Two

We are coming up on TWO years of having Hadlee in our lives and I wouldn’t change a single minute of that time. People often tell me to cherish all of these baby, toddler moments because they go so fast. I do try to stay in the present, but honestly I just love each stage more and more. Maybe it’s because Hadlee had colic and reflux issues when she was a newborn, so it was rare to find her awake and not crying. Or maybe because we got (what seemed at the time) the “devastating” diagnosis that our little girl is deaf when she was only three months old. Perhaps it was the immense amount of tantrums thrown from 12-18 months, a combination of Hadlee hitting her terrible twos early and having a communication disconnect as she was learning to use her new ears. Whatever the case, I’m so glad we are where we are right now because this girl is a superstar.

Hadlee is now 23 months old and her cochlear implants have been activitated for 10 months and she is doing better than I think anyone anticipated. This girl is a never-ending chatterbox! She says (and signs) more words than I can count and is speaking in 3-4 word sentences consistently. We decided to continue using sign language because she loves it and it hasn’t hindered her speech (also it makes it super easy for Momma to understand her sometimes unintelligible toddler talk.) It is such a joy listening to her talk, she is constantly narrating what she or anyone around her is doing; just like how we have talked to her for months to help her hear and speak! It’s a constant series of “Hadlee eat crackers,” “Momma wash wash,” “Daddy home!” And so much more! On top of her speaking she’s easily learned all of her colors, shapes, numbers (up to three) and we are working on the alphabet.

Hadlee also loves listening to music, here she is trying to drum along with the high school drum line!

A few weeks ago we had a check up at CHOP with her audiologist and speech therapist. Hadlee is hearing at 20 decibels (probably even better than that but she gets bored in the listening booth pretty quickly.) Regardless, this is within the normal hearing range! I love watching what she can hear, some of those little beeps are difficult for even me to hear! This trip Hadlee didn’t feel like following the directions (when she hears a beep she’s supposed to turn and look at a screen that lights up) instead she would just repeat whatever the audiologist said. If the audiologist said “Uh Oh Hadlee,” instead of turning Hadlee would just say “Uh Oh!” So not exactly what she was supposed to do but the fact that she hears it so well, even “Shhh,” and repeats it is incredible.

Here she is the day of the appointments, she always points to her cheek when I say smile!

With the speech therapist, Hadlee turned on her show-off mode and left us all a little speechless (no pun intended) with how well she did. She has an incredible amount of focus and determination that isn’t very common in an almost two-year old. The speech therapist tested her listening, speaking and intellectual abilities using puzzles and games. Hadlee excelled at everything the speech therapist tested her with. The therapist explained that the activities she was doing with Hadlee are ones that she wouldn’t even try with a hearing child her age because they were too advanced. She also confided in us that each time Hadlee comes she has to figure out what she can do to challenge her because most things are coming easy. She now speaks using almost all of the consonants (these are some of the hardest for hearing impaired children to get down) and all of the vowels. The part that makes this the most incredible is that Hadlee has only been hearing for 10 months, so she is not expected to be speaking much more than a 10 month old does. Hadlee has exceeded those expectations and even the expectations asked of normally hearing children her age!

YAY!

Those appointments always leave me with tears in my eyes. I feel like for so long I’ve just been pushing and working to have Hadlee say one word and then for her to say multiple words and then for her to say them more clearly. It feels like a constant uphill battle. We get to the top of one mountain and then her teeth come in, or she gets sick and we slide back down and have to start at the beginning. She would talk so much one day and then hardly say a thing for days. A lot of this also had to do with Hadlee being a late walker. With the help of physical therapy Hadlee really only started walking well by herself six months ago at 17 months. So during that time her brain was working on learning to walk and speaking was pushed to the background. Since she accomplished walking she has really taken off with speaking.

We work and push so hard even now that it seems she is so far ahead because that’s the point. She needs to be further ahead so that when she’s mainstreamed with her hearing peers she won’t have to work four times as hard, hopefully it will only be two times as hard. She will always have to work harder because hearing will still be difficult for her. One on one you wouldn’t be able to notice a difference, she speaks and listens so well you would never know she is deaf. But in a room full of people  who are talking and noises are all around, I notice the struggle. I notice how hard she works to understand what is being said and it’s no wonder why she gets upset and tires so quickly in those situations. It’s also the reason why I’m so glad we’ve stuck with sign language, I love that I can communicate so easily with her in a loud room or when her ears are off.

That’s the “quick” update on our sweet Hadlee. I feel like I could write for ages about this girl, how sweet and silly she is, how she works so hard to get everyone around her to laugh…but will spare you all the ramblings 😂. We still have therapy three times a week with a wonderful speech therapist and a teacher of the deaf. I have no doubt it is because of the amazing team and supporters around us that Hadlee is doing so well. I’m so grateful for them and for the grandparents who are so willing to take Hadlee and give us a break; especially now that I’ve been struggling to find energy….little family update, Hadlee is going to be a big sister! We are so excited and know Hadlee will take her role as the older sibling very seriously, she loves babies.

So it feels like another season is coming to an end and again I’m finding it difficult to feel anything but excitement about what’s to come and so content with our present as well. Thank you all for reading and following our story, I know God has some incredible things in store for our sweet Hadlee and our growing family. We are looking forward to what comes next!

Easy

“Easy” -the word that our church has been doing a sermon on the last couple of Sundays, and how relevant it has been in my life. A quote shared today by F. Scott Fitzgerald stuck with me, partially because it’s terribly written but also because of the truth it holds, “Nothing any good isn’t hard.” Raising a child with extra needs is far from easy, but it is so very good…. Let me catch up up on how Hadlee is doing.

3 months ago Hadlee had surgery to receive her cochlear implants! We were obviously nervous for the day because surgery, especially for a baby, is always frightening. The night before her surgery our parents came over to pray over us. It was a night full of love and encouragement, and at the end of the night our sweet Hadlee signed her first word, “kitty.” It was something so simple, but it felt like an immediate answer to prayer. Hadlee was going to do amazing, That one word that she will continue to sign over and over filled me with peace.

The surgery went beautifully and we were able to bring our sweet girl home the same day. The recovery time seemed like no time at all. By the next day Hadlee was just about back to herself, wanting to play and crawl around as usual.

