Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Sunday, January 29, 2012

For This Child I Prayed

We are so blessed to have such an awesome church family. We go to a "megachurch" but I've never really felt like it's too big.

Every time we check our son Ryan into the kids program on Sunday morning we have multiple people ask how my pregnancy is going and tell us they are praying for us and our baby girl. It is very encouraging! So many people are waiting to meet Lauren, I can't wait to bring her to church for the first time! I'll even admit, I have had her first church outfit picked out since the day after we found out she was for sure a girl!

There's one man in particular that we always chat with a little bit, he's friends with my husbands parents and is the uncle of a good friend. The past few times we've checked Ryan into the kids program he says, "Thanks for growing the church!"

This may not seem like a huge deal to you, but it is a big deal to me. It really is. It shows me that Lauren is already an accepted and valued member of our church family and our community. It shows me that she is already loved by so many people. We are blessed. Thoughtful comments like this are a salve on the wounds of comments that are not so thoughtful or kind.

When we first found out that Lauren has Down syndrome we couldn't help but think of all the things we thought she would never accomplish and could never do. Now that we've had time to educate ourselves and fall even more in love with our daugther we realize that there are so many more things that she CAN accomplish and CAN do! We were placing limitations on a person we'd never even met. Isn't that crazy?

It's just really nice to hear that so many people are praying for our daughter and anxiously awaiting her arrival. She is the answer to our prayers.

"For this child I prayed, and the Lord has granted me my petition which I asked of Him" 1 Samuel 1:27

Monday, January 23, 2012

Any bets on a birthday?

I've been having contractions on and off all week.

Last night I woke up around 1am with some pretty painful contractions. I finally decided to time them and lo and behold they were 3-5 minutes apart for a good two hours! I have about 3 and a half weeks to go until my scheduled C section so I didn't want to jump the gun and call my doctor. Also, I didn't want to get sent to the hospital and then get sent home since my husband has to work all day. (This happened with our first and it was a pain in the butt!) Finally they got less strong and I was able to sleep from about 4:30-7am.

I woke up at 7 with more contractions. A hot shower helped a lot...until I was standing up to dry my hair and get ready. I had a doctor's appointment at 11:30am. How did I forget that contractions hurt so bad?!

I was having contractions about 3-5 minutes apart at my appointment today. My OB checked me again and has basically said labor could happen at any time and they won't stop it! He also said that for some reason, babies with Down syndrome tend to be born a few weeks early. Researchers don't have a concrete reason why, just that it's quite common and preterm labor is a risk. It's not a guarantee, but it's a risk. So we'll see what happens. The great thing is that Lauren's heart looked great on the monitors today! I did lose weight again, which stresses me out since she's already small. But last time that happened her growth actually jumped pretty good! Hopefully that's the case this time too.

If I have another night like last night I'm supposed to call Labor and Delivery triage and tell them what's going on and make sure they know I have a confirmed diagnosis of Trisomy 21 (the medical term for Down syndrome). And prepare to get sent in and get checked out.

My doctor doesn't know if I'll go into active labor tonight, a week from now, or make it to my scheduled C section. But he did decline to schedule any appointments for me past the one I already have scheduled for Thursday. He said, "Let's see if you're still pregnant on Thursday." He did mention while doing an exam that my hopes of a natural birth are probably not in the cards and that I'll most likely be having a repeat C section. I'm mostly okay with that, I've been planning for it all along. It was nice to hear for a second that I may be able to VBAC but today he said, "We won't be going to the ends of the earth to get a vaginal birth for you. It won't be safe for either of you and we just want her here as safely as possible. Our threshold is pretty low for what she can tolerate." I wholeheartedly agree! Obviously I'd love to not need surgery in order to have a baby but the important thing is having the baby!

Yikes! I am SO excited for Lauren to arrive. But I'm afraid for her to be early and have a longer NICU stay. And the thought of having painful contractions on and off for the next 3 weeks while chasing around a very energetic toddler makes me exhausted! I have no control over it which is honestly hard for me. I'm a planner. I like to know things ahead of time.

We would appreciate all of the thoughts and prayers we can get that when Lauren does decide to make her grand debut she will be very healthy and able to come home with her mom, dad and big brother as soon as possible! Her nursery is just about finished, the stroller and carseat are ready to go and all of her clothes are hung in the closet. All we're missing is the baby :)

Thursday, January 19, 2012

Lauren's birthday is scheduled!

Although I had a small run-in with preterm labor earlier this week, my doctor was ready to schedule my c-section! Drumroll please.....

Lauren's birthday is on the books for February 17th!!!

I can't believe we're in the home stretch. 4 weeks left until I get to hold my daughter! 29 days!!! I never knew I could have a level of anticipation this high! Obviously there will probably be some characteristics that we attribute to Down syndrome but I can't WAIT to see how she takes after my husband and myself! I hope she has my hair!!

When I went for my scheduled appointment on Monday I was having contractions 3 minutes apart and my cervix had begun dilating. I won't be checked again for a while, and even then only if my contractions continue. So far I'm still having them daily, but they aren't regular. If I am able to stay pregnant until February 17th I'll have a planned c-section. If Lauren should decide to join us a little early, I may be able to try to have her naturally. I obviously don't want her to be early, but the upside would be possibly not needing a c-section!

I am SO excited that we get to meet our miracle so soon! I'm also thrilled about the idea of not being pregnant! Two babies in two years is fun and exactly what we planned...but I'm excited at the idea of wearing jeans that button and zip again in the near future (hopefully! I need a gym membership!)

Just wanted to update everyone :)

OH!! And my last ultrasound was on Tuesday (and probably my last for the rest of my pregnancy...sniff sniff) and the tech said Lauren has a LOT of hair!! Good thing she already has tons of hair bows!

