tummy, I thought of what a bittersweet moment it was. Lincoln would probably not be on his way if not for Gabby's passing. I don't have to tell you what wide range of emotions that thought brings forth.

Today I received a note from an online "friend" on a message board. It read:

"Hi, I just wanted to say that I was thinking of you as 11/20 came and went. I am so, so sorry for your loss. We had a cardiology appointment on Thursday and because of your little Gabby, I went in there prepared with a long list of questions that I never would have known to ask if it weren't for you and Gabby. I asked about pulmonary hypertension and the severity of it in Maddy's case. I asked about a heart cath and whether we could have one. I am much more educated from reading your posts. I have also learned that the Down syndrome is so small, so insignificant, in the grand scheme because I know you would give anything to have Gabby (and her Ds) back. I look back on my posts from when we first found out that Maddy was coming with T21 and I am shocked that I ever thought the Ds diagnosis would change my love for her. Reading your posts makes me cherish what I have. Your baby girl is up in heaven helping us, even those she never knew, and I am forever grateful to Gabby. She has done a great service to us and many others on the board. Tonight I will give Maddy an extra hug and whisper in her ear "that one is for Gabby". Thank you for everything. Angela and Maddy"


It is notes like this one that help to keep me sharing Gabby's story despite the difficult emotions it causes me to face. If her story makes even a tiny bit of a difference, it is worth going through the pain of telling it over and over and even being ridiculed for it.


An update on Mr. Lincoln....

I had an OB appt. last week. I am due for another ultrasound to check fluid levels and everything else, but I'll have to wait until after Thanksgiving due to scheduling. I am measuring 2 weeks ahead, so I think Lincoln is still larger than average. His heart rate was high at my appt. (over 190), but I think he was just agitated from the nurse chasing him with the doppler. He was kicking a lot. His heart rate finally dropped to 160, and he seemed to calm down.

It isn't easy.

Some days, the online advocacy that I do can really take its toll. Every day I "talk" to women who are considering aborting their baby with Down syndrome. Some have already made their appointment for the procedure. That is really difficult for me hear about. I hear them give all sorts of reasons for making the choice they made. The most common reason I hear is, "It's my body and MY choice." I don't understand this. What about the body of the precious baby they are carrying inside? The abortion will affect that child more than anyone else, after all. Why doesn't the baby have the choice? And why would a mother give more value to her own life than the life of her child? Even if a person does not believe in God, doesn't this go against basic human instinct?

I also read about a lot of excuses for abortion. Often women say...

*I cannot handle a baby with special needs.
*Keeping him wouldn't be fair to my other children.
*We have a very busy life and just wouldn't have time for her.
*He would suffer and I am just doing what is best for him.
*I cannot afford to take care of a baby with special needs.
*I didn't choose this.


The excuses go on and on. They are all ridiculous in my opinion. NOBODY starts out equipped to handle a child with special needs. We are given the strength to do this a little at a time. And any extra expenses for children with special needs are most usually covered by some sort of assistance. Even for those who make too much to qualify, there are Medicaid waivers that can provide health coverage for those with Down syndrome. There are resources out there, but many people refuse to acknowledge that because it easier to say, "I just can't do it." And there is a waiting list of around 200 people in the US, ready to adopt a baby with Down syndrome. So if a woman truly believes she cannot handle it, there are others waiting to provide a loving home for her baby.

And what about siblings? Why is it "unfair" to them to have a brother or sister with Down syndrome? Do people really assume their child will be so uncaring as an adult that they would not want to care for their own brother or sister if it became necessary? Do people assume the child without Down syndrome has more of a right to life? How can a mother choose one of her children over another and then attempt to justify that choice? What will the surviving child say one day when he/she finds out a sibling was killed because the mother thought it would make the surviving child's life easier? Talk about burdens! That's a pretty big one to place on someone! Personally, I would be very angry if my mother told me she killed one of my siblings in order to give me a "normal" life.

Do people with Down syndrome suffer? Sure they do. But so does everyone else. Suffering is all around us, unfortunately. Even the healthiest of individuals can become critically ill at any moment and suffer great pain. I think many people have this idea that those with Down syndrome will suffer because they are different. I think that is an emotion that is projected onto those with Down syndrome by those who do not have bonus chromosomes. So many people think being different from the majority is some terrible affliction, but that idea seems to be born from a person's own fear of standing out.

In doing my advocacy, I share Gabby's story over and over. Most of the time, people are very receptive to it even if they do not think I made the right choice by not aborting. However, occasionally there is someone who feels the need to say very hurtful things. Just yesterday, a woman who does not know yet whether her unborn child has Down syndrome or not mocked my story of Gabby. She accused me of having an "agenda" and not caring about her because I had shared Gabby's story and given her some info about the Down syndrome adoption program in Ohio. The woman has fairly low odds for having a baby with Down syndrome, but she is behaving as though she has been given a positive diagnosis. She stated that she would abort if given a prenatal diagnosis. She went on to blame her doctor, saying her doctor was "like me" and had told her how wonderful it is to have a child with Down syndrome (of course the woman assumes this is a lie). The woman said the doctor had not been supportive of her need to find out quickly whether or not her baby has Down syndrome. So the woman is blaming her doctor for "forcing" her to make a decision (if she actually gets a DS diagnosis) about termination when she is almost 20 weeks along. Apparently, the woman views termination as "horrible" at this point in pregnancy, but she thinks it is totally fine when done earlier. I tried to provide the woman with some info that would clear up some of the concerns she had (the reasons for choosing abortion), but she was totally unreceptive and has obviously made up her mind. She is using excuses to justify her decision and hiding behind those excuses. While I DO care about this woman and her struggles, I also care about her unborn child. So perhaps I do have an "agenda" - one that includes advocating for the innocent baby she is carrying. The woman also stated that she did not want to miscarry if she was carrying a "healthy" baby. Apparently, she would be fine with miscarrying if her baby has DS. Many people online came to defend this woman and her choice. Unfortunately, nobody seemed to have any problem with her mocking me and the story of Gabby. Obviously, this woman has never lost a child and is apparently not seeking God's guidance in any way. I am very sad for her and for her child, and I will be praying for them both. It is very hard for me to be mocked in that way, but I cannot let it stop me. For every one person that says hurtful things and tunes out everything I have to say, there are at least a dozen who listen and appreciate hearing Gabby's story. I receive notes every week from women telling me how much Gabby's story helped them deal with either a possible or confirmed diagnosis. Some of them have actually changed their mind about abortion BECAUSE of Gabby's story. God is using Gabby's story to reach many people, and I feel blessed that He is using me as the storyteller.