Sweet girl after surgery

Unfortunately 3 days later we were back at CHOP because Hadlee came down with a fever that wouldn’t go down even with medicine. The doctors determined that she had an infection around her left incision and also had influenza. She was put on intravenous fluids and antibiotics for the entire stay and she was not allowed to leave the little room for fear she would pass along her sickness. It was an awful and tiring four days, but during that stay we saw families and children who had been at the hospital for much longer and had no idea when they would be able to leave. As terrible and weary as we felt, there are so many families with worse scenarios. We left happy to bring our baby home and with a better perspective and greater appreciation for our situation.

The first month after the surgery was a wonderful reprieve for our family. Hadlee couldn’t wear hearing aids anymore and we had to wait for her incisions to heal before she could get the processors (outer part of the cochlears) turned on. So during that month I didn’t have to do her listening therapies daily, I didn’t need to be making sure that she was getting constant sound stimulation. However, during that month, Hadlee’s language grew by leaps and bounds! No she wasn’t speaking, but she started signing EVERYTHING! It was incredible. We have been signing with her since she was 3 months old but she would rarely sign back, instead she preferred to use her voice to get her point across. She always understood what we were signing, but it wasn’t until she had absolutely no hearing that she started signing back. The fact that my sweet girl understood language and how to communicate with me was just incredible!

This girl loves her baby doll and Sophie the cat!

In January the big day arrived for Hadlee to get her new “ears” turned on, we were so excited! I was trying my best to not expect a reaction from Hadlee because the audiologists turn up the sound very slowly so that the child will bond with the implants. Imagine the fear of hearing something for the first time, if the sound is too loud it could scar a child for a long time and make them not want to wear their processors. We were told not to expect a reaction because she would be on one of the lowest volumes- but she did react! It scared her for a few seconds but within a minute she was playing with the processors on and didn’t think anything of it. I was so proud of her. Here is a video of the moment Hadlee first heard. It took her a few days to really warm up to her new ears. If you remember, “hearing” with cochlear implants is completely different than normal hearing or hearing with aids. The sound is mechanical, to those who hear normally voices would sound like a robot. But because she had very little to no hearing, this is all she will ever know and will be her normal hearing. (Those who are very curious can look up videos on YouTube that show what people with cochlear implants hear.) So even though she has heard a bit before with the use of hearing aids, the sound with the implants was completely new and something she would have to get used to. By the end of the first week Hadlee was pointing to her processors in the morning for me to put them on, boy does this girl love hearing!

I think most people see videos of babies hearing for the first time and say “what a miracle that they can hear!” And it is, but there is so much more work that goes into it, especially for kids with cochlear implants. Implants aren’t a magical button that you press and now your child hears perfectly and understands everything, it’s more like a tool that can be used to teach a child how to hear, how to understand and how to speak. It’s not perfect and it takes more work than I could have imagined.

Hadlee has now been hearing for two months and they have been some very difficult months. In January when she got her processors, she was considered a new born as far as hearing goes, so she was behind by over a year to her hearing peers. This means that it is crucial that we have her processors on whenever she is awake and we do therapies and sound stimulation with her all day. We are basically teaching her how to hear, something that comes naturally for the majority of the population.

A typical day with my sweet girl consists of waking up before the sun (she is an early riser) we go downstairs to put her ears on and I start making her favorite breakfast (2 eggs, scrambled.) But I don’t just make them, I’m constantly talking, narrating every thing that I do, *crack an egg* “Crack! Hadlee did you hear that? Egg goes crack!” *stir the eggs* “Hadlee watch, round round round round round!” *cat comes down the stairs* “Listen! Did you hear Luna’s bell??” And so goes breakfast, talking and accentuating certain words and vowels, listening to the sounds around me so I can point them out to Hadlee. I point out when the heat comes on because it’s the first time she’s heard it and didn’t know what it was. I point out a car horn going off so she knows what made the sound. Then we go and play. Playing with Hadlee isn’t just sitting watching what she does, it’s being ‘on’ constantly. It’s playing with blocks and saying “up up up!” It’s making up a jingle for feeding her baby that has good vowels and consonants “Yum yum baby, Pat! Pat! Pat!” And her favorite activity, reading books where I both sign and speak. She has actually started signing to herself while reading books! Here is a quick video.

I think for many parents all of this might come a little easier or naturally. I myself have never been very animated or prone to talking for long periods of time. It’s made even more difficult when you are with a baby who can’t quite hold a conversation. So with giving Hadlee the constant attention and sound stimulation she not only needs but craves coupled with dealing with what all babies her age go through (teething, colds, learning to walk,) it’s safe to say she keeps me busy and in bed by 8pm. It’s God’s strength alone that helps me wake up and start it all over again the next day.

All of this work, the sessions we have three times a week with our speech therapists and the many tears I’ve cried after an exhausting day have not been for naught. Hadlee is saying more consonant and vowel sounds than she ever has before! After hearing for only 8 weeks she started saying “uh oh,” the next week she said “Mama.” Hadlee is living in a whole new world! As tiresome as pointing out sounds can get, I’m still in awe that she hears them. A simple walk around the block has her head spinning around spotting the chirping birds and rustling leaves. It’s a beautiful thing to see.

A couple of weeks ago Hadlee had her 1 year evaluation meeting with early intervention (I still can’t believe it’s been over a year of therapies!) they tested her cognitive level, motor skills, speech, the normal baby stuff. At 14 months she was well above average for her fine motor skills, testing at 18 month level. Her cognitive tests showed her at the level of a 22 month old (!) But the most exciting part was that she would be well above average with language if they counted sign! She signs 24 words and understands countless more. I love her zest for language. She has always been great at communicating what she wants, but I love how now she’s really grasping what language is and how to use it.

Hadlee is 15 months old now and is making new sounds and signing new words almost every day! She loves listening to music and will crawl over to the record player to turn it on and start dancing; here is a must-see video of it! She is taking many steps by herself but is still a bit shaky. Raising this girl has been the biggest blessing. This wasn’t what we were dreaming parenthood would be like, but in a lot of ways it’s better. Everything she accomplishes is proof of her stubborn yet sweet nature, qualities that God knew she will need her whole life. She has been hearing as long as a 2-month old and in that time she has come so far, I can’t wait to see how this special girl impacts our world even further.

She’s a happy girl!

