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The Comfort Tree

Before the new baby came I made a list of my top ten unnecessary items to bring to the hospital which was inspired by something I found on pinterest about what not to bring to the hospital. 
In the end, believe it or not, I did not regret bringing any of the items I put on that list, although the blanket and emergency delivery kit never made it out of the car because they were not needed (thank goodness). Many of the things on my list were items to help me feel relaxed during my first hospital birth. One of my favorite items was what I will call “The Comfort Tree”. 
This was another pinterest inspired idea. 
I used paper clips and twine to hang inspiring pieces on the tree, which included a sonogram photo, some cards from friends, my sons artwork with a maternity photo pasted onto it, 
some knit booties, and the invitation from the baby shower. 
One of my FAVORITE parts of this project was that my kids helped. We used a mason jar that they had collected fireflies in all summer long (don’t worry I washed it). The branch was one I found outside and it was held in place by some rocks my son collected. There was one for each family member and he colored them with chalk. 
 It was like a jar full of nature, friends, family, memories, and love. I was glad to have the tree at the birth. 

By |2015-05-14T23:15:38+00:00November 13, 2012|Uncategorized|2 Comments
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His Namesake

 

I took Ezra’s newborn photos with the old family Bible.
 As I scrolled through the pages looking for the book of Ezra I found some keepsakes from my dad’s side of the family.
 Each item tucked in between the pages had so much history enclosed about people that I am connected to but have never even met, like the obituary for my uncle Jack who passed away when he was only a senior in high school.
Ezra’s name is so significant because it represents the two things that are most important to us, faith and family. Our son’s name was not only inspired by the priest in the Bible, 
but it is a family name as well. J’s grandfather’s middle name was Ezra. We also got Ezra’s middle name, Wesley, from J’s dad.
Ezra’s birth announcement’s just came in the mail and I am so pleased with how they came together.
On the back there is a small balck and white photo along with this verse.
With praise and thanks they sang this song to the Lord: He is so good! His faithful love for Israel endures forever! Ezra 3:11
Back in the old days, like when I was born, birth announcements actually ANNOUNCED the birth to friends and family far away. You would get a card in the mail with the news, like whether it’s a boy or girl and how much they weighed etc. I know this is the digital age and all of my friends online knew the gender months ago and most of them saw pictures and read the whole birth story within a week after he arrived. I still like to send out a few official announcements though (even if it is 6 weeks later). It’s nice to have a photo to hang on the fridge or put in a scrapbook. I might even sneak one into the old family Bible. I think it would make a great bookmark for the book of Ezra.

 

Stationery card
View the entire collection of cards.
By |2021-10-01T23:31:44+00:00November 11, 2012|Uncategorized|3 Comments
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The Surgery

As I type “The Surgery”I hope that I never have to use a title like that ever again and then I remember that this is the first of two. We want (and it is recommended by her medical team and deaf teachers) for SJ to have bilateral cochlear implants, but right now I can’t even think about it. The nurses at the hospital asked about her getting a second CI and I told them “it’s kind of like giving birth, at first you think you don’t ever want to do that again, but then you forget.” as I say it I am holding my 3rd child who is 5 weeks old in my arms proving my point. I am learning that this part of our journey has to be looked at one day at a time. 

Day 1
From the morning of the surgery I gave play by play updates on Facebook and Instagram. This is how the day unfolded via social network…

8:35 am- I got this Brave doll to give to my brave little girl after surgery. The M&M snack mix is for the nervous mama 

11:13 am- On our way to the hospital. She’s just relaxed as can be checkin’ out the Toy catalogue.

3:30- They have given her the happy juice and she is about to go in.

3:58 pm- They are behind schedule, but SJ is in the operating room. Thank you for your prayers. I will continue to give updates.

5:59 pm- They are inserting the device now! For those that were wondering the entire surgical procedure takes around 4 hours. So probably an hour and a half left.