Please continue to pray for me as I try to advocate on a daily basis. It most certainly isn't easy.

Halloween 2010

Despite some anxiety issues for McKenna, the girls had a great Halloween. McKenna dressed as a "Southern Belle" (Scarlett O'Hara to be exact), and Olivia dressed as Dorothy from The Wizard of Oz.

We went to a couple of churches' "trunk of treats." I was not able to get out and do any walking there, but Jason enjoyed taking the girls on their quest for candy. Of course, we also visited grandparents and a couple other relatives. McKenna wasn't feeling well and didn't get out at every place, so I stayed in the van with her. They are already making plans for next Halloween. :-)

Back in Business!

After a lot of thought and prayer, I have decided to reopen my Etsy shop. It is going to be very difficult right now, but I have to have faith that it will work out. When my shop was active a couple of years ago, I was working 40-50 hrs per week. I'd stay up till 3 AM (sometimes later) many days and then get up with the kids at 6:30 AM. I LOVED what I was doing, but it just got to be too much when I was pregnant with Gabby and we found out about her heart issues and Down syndrome. So I closed my shop, and I really missed it.

Now, even though I am supposed to be on modified bed rest, I am determined to find a way to sell a few tutus every week. I've checked into all sorts of other work-at-home jobs, but nothing turns out to be legit or as profitable as my Etsy shop. I most certainly won't make a fortune, but it might help to pay a bill here and there. I am going to need Jason's help with cutting the tulle. I may also have to sew in 5 minute increments because I cannot sit too long without aggravating my back and pelvic problems. And when that happens, even the cane doesn't help much. But I have to do SOMETHING to help out, so I guess this is it. I've already had a few sales since reopening!

Please keep us in your prayers, as I am so limited in what I can do right now and am not supposed to drive either. I go pick up the girls from school as much as possible, but thankfully that is a short trip. Jason is trying so hard to keep up with the house and most of the cooking, but he can only do so much. I feel soooooo guilty and just want to be back to our normal routines so that I can take care of my family!!! Most of Jason's time is spent working (some at home too), so he doesn't have much time to devote to the house. With 2 kids and 5 cats...well...you can imagine. But I keep reminding myself that all of this is worth it. Lincoln will be here in just about 14 weeks (maybe less!), and then my back pain will at least get back to the tolerable and functional point. Is it January yet????

Lincoln's Echo

On Wednesday we went for our 2nd attempt at a fetal echo of Lincoln's heart. This time, our little guy decided to let us get a good look at everything. His heart is PERFECT!!!! It took a long time for that to sink in and for me to believe it. Lincoln was fairly active during the scan, and we got to see him sucking his thumb, yawning, and sticking out his tongue. He is currently in a complete breech position, but there is still time for him to turn before delivery. I am 25 weeks along today! Lincoln's weight is excellent. He weighs almost 2 lbs. and is in the 60th percentile.

Because of my back problems and the contractions that seem to go along with the pain, I have been instructed to take it easy and limit my activities (especially driving). I was already doing this to some degree, but I have to be more careful. Because of my history of low amniotic fluid (oligohydramnios) with Gabby (causing her to be delivered at 36 weeks and maybe contributing to her lung issues), I will be having regular ultrasounds throughout the rest of the pregnancy to check fluid levels.

We are thrilled and so thankful for Lincoln's heart being free from defects. What an answer to so many prayers!

October is Down Syndrome Awareness month!

An online acquaintance of mine has been working on a very important project - a free ebook for expectant mothers with a prenatal Down syndrome diagnosis. As I know all too well, getting that diagnosis is very difficult. And there is a lack of resources available to women in such a position. Many of the resources that DO exist are outdated and geared toward those considering or planning termination of their pregnancy. This new ebook is very current and NOT for those who have chosen to terminate. My friend has worked with several medical professionals to come up with this ebook that will help women with a prenatal diagnosis make sense of everything and find the community resources they need.

Just in time for Down Syndrome Awareness month, the website where the ebook can be downloaded has been launched! I am so excited about this, as it is a resource I can pass along to the pregnant women I correspond with daily. Hopefully it will help many of them realize they are not alone in the community and that resources are available to help them through a difficult time. My friend, Nancy, was kind enough to ask for my opinion and feedback on some things and she included me in the "acknowledgments" on page 3. Later, more materials will be added to their resource library, and there will be a section on Down syndrome loss. Gabby and I will be included in that info. I also hope to pass this resource along to some medical professionals in KY that work with pregnant women.

Here is a link to the website where the book can easily be downloaded.

http://downsyndromepregnancy.org/

Autism?

Wow! So much going on. I have to remind myself to take a breath sometimes.

When McKenna was released from her IEP in 1st grade, we hoped she would not need one again. But as time went by, we saw that her issues were still impacting her on a daily basis. So last week, we had an ARC meeting with the school to discuss an evaluation for another IEP. While this breaks my heart, I am also pleased with the progress that was made.

McKenna was diagnosed with sensory processing disorder when she was very young. She was also diagnosed with ADHD a couple of years later. I admit that I have had moments of skepticism about her diagnoses, but something always brings me back to reality - like the way she struggles to look me in the eye or pushes me away when I try to hug her at night when I tuck her in. I see her walking on lines in a parking lot and it is hard to know it is not some sort of child's game but a desperate, uncontrollable need for her - often without regard to her own safety. I also feel helpless when I see her spending so much time lining up and organizing certain things. Even when she is exhausted and needs to sleep, she often cannot relax until she carefully arranges everything on her bed. This began when she was a toddler. She would spend 30 minutes arranging and rearranging her blankets before she'd even attempt to fall asleep. There are just so many other things too - things that may seem so small but have such a tremendous impact on every aspect of life for McKenna and for Jason and I. Some days are better than others.

