My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Wednesday, May 24, 2017

Hearing Screening

Because Verity failed her newborn hearing test, we had a thorough testing session scheduled yesterday, followed by a consultation with a doctor. I drove to where I thought the appointment was (same Boys Town Research center as the GI doc we see) only to learn that I should have gone to the downtown location. Oops. Thankfully it wasn't a problem (other than driving for an extra hour plus pushing everything back, thoroughly filling my afternoon!)

Verity had to be asleep for the test, and thankfully she did great. (Maybe we should have them test her during the night, lol.) Of course, it helped that I held her and kept her pacifier in her mouth while sitting in a cushy armchair. I think I got more sleep during the test than I did the night before, ha!

She had an Auditory Brainstem Response (ABR) test: "electrodes on the head pick up the brain's response to sounds presented to the ears. This test can provide information about the amount of hearing loss and how well the hearing nerve is working."

Because the initial responses showed between moderate to severe hearing loss, the tester then placed an electrode (held in place by another person) against the bony part of Verity's head behind her ear to see whether there was a true lack of ability to hear or whether perhaps the difficulty lies in her teeny tiny ear canals or possibly fluid in the ears.

With the second portion of the test, they determined that Verity is in the normal range for hearing low frequencies, and only in the mild loss category for higher frequencies.

At this time, there is really nothing to do other than wait for Verity (and her little ears!) to grow. Her canals are SUPER tiny, not uncommon for our T18 babies, and it is possible she will later have tubes in her ears and/or wear a BAHA (bone-anchored hearing aid) headband, but she will need to have a bigger head, lol, plus be able to sit up.

Meanwhile, it helps to know that her left ear is better able to hear than her right, and that when we talk with her, we need to talk in a fairly loud speaking voice and try to minimize distractions in the background. (I know, right?!?! Bwahahaha....)

Monday, May 22, 2017

Boots and Bar

May 16, after 7 weeks in casts, Verity was set free...for a few minutes, anyway.

These little feet have come a long way in a short time. [The marks, by the way, are the initials of the doctor who did her tenotomy surgery. Not surprisingly, Verity's skin was extremely dry!]

For the next 3 months, we are in the "boots and bar" phase of the clubfoot corrective measures. Roughly 23 hours a day she has to wear these. See how excited she is??!

Yeah. That makes my hips and knees hurt just to look at her. Poor baby.

The good thing is that she has learned to sleep on her back for the first time! Now that reflux is no longer such an issue for her, it actually seems more comfortable for her to be on her back. Sometimes. Maybe.

Actually, our poor girl is pretty miserable most of her waking moments, especially when it's time to "reboot." I'm not sure how she manages to get a little foot slipped out from time to time, but it happens. And regardless, we check her feet several times a day to make sure she doesn't have red spots indicating pressure sores. (She has a few times; we've learned how to take better precautions to avoid that and are getting better. Of course, now the leather straps are stretching, so we have to figure out just the right hole for buckling.) During the rare moments her feet and legs are free, we try to do some mini-therapy sessions: giving her time on her sides, stroking her feet with various textures, moving her legs so her toes go up toward her face, etc. That part is fun. Strapping her in correctly while she is thrashing her legs and screaming at high volume is not.

Nights are pretty brutal. Days can be difficult, too. She is happy (or at least moderately content) only if someone is holding her and/or holding the pacifier in her mouth. (She can't keep it in her mouth on her own very long at all.) She does nap during the day (like now...otherwise I wouldn't be typing); I suppose we could say she naps at night, too. It's disappointing, though, when we had gotten some decent stretches at night before the switch. We were hoping that after a few days/nights it would get better, but no luck yet. We are hoping and praying she will get used to this sooner rather than later...Mommy is ready to throw in the towel and say forget it already, but I'd hate for all of this to be in vain. Even after the 3 months of constant wear are over, she will still have to do boots and bar for nights and naps...just when we want her to be content and sleeping. <Eye roll>

Prayers for our patience, perseverance, and a decent amount of rest to facilitate a decent amount of brain activity would be greatly appreciated!

Thursday, May 18, 2017

Where I'm at...All I Ever Wanted Was a Croissant

This photo...isn't it sweet? Kenna took it for me the evening of Mother's Day.

That was a good day. An early morning walk in cool and windy weather; breakfast cooked by my husband; actually sitting through a whole church service; a yummy crock-pot lunch; a giant paper sack card with markered messages from my kids (I may need to go over the yellow and orange ones with pen so I can read them again someday, lol); some afternoon down time; a relaxed outing with the family (complete with the inevitable meltdown from the 3yo who decided he didn't want to walk after all); and some uninterrupted cuddle time with my baby girl, who melted my heart by grasping my finger with hers. (A privilege not to be taken lightly--her fists are still tightly clasped most of the time.) is a hard day. Not so much physically; Verity seems to be resigned to her new boots-n-bar fate (that's a blog post for another time). But emotionally. Mentally. Spiritually. Well, yes, physically too, because all of this is so exhausting. I just want to sleep.

There is much I could write. Much I have wanted to process through writing. Much I am willing to share...when I can. But for now, I will share this...

[If you haven't yet read or heard the "Welcome to Holland" parable, please read it first. It's very short.]

This response by a special-needs mama, "It's Not Holland," so perfectly captures what our lives are like nowadays. It is also very short.

Once you read this, you'll understand what I mean when I say that today is a day when I'm shouting inside, "All I ever wanted was a croissant!"

