Monday, September 1, 2014

Research

Ears- Did you know?

  • There is no other cartilage like ear cartilage anywhere else in your body?
  • Ear surgery/reconstruction is considered one of the most specialized types of plastic surgeries?
  • The inner ear develops when babies are the size of a thumbnail?
  • The outer ear develops in the 1st trimester at the same time as the kidneys and the heart?
This last bit of information is what I would like to dwell on… After Daphne was born we were surprised they didn't do like genetic testing or anything to figure out what happened to her ear. They just left it at that and said we would see and ENT in about 3 months. Well, at two months we were set to go in to get her weighed and of course vaccinated… and then I found something online that made me concerned. I guess it is standard that when a baby is born with a birth defect affecting their ears they get a routine renal ultrasound to check their kidneys as well as an EKG to make sure their aren't any problems with their heart. I decided not to bother with making it a big deal but then I read something that scared me even more! I have started researching and figuring out why we vaccinate and whats in vaccines (Dr. Sears, Vaccine Book) and found that in babies who's kidneys aren't developed well (usually premature babies) aren't given certain vaccines because of the aluminum content. (the one I'm looking at is the DTaP) All the aluminum could potentially build up toxicity in the brain or something like that. Anyway so in my research I found out that POTENTIALLY Daphne could have something wrong with her kidneys and POTENTIALLY if I got her vaccinated now before I knew if anything was wrong there could be some risk with too much aluminum in her system. oh goodness…

So all that to say I talked to her Dr about all this and she agreed their could be some risk involved in vaccinated before we knew and we should go ahead and schedule a renal ultrasound and EKG. Why she didn't say that when Daphne was born I don't know. SO, Daphne is scheduled for both the EKG and Renal ultrasound this Thursday the 4th. I'm not worried really just glad that I had the presence of mind to read into things and not just take other peoples word… Thanks for the prayers. If anything was really wrong I know we would know by now. Daphne has jumped from 16th percentile in weight to 38th. A whopping (11lbs 4oz). She's growing great and we love her happy little personality. All this just means we have more Dr visits and of course…more BILLS. No fun. God is our guide and will lead us well…

Also we got BEAUTIFUL newborn pictures taken by the amazing jubileeophotography (Facebook page). They turned out great. She has changed so much since these but I thought I would share some of my favorites. Its crazy that I almost canceled them… I was so worried about her ear and what people would say…now it is a part of her and there is none of that worry anymore. Now I just worry about her kidneys. ;)





Friday, June 27, 2014

"It's OK"



Our sweet baby girl is HERE! I took this picture of Felix on Saturday June 14 because it is a tradition that I have to take a picture with a sign every Fathers day…I started it when I was pregnant with this little dude. Wow has he grown. Little did I know that I would go in to Labor only a few hours later…


Daphne Elaine was born on Fathers Day, June 15, 2014! Andy had been gone for a week starting the 8th and didn't get home till the 13th so I was SUPER nervous she would come while he was gone! Our entire family and friends were praying for us and I'm SO THANKFUL he got here about 26 hours before I went into labor. :) GOD IS SO GOOD! Her delivery was very similar to Felix's in the sense that it was FAST!!! Started having contractions at about 3:30 a.m…woke up Andy at 4:30, we left the house at 5 and got to the birth care center at 5:30…she was born by 8:51! When we got there they had to monitor baby so I had to lay in the bed WAAAY too long…they weren't happy with how my contractions were going? something along those lines. Anyway, they checked me after and I was only a 5- finally, they let me waddle to the tub and that was amazing. After being in the tub maybe an hour they wanted a progress check…I was so tired and only at a 6. They asked if the resident could break my water and asked if I wanted anything for pain. I was so exhausted that I said I think I wanted an epidural. Andy was quick to suggest they break my water first before the epidural. So the resident came in and broke my water. She left, I got up and went to the bathroom and came back out and had a contraction and all of a sudden began screaming that she was coming! Andy basically carried me to the bed and the nurse checked me and said I was complete. She told me to try not to push and calm down and paged the doctor, resident and other nurse. The doctor, nor the resident got there in time so a nurse delivered Daphne into this world. I think I pushed once. She came out screaming and healthy and I was so thankful for another natural and quick delivery! I will say it again, my husband is the greatest "doula" there is and was AMAZING during the whole thing…so glad I didn't have to do it without him. :)

"Its OK"