For years, we have suspected Asperger syndrome and McKenna was unofficially diagnosed with it via a telephone conference with a leading local child psychologist a few years ago. Our pediatrician recommended an in-depth evaluation by the Weisskopf center in Louisville at the time. We tried to make that happen but found out insurance would not cover it. The evaluation is very thorough and involves several days of lengthy testing. The bill would have been VERY high. So, we could not proceed. Now, with a different insurance and also the suspicion of OCD by McKenna's current therapist, our insurance SHOULD cover most of the evaluation. We have discussed this with McKenna's pediatrician and are just waiting on her referral to a developmental pediatrician. Once we see the developmental ped., we should be able to get on the list for an eval. at the Weisskopf center. The current waiting list time is 8-9 MONTHS. So, this is going to take a while. But we are hopeful that a thorough eval. will help us know how to proceed with treatment.

In the meantime, the school will do their own evaluation and hopefully McKenna will once again have an IEP and be able to get the help that she needs at school. Academically she is doing very well. Her reading scores are in the 97th percentile overall (99th in many areas), and this is quite impressive since she is the youngest 3rd grader in her school. McKenna is also well-behaved and well-liked at school. But all of this does not come without struggle. In fact, her high scores may be yet another indicator of Asperger syndrome, as it is a "high-functioning" form of Autism. Hopefully the interventions that the school system is working on will help McKenna struggle less and enjoy school more. With all that we've had going on over the last year and a half, we have not been able to give McKenna's issues the attention they needed. We're trying now to make up for that and be sure that McKenna gets the treatments she needs. Watching her struggle isn't easy for us, so I can only imagine how it must be for McKenna.

Please keep McKenna in your prayers.

McKenna's 8th Birthday!

Today, my "baby" turns 8! It's hard to believe it has been 8 years since she was born. So much has happened in 8 years. The day McKenna was born was one of the happiest days of my life. She sure is growing up, but she's still my little "Pickle." That has been her nickname since she was very young.

On Saturday, we had a birthday party at MeMa and PePa's house. Several cousins and friends came to celebrate with McKenna. Some of the kiddos went fishing and also had a blast walking in the mud.

Stubborn Mr. Lincoln

It seems that our little Mr. Lincoln decided to hide yesterday when it was time for his fetal echo. He was in the tornado drill position, and it was just impossible to get a look at his heart. So instead of a fetal echo, we had a very thorough biophysical profile (a very detailed ultrasound that checks every piece and part). EVERYTHING else checks out perfectly. Mr. Lincoln had a nice strong heartbeat, but we just didn't get to see the heart. He is not nearly as active as my girls were in utero. He just seems to hang out and take it easy. My girls were always all over the place during ultrasounds. Not Lincoln.

In a little less than 3 weeks, we'll go back to attempt the fetal echo again. I'm a little disappointed that we didn't get to see his heart yesterday, but I am so glad to hear everything else looks great.

Please keep us in your prayers, as my back problems are worsening and I found out physical therapy isn't an option due to issues with insurance.

Baby Lincoln

We had our 20 week ultrasound today (20w5d). Baby Lincoln (yes, definitely a boy) seems to be perfectly healthy. I certainly took that somewhat for granted with my first two and with Gabby, up to the point where I heard, "Your baby has major heart defects." But at today's ultrasound, I took nothing for granted. I held my breath through the ultrasound and asked the tech about a million questions. God blessed us with a very compassionate tech who took her time and was extremely understanding of our situation. When I saw that perfect heart with four perfect chambers, I couldn't help but get tears in my eyes. Jason says the tech was almost crying as well, but I didn't notice. I was too fixated on watching my little boy and feeling just a bit of sadness that Gabby's heart didn't look that way here on Earth. But there is no time to dwell on sadness; we have been blessed in so many ways. Next week, we'll have a fetal echocardiogram just to take a very close look at the heart because of Lincoln's increased risks, but I am very optimistic about what that will show. It was so wonderful to be able to tell McKenna and Olivia that their baby brother's heart is healthy. They know the importance of that all too well.

Lincoln has no markers for Down syndrome. While some might think a pregnant mother would be happy about that, I have to say that I am neither happy nor sad. I am so fortunate to realize that Down syndrome is not something to fear or dread. The worth of a person is not measured in chromosomes. I would have been thrilled to welcome another beautiful baby with Down syndrome.

Today we bought Lincoln's "going home" outfit, and for the first time I was not scared of getting something for him. I'm not quite ready to convert Gabby's room yet, but I know it will be possible in time.

I will start physical therapy for my back very soon.

Made in His Image

Today I came across a blog post from an online acquaintance of mine, and I just wanted to share it. Susanna is a mother of 10, and her newest baby girl has Down syndrome and some of the same heart issues Gabby had. Her baby girl had her heart repaired and is doing well. When her daughter Verity was only 4 weeks old, Susanna wrote about her struggle with others' views of Down syndrome. Here is her beautiful blog post - a post that hits so very close to home for me:

"Since Verity was born four weeks ago, and came home from the hospital, she has spent most of her time abiding safely in her little home-nest. Her visitors have only added more love to her life.

She has not ventured out into the big world too much.

Several trips now to the clinic where her sweetness is admired. One to Grandpop’s birthday party where she finally got to meet the aunts and uncles and cousins who have accepted her as she is. A jaunt to the pediatric cardiologists’ office, then to the hospital, where she fit right in among other needy children and their caregivers.

My most painful fears when we heard about Verity’s Down syndrome were based on the rejection that our precious baby would receive from others. It hurt with a burning, stabbing pain to know that others would see her as a mistake. That they would look on her and despise her.

But I’ve seen very little of that in her first month. It’s easy to feel lulled to unreality while being cushioned in the safe zone. It’s not often that I am jolted back to the cold reality of that wide, wide world.

I did feel intense anger the night I watched Verity labor so hard to breathe, rage that there are bullies who have chosen to let their child’s heart defects go untreated because they have Down syndrome.

There was The Nurse With the ‘Tude, which may or may not have been related to Verity’s Down syndrome. But for the most part our sweetie has been surrounded by love and acceptance. The ache receded from my heart.

