Work hard.. play harder

It’s been a little over a month since I’ve updated everyone! Time flies when you’re having fun, right? Lots to update on our sweet girl!!

Over the past month Fisher has made HUGE improvements! From trying new foods, “chewing” better, sitting up, grabbing things and trying to drop them, to saying mama, dada, and bubba again!

We went to see the allergist and unfortunately Fisher has FPIES. As on now, it’s only with oats and avocados. We are slowly going through the list of foods and trying them out. Luckily

Our allergist appointment started out okay… then Fisher’s nose became impacted with a very large.. booger! So like always, I got my little blue boogie stick to pull it out.. and I guess it was stuck in there a little more than usual and when it came out.. so did an enormous amount of blood. I gave my sweet girl her first bloody nose!!! Blood was everywhere… the more she cries the more it bled. I finally got it cleaned up and stopped bleeding. I pulled my water bottle out of my bag and started to take a drink.. when I did, Fisher grabbed my bottle and squeezed it.. water went everywhere! All over her and me. It was a disaster! If you could have been a fly on the wall, you would have laughed.

Luckily, the prick test went well and Fisher didn’t have any of “those” allergies. Just the FPIES.

We also went to the river for Labor Day! The kids had a blast riding with Bobby in the kayak.

While Fish has been working hard in Physical Therapy … she can now SIT UP!!

This last week she was finally able to manage sitting up by herself. We have worked so hard for this and we couldn’t be more proud!

She might have taken a few falls along the way, but she is sitting strong now.

We still have surgery planned for October 14th, so prayers are greatly appreciated. I know we will have one night in the PICU, but we won’t know exactly how long we will have to stay, until they complete the procedure. Until then, here is your monthly catch up of cuteness…

Click Here: To Donate To Fisher’s Medical Fund

The results are in..

Well as I imagined our Fisher girl has Moderate-Severe Sleep Apnea. More on the severe side. The total number of “episodes” are listed below:

Obstructive Apnea: 26

Mixed Apnea: 8

Central Apnea: 67

Apnea Totals: 101

Hypopneas: 85

Total Apneas/ Hypopneas: 186

Apnea/ Hypopnea Index: 33.0

So what does all of this mean…

Obstructive Sleep Apnea occurs when the muscles relax causing soft tissue in the back of the throat to collapse and block the upper airway. (Basically there’s an obstruction where she can’t breathe)

Central Sleep Apnea occurs because your brain doesn’t send proper signals to the muscles that control your breathing.

Mixed Sleep Apnea is a combination of obstructive and central sleep apnea.

Hypopnea is abnormally slow or shallow breathing.

Hypopnea/Apnea Index is an index used to indicate the severity of sleep apnea. It is represented by the number of apnea and hypopnea events per hour of sleep. Normal would be less than 5 events per hour. Mild is 5-14 events per hour. Moderate is 15-29 events per hour. Severe is 30 or more events per hour.

Since Fisher’s Index was 33, she’s considered severe. So what do we do now you ask?

We are scheduled for surgery. They will do a sleep endoscopy on October 14th, and determine what they need to do. Dr. Virgin said most likely he will have to remove tonsils and adenoids. He will check to see if he will need to correct the laryngomalacia, which he would do while she’s under. He will put tubes in her ears since she has fluid in then since January. We haven’t had many infections, but the fluid just is hanging out.

She will have to stay in the PICU for a little while to be monitored on recovery. Once she is healed, we will do another sleep study. We will want both obstructive and central apnea’s to drop down drastically. If the central sleep apnea number doesn’t come down like he would like, we will have to have another conversation about her possibly having another sleep disorder.

We will also retest her hearing, since she has failed both hearing screenings. We are praying she passes the hearing test this time around, if not, we will have to address the hearing loss issue and possibly talk hearing aids! (It’s a good thing I work for an Audiologists office and know my stuff)

Bobby bought us all amazing t-shirts from “Littlest Warrior”. He got Fisher one that said “not cookie cutter” 😍 it’s absolutely perfect for our special girl.

Fisher went to the ophthalmologist for her drifting eyes. She still has “Intermittent Exotropia”. Basically, the muscles in her eyes are too weak and they will drift off. We are going to have to patch one eye for 2 hours each day, alternating eyes. We will continue this for 4 months and then reevaluate. If the doctor isn’t seeing the results he would like, we will either get more aggressive with the patching, or discuss surgery.

Unfortunately, Fisher HATES the eye patch. She picked and pulled it off, every time we put it on 😂 we will have to purchase some mittens soon in order to keep her from picking it off everyday.