Black and White

Hadlee turns one in 2 days, so I thought now would be a great time for an update….and as 4 months has passed, much has happened.

At 8 months old, Hadlee had ear tubes put in due to 3 back-to-back ear infections. The tubes worked beautifully, she hasn’t had an ear infection since and my terrible little sleeper finally started sleeping through the night! Another thing that changed was Hadlee’s hearing.

The first behavioral hearing test after her tubes were put in showed an increase in her hearing with hearing aids. The hearing tests done before the tubes lined up with her initial diagnosis of severe to profound sensorineural hearing loss; after the tubes it was looking like she was hearing at the moderate to severe level. She went from hearing 50+ decibles aided to consistently responding to 35 decibel tones in the last few months, each behavioral test showing her hearing seeming to improve.  (Decibels are the measurement for sound; zero decibles means perfect hearing)

Audiologists and doctors were a bit perplexed by the amount that Hadlee was hearing. She was responding to SO many things, especially her name! I never thought she would hear her name before going through the surgery. I caught one of those special moments on camera

We were told that she may not even qualify for the cochlear implants any longer based on her behavioral test results. You can imagine our surprise and (cautious) excitement. Is her hearing getting better?! Will she no longer be considered deaf?  I felt elated, yet also terrified. I had finally gotten to the point where I was so at peace for Hadlee to get cochlear implants. I had accepted the fact that she wouldn’t be able to speak without them.

Our cochlear implant audiologist wanted to get a clear idea of what exactly was going on with Hadlee’s hearing, so she ordered a sedated ABR (auditory brain response) test. This is the test she took twice, once at 6 weeks another a few weeks later. Because she is older now and not sleeping like a new born, she needed to be put under in order to get a clear result. The audiologist warned us that the ABRs are being scheduled months out which would be after the date of her surgery. I was told to expect a call from a scheduler in a few weeks; I got a call the next day! They had an opening on November 29; 8 days before her cochlear implant surgery.

In the weeks before the ABR, I felt peace. If the test showed she heard too much to get the implants, hallelujah! If the results were the same, it didn’t change anything which was great too! But as the days drew nearer, all I could fixate on is everything Hadlee was responding to. She heard cars going by, Austin rolling the trash bin out, consistently turning when her name was called and a myriad of other sounds. I started getting worried that she actually wouldn’t be qualified for the impants. And what if she really couldn’t hear as clearly as she seems to? What if she falls even further behind her hearing peers because we didn’t push for the surgery sooner?  But then I got excited that those “what ifs” are irrelevant. Wouldn’t it be a miricale if she didn’t need the surgery anymore?

A roller coaster is the only way to describe my emotions. Excited if she could still get the surgery; devastated if she couldn’t. Ecstatic if she was hearing too much to get the surgery; heart broken if she couldn’t be given a great chance of speech through implants. I just wanted a black and white answer. Either she couldn’t hear anything and needed implants or she heard everything and didn’t need them.

The day of the ABR arrived faster than I could have anticipated. I helped hold my baby girl down as they tried to find a vein for the IV for sedation. I cried as I left the room after she finally went to sleep. There was so much internal turmoil. We waited over an hour while the test was being done. During that time I prayed. I finally let myself pray for a miracle. I prayed that Hadlee would respond to sounds she had never responded to before. I prayed for healing, the thing I’ve been too afraid to pray for before because I didn’t think it was an option.

We got the call that the test was completed. I fully expected the audiologist to tell me that she was now at the moderate to severe level. That beyond any understanding, Hadlee’s hearing got better….I would love to tell you the easy story that my daughter is completely healed and can hear everything that you and I can hear, but instead I’m going to tell you an even better story. I’m going to tell you what the audiologist said. That Hadlee was responding to the ABR this time, unlike the last two tests. But that even though she was responding, she is still in the severe to profound range of hearing loss. He said that she responds so well to the hearing aids because she is so advanced and intelligent and because we have worked with her from a very young age to respond to everything she hears.

Real talk here, when I first heard the results I didn’t want to believe them. It felt like I was hearing that my baby was deaf all over again. It felt like I had prayed in vain, that God was playing a joke on me. I was devestated.

But what was I sad about? All I had wanted was a black and white answer. For someone to tell me what to do. I prayed for a miracle and for healing. All of that happened. We were told that Hadlee can’t hear well enough for speech even with hearing aids (black and white.) We were told that if we wanted Hadlee to hear us clearly she would need the implants (advise us what to do.) We were told that it was because all of the hard work we put in to having Hadlee’s hearing aids in all the time and working with her speech therapies daily that she was able to respond so well and have so much stimulation through hearing aids (healing…for me.) Not a day has gone by that I feel like I’m not doing enough for my daughter. That if I worked with her longer, that if I played, spoke, signed and was patient with her every moment of every day that she would be making more sounds. That she would be saying “Mama” and “Dada” and signing “kitty.”

No this wasn’t the miracle I was expecting, this wasn’t the result I was anticipating and praying for, but it was the one I needed. I’m on the road to being easier on myself. To staying in the moment to watch my incredibly smart and sweet baby grow up into an incredible woman.

So where are we now? We’ve decided to stick with Hadlee’s scheduled cochlear implant surgery date. She will be receiving bilateral cochlear implants on Wednesday December 7th (8 days!) Please pray that Hadlee stays healthy until her surgery and that there are no complications. It is a 6 hour surgery and we will (hopefully) be able to take our sweet girl home the same day. Pray also that the surgery is successful and that Hadlee gains the gift of hearing. Thank you for reading and allowing me to share our story with you.

4 Months Later

Summer has a way of tricking you into thinking you will have a ton of time to catch up on things and relax, when in reality it flies by and is even more busy than the rest of the year. This is my sad attempt to explain why it’s taken me so long to post an update. Our summer has been filled with family vacations, get togethers with friends, and mostly fixing up a foreclosed home we bought back in May. Funny story about this house, we bought it without Austin ever even seeing it! We bought it from an online auction that was ending at 2:00 on the day I walked through, I fell in love with it so we went for it. We are so glad we did. After settling on the house we soon met one of our next-door neighbors, the sweetest lady from England (yes imagine the best accent asking you over for a cup of tea,) and her husband and two kids. She met Hadlee and saw her hearing aids…long story short, her brother and sister in-law are deaf and she knows a good bit of sign language! If anyone calls that just a coincidence, you are insane. I call that providence.

