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Monday, September 24, 2012

Sept 24th - 
...busy times!!!

I'm not sure if we are busier than normal...or if I'm just feeling it because of how pregnant I am!!!!! Noa is definitely feeling bigger and carrying the other two around isn't as easy as it was a month ago. We've also had a week of sickness. Ruby and Justin have been hit the worst, and Emmaus just a cold. I, gratefully, have been healthy! 
Emmaus at Manito Park

I am 35 weeks along now, and we are really getting excited about meeting Noa~ wondering what her personality will be like, her eye and hair color...all those normal exciting things a parent wonders! We will see. I look forward to watching the other kids (especially Ruby) welcome her into the family. I suspect Ruby will try to help with Noa and love her alot.

One milestone for us this last week, was hitting our 1 year mark here in Spokane. On Sept 20th, 2011 we moved into our has crept and flown by all at the same time. 

Tiny toes on her forehead
Last Friday we had an appointment with my Ob-Gyn, Dr Hilton. Because of Noa's condition we will start weekly visits with him that will begin with a "biophysical exam" thru ultrasound.  They will be looking for specific information about the baby to make sure we're healthy (heart beat, movement, fluids etc.) The exam went well this week and once again, Noa looks great! She has gained a few more ounces since our last ultrasound and is still close to the 45th percentile for growth. We also brought home some of the clearest pictures of her in 4D....which is fun. There have been many comments on how much hair she has.
Plumping up!!

Apart from starting weekly appointments, we SET AN INDUCTION DATE of Tues Oct 23rd. So, unless I go into labor naturally before then, we will check into the hospital early in the morning that Tuesday and move on to the next stage of our journey~ birth! I am still hoping to go into labor naturally since its almost always better for baby and mom that way, but we will be happy either way.

Please, be praying for her adjustment right after birth. I wrestle with the thought of her trying to do all those natural things a baby does when they are born (like wiggle around and cry) but she'll be kept from it for her own good. It feels wrong, even though I KNOW it's for her best health and survival. None of it will be easy, but I pray for a smooth and skillful transition, God's peace on her and the ability of the NICU staff to be adept. Obviously I don't like the thought of her on pain medication or having to deal with the possible side effects I've read about with medications, intubation and being 'treated' at a young age. But in all of it, we trust God will carry her and us. We appreciate your prayers.

We have started to prepare practically by organizing care for Ruby and Emmaus for when I am in the hospital, and we've made a list of names and numbers of those that have said they would help. I washed some clothes for her and made a drawer (although we don't know if she'll be newborn size when she comes home), but we haven't set up a bed yet since we won't bring her home till after she recovers from surgery! I think we will place her car seat in the van anyways...that way we think of her with us already!

35 Weeks and counting
Wonderful daddy and husband
One very fun treat this last weekend, was a visit from a family that has a 4 yr old daughter that has (had?) CDH...I mentioned them in the last post. Anyways, It was great to hear their story and meet their children and ask some practical questions. It was a little bit of a 'wake up call' to hear that after their daughter came home from the hospital, they had a regular schedule of taking her for check-ups/appointments 3 days a week for the next year and a half. Wow. We'll cross that bridge when we get to it. 

Thank you for your prayers and love. Crazy it's just a couple days till our next appt!

Sunday, September 16, 2012

 Sept 14th - 
So Much to be thankful for! 

This has definitely been a theme this year...choosing thankfulness even in the face of challenge, disappointment and often confusion (facing the unknown). This coming Friday will be 1 year since we moved to Spokane (with a 5 mo transition in Seattle). And my goodness what a year. It has been so tough, but we've grown and learned so much thru it.

That's how we felt when we left our dr appt on Friday. Of coarse we were so grateful for all the good news we received about Noa's healthy development~ but our hearts were still very aware of all the challenges and heartache ahead (and of coarse...the unknowns).
Picture we saw of Dr Barber in elevator!

We were very glad to meet with Dr Barber again (from Maternal Fetal Medicine). He has a wonderful laid-back yet professional disposition. After looking over the ultrasound images and numbers, he was very positive about how the pregnancy was progressing. Noa is 'head down' now (which was a relief to us since Emmaus didn't turn till the very end of my pregnancy!) Other awesome news is that she is in the 44th percentile for growth and measurements (and this is the 'normal' baby scale!). They estimate she weighs a little over 5lbs and her heart is looking good as well. No real concerns apart from her stomach and intestines being in her chest.