Now several encounters over the past few days have re-opened that bitter wound. And it turns out that the ugly lies are not all out there in the secular realm.

I’ve been jolted by the reality that many Christians still think about babies from the world’s perspective. They accept the world’s terms. When they say a child is perfect, they do not mean, “Fearfully and wonderfully made, period.” They mean, “Photogenic, gifted, easy, no extra needs.” Their words betray their true beliefs.

I was forced to face the fact that some of my Christian sisters pray against having a child like mine. That many of them think, “Yay! We got a PERFECT, BEAUTIFUL child who is SHARP AS A TACK, and not the kind you got!” And that their baby born without special needs is a miracle, but my baby with Down syndrome is what? Not a miracle, I guess, huh? They do not want a baby who needs more of them than they want to give.

I’m realizing the hardest part for me about the Down syndrome thing is this–other people’s rejection. Other than that, what is the big ‘ol hairy, scary deal? Really. A child who looks different and learns differently. So? For a home educating mother of many, this looks like an opportunity for learning something valuable that we wouldn’t otherwise learn.

But now I know that there are Christians who think about my needy child as though she was a burden to bear, a tragedy, a sad circumstance, a hardship, a bitter cup to drink, a disaster on a level with a house fire or a severe drought or a bank failure. That’s why it hurts inside of me, a mother whose soft, fragrant wee girlie is a human being made in God’s image, when she is discussed as though she were a tragic thing.

Some would tell me, “Woman, grow a tougher skin. There are plenty of people around who will accept and love your baby. Focus on the positive and let those other people be wrong if they want to be. They don’t know what they’re missing.”

That may work for some. And some may not struggle right at this spot where I am. They may hurt for other reasons, or not hurt at all.

But that isn’t the way God designed me to function. And this is the pain He has allowed me to feel. I cannot just ignore the negatives. I have to do something with them, find out where they fit with the truth that God has revealed in His Word. What is the truth that will counteract these lies? I don’t want to grow tougher. I want to know what is the godly and gracious way to respond, both to the wrenching hurt inside of me, and outwardly, toward those who are deceived?

“Then a dispute arose among them as to which of them would be the greatest. And Jesus, perceiving the thought of their heart, took a little child and set him by Him and said to them, ‘Whoever receives this little child in My name receives Me; and whoever receives Me receives Him who sent Me. For He who is least among you all will be greatest.’”

I had always pictured this scene as Jesus with a typical kid on His lap. I had never pictured Him with a child who has a face that proclaims her special needs to the world. A face that will never be acceptable to some people, no matter what pretty hair bow she wears on top.

What does it look like in real life to receive Jesus? Photogenic social acceptability?

“He has no form or comeliness; and when we see Him, there is no beauty that we should desire Him. He is despised and rejected by men, a Man of sorrows, and acquainted with grief. And we hid, as it were, our faces from Him; He was despised, and we did not esteem Him.”

So to receive Jesus, we must be willing to receive one who is despised. We must be willing to receive one who will suffer rejection, who will not be esteemed.

“Therefore Jesus also, that He might sanctify the people with His own blood, suffered outside the gate. Therefore let us go forth to Him, outside the camp, bearing His reproach.”

Jesus, we love You. We welcome You. If this is where You are, then this is where we want to be, too.

And oh yes…for those who do the despising…

“Father, forgive them, for they know not what they do.”

20 weeks! Half-way there!

I can't believe I'm already half-way through this pregnancy. It is going so fast. Little Lincoln is kicking and rolling around in there and has had hiccups a few times. The girls are already making big plans for him and talking about what they're going to teach him. They enjoy talking to my tummy, especially McKenna.

Next week (Wednesday) I will be having my 20 week ultrasound. It is just a regular scan in which they will look closely at all of Lincoln's organs, systems, etc. I know they will be looking closely at the heart. Since Gabby also had a submucous cleft palatte and the chances for Lincoln to have a palatte issue are quite high as a result, they will also be checking that. We are hoping and praying for a wonderful ultrasound with no health concerns found.

In a few more weeks, I should be having my first fetal echo with Lincoln to take a very close look at the heart. Beyond that, I will probably be monitored a little more closely because of my history of placental failure and extremely low amniotic fluid. Since Gabby was a preemie and was transverse, that also adds a few red flags. And I had a c-section only 13 mos. ago, so that is a concern. But at this point, checking for all these things is just a precaution based on probability.

This pregnancy continues to be very hard, physically and emotionally. I am hoping to start physical therapy for my back soon. I am getting to that point where I will need the cane many days, and I am hoping to keep it from getting as bad as it has in the past. When I was pregnant with Gabby, there was so much going on that physical therapy wasn't an option. This time, it should be possible. It helped a little when I was pregnant with Olivia, so I'm hoping for the same results this time. Not being able to get around, bend, or lift is just not very convenient when trying to take care of the girls and get housework done.

Included

Recently, McKenna was doing some drawing. She LOVES to draw. She starting tearing off small pieces of paper from the pad. I asked her what she was doing and she said she was going to draw a picture for each person in our family. Later, I came back to find her little papers scattered on the table. Each one had a name at the top - "Mommy", "Daddy", "McKenna", "Olivia", "Gabby", and "Lincoln."

It warmed my heart to see that she still includes Gabby in our family, and I think she always will. She had such a short time with her, but I think it was long enough for her to feel like Gabby will always be her sister - just a sister that happens to live in Heaven. I also thought it was sweet that she made a picture for Lincoln. It truly made me think about how my girls have learned that a person has more value than what can be seen in the form of a human body. They have discovered that the true worth of a person revolves not around what can be seen but around what can be felt in one's heart.

"I know how you feel."

Perhaps my hormones are getting the better of me today. Or maybe it's just stress. I don't know. Either way, I'm just a little more than irritated by hearing someone tell me they know how I feel. Some people say, "I know just what you're going through because I too lost a child." And almost every time I hear that, it is from someone who had a miscarriage at 6 weeks, 8 weeks, 12 weeks, etc. THAT IS NOT THE SAME as losing Gabby! I also have people tell me they understand because their child was stillborn. But again, it is NOT the same as taking home a child and caring for her for almost 4.5 MONTHS. There are so many memories that I must also grieve...not just the loss of my child. I completely understand that a miscarriage and a stillbirth are horrible. I am NOT trying to say those things mean nothing. They are tragic forms of loss and those who experience those types of loss are truly hurting. However, it just isn't the same as losing an older infant or child.