7:53 pm- Thank you for all of your prayers. SJ is finishing up right now. We haven’t seen her yet, but the audiologist and ENT had a very positive report. She won’t have the device officially turned on until after she heals, but they do check it once before they sew her back up and her brain responded to the sound when they checked it. They actually said “Every cell responded beautifully” In other words, the surgery was a success! Praise the Lord! We can’t wait to see our baby girl.

9:22 pm- It’s been an emotional roller coaster that I’m sure will continue for a while. 

AND this is what happened on Day 2…

J, baby E, and I stayed over night with SJ. Z was at home with both of his grandparents. It was a rough night including some vomiting, a nose bleed, lots of crying along with SJ signing “hurt”, and trying to rip off all of her hospital bracelets, monitors, IVs etc. The hospital staff wrapped up her Brave doll so she has a matching turban. We left the hospital at 10:00 am.

 The hardest part has been keeping her from ripping off her head bandage. It really bothers her, but she will become distracted for long periods and is almost used to it now. My best friend sent a package with all kinds of goodies for the whole family and it’s really come in handy. Things like this puzzle are what help keep that girl’s hands busy and away from her head wrap!

Day 3 (today)- SJ seems to be improving every minute. My strategy is spoil her to pieces. She cannot run around, climb, jump, get wet, or pull at her bandage, other than that anything goes. It seems like a fair enough deal to me.

Tomorrow we get to take off the bandage, but she still has to take it easy for another week. Then in 2 weeks she has a follow up with the surgeon, and three weeks until the implant gets turned on! Oh yeah, and I guess Thanksgiving is somewhere in there. Oy!

By |2023-06-12T06:26:59+00:00November 8, 2012|Cochlear Implants, Uncategorized|3 Comments
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The Word Love

2 years ago J and I renewed our vows for our 10 year anniversary. We recommitted to remain faithful and supportive of each other. We celebrated our love in the field among our closest friends and family. The golden sunset was the spotlight, the countryside was our backdrop, and it was beautiful.
Last week SJ had her last day at her tdeaf school before her cochlear implant surgery. I just happened to be there while when an intern needed to interview one of the parents for her practicum. One of the questions I was asked was if I feel like my daughter’s “exceptionality” (apparently that’s the latest politically correct word) has had an affect on my marriage. I could honestly say that it has brought us closer together. I’ve seen families ripped apart when difficulties arose, but the Lord has been our rock in the midst of these challenges and I give him all the glory for keeping our family strong. I was able to share all of this with the student that interviewed me last week. I am so grateful to have a godly man in my life that is completely dedicated as a husband and father.
 The most valuable thing that he has done for me in this season is listening. There have been so many unknowns this past year. I had to be able to sift through it all out loud and he was there to listen. He sympathized with me, encouraged me, and allowed me to cry.
 Today makes 12 years and although this anniversary was spent preparing for the big surgery tomorrow I have never felt closer. Don’t get me wrong I think romance and date nights are absolutely critical in a marriage, and I would love to be on a cruise right now, but this year we are going to be holding hands in the waiting room as the doctors perform a surgery that will allow our daughter to hear. She’s going to be able to hear the word love, to speak it, and to listen to love songs like the one her dad wrote for me and surprised me with on our wedding day. I can’t think of any better anniversary gift than that.

 

By |2017-11-09T09:44:43+00:00November 5, 2012|Uncategorized|4 Comments
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E’s First Month

E was born October 1st at 10:35 pm… BLINK… here I am that same time a month later. That’s how it feels, like the first month has happened in the blink of an eye. I know it’s cliche’, but it truly has gone by so much faster this time! Here is a list of little milestones. 
He now weighs 9 pounds 10 ounces. I was barely able to squeeze him into one of his newborn sleepers tonight, so it looks like he’ll be wearing 0-3 months size starting now. 
He finally lost his umbilical stump at 3 weeks and so we were able to give him his first real bath.
 This happened to fall during the time that J’s family were in town so there were 5 women doting over this little guy while his grandma washed him.
 He really likes the water! 
He even let them brush his hair

 His first holiday was Halloween. It’s funny, I saved all of the kids costumes and now that I have a chance to reuse them (E could have worn Z’s first costume which was a monkey) I would rather get to see them be something different.