On a positive note, Fisher learned to clap! She loves to clap, even if she doesn’t it very proper 😂

**Excuse my mom voice**

Lasty, on our update for Fish, we tried to reintroduce oatmeal during feeding therapy and about 3 hours after eating it, she started throwing up… a lot. It lasted for about 2 hours until everything was cleared from her system, then she was fine. I spoke with GI at our appointment Monday, and she is referring us to an Allergist to discuss the possibility of Fisher having FPIES. 😩 hopefully not, but I guess we will wait and see.

Fisher is currently trying to push through so nasty seasonal allergies and a possible ear infection. She’s a tough little cookie and is doing amazing handling all of the doctors appointments and therapies.

Please continue to pray for her and our family as we learn to live with this new normal. Some days are harder than others, but we stay positive and know everything we’re doing is worth it for our girl! We appreciate all of the love, support, and prayers!

Click Here: To Donate To Fisher’s Medical Fund

Sleep Study

We don’t have results yet, but as soon as I get them I will fill everyone in 🙂

We received a call yesterday morning(Tuesday) saying they had a cancellation for that evening and we were on the wait list. I happily accepted the offer because our appointment wasn’t until September 30th. 😱

We arrived at the Hyatt Place in Franklin. We checked in and they got us settled in our room. About 30 minutes after being there and hanging out, one of the nurses, Vanessa, came in and said she was going to move us to a different room so she could have Fisher for the night. I was thinking “greattttt here we go gotta pack up the pump, bottle warmer, milk, etc.” but Vanessa was SO nice and helped move us next door. She “upgraded” our room to the handicap room.. bigger bed and everything!! Heck yes! It was totally worth the move over one room lol

I was thinking “yes! I’m going to sleep so good in this big bed with just me and fish” but man was I wrong.

We got Fisher all hooked up, 20 probes on her head, 2 motion monitors on each leg, heart rate monitor, pulse ox monitor, and a cannula. She did great with everything until we had to put her cannula in her nose. She HATED it. I ended up putting socks on her hands so she didn’t pull it off all night.

Luckily Fisher slept through the night, but unfortunately I was woken several times to check things on her from the nurses request. At 3:58 am Fisher started stirring and waking up. I warned up some milk for her and kept her calm since they only needed about 10 more minutes of monitoring. Once it was all done, they took her probes off and we were able to go home! I asked if this was a “wasted” trip, because I was afraid they souls for pick up bed sleep apnea, and the nurse said it was not a wasted trip and they got lots of good readings they can use. We should have the results fairly soon, and then we will set up a game plan on where to go from here!

At 4:30 we went home, gave fisher a bath, and went to sleep for about 3 hours before work!

We are so proud of how well fisher handled everything and I am definitely anxious to get the results and make a game plan!

Please continue to pray for Fisher. She’s a tough cookie and amazes me how strong she is every day!

Click Here: To Support Fisher’s Medical Fund

June to July.. oh my!

Hey friends!

The month of June was a very busy, fun filled month for the Brinker’s. I can officially say the end of June/ beginning of July have been my favorite by far. We had huge improvements with Fisher, spent time with family, and even better… our Fish is officially saying MAMA! It’s the most beautiful sound I’ve ever heard 😂 it might be because she said mama first, where Wells said Dada first. Oh well, still it’s my favorite word ever!

Fisher took her first trip to Chattanooga, where Bobby did his triathlon! We went to the discovery museum and ate some delicious food!

Fisher has had some great weeks in therapy. She is officially rolling over and now we are working on sitting up.

She also has been eating new foods and slowly adding some “solids” in.

Fisher also had her 3 month check up with the hematologists/oncologist, as well as, her ultrasound of her kidney and adrenal glands. They said nothing has changed, so for now we’re in the clear. We will continue to go every 3 months for the next several years.

We also were able to FINALLY go to MO to visit Bobby’s side of the family. We have waited a year to go, and finally were able to for the 4th of July.

wells has been doing AMAZING in swim lessons! Not everyday is a good day, but we have improved so much.

So, one of our goals for Fisher was to get her to 15 lbs by her first birthday.. 2 weeks before her birthday she weighed in at 14 lbs 12 oz. One week before she weighed in at 14 lbs 14 oz. We had one week to gain TWO ounces…

15 lbs 6 oz!!! Our girl gained 8 oz in one week! I was so excited I cried with excitement when we got in the car 😂

Next on our adventures was Fisher’s 1st birthday! We had a couple of friends and family over for her celebration! Fisher didn’t like her cake, but loved her outfit ♥️

We have been spending a lot of family time together and recovering from some illnesses, but she’s on the mend. Overall, our Fisher girl is growing big and strong.. and slowly making progress! We are so proud of both of our kiddo and love them more than anything!

One last update: Fishers sleep study has been moved up and it is tonight!! They had a cancellation and we took it 🙂

Please continue to pray for Fisher and our family as we go through this journey of life and the unknown to come.