I also recognize that my loss is probably not as hard to handle as losing a toddler or older child - after parenting that child for such a long time. I do not pretend to understand what that is like even though I can relate in some ways.

I suppose anger is a normal part of the grieving process. I just don't like it very much. :-) Perhaps with time and lots of prayers, this will get easier.

What's it like?

Since announcing my pregnancy, I've had lots of people ask me how I'm doing. Now, sometimes this is just a polite question about how the pregnancy is going, physically. But many times, people are concerned about my emotional state as well. They realize this pregnancy is a little different from the typical pregnancy. So I just thought I'd write a little about what it is like to be pregnant after losing an infant child and how different it is from my previous pregnancies.

* I always feel a bit surprised to hear the baby's heartbeat or see him on the ultrasound screen. It's as if my brain is telling me to be ready for the worst. I go into appointments expecting to hear bad news and have someone tell me my baby is no longer living. I know. That sounds awful, but it is very true. I miss the days when I would go to every prenatal appointment assuming everything was just fine. That doesn't happen anymore. When I see that things ARE okay, it's almost a shock to my system.

* I find myself feeling guilty when I plan for the future. When I think about my baby as a toddler or young child, an overwhelming feeling of shame comes over me. How dare I think so far ahead when nobody is guaranteed their next breath? How could I possibly be so naive as to think my baby will actually make it beyond infancy. Gabby didn't! So, why should this be any different? It feels as though thinking of this baby's future is ignoring what is a very real fact to me - babies die.

* When my girls talk about their baby brother and all the things they will do with him, I hesitate to discuss it with them. Yes, there are still times when they say things like, "If he lives long enough, we will...." But other times, they make plans as if everything will be just fine. And while I know in my heart it very well may be, my mind keeps me from allowing myself to give my girls what may be a false sense of security. I suppose it is my mind's way of protecting them from going through another loss like they've already been through.

* I find myself in a continual state of emotional conflict. I feel both horrific grief and immense joy at the same time, and it is perhaps one of the most confusing states a person can experience. The emotions are so far away from one another that their influence on me leaves me feeling like I am being dragged in two different directions.


You may be wondering why we even attempted to get pregnant so soon if I had any idea these feelings would surface. First of all, there is no way of understanding what this experience is like until a person goes through it for themselves. I did not know what it would be like - only that it would be difficult. Secondly, we never anticipated getting pregnant so soon. Our attempts to conceive have always been measured in years, so I certainly never dreamed it would take only 5 months this time! Had it taken a year or more, I would probably be better prepared to face these emotions. However, I do believe God knew exactly what He was doing by blessing us with this baby. And I also know He will get us through this pregnancy and even the most difficult emotions that go with it. In fact, this pregnancy may be helping to heal us even if we do not realize it.

Our Littlest Heroes photo session!

We were recently blessed to work with a very talented and compassionate photographer. Katie Lou Blanton is a local professional photographer. Being a mother of three herself, she has a great ability for working with little ones. We are so glad that we found Katie via the Littlest Heroes project and so grateful that she is committed to working with families served by the charity. She was kind enough to bring balloons for the girls and one for them to release for Gabby. Very thoughtful!

Our pictures are beautiful and I finally feel like I have a family photo that includes Gabby. I cannot even express what that means to me. Actually, I guess it's a photo of the six of us, since little Lincoln was there too. :-) Katie Lou has a sneak peek of our photos on her blog, and I just wanted to share the link here. I am so proud of these photos. Sometime in the near future, at least one of the pics will be on the Littlest Heroes website. Thanks Katie, and thanks Littlest Heroes for helping bring some joy to a very fragile family.

http://katielousphoto.blogspot.com/2010/08/blessings-ky-family-photographer.html

Boy, oh BOY!

Well our ultrasound showed a little something extra this time. :-) Yep. It's a boy! Lincoln Scott Merrick should be arriving in January. In addition to getting that news, I caught a glimpse of Lincoln's heart. I saw four distinct chambers - something we never saw in Gabby's heart. It was bittersweet to see that image, and I required some tissues after the ultrasound. Of course, we won't really know anything definitive until we have a fetal echocardiogram around 22 weeks. But so far, things look great.

McKenna and Olivia are thrilled. They say, "We have too many girls." So a little brother was just what they wanted. For me, I would have truly been thrilled either way. I didn't have a preference. In a way, I wanted a girl because I LOST a girl. But...I also wanted a boy since I have never had one. I just prayed a lot and figured God would give me just what I needed. He always has.

Little Lincoln was squirmy in there but not overly active. I'm hoping secretly that he may be a little more calm than his sisters. ;-)

First day of school!

Where did the summer go? Olivia started kindergarten today. She was so excited but also apprehensive. McKenna started 3rd grade. They both had a great day. My girls are growing up so fast!

So many questions

I often read about other babies with the same or similar heart defects as what Gabby had. And more and more often, I am seeing some major differences in the way their care is handled as compared to how Gabby's was handled. It is so hard to find out so much is being done for those babies that was never done for Gabby. They had testing that she never had, testing that gives the doctors a better idea of how their lungs are doing and helps them decide whether or not the baby can safely have surgery. Gabby didn't have those tests and her lungs were the cause of her death. They were in HORRIBLE shape, and nobody knew???? That just doesn't make any sense to me.