At 4 weeks old he is still my little sleepy head. We gave him pacifier for the first time yesterday. He hasn’t really needed one and it was for a really brief period while I was with SJ at her school. I’ve heard that 3rd borns tend to be the most easy going and so far this is true. Hey it was true for me. Right mom?

By |2015-05-14T23:15:39+00:00November 2, 2012|Uncategorized|5 Comments
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Finally An Answer!

I have always had many dreams and fears for my family, but the thought of having a deaf child never crossed my mind. I can’t help but compare our lives to Mr. Holland’s Opus, a movie where a professional composer and music teacher has a son who unexpectedly turns out to be deaf. In our case it was the musician and worship leader whose daughter is profoundly deaf. What are the odds? Interestingly enough the odds are slim and thanks to SJ’s recent genetic testing we know just how slim they are.

Originally I didn’t think SJ had genetic hearing loss because like I said, it’s not in our family at all. We all had theories about what the cause was, but nothing seemed to match up. I had to come to terms with the realization that we may never know why. Then after connecting with another mom whose son is deaf she told me that her son’s hearing loss came from something called connexin 26. She said it is extremely recessive and they have no history of it in their family. Her son’s hearing loss is progressive and it is most common in Caucasians. It sounded an awful lot like SJ’s hearing loss. We had the testing done over a month ago and I recently got a call from the doctor with the results, which showed that it is in fact a result of Connexin 26! I can’t say I am thrilled about this one way or the other, but I am definitely relieved to finally have an answer. 
Here is a quick genetic lesson for anyone who might be like me and need the dummie’s guide to Connexin 26. It turns out that J and I are “carriers” of this recessive hearing loss gene. 3% of people are carriers, but of these 3% most of them will never know and it won’t matter because it doesn’t affect you at all. However if two carriers have a child then they have a 1 in 4 chance that their child will be deaf, a 1 in 4 chance that their child will have normal hearing, and a 50% chance that their child will be a carrier because the child receives a gene from each parent. I love this illustration that I got from raisingdeafkids.org
So most people have two “big D’s”, but J and I both have a big D and a little d. This means one of my parents and one of J’s parents do too. 
We know SJ has 2 little d’s as shown in the diagram above, but the question is what about my sons!? Well, Z we know can hear fine and since the loss happens early on he is in the clear. Whether or not he is a carrier we will probably never know. E passed the newborn hearing screening perfectly in both ears. We are supposed to bring him in to have hearing testing every 3 months until he is 3 to see if it progresses. The Doctors are pretty certain that he is fine though because with this type of hearing loss there is usually some indicator at birth even if it is not severe. On the other hand, we can have E tested for connexin 26 and just know for certain whether or not he is deaf. This would save us a lot of stress over the next 3 years so I plan on getting him tested. This simply means getting some swabs of DNA from the inside of his cheek, at least that is what they did with SJ. 
The next question is if we have any other kids will they be deaf if so does this mean that we are finished having children. These are serious questions. We always knew we wanted a big family and we knew this would not be our last pregnancy. Having this hereditary hearing loss doesn’t change anything. We don’t know what the future holds. We may not have anymore kids, it’s in God’s hands, but if we don’t it would not be out of fear of having a deaf child. If we do then it will always be a 1 in 4 chance that the child would be deaf. J JOKINGLY says if it’s one in four then we will have one more hearing child. Granted, it is a lot of hard work and it will be a LONG time before I feel like we are at a place to add another person to our family.
Speaking of a long time from now, my mind even began to wonder what this would mean for my grandchildren. Since SJ is two “little d’s” does that mean her children would be deaf? I don’t think so. As far as I know SJ’s children are guaranteed to be carriers because they will receive the deaf gene from her, but they couldn’t possibly have connexin 26 hearing loss unless she married someone who is a carrier and then they would have a 3/4 chance? If she married a connexin 26 deaf person then all of their children would be deaf? I put question marks because I don’t understand all of this and I could do a lot more scenarios, but if SJ were older I could just see her rolling her eyes saying “Mom. Seriously?” 
So there you have it. It’s Connexin 26. At least now we can stop worrying that we did something to cause SJ to loose her hearing. As it turns out J and I are just more alike than we ever thought. What are the odds? 
By |2015-05-14T23:15:39+00:00October 31, 2012|Uncategorized|1 Comment
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SJ’s Cochlear Implant

