Cardiology

Yesterday we had another cardiology appointment to discuss our continuing concerns with Evie’s low heart rate. The cardiologist thinks that what we’re seeing is reflux induced bradycardia. Basically when reflux occurs, it triggers a nerve that slows the heart. The good thing is that her body sees the slowed heart rate and speeds it back up again. He wants to do another 48 hour Holter Monitor to monitor her heart, but also wants to try to get her an ACT monitor. This is like the monitors in the hospitals, but she can wear it at home. It would actually send the data to a lab that would monitor the results. The problem is that most insurances will not cover this device. There is a program that was a sort of trial situation where the hospital would foot the bill if insurance didn’t, but that program ended this week. Our cardiologist is still going to try to get her into the program, so please pray that happens!

No one feels Evie is in any kind of life threatening situation, but with so many surgeries in her future and such a high chance of having a heart defect, we want to be thorough.

Thank you everyone for your prayers! Next week we see her ENT and ophthalmologist, so hopefully those go well, too.

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A New Noisy World

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Well Tuesday actually went really well! First stop was to get her hearing aids, and although she didn’t like them messing with her ears, once they were in she calmed down. When they were turned on, she got very wide eyed and whipped her head around to look at people as they spoke. She became very focused on examining the world around her. She can hear without them, but I imagine this introduced a new, deeper element into her world! It was fun to watch her reactions! She did really well with leaving them in, too, which I was shocked about! She only pulled at them twice, but that seemed to be more curiosity than anything. She actually wore them most of the rest of the day. The last few days she’s been wearing them frequently and seems to be enjoying her noisy toys even more!

Next we headed to radiology for Evie’s swallow study with the speech pathologist. We were able to get her to swallow and she was able to protect her airway and not allow any food into her lungs. So great news. We chatted with the speech pathologist afterwards though and she felt like now was not the time to push feeding. She firmly believes this is anatomy thing (trach, choanal atresia) rather than her just needing to learn. In her words, “Evie is doing so many other things developmentally that if she’s NOT doing something, she probably has a very good reason.” That was very encouraging. We certainly don’t want to push Evie if she’s not ready or able, but I’m glad we discussed it with her to confirm that we weren’t missing an opportunity to be proactive.

She also tried covering Evie’s trach as she exhaled, but Evie wasn’t able to get ANY air past her trach and up out her mouth. This means either the trach itself takes up too much of her airway so air can’t get around or the scarring in her trachea is so extensive that it has completely blocked her airway above the trach site. This is what we suspected so it puts the kibosh on the speaking valve for now.

I know that sounds like a lot of bad news for the day, but we really don’t feel that way. We’re glad to know where she’s at so we can plan therapies accordingly. We’ll focus on sign language and when a speaking valve becomes an option or the trach is removed, her language development will already be present and we can work on actual speaking. And as for the eating, we’ve said before that we really are in no hurry. She’ll do it when she does it. In the grand scheme of things, it’s just not something for us or her to stress about!

Busy Few Weeks

Evie has a couple of busy weeks coming up. Today she gets her hearing aids (yay!) and also has a swallow study. Please pray the fluid clears up in her ears so we can actually use the hearing aids and also that she passes the swallow study with flying colors so we can start more feeding therapies.

Friday Evie meets with both cardiologist we’ve been seeing and will probably have another echo done. I’m still rather concerned with how low her heartrate dips when she’s sleeping (into the 50s) so hopefully they can explain a bit better why this is happening.

Next week we see her ENT to go over a few things and also her ophthalmologist for a routine look at her eyes.

The following week she has molds taken of her feet so her braces can be made.

So busy busy busy! Hopefully she stays healthy so we can keep all these appointments!

Birthday Party

Like I said in the last post, we had a little get together with a couple families to celebrate Miss Evie!

Miss Evie loves sitting in her chair!

And all of you who sent cards last year when she was born and in the hospital? You were a part of our celebrations, too!

Bunting made with last year’s cards (and paint chips)!

God is with you…

Higher Ground

There is nothing more powerful than a faith filled prayer.

Through the storm, you do not walk alone.

Oh, how I love Jesus.

His plans are good. His promises are faithful.

All the girls at the party! Didn’t even attempt to round up the boys for a photo!

Thanks again for all the birthday wishes! Can’t wait to see what year two holds!

Braces, Swallowing, and Speaking

We’ve had a pretty productive week for the birthday girl. Now that the weather is warming up and we’re getting out of peak sickness time, we’re going to attempt a more intense therapy schedule.

First on the list is physical therapy. Although Evie is leaps and bounds ahead of where we all thought she would be, she still does have low muscle tone and a little bit too much flexibility in her ankles. She is at the point now of wanting to walk (she pulls up to standing and is attempting to cruise) but she just doesn’t have the strength or ankle support she needs. The therapist and pediatrician both agree that AFOs (Ankle Foot Orthotic) are the way to go. She’ll get molds taken of her feet and the braces will be made in a few weeks. They will be more like little shoes that just come up a little ways past her ankle. Evie has the tiniest feet ever, so it will be interesting to see how it all works. I’m really excited for her to get these! I think it’s going to make such a difference for her as she learns to walk over the next year or so.

