CDH Awareness Day… one year later

4/1/10 – I am sharing part of my journal entry after getting the news.

“We received devastating news at our ultrasound. After being overjoyed at the news we were having another girl, we found out that she has a congenital defect- a diaphragmatic hernia. Which means her diaphragm didn’t close like it was supposed to and some of her organs are in her chest cavity making it harder for her lungs to grow and could damage her heart…I didn’t sleep well last night. I kept waking up and thinking was that just a bad dream? This can’t be happening to us. But it is.  I am scared. Monday we will know more. It is so surreal trying to live life with this knowledge. I pray God will carry us through this. She is strong. She is tough. She can make it. I have been seeing stats up to 50% survival – so I hold to the faith that our little girl will be a miracle…..”

Finley is SUCH a miracle.  God has been ever present with us in this last year. Why does it always take something like this for us to truly draw close to him?

My first phone call after getting this news was to a dear friend who has been there for us in so many ways and it was her husband that immediately said, ” I think I know the best guy in town for this… I will call him tomorrow.” Within 1 week we had an appointment to meet with Dr Bliss. I am still so thankful for Dr Bliss meeting with us and being such a comfort and giving me even more HOPE. (Thank you Andy) He was just so confident (as surgeons typically are) but also kind and compassionate. (Yes, a proud member of his fan club).

One year ago I got the news that my child “might” not make it. It was brought up a few times that we could medically terminate for this reason up to 26 weeks in Oregon. We felt like 40-50% was still a chance for her survival, a pretty decent one… and it was in God’s hands either way. We didn’t feel like it was our place to intervene… we were on path for a reason, so we would see where it went. I am so thankful for the fact that I have such a healthy happy baby with us today. So thankful. I don’t take either of my children for granted. They are a gift.. each day… even when I want to pull my hair out.

In the past year I have seen many CDH babies not make it. The ones I know about are just a small fraction of the total lost. I have ached and cried for these families that I don’t know, but I grieve their loss with them. 50% of these babies don’t make it. It’s not fair.  I pray for a day that they know why this happens, and can either prevent it, or with advanced in utero therapies- bring up the survival rate to 100% (I aim high in my prayers.)

One year later I am holding a beautiful baby in my arms.  I am now aware of CDH.

Tell just one person about CDH today – make it your status update, twitter it, whatever you do to spread the word.  Thank you to everyone that reposted the story yesterday!!

Also, pray for Clara who is undergoing her repair surgery – TODAY! http://thehardylife.blogspot.com/

Isaiah 40:28

“The LORD is the everlasting God,    the Creator of the ends of the earth. He will not grow tired or weary,    and his understanding no one can fathom. 29 He gives strength to the weary    and increases the power of the weak. 30 Even youths grow tired and weary,    and young men stumble and fall; 31 but those who hope in the LORD    will renew their strength. They will soar on wings like eagles;    they will run and not grow weary,   they will walk and not be faint.”

CDH Awareness press….

In honor of CDH Awareness Day tomorrow, and the one year anniversary of our diagnosis – I reached out to a few journalists to see if I could get someone to do a story about CDH… I got a call yesterday and today this was posted…  I am just so excited to be able to help raise awareness!

http://blog.oregonlive.com/themombeat/2011/03/thursday_is_cdh_awareness_day.html

Reflections

As the anniversary of our 20-week ultrasound is approaching, I have been thinking a lot of this time last year. A year ago today, I was still unaware of the sex of baby and that she had a congenital birth defect.  I was not even thinking or seriously worrying that in a week I would get the news that would rock my world. But now, a year later my precious beautiful baby girl is with us and she is such a strong fighter and I have come to know God’s love and comfort in a way that I had never known before all of this. I was looking back through my journal and am in awe of God. I found an entry from July where I had dreamt about breastfeeding Finley (did you know that I didn’t have a single nightmare about losing Finley? How is that even possible? Not one single bad dream about her throughout the pregnancy). That was my second dream about her. I wrote about how great it felt to hold her and I was celebrating the fact I could breast feed her. Look at us today – my CDH baby that I was able to transition away from bottle and exclusively breastfeed. I feel like that dream was such a gift and am so thankful for all the little things that happened a long the way that gave me peace or strength. 

Finley is doing great – she is 7 months and continues to stay in the 50% percentile for head, height and length. She was 17 pounds 4 ounces on Tuesday. She is doing well with solids – though does gag sometimes on consistency if it is too thick. She loves drinking from a cup and loves water. The nurse did a development assessment on Tuesday which she did great in all areas except gross motor skills. Finley isn’t sitting unassisted yet, nor can she really lift her belly off the ground or get up on her knees to get ready to crawl.  She recommended having Early Intervention send a PT since we get those free services anyway and she can give us some more exercises to do with Fin. Not a huge worry since she is doing great in all other areas, and not unexpected given her low-normal muscle tone in the upper torso.

We have our next appointments (Ultrasound, Xray, Surgeon) in late April…. I so look forward to these appointments and getting the reassurance that everything is still where it is supposed to be. When I spoke to the Nurse earlier in March she said that the XRay was beautiful and that Dr Bliss had placed LOTS of clips in, so it was very clear that she had not reherniated.

I just love that man. Parents in LA are very lucky to have him.

I hear a baby waking up from her nap……

3.1.11 (For lack of a good blog title today)

Finley is now in the 50th percentile for head, height and weight. A well proportioned girl!  Last weigh in (last week) she was 16 lb, 8 oz. She is loving solids and just gobbles them up. She tries to grab the spoon and feed herself already and is very interested in what we are eating and tries to grab that too. So far she has had oatmeal, squash, sweet potatoes, carrots, and pears.  And speaking of carrots – that brings me to a little side note. On Sunday, Finley started to vomit – 4 times within an hour which prompted us to take to the ER, since I don’t want to wait and see with things like this.  Vitals were looking good and they did an X-Ray which was also very clear and did not show any signs of reherniation. X-ray can miss a reherniation (if big things aren’t up yet) but since they weren’t any other strong symptoms they didn’t do the ultrasound.  She will get that at her next follow up with the Surgeon in April.

Since she didn’t have a fever or diarrhea they don’t think it was a bug – so not sure what it was.  Carrots are not very high on the allergen scale, but some people are allergic. This was her second exposure to carrots, and apparently most reactions occur on the second exposure. Or her body wasn’t ready to digest them. We will take a break from carrots and the Ped wants us to try again in a month or so and see if it happens again.  We have her a appointment with her Ped tomorrow for her belated 6 month apt, a vaccine and her Synagis.

My continued prayer with each breath I take is for her not to reherniate again – I think all CDH parents pray for this every day. Some days are easier than others to not obsess over it. Right now I think I need extra prayer to not worry about it.

I have put together a team for the March of Dimes, Walk for Babies on April 30th in Portland. If you are local, join our team – and/or if you are able, please donate. http://www.marchforbabies.org/team/t1526937 (Team name: Oregon Stroller Strides) I remember walking in this event last year, just weeks after receiving the diagnosis for Finley. It was very powerful seeing all the shirts in honor of children, and in memory of. This year I will walk in honor and celebration of Finley. (amen!)

Thank you for all of you that pray for us and love us. I am always so thankful for all of you.