When J and I first heard about the cochlear implant we thought it was a decision that would best be left for SJ to decide when she was an adult. However, since then we have learned a lot more about the device and the procedure. It turns out that by leaving the decision to her we are making the decision for her because her brain would never be able to acquire or “decode” language later in life anywhere near as well as she can right now during this brief window of opportunity. We’ve done a lot of research and been in touch with many different people; people from the deaf communities, parents of children with CIs, adults with CIs,  Doctors, and teachers of the deaf. We’ve watched DVD’s, read books and articles and most importantly we’ve prayed over this decision.

 We started with her hearing aids, but her hearing loss is just too profound to really benefit from them. After this trial period we had a 2nd ABR, an MRI, and a CAT scan which confirmed that she would be the perfect candid for the surgery. After that we went to see a Doctor from one of the top Cochlear implant centers in the world. SJ’s medical records were reviewed by a panel of experts at that hospital. Everyone that has worked with SJ has suggested the cochlear implant and they all seem to have very high expectations of how she would benefit from a CI.  By this time we finally felt confident in the path that we were supposed to take, the surgeon we were going to use, and which of the 3 CI manufacturers we  she would be using.

The surgery will take about 3 1/2 hours. They will be performing the surgery on her right side. This means she will loose nearly all that is left of her natural hearing from her right ear, but the sounds she will gain through the implant will be a dramatic improvement so it’s a good trade. The type of device she will receive is called Cochlear Americas Nucleus 5.

To give a brief overview of what the implant is like, it starts with the internal device which will do the work of the damaged cochlea to provide sound signals to the brain. Then there is the external device called the processor. Picture a big hearing aid (or bluetooth) which hangs over the ear, but it doesn’t go into her ear it is connected to a transmitter that will magnetically stick to her head. I know it sounds very sci-fi, but this “bionic ear” technology is being called the biggest medical advancement of the 21st century and it will allow my daughter to hear!

So as you can see it’s been a major process and a lot of life changing decisions, but we feel confident in the choice we’ve made and have a peace going into this surgery. SJ will be operated on this Monday and will come home the next day. She should bounce back within days after surgery and will have the device activated in about 3 weeks after it has had time to heal. We will keep everyone updated.

By |2023-06-12T06:23:43+00:00October 30, 2012|Cochlear Implants, Uncategorized|2 Comments
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Helping Her Hear

It wasn’t exactly intentional, but between maternity posts, photos, and updates I have been blogging about baby stuff exclusively for over a month now. I hate to admit it, but there was a big part of me throughout this pregnancy that just didn’t understand why the Lord would bless us with this gift during a time when it seemed so “inconvenient”.

We found out we were pregnant just a month before we began the unexpected journey of discovering that our daughter is deaf. If it had been MY plan I would have found out about the hearing loss first and then decided to hold off on having any more children until after we felt like we had a handle on everything, but God had a different plan and without a doubt a better one!