We’re also hoping to do some more intensive feeding therapy. Evie currently doesn’t swallow at all on her own. We can force it sometimes by giving her her pacifier, but not without quite a bit of trauma for Evie. At this point, she rarely even swallows her own saliva. We’re pretty out of our league with trying to teach her how to swallow. I mean, who really thinks about swallowing? We’re not in any rush though, since we have every intention of keeping her gtube as long as she’s going through surgeries which will be at least another 3-4 years. She’ll also probably eat better than all of us since we’ll begin adding blenderized foods to the breastmilk she’s been getting. Before we start the feeding therapy, however, we’ll need to do another swallow study to make sure that when she does actually swallow, it goes into her stomach and not her lungs. She passed the last swallow study she did, but we want to make sure her muscles have not weakened over the winter.

Lastly, Evie has been cleared to try a speaking valve! This type of valve allows her to breathe IN through the trach, but then forces her to breathe OUT of her mouth, allowing air to pass by the vocal cords. I’ll be honest and say that I am expecting this to be a complete failure as there’s a possibility the scarring in her trachea will not allow her to get the air out her mouth. I’m actually very okay with this possibility. A few months ago, I would have been terrified about it not working and would have cried some big tears about not being able to “hear” my baby, but now? I HEAR her. I can hear her laugh, her cry, her giggle, her babbling, all of it. For not being able to vocalize, she’s actually incredibly noisy! I will desperately miss all of the creative ways she talks to us. I will miss her laugh. Oh, how I’ll miss her laugh! A few months ago, I wanted her to get the speaking valve for ME. So my need to hear her could be filled. Now, I just want it for HER. Getting the speaking valve sooner rather than later will help her develop speech easier, which would be one less setback.

So a good week overall! She’ll be having a lot of changes in the next few weeks and months with her hearing aids, foot and ankle braces, speaking valve and new therapies. Please pray for the swallow study to go well and that she tolerates the speaking valve well.

Thank you all for the birthday wishes and beautiful comments about her birth story. We are so blessed to have so many people praying for our Evie and cheering her on! We had been planning a get together with some friends for awhile and decided to make it a little party for Miss Evie, so I’ll be sure to post lots of pictures of the birthday girl in a few days!

This Day Last Year

When Evie was born, this was what we shared on Facebook:

“Our little Evelyn has made her appearance, but unfortunately has been sent to a NICU in Des Moines with breathing problems. Ty was able to accompany her right away and Megan is joining them shortly. Please be praying for our little girl. She seems to be doing well and is quite a fighter, but isn’t out of the woods yet.”

This is what we didn’t share at the time.

After nineteen hours of labor, our second child was born at 12:28 am on Mothers’ Day, but wasn’t breathing. She let out the most pitiful whimper I had ever heard. So quiet, I thought I had imagined it until I saw her medical records and saw that at least one other person had heard it as well. They took her over to the table and tried to suction her, but the tube just kept coming back out of her nose. They gave her oxygen and scrambled to find smaller tubes, they tried intubating a few times, but smaller hospitals usually don’t carry tiny enough equipment to intubate newborns. Ty, that wonderful man I married, stood next to her and held her hand the whole time feeling the life slip from her more than once. And he lied to me. He turned to me and said “She’s doing great.” That’s how I found out we had another daughter.  He said “she”.

Evie just over an hour old, still not stable, but receiving oxygen.

Our doula (labor assistant) wrote down her memories of the experience since so much of it was a blur for me.

At first, it was just a big sense of relief. But, then the baby wasn’t taking her first breath. I have seen babies struggle in the beginning before so I did what I always do and encourage Mama to talk to her baby, sing to her, let her hear your voice in hopes that it would help give the baby the security to take that first breath. You did. But, there was nothing happening. The room started to fill with nurses and doctors. They tried suctioning, they cut the cord and rubbed her back. I watched the clock. 5 minutes. 10 minutes. Nothing. They put her on oxygen quickly and continued to try to stimulate her. They ran around looking for tubes small enough to put in her tiny nose. Ty went to the table where Evie lay and I stayed with you. I remember purposefully not telling you it was going to be ok because I wasn’t sure that it was. I just held you and stroked your hair and your back. 15 minutes. 20 minutes. Megan, you began to cry. A sound no mother should ever have to make. Begging for God to save your baby. Asking them to tell you what was wrong. No one was talking to you much. Ty kept looking at you and tried to smile and be reassuring. But his attention was almost entirely on the baby. 25 minutes. 35 minutes. 45 minutes. The staff called life flight and started making comments that she needed to go to Des Moines. Sometime in the midst of all of that, they called in the anesthesiologist. He was wearing jeans and an old shirt and he began to work on your baby right away. I remember him as an angel because he was the first person to really talk to you and Ty. He told you exactly what was going on. He said that they think Evie didn’t have any nasal passages and that’s why they couldn’t get tubes in. He said that they had her on oxygen and she was getting all the oxygen she needed right now so she was stable. He was honest and reassuring at the same time. I was so grateful. He kept Evie stable while they waited for emergency help. Life flight couldn’t make it out there, I think because of the wind, but an ambulance was on its way.”