Click Here: To Donate To Fisher’s Medical Fund

Fisher’s Delivery.. Part 2

So here’s where we left off from post #1… labor and delivery. This seems quite fitting to post since my baby girl turns ONE in a couple of hours. It doesn’t seem real! Here’s the rest of Fisher’s delivery and how she made her appearance into this world.

They prepped me and got me hooked up to a Pitocin drop, along with a bag of fluids, and antibiotics. Since I was 5 weeks early and they didn’t have a chance to do my Strep-B test, they treat you like you are positive and start antibiotics. lovely.. So my All-Natural delivery I was planning, already started with Pitocin and antibiotics. Not really what I was hoping for, but hey, I wasn’t really planning on having Fisher this early, so I rolled with it.

(I remember the nurse had to have two additional nurses come in to set up another “IV stand” since I had so many bags, they had to hang more and figure out how to run the lines to me correctly.)

So there I was all hooked up riding out every contraction (which weren’t too bad actually) . My grandparents, brother, and in-laws were on their way because no one wanted to miss Fisher’s birth. Everyone arrived at our house/ my parents house by about 10-11pm on the 12th. My brother, Joseph, didn’t arrive until around 3 am, and he came straight to the hospital.

My whole “all natural” birth didn’t go as planned and I should have realized it probably wouldn’t since Fisher was definitely making things the way she wanted them to be. See, every time I had a contraction, Fisher’s heart rate would drop. Around 11:45pm, my amazing nurse, Dani, came into the room and told me we wouldn’t be able to continue like this and I knew she meant I’d have to have a C-section. I immediately started thinking of how to avoid that. I asked if I received an epidural, would that help keep Fisher’s heart rate from dropping. Dani said no since I wasn’t tensing up during contractions, it wouldn’t help. So then I asked, “If I have to have a C-section, you’ll have to do an epidural anyways, correct?” Dani said, “yes”. I immediately stopped and prayed. I prayed that if I let go of my plans and got the epidural, that I’d be able to deliver vaginally and avoid a c-section. Then I looked at Dani, and I told her to go ahead with the epidural.

I got the epidural around 12:15-12:30ish (yes they’re quick). The first contraction after the epidural.. I waited.. nothing. Second contraction.. I waited.. nothing. So on and so on.. Fisher’s heart rate never dropped again after I got the epidural! Prayers were answered and I knew in that moment, I wasn’t in controls and my plans weren’t the plans we needed to follow. I completely Let Go and Let God.

I tried to get as much rest as possible but it was hard when you have your husband, mom, and brother all hanging out carrying on conversations with the nurses and laughing about my whole water breaking story at 3 in the morning! 🤦🏻‍♀️

Fast forward, around 4:30am Dani checked me, and I was about 7cm dilated. She said to relax, get some rest, and they’d check me in an hour or so. Well about 25 minutes later I felt pressure. Luckily, Dani was still hanging out with us talking to my brother about Africa and animals, if I remember correctly.. anyways, I told her I felt pressure. She said that’s a good thing. Then I preceded to tell her, “no I have like a lot of pressure..” like holy hell there’s a baby down there pressure. She said she’d check me, but usually you don’t just jump from a 7-10 that quick.. guess again! Yup this mama was that person to jump that big of a gap that quickly!

The first thing I did was call Shayna, my best friend Kendall’s sister and our amazing photographer! Luckily, she lives like 10 mins from the hospital, so she hopped in the car and headed our way. At 5:05am Dr. Rupe came in and sat down, asked if we were ready(the room was set ready to go) and we were.. all we were waiting for was Shayna to get into the hospital.. I was THAT person and asked, ” can we wait for my photographer? She’s trying to get in the hospital and since it’s after hours she’s having to go into the emergency entrance” 😂 in that moment I felt so high maintenance which is NOT me at all, but I HAD to have her there!

Shayna walked in, pulled her camera out, and I immediately started pushing. This delivery was WAY different than with Wells. With Wells, I couldn’t feel anything. I felt drugged. I remember bits and pieces of his delivery. I never saw him being born and my mom only captured like 2 photos since she watched the whole delivery.

Fishers delivery was 10 times better. I had a large mirror and watched her come out. I was in control. I could feel everything but I wasn’t in pain. After 5 pushes.. yes I said that right, 5 pushes, she was out. She came sunny side up, with her fist busting out next to her head.

She had hair. Our beautiful girl had hair! All I could think about was how much hair she had and how dark it was! We were able to get some pictures, skin to skin time, and very little snuggles in before they took her away to the NICU.

They had tested her blood sugar levels and couldn’t detect them on their machine, meaning they were way too low. This was the only reason she went to the NICU at Williamson.