We were also pleased to hear that Dr Barber was able to talk with Dr Georgeson (Noa's surgeon) about our case and come to the decision that I could give birth naturally with no need for a Cesarean. So, we are planning on natural childbirth in my 39th week, unless I go into labor early. He said, "the bigger baby we can give NICU and the bigger baby that goes into surgery, the better!" So, please pray I go into labor in my 38th-39th week naturally (both Ruby and Emmaus were born after their due dates, so they will induce me if it doesn't look like I'll have her by Oct 27th). We will know more this Friday, the 21st, when we have an appt with Dr Hilton my OB.  We expect him to set a birthday!!! 

Wow! in 6 weeks we will have another wonderful, beautiful amazing baby. I never knew being a mom and having a family would be such a joy and gift in my life. Thank You God for this gift.

During this visit we were able to get some clarity on a few questions we've had. One was about the percentage of lung she has on either lung. The dr told us that they can't see the left lung clearly because its covered by the stomach and intestines- so they focus on the right lung (which is sharing the space with her heart). They use the size of the right lung to determine the seriousness of her condition (the HLR-head/lung ratio- which I've mentioned in other posts was a very good number). We also were able to get a mini tour of the birthing unit and recovery rooms (once you have the baby, they move you to a different room). I did start to cry a little when we walked out of the elevator onto the birthing floor, there is so much joy but apprehension and heart break too. We know it will be good...but a serious time as well.  Sigh. As far as the rooms go, they were large and very, very nice! Each room even had a tub with jets! My own mini-spa! 

We learned that we could expect around 8 medical staff to be at the birth to care for me and Noa, and we also decided that Justin will stay with Noa when she goes up to NICU after they intubate and stabilizer her (what is intubation? click here) . It will give me some peace to know that he is with her and can report back with photos and info.

And other than marches on! Justin's mom was here to visit..and it was a wonderful time! Ruby is still enjoying pre-school (which is evident by how tired she is after). I was very happy to start going to a moms group that meets a short distance from our house this last week- I felt so supported and encouraged thru it. And lastly, I had a dear friend visit (with her 3 kiddos) from Bellingham this weekend. God is providing much support and love for us. Thank you!

Sunday, September 9, 2012

Sept 8th-  33 Weeks along and Counting

1st Day of Preschool
Top of Mt Spokane
Summer feels like its coming to end here in Spokane. Ruby (who is now 3) has just started pre-school. It is only 2 days a week, but we are happy to have her in a consistent and structured environment where she can make friends and grow and learn in new ways. I think she will love it! She is such a doll- so sweet and compassionate.

A couple of times I've cried in front of Ruby about what's happening with Noa. She'll ask what's wrong and want to give me a kiss and get me some tissue. I just tell her Noa is sick and it makes me sad, just like when she is sick. That answer seems enough and it helps me to snap out of it and move on with the day or task at hand!

One very cool thing that has happened over the last couple of weeks, is that we have been connected with 2 different families that have children born with CDH. The amazing part is that we already knew these people from earlier 'seasons' of our lives. One of the families I knew thru a Christian school I attended in Co back in the late 90's and the other family I have never met, but the man was a roommate of Justin's many years ago and is also a dear friend of my cousins! And if that isn't crazy enough, these 2 couples know each other and have shared their stories and support with each other. Both of them have daughters that have survived and continue to thrive thru the beginning stages of this journey (one of the little girls is 6 and the other is 3). They both said they felt particularly encouraged and supported by other CDH families when they were going thru this and have offering that to us. 

It feels like a gift from God to have folks that we can relate with and understand what we are feeling.  We are able to share some of our 'burden' with them....even though we've only communicated through email so far. Processing questions, having feedback and sharing my fears and sadness has been helpful. Its been special to me that they are believers. In the end, we all KNOW that God is our only solid support and what we rest our hope and faith in. He is going to carry us thru this...and even is now.

Today I am 33 weeks, and am definitely starting to feel like we are nearing the end...not just physically, but preparing practically. I am mentally preoccupied sometimes~ making lists of what we need to do before she comes and trying to envision how life will be. What will her special needs be? How will we incorporate her into the family when she does get to come home? I've been told that we will have to be very careful about protecting her from germs and that even the common cold can easily turn to pneumonia with compromised lungs. How will that be possible with the other 2 babes and winter upon us? What will it look like when Justin goes back to work?

I can feel very alone sometimes. When I put my head down on the pillow (and when I wake up) my mind just wonders about all the unknowns like birth, NICU, surgery, it will all go with a sweet little baby right from birth. It is a regular practice of letting go of all that I can't control anyways and hanging onto God. Trying to keep my heart soft and open. Life goes on...but somedays I just pretend. I am so so grateful to have Justin as my husband. He is so kind and patient and understanding. Loving me when I feel crazy.               

Our Next appointment is the 14th. We'll let you know how it goes!!