We lived with my INCREDIBLE in-laws for 6 weeks while we worked on renovating the kitchen. Now it’s August, the renovations are mostly finished and we are moved in, and loving the extra space  that allows us to have more room to play with Hadlee and our dog. It was a very stressful time in our lives, between Hadlee’s appointments and just trying to keep up with our very active baby, we were working at the house every weeknight and spending about 30 hours every weekend there to get things finished. Just to prove I’m not lying, here is a before and after of the kitchen in our new home….yeah that was a lot of work. We are so thankful to our amazing families and friends for their help.

(Apologies for the terrible iphone quality pictures)

Before….

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After…

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So now you can all understand why it’s taken me so long to write a new blog. There have been some exciting things that have happened with Hadlee, I hardly know where to begin!

Last update, we were going to the geneticist to possibly find a genetic disorder that caused Hadlee’s inner ears to not be  working properly. The genetic doctor found no physical abnormalities that suggested a disorder (good news because there are some genetic abnormailities that would terminate the possibility of getting the cochlear implants!) We were told that there is a blood test that can be done that will test our genes and Hadlee’s to determine the cause of her hearing loss. Unfortunately, our insurance will not cover the cost and we don’t have the $10,000 needed for the test. We would like to eventually save up and get the test done; not to deter us from having another child (honestly we would LOVE another deaf baby, they really are so special,) but even for Hadlee when she has children. It may be important for her to know whether it is a gene that she could pass down or if it was simply a fluke.

Hadlee also had her vision checked because many times vision problems and hearing loss go hand in hand. I wasn’t nervous for this test at all. Anyone who meets Hadlee can tell she has great eye contact and has never had an issue with following an object with her eyes. The doctor performed a few tests, one of them was an instrument used to screen her vision. The optometrist found that Hadlee is slightly more farsighted than normal, a term he called hyperopia. The doctor wasn’t too concerned about this discovery, all babies are farsighted for a while until their eyes mature. Hadlee is simply a little worse than normal, so she needs to get her eyes checked again in 9 months as opposed to a year. He found nothing that would prevent her from getting the implants, but she may need glasses (who doesn’t love a baby in tiny glasses?!) Obviously we are hoping and praying that her vision corrects itself, needing glasses would mean even more doctor’s visits and another thing to try not to lose or break, a tall order for a toddler.

So great news from both appointments! A few weeks later we met with the cochlear implant team (CI Audiologist and CI Speech Pathologist.) After meeting with us and reviewing Hadlee’s tests and diagnosis, we got the call that she was approved to receive the implants and that we could proceed with the surgery.

After months of pushing to get the soonest appointments, constant calls to our insurance companies and so many difficult moments that come along with raising a deaf baby, there was finally resolution. No more fighting, no more questioning whether it would be a possibility. It left me both elated and deflated. As soon as we found out Hadlee’s diagnosis we have been going at full speed ahead, what else can you do when all tests and meetings need to be completed in 6 months? We finally got all of the answers and results we were hoping for, but now I am somewhat unsure if this is the right decision.

As Hadlee has gotten older, it is becoming more apparent what she can and cannot hear. We have done a few behavioral testings at the audiologist where she is placed in a sound proof room and beeping tones come through speakers on either side of her. When she hears a sound, she turns toward it and is rewarded with a toy that lights up. The room is very similar to this one.

I was expecting Hadlee to not respond to any of the sounds, but she has been responding to so many of them! She can hear low frequency sounds, meaning she should be able to hear low and loud sounds such as a piano or a dog barking. She may also be able to hear some low voices and speech sounds, especially words that have the letters “M” or “B” because they have a low frequency phonetic. HOW COOL IS THAT?! Unfortunately what she hears is still not enough to be able to speak or communicate fully. Basically, her initial diagnosis hasn’t changed, but everyone’s ears are unique and respond differently to hearing aids. It seems as though Hadlee’s ears are responding well to the hearing aids, but we don’t believe it is enough that she wouldn’t need to get the implants.

I suppose most of this anxiety that is plaguing me now is just the unknown. The what-if something goes wrong. The desire to ask my baby what she wants to do so I don’t have to make the decision for her. Isn’t that just the bane of every parent? We want so much to do what is best for our children, and I know from experience that most of the time parents are right (yes it has taken me 24 years and a child of my own to admit that.) But this is a decision I wish we didn’t have to make.

I love my daughter more than I could have ever imagined and I would not change one thing about everything we have gone through. She is so special, smart and absolutely beautiful. We don’t ever want to change who she is, but we want to give her the best opportunity to succeed in life. We want her to be able to communicate with everyone and hear everything. Just to be able to have her hear me call her down to dinner when I’m downstairs and she’s upstairs, little things like that I will never take for granted; and her ability to hear that is directly related to what we decide to do right now.

Next week we meet with the ENT surgeon again to set up the date for her surgery. While we are there we are also going to request that Hadlee gets another ABR Hearing test. This test is pass or fail and will tell us once and for all the amount of Hadlee’s hearing loss and whether she needs the implants. The doctor will also advise us on what to do about the amount of ear infections Hadlee has had. Two in one month is not a good sign, especially in the summer when they are not as common. There is a possibility that she might get ear tubes put in at the same time as her surgery…even more decisions to be made.

I know that fear and anxiety do not come from God. Our Father is the opposite of those feelings, He is hope, strength and peace. As the date of her surgery grows near, we would love to ask all of our friends and family to keep us in your prayers. We are human and flawed and unfortunately I let many of these emotions take over at times. Pray for peace, pray for clarity, and pray for healing. I have no doubt that our God is a God of miracles and he can heal in many ways. I know that through His strength alone we will not only get through this time, but we will flourish. Whatever decisions are made, we are in His hands.

Here is our beautiful daughter 4 months later, I can hardly believe she’s already 8 months old! And here is a link to her laughing because it’s the best sound on earth! 