Right after she was born they laid her on my chest and covered her up…as i was stroking her and kissing her i realized something wasn't right with her right ear. I looked up at Andy and whispered "her ear." He was looking right back at me and smiled and said, "its ok." Those words have meant so much these past few days…We enjoyed the rest of Sunday together laughing about how little she was/is and how pink she was and what her middle name should be. We had a slight disagreement. :) Honestly her ear didn't seem a big deal because she's so little maybe? it just looks like it got folded over and grew that way…In my naivety I was SURE it would be no big deal to fix…i mean, plastic surgery has come so far right?! Every Dr and every nurse that saw it said, "Oh they can fix that." The nurses especially were great. She didn't have a hearing test till the next morning and so till then I was a little concerned that maybe she couldn't hear at all. Then, as they were checking my blood pressure the nurse pulled off the velcro around my arm and Daphne JUMPED! It was so encouraging and the nurses celebrated with us and we just felt such relief that she could at least hear something! The next day she passed her hearing test in the left ear with 100%. Her right ear they had to go get special equipment for because the hole (which I'm calling an ear canal) is so little they couldn't fit the instruments in…she got a 50% on that ear which isn't passing…but the audiologist was comforting. He said at least she got something which hopefully means she has all her "parts" back in there. :)


It has only been since I got home and have done some research that I've realized how specialized and how, I guess, rare something like this is. In my own research I found that Daphne has a congenital condition called Microtia. It is when the external ear does not develop properly. It occurs in approx. 7-10,000 births so is relatively uncommon… The good news? They can fix it! I'm 100% sure…We are just going to have to wait…not days or weeks- but years. She will go to Audiologists and ENT Specialists and we will plan for surgery for her "little ear" when all the factors are right. There is a long journey ahead for this little girl.

I can honestly say that this has been a HARD week for me. It sort of just hits you all of a sudden and I kind of feel like I'm grieving a bit. It hasn't been hard to tell people or point it out as they are holding her…its when i think about the long road ahead of us that it hits. If you know anything about me you know 1- I don't handle uncertainty well. And 2- I HATE HATE HATE phone calls, especially to drs and insurance companies. Both of those i will have to get very used to I'm sure.

I'm writing about this so you all can pray…This is going to be hard and right now it feels like its too much but I know thats where God wants us so we continually rely on Him for His strength and not our own. I know this is Gods plan and we will glorify Him through this.

Things Im Thankful For
  • I realize this may sound depressing and I don't mean it to. I am THANKFUL for our adorable baby Daphne! She already has so much personality and is so much better at everything than Felix was. ;) I love her more than I ever thought possible.
  • I'm thankful she has a perfectly good left ear!!!! And perfect hearing in that ear! We know things could be so much worse and are so grateful. 
  • I'm thankful that headbands and hats are "in" for babies. :) I plan on collecting a headband for every outfit she has. 
  • I'm thankful for Felix who makes me laugh through my tears at the cute things he says everyday. 
  • I'm thankful for my husband who lets me cry when I need to cry, tells me when to stop crying, and holds me when I need it. He has encouraged me so much with his wise words. He told me he doesn't want me to miss out on her because I'm sad or embarrassed or worried. I need to just enjoy her and enjoy being her mommy. 
  • I'm thankful for Drs and surgeons who have devoted their lives to helping kids born with this condition! It is amazing to research and see the before/after pictures. I'm so thankful Daphne will have a "normal" looking ear thanks to them! 


Things you can pray for:
  • We have another hearing test scheduled for her on July 3rd. Hoping that can give us more info on what all is working in her right ear. 
  • We are going to see an ENT doctor on September 15th… Since her other ear is perfectly fine I guess they wait that long to evaluate things more closely. Seems like a long time to me but I've never been very patient. :)
  • Pray for my heart in all this. I feel, obviously responsible for her little ear and makes me question everything I may have done wrong while pregnant. Did I eat too many sweet potatoes? Was it because I skipped that pill that one day? 
  • For all the decisions we will have to make regarding Drs and procedures. It feels so daunting to think about and we haven't even had any decisions to make yet. 
  • Pray for finances… obviously this is a big one and I can't worry about it now. It is scary to think about but I must be confident that God will provide! We are in the perfect place to save money, knowing that we have years before Daphne will need a surgery…that is comforting. 
  • Pray she gets hair really quick. :)

Thank you all for praying and following along on this journey with us! We feel very blessed to know we have such a huge support system. We realize we are very blessed! This is an old school song I've been singing this week…just the chorus. :) 

O Rejoice in the LORD
He makes no mistake,
He knoweth the end of each path that I take,
For when I am tried
And purified,
I shall come forth as gold.


My babies. You can kinda see her "little ear" in this picture. Felix calls it her "little baby ear." :)