We proceeded to spend the next 6 weeks in 3 different NICUs. This was not the typical birth story you usually hear, but that’s okay. This was Fisher’s story and the beginning of a very long and beautiful (sometimes not so beautiful) story.

The next post, Part 3, I can tell about our NICU stay and our adventure traveling to 3 different NICUs in Middle Tennessee. Oh and a TON of Fisher Pictures growing big and strong! 🙂 AS WELL AS, an update on how fisher is doing now and her 1st birthday!!

Thank you again for all of your love and support for our sweet Fisher Rae!

CLICK HERE: To Support Fisher’s Medical Fund

Back to the grind..

We’ve had a couple eventful weeks since we’ve been home from the beach. Fisher had some great therapies and huge improvements! She’s able to hold her head up A LOT longer then before and she’s doing great with propped sitting!

Fisher also had a lot of FIRSTS over the past couple of weeks. She went to the Zoo for the first time.

She also went to the Little Red River over Memorial Day Weekend! She loved fishing 😍

She even said… wait for it… MAMA! So long story short: mom, Fish, and I rode down to the river together… girls in one car, boys in the other. We stopped at the Bull Dog to get dinner before making it to the river house and while we’re waiting in line, Fisher started making noises. So I started recording her… well, mom started talking and so I stopped recording and told her I was going to video her and to wait a minute before talking… I know I know, I should have just kept my mouth shut and kept recording bc as soooooon as I stopped and said this to mom, Fisher goes “MAMA”.

If you could have been a fly on the wall in our car to see our faces, we both we’re freaking out. I immediately hit record and caught a little ma…… ma…. mmmm… not as good as the initial MAMA.. but I’ll take it!

I haven’t been able to get her to say it for me, but I know now she can! It’s in there and she definitely wants to talk sometimes but can only push that mm mm mm sound out. It’ll come all in good time!

This past weekend, on June 1st, we celebrated the baptism of our sweet Fisher Rae, as well as, our amazing Wells Michael’s 4th birthday party!

Behind the scenes real mom shot 😂

After both events Saturday we went home to rest for a little bit, but not for long, because Bobby had a show that night! (When we plan a day, we plan a day!)

And now we come to this week.. Monday, June 3rd came and went, way faster than I would have liked. Wells Michael turned 4 and it was such a good day to celebrate him!

We also had a genetics appointment for Fisher that afternoon. We saw Dr. Hamid and talked about different things with Fish.

First thing was we talked about her sleep apnea and that we were going to see ENT on the 4th. Then we also addressed the COL6A3 deletion.

One of my friends had mentioned that one of the collagen 6 genes was located at 2q37.3 and therefore I became curious as to what this could mean for Fisher. I reached out to her genetics councilor and this is what they informed me…

Her deletion does include the COL6A3 deletion. It is possible that she could have symptoms from this deletion, but not definite. They would want to keep an eye on it while she’s in clinic. She explained that the most severe deleting occurs when both copies of this gene are not working. The next most concerning changes are those in which one gene produced normal protein and the “misspelled” gene produces an abnormal protein. The interaction of normal and abnormal protein causes more problems, than a decreased amount of normal protein, which is Fisher’s situation. It is possible that whether or not an individual with deletion of one COL6A3 gene has symptoms depends on the amount of protein produced by the normal COL6A3 gene. Perhaps individuals whose normal gene produces a lot of protein do not have symptoms or have milder symptoms.

They are unsure of what is to come and what’s symptoms she will have, if any at all. So we shall wait and see…

We also talked about the possibility of Fisher having scoliosis. Dr. Hamid wants Fisher to see one of the pediatric orthopedic doctors at Vanderbilt for the scoliosis evaluation. We’re waiting on that call for an appointment.

Lastly, today, June 4th we went and saw Dr. Virgin, ENT. We discussed Fisher’s sleep apnea and he decided he wanted to get a sleep study done on her to figure out the severity of it. Once they do the study, they will know if she needs just her adenoids removed or more issues needed to be addressed. If they can’t get us in for a while (usually a couple months out) and it’s getting worse, we can call and he will change the plan. The second plan is to do a scope (not sure the fancy name) but look at her adenoids, tonsils, larynx, etc, and see when she is asleep breathing how floppy everything is and then take out what they need.

One issue we need to figure out is her hearing loss. She’s continued to fail all of her hearing screenings, so they aren’t sure if she actually has a hearing loss or just needs tubes 🤷🏻‍♀️ so we will wait for the sleep study and if it takes too long we will go with plan b.

Please continue to pray for our sweet girl. She’s such a bright, beautiful, and happy girl. We’re so blessed to have her and can’t wait to see what the future holds for us.

CLICK HERE: To Donate To Fisher’s Medical Fund