Right after the NICU Transport Team arrived and was working to intubate.

The NICU transport team arrived around 3 am and were able to get her intubated.  A few minutes later, our feisty Evie yanked the tube right out and had to be intubated again. Once this was done she was much more stable. Ty and I had planned to take our time discussing our favorite names to see which fit this new child, but with the new situation, we both felt she needed a name before she left. At that point, we knew there was a possibility she wouldn’t make it and no one wants to name their child after…So I requested Evelyn because I remembered that it meant life. She immediately became Evie to us.

She had a name. And then it was time to say goodbye. Prior to this, I had only seen a picture of her that a nurse took to bring over to me and I could see her little body lying on the table. They wheeled her over next to my bed so I could kiss her and let her know I would see her as soon as possible. She held onto my finger so tightly.

I finally meet my daughter and say goodbye.

And then she was gone. Ty followed shortly after. And then I was left to listen to the other babies crying while I laid in my bed alone.

The next few days were a blur as potential problems were suggested and tested for. Brain abnormalities, kidney problems, heart defects, pulmonary hypertension, sepsis, and more and more. By the end of the week, we had ruled out everything except the choanal atresia (of course, now we know she has CHARGE syndrome, but we didn’t discover that until she was a month old).

Things looked pretty bleak that night and the next few days, but God was faithful through it all. He sustained us and Evie through this last year and she is such a light in our family. We had no idea the adventure that awaited us in Evie, an adventure with intense struggle, but even more intense joy.  I’ll leave you with the hymn that goes with the name we chose:

Praise to the Lord, the Almighty, the King of creation!
O my soul, praise him, for he is thy health and salvation!
All ye who hear,
Now to his temple draw near,
Join me in glad adoration.

Praise to the Lord,
who o’er all things so wondrously reigneth,
Shelters thee under his wings, yea, so gently sustaineth!
Hast thou not seen
How thy desires e’er have been
Granted in what he ordaineth?

Praise to the Lord, who doth prosper thy work and defend thee!
Surely his goodness and mercy here daily attend thee;
Ponder anew
What the Almighty will do,|
If with his love he befriend thee!

Praise to the Lord,
who with marvelous wisdom hath made thee,
Decked thee with health, and with loving hand guided and stayed thee.
How oft in grief
Hath not he brought thee relief,
Spreading his wings to o’ershade thee!

Praise to the Lord! O let all that is in me adore him!
All that hath life and breath, come now with praises before him.
Let the Amen
Sound from his people again;
Gladly fore’er we adore him.

We are so grateful for our beautiful little Evie. I’m glad God chose us for her and her for us. And we don’t say these things trying to make the best of a bad situation. Evie is far from a bad situation, she is an incredible situation and we truly feel immensely blessed to have her in our family.

I mean, who wouldn’t go through anything and everything for that smile?

Audiology

This past Monday, Evie had her first appointment with audiology. Many of you remember that we discovered that Evie had some hearing loss when we finally were able to do a hearing test at the end of March. Here is a graph that the audiologist shared with us to help us understand Evie’s hearing loss:

Let me see if I can explain this well. The orange line is her right ear, green line, her left. In her right ear, the lower frequency sounds are harder for her to hear, but higher frequency sounds are in the near normal range. So she needs more amplification of the low frequencies than high frequencies. In her left ear she was in the severe hearing loss range across all frequencies, but some more than others. We are still questioning if that is mostly a fluid issue (very common in CHARGErs). When they did a different type of test, it showed that she could possibly only have moderate hearing loss, but the fluid makes it worse (like hearing underwater).

After explaining everything, she had us pick out which color we wanted of the particular model Evie will be getting (we decided to go with pink!) . Because Evie has issues with fluid in her ears, the audiologist decided to go with a slightly larger model with more adjustability.  The fluid will definitely present a challenge as the levels change daily for her. The ear tubes do help, but due to her blocked nasal passages, there’s really nowhere for the fluid to go. Some days she may need more amplification, other days less, so we will just have to experiment and see what works for her.

Next the audiologist placed a tiny sponge inside Evie’s ear canal and squirted pink goo into her ear. It hardened and formed the mold to make the part of the hearing aid that goes in the ear. That little part will attach to a part that hooks behind her ear.

Evie was doing pretty well, so we ran a few errands after the appointment. As we get out of sickness season, it’s becoming more possible to get out with her. Evie and I had fun swinging on the swing at Lowe’s.

I love this picture! I think this also gives some great perspective of just how tiny Evie really is! She certainly doesn’t look like she’s going to ONE next week!!!!

We’ll be sure to post pictures of her birthday celebrations!