I recently talked with one mother who has a young infant with Down syndrome and the same heart issues Gabby had. Since the little boy has developed pulmonary hypertension (as Gabby did), the doctors are going to do a heart cath to determine the exact pressures in his lungs. They will then decide if his pulmonary hypertension needs more aggressive treatment so that he can go into surgery with a lesser case of it and a greater chance for a complication-free surgery. Gabby's doctors knew she had pulmonary hypertension. Yet, nothing was ever mentioned about a heart cath or waiting to get her pulmonary hypertension under control before surgery. Many babies with Gabby's same health issues are also put on a feeding tube in order to help them gain weight faster and overcome the feeding obstacles that go along with Down syndrome and heart defects. Not only did Gabby have those feeding obstacles, she also had a submucous cleft palate. That made it even harder for her to eat. There were weeks when she lost weight (totally NOT okay for a young infant). And some weeks, she gained only 1-2 oz in the entire week (rather than the typical 1 oz per DAY that babies that age should gain). Multiple times, I asked the docs if a feeding tube would be a good idea. Multiple times, I was told Gabby did not need it. So it is hard when I see that other babies ARE getting feeding tubes, even babies who are larger and gaining weight faster than Gabby did. Why are those babies getting the tubes? According to their mothers, the doctors want them to gain weight at a typical rate so they can be ready for their open-heart surgery BEFORE pulmonary hypertension develops. WHY didn't Gabby get a tube? She was only 6 lbs at birth and had only reached 8 lbs 6oz by 4 months of age. That is NOT an acceptable weight gain for an infant! So why were we told over and over that she didn't need a feeding tube? Again, it makes no sense.

I could go on and on about this topic, but I won't. I'll just say that I am continually upset by the care that Gabby was not given. I am certainly no doctor, but I can compare apples with apples and easily notice when one apple doesn't look the same. Please pray for me as I struggle to understand this and figure out how to deal with this information. Losing a child is hard enough, but finding out that their death may have been the result of someone's mistakes just adds a whole new level to the pain.

The pain of advocacy

Today has been emotionally challenging. Why? I've met quite a bit of opposition in my attempts to advocate for babies/children/individuals with Down syndrome.

First, I posted online about the movement to stop the use of the "R" word (www.r-word.org). Many people argued and defended their "right" to use the word, saying that people should "think things through before being offended." Despite my explaining to them that the word can be very hurtful to many people, they seemed more concerned with their rights to use whatever language they choose.

Next, I read something one woman wrote. She said, in so many words, that choosing to abort a baby with some sort of prenatal diagnosis (Down syndrome, etc.) was no different than choosing to discontinue life support on a dying baby. As you can imagine, this comment made my blood pressure rise a bit. How can anyone truly believe those two things are the same?

Finally, I came across something written by a young pregnant mother that I "know" online. She had prenatal testing that showed an increased chance of her baby having Down syndrome. I shared my story (Gabby's story) with her. I told her how God had worked through Gabby and how He had given her to me - a miracle in every way. This woman seemed open to the idea of learning more about Down syndrome. So I helped her with info and pointed her in the right direction. Then, today I see that she had diagnostic testing done and got a confirmed Down syndrome diagnosis. She has chosen to abort her baby because she doesn't want to bring a "sick" and "suffering" child into this world. She has no idea whether or not her child has any actual health problems (too early in the pregnancy to tell), but she assumes there WILL be problems that will make the child "suffer." So she's made the choice to end the child's life. This is soooooo hard for me to comprehend. And it is hard for me to see others giving her a virtual pat on the back and telling her what a wonderful thing she is doing for her child and how she must be an incredibly strong woman to make such a difficult but "necessary" decision and "save" her poor baby from a horrible life.

Yes, it has been a hard day. Some days I just want to give up this advocacy thing and tune it all out, pretending all is well. But I cannot. I will not. God wants me to do this, and so I will.

Ouch!

I'm 14 weeks along today and just wishing I could borrow someone's back for a few more months. Degenerative disk disease, arthritis, sciatica, fibromyalgia, and symphysis pubis dysfunction combined with pregnancy just makes for a reallllly aching back. Ouch! When every joint is aching and burning too, well....it adds some difficulty to getting things done. Just lifting a laundry basket can be hard, but chores have to be done. So I try to ignore the pain and have kind of gotten used to it being there most of the time. I don't really remember what it was like NOT to have pain. I guess I can't really complain. This baby is a miracle and answer to so many prayers (well, they all are). I'll take any ache or pain that comes my way. :-)

Morning sickness is getting a little better. I found out my prenatal vitamins were making my hiatal hernia symptoms (GERD, etc.) worse, so I switched to a different kind. That's helping. I'm still down 14 lbs from where I started, but I'm sure it will come back soon enough. I'm hoping I can lose a few more lbs before I start gaining.

I have not felt any baby movements. I keep reading stories of other women feeling movements this early, especially with multiple pregnancies under their belt. I don't expect to feel anything for a few more weeks.

We will be finding out the gender of the baby on Aug. 7th. I am so anxious! The girls and I think it's a boy. Jason isn't making a guess. I have many reasons for hoping for a boy, but I also have many reasons for wanting another girl. We'll see!

Joe and Cassie's Wedding

Big brother, Joe, got married on Saturday, July 17th. The wedding was at Mom and Dad's house and was just beautiful. The girls were so thrilled to be a part of the special day and so happy to see cousin Savannah (me too!). I made the bouquets (yes, this is a shameless brag) and thought they turned out great. McKenna seemed to be unable to open her eyes for a pic that day, but the pic of the girls with "Aunt Cassie" is cute anyway. Congrats Joe and Cassie!

Being a SAHM

Lately, I've been thinking a lot about what it means to me to be a "stay-at-home-mom (SAHM)." Before Jason and I ever got married, we had an agreement. We agreed that I would be a full-time SAHM and he would work outside the home. My Bachelor's degree is in Family Studies with an emphasis in child development. So while in college and just after college, I worked in many different childcare settings. What I experienced during those times just helped to solidify the decision Jason and I had made. I realize that there are some daycare/childcare settings that are great, but I also realize those are hard to find. I saw some very sad things while working in childcare - things I would NEVER want my children to experience. And having the educational background I had, I knew that those things could permanently damage a child. I wanted no part of it and knew God wanted me to be a SAHM. Had I chosen to work outside the home, our girls would have been in daycare. We have no option of a family member being the caretaker, and we would have both had M-F daytime work schedules. Daycare would have been our only option.

