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Wednesday, August 29, 2012

Aug 29th- Opening up

Justin and I had originally decided to keep this blog mostly informational. Sticking to the facts and important information about Noa's status and up-to-date medical info. And we decided intentionally not to include any emotional processing or anything too personal. I think it was to keep it short and make it 'easy' to follow....but in the end, I feel that God keeps nudging me to more vulnerability, by necessity really.

I prefer to not get hurt and remain more guarded with my heart- but the truth is, we are standing at the foot of a very big mountain...looking up at the unknown. We are in the position (by God's grace and love), where we need to be vulnerable in ways that require faith. Faith that God is loving and good and will carry us through these next couple of months and years. And that people will love and respond as we make ourselves open and ask for help with our two other precious babies Ruby and Emmaus (and we are going to need so much help!)...and as we ask for prayer and support and help from people to help carry us in our weakness. Agh, that is hard, but I know God is encouraging us to do that. Be weak and let Him be strong...let others help- ask people to pray for us and baby Noa...and open ourselves up more. 

So, from now on, you will be seeing a bit more of the 'rest' of our lives and hearts in this blog...and our deep need for you and Jesus.

Saturday, August 25, 2012

Aug 24th- OB-Gyn Appt (30 Weeks, 6 days)

We met with Dr Hilton on Friday...and not much to report. Just the normal routine~ checked my weight, blood pressure...listening to baby's heart beat and a quick run through of questions. Apart from Noa's stuff, all is good with me and the pregnancy. I'm in the third and last trimester now, so we are looking towards the prep of a third baby! Trying to make a list of our needs and anticipating a second winter in Spokane.

Saturday, August 18, 2012

Aug 17th - Meeting with MFM and Consultation with Neonatologist~ tour of NICU

Yesterday we had an appt with Dr Barber at Maternal Fetal Medicine. He isn't the perinatologist (definition) that we normally see, but he is the director of the MFM clinic and we really liked him. 

Our visits at MFM include a thorough look at Noa and her growth. They also monitor my levels of amniotic fluid (which can run high when pregnant with a CDH babe- mine looked normal) and then we have a consultation with the doctor. We always enjoy these visits (although bittersweet due to the realities of her condition) because we get to really 'connect' with Noa, and see her from head to toe...often in 4D. The stenographers always take time to explain what we're seeing and give us long looks at her face, tiny feet and hands and new growth, like her hair!

This visit with MFM's Dr Barber was was encouraging... just like our last one. 

Her development looked awesome. There were some more in depth measurements taken, per request of Noa's physician (whom we met with on Aug 1st), and she is doing very good. The liver is still below the diaphragm (a HUGE factor that determines how serious her condition is) and it looks like she is growing on track~ a big 3lb 2oz girlie! There were no additional 'guts' up in the chest, and they were able to get some good shots of her heart/valves functioning (which is in a tilted position because its sharing the space with her right lung) and it looked great. Her chest and abdomen are measuring normal (which can also be off due to position of organs) and her Head to Lung Ratio (LHR)- was up above the numbers that would be of concern. So, we are so encouraged. 

Dr Barber spent most of his time discussing with us what he saw in the ultrasound and what to expect next. We just hit 30 weeks on Saturday (today), and when we see him next, he'll have consulted with Noa's surgeon (Dr Georgeson-whom Dr Barber couldn't speak more highly of), the neonatologist (NICU doctor that cares for her directly after birth up to surgery and post surgery), and my OB. They will compare notes and brain-storm about Noa, the birth-plan and strategy of care. Then he will discuss it with us at our next appt.

It has been an on-going question if I will be needing a C-section or if we plan the timing of the birth at all (induction) for convenience with Drs schedules and availability/care. I was surprised (and hopeful) when Dr Barber said that best-case-scenario, I would go into labor naturally in my 39th week. He said it didn't look like Noa needed an 'exit-strategy', and that carrying her as long as possible for development would be ideal. Some reasons that would allow this timing 'risk' of natural onset of labor is that we live so close to the hospital and Noa most likely won't be taken for surgery for 3-11 days after birth. So the timing doesn't seem as essential, but Dr Barber said he would discuss with other drs. and let us know.

After our time with Dr Barber, we took the elevator 2 floors up to the NICU for a brief tour and meeting with Dr Wilson, one of the team of neonatologists that will care for Noa before and after her surgery. It is this team of people that will take over care as soon as she is born. They will assess her, stabilize her, treat her with oxygen...and after rolling her over to mom and dad for a quick peak...will move her to NICU. As soon as we are able, we can go up and see her and track her progress.

Dr. Wilson spent over an hour with us going over every procedure/treatment Noa would more than likely expect to encounter. She explained what markers they need her to meet before she can be released to go home (which could take anywhere from 3 weeks to a few months). One serious medical issuse that will closely be monitored and treated right away is pulmonary hypertension (definition). Both Dr Wilson and Dr Georgeson spent a lengthy amount of time explaining the seriousness of this to us.
After Noa's surgery, their goal will be to ween her from all the tubes and hook ups and any assistance she's needed with breathing and eating and pain. They will work with her to learn to eat/nurse (which can be an issue with CDH babies), and breath in a way that will ensure she continues to grow and thrive. The two extremes would be she comes home with a feeding tube and oxygen support or, hopefully in Noa's case, she is weened off of tube feeding and she is able to nurse (with supplementation) and needs no additional breathing assistance. Of coarse all of this includes medications, close monitoring and follow-up therapy (for possible delays in developmental 'markers').... and lots of support and love from her brother and sister, friends and family!!!!

This day was full of so much information- and I could write more, but this post is already very long!!! We don't mind sharing more if you have any questions!!!

Thank you

We love and appreciate (and need) your love and support!

30 down, 10 to go (or less?)...

It's been 10 weeks since we went in for our 20 week ultrasound. Excited to find out the sex of our third baby, we weren't prepared to hear the news that our baby had CDH. Without ever hearing this acronym  used in either of our previous ultrasounds, we had no idea of what it was, or how serious it is. Good news is, you're having a girl; unfortunately she has a birth defect...Congenital Diaphragmatic Hernia...(what is CDH? click here)

To say that this last 10 weeks has been a roller coaster would be an understatement. It would be better  described as a STORM. A big one; like images you'd see from space; covering the whole state you live in. The reoccurring theme of "a storm" through music and topic during this time lead to the name Noah (and the Flood) or (since we're having a girl) Noa. Noa is derived from a word meaning "movement", fitting name since she has been the most active of our three. Noa is also claimed as a Japanese name, loosely translated as "my love" and an Arabic name meaning "light". We gain Hope and Faith after each doctors visit finding that her condition hasn't worsened since we found out and that the outcome looks better and better.

Every three to four weeks we've had meetings with one or more of our DR's;  our OB-Gyn, MFM (Maternal Fetal Medicine- specializing in high risk pregnancies), a Pediatric Surgeon, and a Neonatologist. We were assigned a case worker (social worker with a medical background) to assist in bringing all these DR's together for our birth plan. We have a Build-A-Bear with Noa's heart beat and a collection of ultrasound pictures that can fill a photo album. We can truly say that everyone who has been a part of this journey of ours has been amazingly kind and loving. We've felt we're in good hands and supported every step of the way. Being in Spokane and in the care of Sacred Heart Hospital and their DR's is reassuring to us.

Our next appointment is August 24th with our OB and than Sept 14th with MFM...

more to come......