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.