When we were finally able to have our first child, I quickly realized how difficult my new "job" was. McKenna's sensory issues (and possible Autism) were obvious from the beginning. She struggled when we tried to cradle her. She rarely made eye contact. She screamed and cried much of the time and would not go to sleep before 2-4 AM most nights. Then she was awake about every 30 minutes to nurse. For the first 4-5 months of her life, we got very little sleep. She also resisted napping, so there was no "nap when your baby naps" for me during the day. I was exhausted from the lack of sleep and from her almost constant need to nurse. We finally learned she had reflux issues and got her on meds for that. That helped a little. Finally, around 12 mos of age, she slept through the night for the first time. But she didn't do it consistently after that. It was hit and miss. By about 6-7 mos of age, she was down to one nap per day, and it wasn't a very long nap (30 minutes maybe). By 24 mos, she stopped napping completely.

With all of McKenna's issues, I had a really hard time in my new role as SAHM. And my own health problems didn't help things. Olivia had some similar issues when she was a baby, though they were not as severe as McKenna's. She too resisted sleep and because of oral aversions, she would not take a bottle until almost a year old. So even though I was exhausted and would have loved for Jason to be able to do some of the nighttime feedings, he couldn't.

There have been many days when I wished I could have gone to a job outside the home. Then maybe I would have had a lunch break. I could have actually sat down to eat without anyone climbing on me and without having to stop in the middle of my meal to clean up someone's bodily fluid. Maybe I could have gone to the bathroom when I needed to or at least without any children pounding on the door and crying for me to hurry up. Maybe I would have had more adult conversations. Maybe I would have brought home a paycheck and received a Christmas bonus. Maybe we could actually have vehicles that aren't falling apart. Maybe we could take vacations and weekend trips. Maybe I wouldn't still be wearing shirts that are 8-9 years old. Maybe we'd live in a house with more room, where we're not tripping over each other. Maybe we would buy our children new clothes rather than getting hand-me-downs and yard sale specials. Maybe..... But are all those things really necessary? Nope. Nobody really needs "new" clothes or vehicles, vacations, big houses, etc. When I have days when I think about those things and how nice they would be, I remember what I am getting instead. My girls know I am always here for them. If they are sick and need to be picked up from school, mommy is there in a flash. After school, mommy is here to help with homework and talk to them about their day. I never miss a parent/teacher conference. I go to school for special events. And when they are home from school, I am here to spend the day with them. We do crafts. We work on their academics when they want to. We read books together. We work puzzles and play board games. We eat our meals together. We work on their sensory problems. Yes, I know those things may sound somewhat unimportant, but I assure you they have a great impact on the girls. If Jason and I were both working, I would not be doing those things with my girls every day, and THAT would also have a major impact - in a negative way.

Please don't think I am against moms working outside the home. There are situations in which both parents can work outside the home and manage to have differing schedules so that they can still be the caregivers for their children on a daily basis. In some families, a grandparent is able to provide daily care that is a very close second to parental care. And in other situations, there may be an excellent childcare provider involved. Those situations can work beautifully, but those things are not options for us. I worked outside the home before having children. I remember how stressful it can be, and I have great respect for moms who are able to juggle both worlds. I also know that being a SAHM has been the hardest job I've ever had. Not only are there no breaks or monetary compensation, but the job comes with very little respect. So often I hear people say, "Oh, you 'just' stay at home with the kids?" There are no evaluations or performance awards. Many times people seem to view being a SAHM as less important than having a job outside the home. Lots of people fail to understand the long-term value and massive positive impact that the job has on the children and society in general. Some think the SAHM is avoiding "real" work and they fail to see her choice as a valid career choice. While moms that work outside the home are often patted on the back for their accomplishments, I don't think I've ever heard someone say to a SAHM, "Your kids are doing so well. You are a hard-working SAHM and are doing a wonderful job!" People often discuss occupational happenings with moms who work outside the home - what days/times they work, what things they encounter at work, their plans for more education or promotions. But I never hear, "So, how was your day, SAHM? What lessons did you teach your children today? Wow, I bet you were worn out from 14 hours alone with your little ones while YOU were sick! And you start at 6 AM tomorrow too? How many times did little Timmy vomit today? How many times was Susie awake during the night? How did she do on her behavior chart today? How was her therapy session?" Those things just don't get asked.

I just want to say that even though my health makes being a SAHM the best option for a variety of reasons, I would still make this choice even under different circumstances. For us, I believe it is the right choice. Yes, this past year has been the hardest and there have been many expenses that no parent should ever have to worry about. We have had to make some very difficult decisions that might have been avoided if our income was greater, the economy was better, or the unthinkable had not been a reality. But I still believe God wants me at home with my children. When I think about Gabby and think about what I would have missed if she had been in daycare (although that wasn't an option because of her susceptibility to heart infections), I just want to cry. I could have missed out on most of her life. And I know my girls' sensory issues would be far worse had it not been for the research I've done, the therapy sessions, and the time I've taken to learn how to help them manage their issues. I know of no daycare within 100 miles that would have taken the time to treat their needs with the care they required. So, while I have my days when I wish for the recognition and material things that mothers who work outside the home so often are able to acquire, I look at my girls and quickly remember that I'm doing what is right for me, my girls, and my family. And there is not a new car, house, or vacation anywhere in the world that I would trade for that.

Happy 1st birthday in Heaven, Gabby!

One year ago today, my life changed for the better. A beautiful little bundle of joy was given to me. Yes, she had challenges to face. Yes, she was a little "different" from other babies. But she was MY baby - soft, warm, cuddly, and wonderful. I was one very proud momma with a very proud husband and 2 very proud big sisters. Gabby was to be the final piece to the puzzle that is our family. And I was ready to be her advocate for many, many years.

Life changed on November 20, 2009 also. God decided Gabby was needed in Heaven and He took her home. Though I cannot truly understand, I am at peace with giving her back to Him and know she is in the best place any baby/child/adult could ever be. I have no doubt that in some way, today, she is celebrating her birthday up there with the angels and all the other little ones who are with her.

Happy birthday, sweet girl. Mommy loves you and misses you so much. But one day, I'll be there with you and we can celebrate many more birthdays together. These tears that are streaming down my face will be gone, and happiness will be all we ever know. Thank you, Gabby, for all you taught me and so many others.


In loving memory...

Gabrielle "Gabby" Rae

7-11-09 to 11-20-09

12 weeks!

I am 12 weeks along today. Soon, the 2nd trimester will begin. I am praying it will come with less nausea and fatigue. I have been pretty sick with baby #4. I've lost over 12 lbs now.