 

 

 

 

 

Purpose

I often think back to when I was pregnant and laugh at all of my silly fears. Austin and I decided when I was pregnant that I would stop working to stay home with our daughter. It made more sense for us financially to not put her into day care or to hire a nanny. This was such a hard decision, I loved working. For as long as I can remember, work was a huge part of my identity. I worried that I would lose part of myself and that people would judge me for being that old fashioned stay at home mom, because I used to be one of those people. I was scared that I would be bored being at home; let me tell you since Hadlee has been born, I have not been bored even once. After years of praying that God would show me my passions and purpose, He gave me a beautiful deaf daughter and a platform to share our journey and struggles so that they might be testament to His goodness.

So let me tell you where we are now with this journey.

Two months ago Hadlee got her MRI to make sure that her cochleas were formed correctly and there wasn’t any damage. The test came back that there were no abnormalities, such a blessing! We also had her kidneys checked and they are also in working order. This past Thursday Hadlee had an EKG to test her heart. She was hooked up to 13 wires and didn’t cry once. We are still waiting to hear about the results, but are hopeful her heart is perfectly fine.

So finally, we are down to two more tests. Hadlee needs her eyes checked and we will also be undergoing genetic testing. We are hoping that the genetic testing will give us a better idea of why she was born deaf. There is a possibility that Austin and I both carry a very recessive gene that caused Hadlee’s deafness.

About a month ago, Hadlee got hearing aids! She is so young that is difficult to tell whether they help her hear at all, but we are hoping that they stimulate her cochlear nerves even just a little so that the implants have a better chance of working. I know I talk a lot about cochlear implants, here is a great website and video that will explain in layman’s term what the implants are and how they help: COCHLEAR IMPLANTS. We drive to Exton branch of CHOP every few weeks to get new molds for her hearing aids because she outgrows them so quickly. But I think they suit her pretty well, she looks so pretty in pink!

We have also been meeting with a speech therapist every other week. This lady has been absolutely wonderful! She has worked with deaf children her whole life and the amount of knowledge she has in incredible. She has been teaching me so much about why Hadlee does certain things and reacts certain ways. For example, she explained that all deaf babies HATE the carseat, especially at night. Hadlee is no exception, there have been many 30+ minute car rides where she screamed the entire time. The speech therapist said that deaf babies feel that they are all alone at night in car seats. They can’t see or hear their parents, how frightening that must be! Our speech therapist has also calmed my fears about why Hadlee can get so grumpy.

Deaf babies and children are always more tired than hearing ones because it takes so much more energy to be actively looking around. If you think about it, Hadlee can’t hear what’s going on around her, so she has to rely on her sight, smell and touch. You will never see my daughter sitting still when she is awake, she is constantly turning her head and looking at everything around her. A friend of mine compared Hadlee to an adult with how well she focuses and pays attention when you talk to her. All of this focus exhausts her, so she gets sleepy and then grumpy, but fights sleep because she needs to know whats going on around her. We went to a baby shower a couple of weeks ago and Hadlee cried almost the entire time. There was nothing I could do to soothe her. I knew she was tired, but there were so many people around, so much to see so she wouldn’t sleep. There is nothing more heartbreaking and frustrating for a mother than the inability to calm down your baby; especially when there are other moms around with babies who are angels and don’t need constant attention and calming. (Ladies, I encourage you to not give the side-eye to a mother with a constantly screaming baby. You never know what struggles they are dealing with.)

That day it kind of hit me that this journey that we are on is going to be more different and difficult than I could have imagined. As Hadlee is getting older, she is awake longer than she is sleeping. She is getting more aware of her surroundings and needs more attention than most babies because if she is just left alone, she doesn’t get the visual stimulation that she needs.

Now not every day is bad. Most days Hadlee is just the happiest and sweetest baby you will ever meet. She is special and advanced in many ways and I am so proud to be her mother. I am learning how to soothe her and we have just about come out of the colic stage. I found out after months of crying, that Hadlee has reflux issues. I stopped eating or drinking anything with dairy and it’s like I have a brand new daughter!

On top of all of her doctors appointments, speech therapist meetings Austin and I have also been taking sign language classes once a week and are slowly learning the best way to communicate to Hadlee right now. We have been loving the two hours learning with each other, the classes are so much fun! If you’re looking for a fun and unique date night idea, I would highly suggest taking a class.

I can’t imagine how I would be able to satisfy all of Hadlee’s needs, the doctors appointments, speech therapy, extra attention, if I was still working. Isn’t it awesome how God works? I had this huge fear that if I wasn’t working I wouldn’t be satisfied, but God had a plan all along and it is the sweetest and most beautiful thing I could have ever imagined..

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She’s Yours

 

Two weeks ago Hadlee had her MRI. Most children need to be sedated so that they don’t move during the testing, but because Hadlee is so young and sleeps for long periods of time, the doctor decided she could get her MRI un-sedated. We were told to bring Hadlee to the MRI appointment hungry and tired. We succeeded with that task and I’m sure we were known around CHOP as “those parents” with the obnoxious crying baby; I had never seen her so tired. Hadlee fell asleep right before going in for her testing just as planned. Austin and I had to stay in the waiting room until the test was over. The test was only to take 20 minutes, I was praying the whole time that she would be sleeping well and they would get clear results. 40 minutes later a nurse came into the room and told me to come and feed Hadlee more because she was awake and screaming. My heart sank thinking we would have to wait 4 more months to take this test again and my little baby would have to be sedated. I fed Hadlee, calmed her down, laid her on the MRI table and did my best to get her to sleep. Hadlee is a little fighter. I would get her to sleep and then after a few minutes she would stir and her eyes would be wide open. I could tell that she was absolutely exhausted, but I’m sure a combination of a new environment and being overly-tired was keeping her from sleeping. I was so stressed out because we were on a time crunch, praying that God would make her sleep while I was hugging Hadlee on the table, rubbing her head and holding her hand which usually puts her to sleep. I was getting frustrated because I kept praying, believing God could get her to sleep but wondering why He wouldn’t. She was doing this cycle of sleeping and then waking herself up for 40 minutes. I finally gave up, physically stepped back from Hadlee and said to God, “She’s yours.” Nothing I was doing was working, Hadlee is God’s child and I knew He already planned out what was going to happen before she was even conceived. I completely let go of the situation and a minute later, my stubborn and sleepy baby was sound asleep. Praise God! They completed the test and she slept the whole way through it. The next day we got the results; there were no abnormalities found! This means she has both of her cochleae and so far is a great candidate for the cochlear implants. What a relief to find this out so we have a better idea of what direction we will be taking from this point. Thank you to all of the prayer warriors praying for our family on this day, they were heard and answered!