Thursday, January 12, 2012

Great news all around!

I had another long day at U of M today. I met with the fetal cardiology team for a fetal echo of Lauren's heart and then I met with the high risk OB team (maternal fetal medicine or MFM) for a growth scan to see how Lauren has grown over the last 3 weeks.

There was no change in the fetal echo, which is great! The cardiologist I met with today said to expect surgery around 3 months old. The surgeon, whom we met with last month) said to expect surgery around 4-6 months old. So, basically nothing there is different and Lauren will have surgery when her symptoms show it's time!

Here's for the AWESOME news!

Lauren jumped from the 9th percentile to the 20th percentile and is no longer growth restricted!!!! She weighs almost 5lbs already! Her femurs (leg bones) are still measuring about 3 weeks behind, which does factor into her growth percentile. Which is amazing because it means even though her legs are measuring short, her abdoment is measuring right on target! And they took some great 3-D pictures :)

I still will be monitored closely until the end of my pregnancy, twice a week non-stress tests. But the cardiology team doesn't feel they need to see me again since Lauren will be born next month (next month!!!) and they will just do an echo of her heart when she arrives. The high risk team doesn't need to see me again unless my OB wants one more growth scan before delivery.

I asked about time in the NICU, which has been my main concern. I really want to be able to take her home when I'm discharged. The cardiologist said they'll definitely want to observe her in the NICU for at least a few hours. If she's doing okay and not too sleepy to eat and can keep her oxygen levels up it shouldn't be a problem for her to go home with us. They might keep her a day or two longer than they keep me, but we're now able to anticipate a full term delivery and a very short NICU stay!

Praise GOD! Only 5 weeks until I get to meet my daughter!!!!

Friday, January 6, 2012

Dreaming of Baby

I had the most realistic, amazing dream about Lauren last night. I've really been wanting to dream about her for some reason lately, so I'm so glad I did!

In my dream we didn't know ahead of time that she had Down syndrome, and when they gave her to me I remember being shocked at how beautiful she was! Her presence just filled the room and she looked right at me and smiled. And then I noticed as an afterthought that she had Down syndrome and it didn't matter at all, none of the doctors or nurses mentioned it, she was just my baby and she was beautiful! It was so realistic and such a GREAT way to start my day!

It also got me thinking: Do I wish we wouldn't have gotten a prenatal diagnosis of Down syndrome and found out ahead of time about her heart? In all honesty, it wasn't really our choice. The 18 week ultrasound was clear enough that the decision to get an amnio was just to confirm. We knew that at the time.

Most days I am so grateful that we've had the chance to prepare. I am glad that we won't be surprised at birth. I'm glad I've had the time to work through my feelings and educate myself (I admit I was very under-educated about Down syndrome before we found out about Lauren! And I'm STILL learning every day). I'm so glad that my grieving process (pretty much every parent in our situation goes through this) is taking place now, where my baby is protected. She will only know complete joy at her birth, which is exactly what I wanted. SHE is exactly what I wanted!

But it does add an element of worry, stress and fear that a typical pregnancy does not have. Not a day goes by that I don't think about the risk of stillbirth. The thought of my baby not being able to come home with me. The thought of handing my 4 month old daughter over to surgeons to fix her heart and everything that entails. This is hard. I definitely understand why people choose to "wait it out" and forgo invasive testing prenatally. The days I struggle most are the days where I get stupid, hurtful or ignorant comments about our daughter, especially from healthcare "professionals".

My dream pretty much solidified my thoughts that I AM happy we already know about Lauren's "designer genes" and her heart condition. I really am. I've been able to get to a place of peace and acceptance. I cannot WAIT to meet her! I think the anticipation is even greater this time than with my first. Partly because I love my son so much and truly enjoy being his mom. I'm excited that I have the chance to do it again!

Tuesday, January 3, 2012

Weird appointment

I started my twice-weekly doctors appointments this week! They will do a non-stress test at every appointment, which monitors the baby's hearbeat and any contractions I have.

Today was just overall a weird appointment I think. My OB wasn't there, so I was told I'd be seeing a different OB for today. I ended up seeing a nurse midwife, who was extremely abrasive.

When I was checked in, the office nurse asked why I was having the monitoring done. I explained that it was because the baby has Down syndrome. She right away said, "Oh, I'm so sorry!". This really doesn't offend me, people don't know what to say. But it was a little weird to hear at the doctor's office. She then went on about how I'll "Love her anyway" and whatnot. Again, not the most professional but whatever. She hooked me up on the monitors and said she'd check on me in about 20 minutes.

Well, 20 minutes later a nurse midwife came in. She right away says, "Really? NST's twice a week? That's weird. Are you contracting or leaking fluid?"

Her tone was so condescending and she came off as so abrasive, I froze! I just said, "Uh, yeah." She didn't ask why, I didn't feel the need to tell her. She asked if I had an appointment with my OB this week and I told her that I didn't, I thought I'd see an OB at these appoinments (that's what the scheduler told me!). She just said, "Well, I guess we'll see you back on Friday then."

What the heck? It was just weird. I felt like I was being talked down to and I really didn't appreciate it. I have an appointment on Friday and I sincerely hope it isn't with her. I also hope I really do get to see my OB at these appointments. I'm there twice a week, I'd rather not come in a third time.

My OB told me (and I've found through networking and research) that the extra monitoring is standard in my situation. I would've really appreciated for the nurse midwife to have read my chart before barging in and acting like I just showed up on my own.

She said that everything looked fine though, so that's good news! We'll see what Friday's appointment brings. Hopefully a better disposition...