This week, I had my nuchal translucency scan (NT scan). It's an ultrasound in which the tech measures the fluid on the back of the baby's neck. In babies with chromosomal or other issues, the measurement can often be quite high. I never had this test done with any of my other babies because I know it is not always reliable. However, I am curious about the results of these screenings this time around, so I chose to do the test. And of course, the doctors are recommending every test imaginable. The baby's measurement was within the "typical" range. While some might think this would be a major relief to someone with automatic 1:100 odds for having another baby with Down syndrome, I did not feel relief. It is hard for the doctors to understand, but having another baby with DS would be fine with me. In a way, I am even saddened to think this baby might NOT have DS. I was so ready to be there for Gabby for as long as she needed me. DS was a part of her. Without it, she would not have been Gabby. So, it was something I loved about her. However, the heart defects DO worry me, and knowing this baby has quite a high risk makes me uneasy. So far, the heart has looked wonderful. But it is way too soon to tell whether or not there are any defects. We won't know much until we have our first fetal echo, around 22 weeks.

The 2nd part of the screening test in which the nuchal thickness is measured is a blood test. I will not have those results for several more days.

Visiting Uncle Joe

The girls and I (along with Mom and Dad) had a great time visiting "Uncle Joe" where he works in management at Buckhorn Lake State Resort Park. The girls loved the pool and the beach, but I think the beach was their favorite. McKenna LOVES sand. The girls got to roast marshmallows and enjoyed seeing some local wildlife. Olivia missed her daddy, but I think Daddy enjoyed having a little break. Thanks, "Uncle Joe", for having us.

10 weeks and growing!

I saw the doc this week and had my 2nd ultrasound. Baby Merrick is growing well (yay!). I was measuring a couple of days ahead (wonderful!) and the heartbeat was nice and strong at 169 beats per minute. Baby was moving around just a little. I will go for my next ultrasound on July 6th (11 days from now and yes I am counting the days!). I'm 10 weeks along today. Physically, I feel terrible, but I'm hanging in there and looking forward to January.

The girls are still trying to get over their tonsillectomies. Olivia has been fighting off bronchitis during her recovery, so it's been a little harder on her. She has also been waking up multiple times each night since the day of the procedure. We're not sure why. Hopefully in a few more days, they'll be back to "normal." And we're praying that Olivia's wakings are not an indication that she's returning to her old ways. It's only been about a year that she's been consistently sleeping through the night.

Olivia had her first therapy session yesterday, and McKenna saw the doc as well. They both have "homework" and are excited about that. The doctor asked me a multitude of questions yesterday, as we're getting closer to formal testing for McKenna.

Making a difference!

I spend a lot of time advocating for babies and children with Down syndrome and congenital heart defects. Recently, on a popular website forum, a woman wrote about how she would terminate her pregnancy if she received a Down syndrome diagnosis. Her reasoning was that she and her husband work full time and also love to travel. She said it would be too "overwhelming" for them to care for a child with special needs. When I started reading through the responses, I almost cried. People were responding to her by quoting me. Many of them had read Gabby's story and my many posts about Down syndrome and prenatal testing. They were telling the woman about Gabby and about what a blessing Gabby had been to so many people. They were also telling how they'd learned about prenatal testing from the info I'd shared. Many of their misconceptions had been clarified. I got chills as I read over the responses. It is quite amazing to see God take the seeds one plants and make them grow into something beautiful. I wasn't sure if the things I'd written had even registered with some of these women. Now, I know. I even had one woman who sent me a message last week in response to reading Gabby's story. She wrote:


"It impacted me in a way that I have never thought of the whole "I'd rather have her for a while than not at all" thing. My husband and I always discussed that if a child can't have a fulfilling life due to DS or anything like that, we would terminate the pregnancy. After hearing your story, i don't honestly think I could do it. My husband said something about how it isn't fair to the child, which, sure, I understand, but it's not fair to not give them a chance at ANY life because of the fear of taking responsibility for the life with or without complications. Little Gabby didn't know she was any different, and she enjoyed life just as any other child would. You are such a strong woman, and Gabby really has made a difference. Gabby has made me really question if it would be right to terminate a pregnancy based on something the child couldn't control. it just doesn't seem fair to me. Thank you so much for sharing your story; I never thought it would impact me the way it has. It makes me wonder "what if" and I don't think i will opt for the pre-screenings that my doc has offered...I don't think it would make a difference in my decision and no matter what, i would never love my child any less because of something like that; I would love them MORE. Children with needs like that NEED all the love in the world. Again, thank you so much. "


Advocating isn't an easy thing to do. On a daily basis, I encounter women who have or are getting ready to abort their baby because of Down syndrome. It rips my heart into shreds. One woman even told me that I had made Gabby suffer since I did not abort her while I was pregnant. Encounters where I hear things like that make me physically sick. But if I avoid those encounters, I also avoid a chance to make a difference. So, I rely on God to help me stomach the heartbreaking stories and continue sharing what He has given me to share. Gabby, we ARE making a difference, baby girl.

First EVER family vacation!

A couple of weeks ago, we took our long-awaited trip to Ohio. We had never been on any kind of family trip (not even for a weekend) or vacation. Jason and I haven't even been on a trip in the last 10 years. But being a stay-at-home-mom comes with some trade-offs. Our girls had been SO excited about staying in a hotel and swimming in the pool when Gabby was having her surgery. The Campbell House in Lex. had given us a very low medical rate because of the circumstances, so we were thrilled that the girls might get to visit us and do something they'd never done before. But since things didn't work out that way, we reeeeallly wanted to make it up to them by taking them to stay in a hotel. And we also took them to King's Island! They LOVED the hotel pool. The wave pool at King's Island was another favorite, as they'd never been to a water park before. McKenna had a bit of a rough time and wouldn't really ride anything (sensory issues with vestibular input), but she ADORED the water park area and would have stayed there all day. Olivia is a bit more of a risk taker and probably would have ridden the big coasters if she'd been tall enough. She and her Daddy enjoyed riding "The Flying Ace" in the kids' section. It's quite a coaster for a little one (your feet hang down), and Liv was JUST tall enough to ride. She loved it! Here are some pics from the trip!