Having E has been such a blessing for a thousand different reasons. One of them being the joy it has brought us in this season. SJ is having major surgery in less than two weeks. She is going to have a cochlear implant device on her right side. You didn’t know that because I hadn’t mentioned it. It’s a huge deal, but I haven’t really been focused on it until now, because lately it’s been all about the new person in our family, and rightfully so. I don’t know how to express how genuinely distracted I’ve been and it feels great. For the majority of my pregnancy I felt guilty for not putting enough focus on the baby, but all that has changed.

 I know most parents worry after they have a child that they could NEVER love another baby the way they do the first one. I hear it all the time. Then they have another baby and it turns out their love just grows and they fall in love again. I was worried about the chore of balancing another child in the middle of this pressure filled season. How naive I was! Loving this baby isn’t a chore at all, it’s a relief! I feel all gushy and sugary and it’s just what the doctor ordered. I know that having 3 kids will bring new challenges and stretch me in ways I never imagined, but I also know the rewards outweigh all of the struggles.

Having said all that, the past month has been a positive break from all the craziness that this year has brought, but the truth is I am ready to get back to it. It’s time to take the plunge when it comes to helping our daughter. She gets the cochlear implant on November 5th. It will be at least 3 weeks of healing before they will activate her and even then it will be a little sound at a time for her to adjust to. The unexpected journey we began 7 months ago is really just beginning and the next 2+ years we will be pulling from all our resources to intensely work with SJ toward the goal of hearing and speech. It could mean moving somewhere for schooling. It will probably include a surgery on her left ear as well. It will be lots of therapy and appointments. It’s going to be hard work. It doesn’t matter though, J and I want the best for SJ and


we are all in. 
By |2015-05-14T23:15:40+00:00October 27, 2012|Uncategorized|3 Comments
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Getting Along With Baby Brother

E has been a part of our lives for three weeks now. There has been a lot of family bonding happening around here. You may be wondering how everyone is adjusting to the new member and the answer in short is everyone is doing well.
We went to the park tonight and I brought my camera because we were going to take off Z’s training wheels. He still doesn’t quite have the hang of bike riding, but I was so glad to have my camera on me because I was able to capture this spontaneous moment with the kids being extra cuddly with baby E. 

For Z this is the norm. He wants to be with E all the time. He loves to hug him, kiss him, and lavish him with compliments about how cute he is. 

SJ on the other hand has never really paid much attention although she doesn’t appear to resent the new guy either. She usually just signs baby and sometimes tries to stroke his head. Tonight though she was being really sweet with him. 
There are a few things I have caught onto with having a newborn. One thing is that when you bring home that baby it makes your other children double in size. I have to remind myself that they didn’t actually grow overnight they just seem huge compared to their tiny baby brother. I’ve also learned to relish the newborn stage of life and soak up every single moment. With Z it was tough because I wanted to skip ahead to the smiling, laughing, walking, talking stages. With SJ I didn’t worry about it AS much, but with E I am wanting to keep him this way forever. Okay, not forever, but I REALLY love this newborn stage SO MUCH, although I know I will also love the boy, and someday man, that he will become. 
By |2015-05-14T23:15:40+00:00October 23, 2012|Uncategorized|1 Comment
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Visitors

We’ve had some company come in from all over the country just to see the new little prince! First off from Texas, J’s parents and niece stayed for a week and were a huge help with the kids when I was recuperating. 

 J’s aunt from California was able to come with them as well. It was such a great week we were sad to see them all go.

Then my best friend and her sister were scheming and trying to find a way to come in from Michigan. It was a long shot, but they made it, even if it did mean J had to tow their car the last 30 miles. Yeah, it was a bummer. Their car broke down and they had to rent a car to get back.  

 
Despite car troubles we really did have a wonderful time, so much so that J had to console his crying wife when they left.

The last guest left yesterday and I am back into the swing of things. I guess this means the postpartum honeymoon stage is over and it’s time for real life motherhood to begin again!

By |2015-05-14T23:15:40+00:00October 19, 2012|Uncategorized|2 Comments
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