Friday, May 5, 2017

G-Tube Surgery = Success

Monday was a big day for Miss Verity! If she were able to retain and speak about the memories of her experiences during our hospital stay, she would probably first mention how incredibly hungry she was for most of that time, lol. We had to end her feedings by 8am, with surgery prep beginning at noon and the surgery scheduled for 2pm. Unfortunately, the previous surgery ran late, so Verity's didn't begin until 3:00.

The nurses adored and fussed over Verity!

Waiting comfortably in Daddy's arms.

Ted and I waited about an hour while Verity was in the operating room. I confess I was a bit anxious; my stomach was in knots all throughout the morning. It was hard having our baby go into surgery, knowing she would be under anesthesia. Thank the Lord, all went well, and after it was all over, a nurse took me back to the recovery area, where I got to hold Verity and comfort her. I was so thrilled to see how she clearly responded to having Mommy hold her--there was a noticeable difference compared to when the nurse was trying to calm her! I loved that she relaxed in my arms and became more peaceful.

We were only in this "holding area" about 15 minutes, and then Ted joined us and we moved to our overnight room. It was nearly dinnertime by this point, so we got Verity settled and then parted ways: Ted to go home to take care of the rest of the family (who had been holding their own all day, bless them!) and I to the hospital cafeteria to grab a soup and salad to take back up to our room.

Verity was not very happy when I returned and took over from the nurse! But rocking and singing to her helped. I ate my dinner very slowly, one-handed, over the course of an hour and a half before she calmed down a bit. She had to wait 6 hours before feeding, and then when it did start, it was to be the slow, continuous feeding that we typically do at nighttime. That seemed to make sense and lined up with our usual schedule; we began the feed at 9pm, and I pumped and hoped to get a bit of sleep.

HA! By midnight it was apparent that Verity was not interested in sleep whatsoever. She seemed to be in considerable pain, at least according to her screams. (There is nothing wrong with her lungs, that's for sure...) We ended up giving her some more pain medication, but she continued to be unhappy. The nurses were tag teaming with me, trying to help soothe her, but nothing was helping. They wondered if her tummy was not doing well and stopped the feeding, restarting the IV instead.

The night was a blur...there would be times when she would seem to settle, just enough for me to crawl onto the sloped couch, spread a blanket over myself, close my eyes, and...jerk back to reality when she screamed again. I think they did restart her feed at one point only to stop it again. They found an infant swing to bring in when I mentioned that she usually sleeps in our swing at night. That helped for a bit as well. But nothing helped longer than a few minutes at a time.

I was sure that Verity just needed a good meal! Of course I don't doubt she was experiencing pain as well, but by 5am, when she was just plain mad, I begged the nurses to PLEASE resume her feed. Imagine if you hadn't eaten for 13 hours, and then when you were finally allowed to eat, you were given one bite of bread every 10 minutes. Would that help you?! I think not! That must be similar to how Verity was feeling! Girlfriend likes her food!!

After going up the chain of command, we got the approval to resume the feeding and stop the IV. (You may hear my eyeballs rolling here...why would a mama not be allowed to feed her baby?! Yes, I understand the surgery and all...but really!) So feeding resumed...and she fell asleep. Hooray! At 6:10am the residents barged in to wake me up and ask me questions. Having just gotten about 20 minutes of sleep (double the amount I had gotten the rest of the night), I was rather disgruntled, and even more so when I realized they had awakened Verity, too. UGH. I held her in the rocking chair and we both dozed off and on until they came an hour later to stop the continuous feed.

But! Proving my point, at 8:00 when we started her full feeding (60ml over a half hour), oh! Was she ever so much more content! She did continue to make little shuddering sighs/moans now and then, similar to the nights after she got new casts on her feet/legs. But it was SO much better. Her little voice was hoarse from all the screaming during the night! By 9am she was resting well enough that I felt comfortable telling the nurse that I was going to go grab breakfast.

In the cafeteria I was able to meet up with another T18 mama! Paige and I had connected via Facebook soon after our diagnosis, and I've followed Addilyn's journey online as well. It was nice to meet in person and chat awhile!

Back in our room, I prepped for Verity's 11:00 feeding, during which I received the G-tube training needed to bring our girl back home and care for her ourselves. I posted this video on Verity's Facebook page with permission from the mama who made it, so if you're curious about what exactly a G-tube is, what it looks like, and how it works, take 6 minutes and check it out! I watched it before the consultation with the surgeon and then showed it to Ted the day of Verity's surgery. It's interesting and was super helpful for me in mentally getting ready for this change.

This is how I found her after I got back from breakfast;
I don't think she missed me a bit!

Ted arrived after his morning work meeting, so together we went over the instructions for using the G-tube for both feedings and medications, cleaning it, venting it (when her tummy needs to release some gas), and general site care. I was just so eager to leave the hospital and get home to NAP!

Now we are at the end of the week. I am happy to say the G-tube has not been yanked out, lol, and Verity's pain seems greatly subsided. I'm still cautious with holding her and don't even like to put her up on my shoulder to burp in case it's still tender. We give her an extra layer of cloth over the belly area when buckling her in her car seat as well. At the 2-month check-up yesterday, our pediatrician said the site looks good. There is some redness but not bad, and some inflammation is to be expected.

We continue to work on oral feeding as time and interest allow, but in the meantime, what a relief to finally be rid of the nasal-gastric tube and see Verity's sweet little face!