The weeks following the appointment have been relatively uneventful. Last week was the first in what feels like months since we didn’t have a doctor’s appointment, it was a much needed reprieve. The next couple of weeks will again be riddled with appointments and stresses. We are starting the process of applying for Medicaid which will pay for all expenses dealing with hearing since our own insurance does not cover anything dealing with hearing loss. Before we can start that application, we need to apply for Social Security, for which we will get denied. It’s all so confusing and a little stressful as the bills are already piling up and we feel that we can’t make any more appointments before we are insured by Medicaid. So thankful we have a Lord who is even in control of finances and that we are surrounded by others who have gone through this process and can help us. We are praying now that once we are able to apply for Medicaid that it goes through quickly and they are able to back-pay for the testing that has already been completed.

Next week I am meeting with some people from Early Intervention, a government program that helps babies and toddlers with disabilities. I’m so excited for this meeting. They will assess Hadlee’s development and needs and then teach me how to best communicate and interact with her without the use of hearing. Early Intervention will be helping us until Hadlee is three and then IU13 will be assisting us. I cannot wait to learn how to be the best mother I can be for my deaf child.

Austin and I are also learning sign language to better communicate with Hadlee. Regardless of whether she gets the cochlear implants and they work perfectly so she can hear, we want to learn and teach Hadlee to sign. When the implants are out, Hadlee won’t be able to hear at all so when it’s bath time or bed time, we want to still be able to communicate with her. Languages have never come easily for me, a big prayer of mine right now is that sign language just makes sense to me and that I would be able to learn it quickly and well. A dear friend sent a video that really touched my heart. If, for whatever reason, Hadlee doesn’t get the implants sign language will be her main way of communicating. How amazing would it be if everyone around her could also communicate in this way? Please watch this short but awesome video here.

Although things seem to be calming down and our path has started to become more clear, I know that the future holds some difficult choices and stressful times. When I began this journey I didn’t think I had the courage to complete it or do it well, but God has given me a strength that is not my own. Every day He is teaching me to stop trying to do everything on my own and give all of my struggles to Him. He has taught me to pray for His will to be done in His timing, not my own. The power of prayer is incredible. God’s will will always be done, but isn’t it amazing how miracles happen when we pray?

And isn’t Hadlee a beautiful miracle, herself?

Profoundly Special

For some reason this post has been even more difficult for me to write than the first one. These last two weeks have just been packed full of a range of emotions and a truck load of information. Some days it feels like my head is going to explode. From the beginning I knew that there were going to be days and weeks that are worse than others, but through it all God is working.

The beginning of this week we attended a potluck thrown by the families of the support group we joined a few weeks ago on Facebook. I had the jitters that accompany meeting a bunch of new people for the first time; I tend to be a bit socially awkward and grow quiet in large groups. I prayed before going for God to give me peace and confidence and He came through in a big way. These families are some of the kindest people we have ever met! They immediately surrounded us and welcomed us with open arms and a wealth of information and support. All of the families in attendance had children who had Cochlear Implants, and the entire night was spent talking to parents who have stood in the same place we are at right now. They have already been through the tough diagnosis, the many trips to CHOP, and the multitude of stresses that come along with having a deaf child. Each parent shared their journey and were so open and honest about how they felt through each stage, they made it so easy for us to open up as well. I found myself holding back tears the whole night as I heard all of their stories, so similar to my own. Words can hardly express the emotions that I felt being surrounded by people who understood. The mothers sympathized with my feelings of sorrow and guilt, while the men understood Austin’s emotions…..These wonderful parents gave us valuable insight about what our next steps should be because they had already walked this path. On top of all of that, we were able to meet five very special deaf children who all had cochlear implants and are absolutely excelling. What a blessing to watch them interact, you would never be able to tell that any of these children had a disability. We came out of the potluck with smiles glued to our faces. I felt such excitement and hope! Not only for Hadlee’s chances of being able to communicate and thrive through the use of Cochlear Implants, but also because we found a group of families that will be the best support and group of friends we could have asked for. All of the knowledge gleaned from that night also gave me confidence for Hadlee’s appointment at the specialist in a few days.

Hadlee’s specialist appointment was at the Exton branch of CHOP. This appointment was basically a re-test of the original one that gave us her diagnosis; the Auditory Brainstem Response test.  Again, Hadlee was asleep and hooked up to the wires that test brain activity.

The testing went on for what felt like hours. This time, we knew what to expect the results to be. We were hoping that she might have just a little bit of hearing. Maybe if she did, hearing aids would help enough that we wouldn’t even have to decide whether she should have the highly invasive Cochlear Implant surgery. The audiologist was explained what the results were as the test was happening. She tested a range of sounds (high and low) with a range of volumes (soft to loud). Hadlee had no reaction to any of the sounds with the exception of the highest sound at the loudest volume. The audiologist explained that she might be able to hear that sound, or she may have been reacting to the vibration that occurs when the earbuds are turned up that loud. Basically, the test was telling us that Hadlee has sensorineural loss severe to profound. There it was again, the diagnosis that Hadlee is profoundly deaf. The audiologist told us the next step would be to get Hadlee hearing aids. Every deaf child is required to use hearing aids just in case there is a chance they would help her hear. We were also to meet with an ENT doctor at CHOP who would potentially perform the implant surgery, should we decide to pursue that option. The audiologist voiced her fear that the ENT doctor would not be able to see us in a short amount of time because he is busy, but that we should meet with the doctor quickly so that Hadlee can get approved for an MRI and not have to be sedated because she is so young. So we were on a time crunch.

Before we left the audiologist did the molds for Hadlee’s hearing aids. I was able to choose if we wanted the hearing aids to be clear or colored. I chose bright pink and purple swirls. I want more than anything for Hadlee to be proud of being deaf. I never want her to feel embarassed or any less of the amazing girl she is. What better way to instill confidence than rocking some bright, awesome-looking hearing aids?!

We drove home from the appointment feeling stressed, but also hopeful and full of a strength that was not our own. I fully expected to be a wreck after this appointment, but God had us in his hands and I kept feeling like, we got this! Every step in this journey has just gotten more difficult, but we have a savior who is bigger than science and bigger than any diagnosis thrown our way.

As we pulled in front of our house after the appointment, my phone rang. It was CHOP calling to confirm an appointment that had been made with Dr. Javia, the ENT surgeon, in two days…TWO DAYS! From what our audiologist said, I wasn’t expecting to be able to meet with him for a month at least. God was already making miracles happen.

We met with Dr. Javia who broke down the many steps we need to take if we would want to do the Cochlear Implant surgery. The first step would be to get an MRI done to see if everything in the ear is intact. Some children are born without cochlea, which means they can’t get the surgery. He also explained that even if she has both cochlea, there could be damage to the nerve that would make them unable to perform the surgery, or even if they could, the implants may not work as well. On top of the MRI Hadlee will have to get many tests done because deafness can be a sign of something else going wrong. They need to test her kidneys because the ears and kidneys develop at the same time, so if the hearing loss happened in the womb, the kidneys could also be affected. She will also have to have an EKG to make sure her heart is working well. These are just a couple of a multitude of tests that need to be completed to rule out some rare conditions that can have hearing loss as a side effect. So basically, there are a ton of reasons why she may not be able to have the implant surgery, and there is a possibility that she may have some other health conditions.

But one step at a time. He told us to book the MRI and we will go from there to see if she is qualified for the surgery. I took the first MRI appointment I could so that we could attempt to do one without having to sedate Hadlee. Our appointment is Monday February 15,  at 4:00.

Talk about stress level going up. This week went from being so confident and excited about Hadlee getting the implant surgery so she could be able to hear and communicate more easily to wondering if we should or if would even be able to do the implants. And what if there is something more serious going on? What if we do the wrong thing? There are too many “What ifs” to count.

But here is what we know.

We are not alone through all of this. God has his mighty hand and is holding us up when we feel like falling. He is showing His grace and giving us peace where there is chaos. When I feel like pulling my hair out or giving up, He tells me to get back up. God reminds me every day what a beautiful and special little girl He has given us. She is profoundly special. So whether Hadlee is able to get the implants and is able to somewhat hear my voice or play the piano, or whether we solely communicate with her through the beautiful language that signing is; God will see us through it all. He will give us patience and ability.

Your prayers are being felt and are so very needed this week. Tomorrow more than ever Hadlee needs to be an amazing sleeper for her MRI. If she isn’t able to sleep through the test, we will need to wait until she is 6 months old and have her be sedated. We would just love to find out what is going on as soon as we can so we can prepare ourselves for the future. Please pray for sleep and also peace for Austin and I; that no matter what the result of the MRI we won’t be afraid or sad, but ready and willing. Thank you all  for your continued prayers and may our journey be a testament to the goodness of God.

 

In Oceans Deep

It has been a little over two weeks since we learned that our little Hadlee June is deaf, and so much has happened. God seems to be showing his hand in every step of this journey.

The day after we heard the news Austin and I decided to head up to my family’s cabin to get away for a couple of days. We needed time to process the new direction our family was headed. It was a weekend filled with every emotion; from crying and mourning, to laughter and hope. It was exactly what we needed. We came home feeling determined and energized, we were going to entrust our little girl and this journey to God do whatever is best for Hadlee.

The high lasted when we came home and grew stronger after I posted my first blog on this page. The outpouring of support and love was overwhelming! We are very blessed to be surrounded by amazing friends and family. In my head, I knew that I wasn’t alone in this journey, but I felt alone as a mother. I didn’t know any other mothers who had gone through this, I didn’t even personally know anyone who is deaf. How did other mothers deal with these feelings? How were they able to comfort their babies without the use of sound? I just wanted to be assured that I was doing the best that I could for my little angel.

The day after I posted my first blog, I was feeling so overwhelmed with everything that was happening and needed to get out of the house. I invited my mother in law to lunch at Terrain at Styers, a place we had been wanting to visit together for a while. I had no idea that it was about an hour away, and probably wouldn’t have chosen to go there because of how often Hadlee needs to eat, but we went anyway. Soon after we were seated, my mother in law pointed out a family that was sitting right beside us; I looked and they were all signing to one another. Tears came to my eyes at the awesome way that God works. He had me drive an hour away to show me a family: one middle aged daughter who is deaf with her hearing sister and parents. The hearing sister told me that her deaf sister is married with three children. How incredible to be shown a thriving family who went through the same struggles we are currently facing. Some may call this coincidence, but God continued to give me peace and hope through the rest of the week.

A friend of a friend on Facebook read my blog and contacted me saying that she went through the same thing recently and asked me to join a Facebook page full of parents around the lancaster area with deaf children. This page has been incredible! Immediately women were contacting me, mothers who have gone through everything themselves and so willing to offer information and encouragement. They assured me that all of my feelings were okay and normal. They gave advice for the next steps to take with doctors and told stories of their deaf children getting cochlear implants and being able to play the piano and speak. They also invited me to their monthly potluck where we could meet other families with children that had hearing loss. God knew my heart and how alone I was feeling even though I was surrounded by people, now suddenly I wasn’t alone. All of these women came beside me and gave me hope and encouragement that I was being the best mother I could be for Hadlee. I never even had to go searching for the help, He brought it to me.

As if meeting the signing family and joining this wonderful group wasn’t enough, God proved further that He is in control of this journey by introducing me to a little boy with cochlear implants and his mother. I met him while shopping, I heard him  chatting away with his mom and little sister and saw the implants; this was just two days after meeting the family at lunch, God certainly wasn’t being subtle. The family came down the same aisle I was in and I got to talking to his sweet mom. She was encouraging and the little boy was more than willing to take out his implants to show me what they looked like. After talking for a few minutes, we found out that she is also part of the facebook group and had read my first blog post, so she already knew all about Hadlee and our story. How incredible?!

But wait, there’s one more thing….

When I was in high school, I babysat for a family that had a little boy who had severe hearing loss and communicated through sign language. I was always amazed by how advanced he seemed for his age and how well he could communicate. I thought of this family soon after Hadlee’s diagnosis and wished to get in contact with the family, but couldn’t remember their names. The day after I joined the group, I got a message from a lady asking if I used to babysit for them, she is also part of the Facebook group and saw my blog and recognized me…you can’t make this stuff up folks!

What an awesome God we serve.

Austin and I are feeling so encouraged and excited to begin this journey with our sweet daughter. Are there times when I still feel overwhelmed and scared? Yes. Are there moments when I find myself crying? Absolutely. Do I think that these feelings will go away completely? No. But I believe God is in complete control, and what a calming feeling that is. Each time I feel like I can’t handle all of this, God has brought the song Oceans by Hillsong into my mind:

“Spirit lead me where my trust is without borders; let me walk upon the waters; Wherever you would call me; Take me deeper than my feet could ever wander; And my faith will be made stronger; In the presence of my Savior.”

So as we continue walking deeper into unknown waters, we ask for continued prayers for peace and strength. We have our appointment at CHOP on February 9th, please pray for wisdom for the doctors and for Austin and I.

I am looking forward to meeting other families at the potluck next week and am anxious to see how God will continue to show Himself in these  coming weeks.

Also, Hadlee is really starting to smile and it makes my heart melt! What a sweet soul.

 

The Journey Begins

Hadlee June was born on December 1 at 2:27am. She is my husband’s (Austin)  and mine first baby. The pregnancy was a surprise, but we quickly grew to love the sweet angel growing inside of me, and were so excited to finally meet her. She was absolutely beautiful and perfect in every way. Her cries and coos like music to our ears.

In the hospital, Hadlee went through the routine testing of all of her vitals; she passed them all except for her hearing test. The nurses assured us it was most likely because of how quickly (only 15 mins) I had pushed her out; fast delivered babies sometimes have fluid in their ears. We were not concerned and continued to just love on our daughter and wonder at being parents. Austin and I talked about how both of us had to have tubes in our ears as children because of fluid, so if Hadlee had any hearing problems it was probably the same issue. The next hearing test was done 24 hours later, a doctor came in to tell us that she had failed again and that she would have to be tested again at a specialist in 6 weeks. The doctor told us the gravity of the situation in statistics; 80% of babies pass the first hearing test, of the remaining 20%, 80% of them pass the second test. My heart sank, how could my perfect little baby be part of such a small majority that failed the test? My hormones and emotions were going crazy, so I immediately started sobbing thinking about how my little girl couldn’t hear my voice. The doctor went on to say that of the small 20% that needed to go to a specialist, 80% of the babies pass the test, but she warned that it’s a very small possibility that Hadlee might have neurological hearing loss and would need help from hearing aids.

Of course after hearing this, I continued to sob. Austin consoled me, reminding me that the odds were in her favor and that it was still most likely fluid that was causing the hearing loss.

We took our little girl home and I continued to feel more reassured about Hadlee’s hearing after reading online and being told by other moms that had children that failed in the hospital, and all of them passed the next test. I almost canceled the specialist appointment; convincing myself that Hadlee could hear since she stopped crying because I picked her up and whispered “shhh” in her ear and thinking, surely it was the sound of the car door slamming that woke her up when the car stopped moving.

Last week, I decided to go to the appointment just for peace of mind. I wasn’t worried at all, I expected to be told that Hadlee was hearing fine and I was being silly for worrying. My little baby girl was hooked up to sensors that connected to her forehead and behind both ears. Hadlee was supposed to be asleep during the test so that the doctors could see how her brain reacted to the beeping from the earbuds they put in her ear. I could hear the beeping from the earbuds when they turned up the sound, I saw Hadlee’s legs move and worried the sounds would wake her up,  but she was a champ and slept through the whole thing.

When the test was finished the doctor came in to show me the results. I remember not being worried about anything but whether Hadlee would stay asleep long enough for me to grab some lunch. The doctor sat down and told me that Hadlee had no reaction to the sounds. My heart stopped, what did that mean? Of course she had a reaction, she was moving during the test. And if she does have hearing loss, it’s probably because of the fluid.

“No”

The doctor showed me a chart that said that Hadlee’s ears are clear, fluid isn’t the problem. It’s neurological.

Shock hit as I started to cry. But surely she could hear something. I asked what percentage of hearing loss she had.

“Deaf”

A word I was unfamiliar with and never believed would be associated with my precious little girl. The test had to be wrong. I felt so guilty, was it something I had done? Why us, why me? God, why why why? I couldn’t stop sobbing, I couldn’t wrap my head around any of what was happening. Would Hadlee be able to go to school? Will she ever be able to live alone? Will she ever hear?

The doctor patiently answered my questions: No it’s not your fault, sometimes two hearing parents have a deaf child, we don’t know why. The most possible reason is genetics. (This possibility was ruled out since neither of our families have a history of hearing loss)

Yes, Hadlee can live a perfectly normal life. She may speak and communicate. She has every ability to live alone, go to school, go to college.

No, she will never hear. There are hearing aides that may help, and a device called cochlear implants that will help her “hear” in a way. But every option will require intensive speech therapies to help her communicate.

I looked at my baby the entire time I interrogated the doctor and just cried. Thinking that it couldn’t be true. I was going to teach Hadlee how to play piano, we were going to sing duets together, my voice is supposed to soothe her. The crying eventually stopped and I left in shock.

I called Austin crying and told him the news, he came home from work immediately and we cried together.  We felt angry at God wondering why He would do this to our little perfect baby. We felt confused and shocked, I was convinced God really chose the wrong mom for this job.  We felt so guilty thinking this was somehow our fault, then we felt guilty for thinking any of those thoughts.

How selfish of us?? Hadlee is perfect. She is a happy and healthy baby girl, and made exactly the way God intended. She isn’t any different now that we know she can’t hear, she’s the same beautiful girl that God blessed us with. It’s up to us to teach her that she can and will do whatever she wants, and she will be amazing because she did it despite adversity. God tapped me on the shoulder and said, I have a plan for all of this. I started to feel a peace.

The love I feel for Hadlee is so intense, she is so very special! I’m convinced  she is the sweetest, strongest baby in the world.

 

I’m writing this post not so that we receive sympathies, what do we have to be sorry for?! We have an incredibly perfect baby girl. I’m writing this so that our friends and family may encourage and pray for us during this time. Pray for wisdom when making decisions on Hadlee’s behalf. Pray for patience.

This journey is just beginning. It’s going to be difficult, but never impossible. Austin and I are so excited to raise our daughter and watch her become the incredible woman that God created her to be. I know that she was created to do amazing things, I can’t wait to share this journey with everyone.