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

Another wait but another win!

Hi everyone! We’ve had a couple busy weeks since our last post. We hit a couple milestones and celebrated major improvements.

During physical therapy on. April 10th, Fisher rolled over from her belly to her back! I think she was just showing off for Ms. Jenn. (This was the week Jenn from developmental therapy came to physical therapy to see how fisher was doing).. she definitely shocked us all!

On April 14th, big brother gave Fisher a bottle for the first time 🙌🏻 he was a pro at it.

On April 18th, we went and had Fisher’s hearing tested again. She failed it again, which I expected. They told us we would need to go see ENT then come back for another test..

We also had Great “Gram”, Great “Grand-daddy”, Uncle JoeJoe, Aunt Bailee and Emerson in town for Easter weekend! They got lots of snuggles in and I think it’s safe to say Fisher loved her first Easter.. so did Wells 🙂

Last week, Bobby’s mom was able to come and stay with us for the week and man was it nice! Don’t get me wrong.. I love spending as much time won’t my kids as possible, but when she’s here, she loves on those babies so much I can actually get a break 😄

During therapy last week Fisher definitely made big improvements! She was able to hold her head up while being supported while sitting!

Oh how these two love each other!!

So now it’s time for a short story that I’m so excited to share. Bobby had a show at the Listening Room last Saturday night. The whole family drove down to listen to him play.. it’s one of our favorite things to do. When the show was over around 10:30 pm, both kids were asleep (like usual) and we usually hang out for about 30 minutes for the guys to meet their fans. It’s really a fun time because you meet so many different people! Bobby had one group of girls from CA that wanted to talk to him bc they liked his music, so he went and chatted with them for a little while. By this point it was probably around midnight and usually I would be complaining saying “let’s go!” For some reason that night I just felt calm, and felt like all was good with the world and it was ok that I had both kids out after midnight and I wasn’t exhausted 😂

Then I see Bobby walking towards me with the group of girls from CA. (Silently I’m thinking greattt not only do I get to talk to a group of girls that are hella gorgeous while I hadn’t showered in probably a day or two, but Fisher was waking up hungry, while Wells was asleep on me.) But I put on a smile and went with it.. and oh how happy I am that I did.

Bobby introduced me, Wells, and then Fisher. He said she’s very special, and I made the comment “yes, she’s very rare.” Usually we don’t say anything about Fisher and her syndrome but it just came out naturally. One of the women we were talking to said she has a son that has a rare genetic disorder. Bobby and I both asked what it was. Can you guess what she said?!

Yup you got it “2q37 deletion syndrome.” Before she could even finish her sentence Bobby and I were both in awe telling her no freaking way! Come to find out, I had been following her on IG because of the #2q37deletionsyndrome . I knew she looked familiar but I couldn’t put my finger on it until she said that about her son.

We ended up talking for about 30 mins or so and the different similarities our kids have. I fully believe everything happens for a reason and we were meant to meet Rachel that night. Many things had to happen in order for our paths to cross and I am so glad they did!

It may be blurry, but I love this picture so much.

This week Fisher did good eating for Ms. Linda during feeding therapy and had a successful GI appointment. She is gaining weight and moving closer to that 13 lb mark. She weighs 12lb 13oz 🙌🏻

As I being to close this monthly chapter down.. I realized I didn’t touch base about the ENT visit!We went and saw the ENT department on Friday. Unfortunately, they put us with a Nurse Practitioner instead of an ENT doctor. I felt as if she didn’t listen to me really and definitely didn’t read anything really before hand. It was very frustrating. We left with the intent of her wanting Fisher to take Claritin for six weeks. Then we would test her hearing again and if she failed, put tubes in and remove her adenoids.

Needless to say, I wasn’t happy when we left there and waited to talk to Dr. Lohse on Monday. She informed me to try the Claritin for 2 weeks, we’d been waiting so long she needs something done sooner. But instead of starting Claritin Tuesday, fisher woke up with a fever of 102.7. She didn’t have any other symptoms, just a fever. She slept for about 13 hours that night!! She’s been a lot better since, but now big brother has a stomach bug, right before we leave for the beach!

On that note.. I’ll definitely be posting pictures of Fisher’s first beach trip! Might not have much details, but at least you can enjoy the cuteness!

Click Here To Donate To Fisher’s Medical Fund

Saturday Starving and Sunday Surprise

NOTE: Written on Saturday!

We’re on day 4 of being at Vanderbilt.. so far Fisher has had blood drawn 3 times (stuck with the needle 6 times), had urine samples collected 3 times, one ultrasound, and today marked her MRI. Last thing on the schedule is the sweat test next week.. that’s it for now at least..

We were told yesterday would be NPO (nothing by mouth) starting at 8:00 am (4 hours before her MRI) since hers was set for noon. So at 7:20 I started feeding Fisher to try and get as much in before 8:00. At 7:45 I asked the nurse to get me a little more milk and she said she was checking to make sure she’d be going at noon, because they called and said they could get her in at 8… which wouldn’t work because of the 4 hour npo schedule. So I said if we’re on track for noon I want more milk since I had 15 mins left. So our nurse went to check on the time and said we were going to hold off on anymore food… ok cool, we’ll get in earlier ( or so I thought)

The clock hit 12:00 and of course our girl had been crying for about 30 mins ready to eat.. and still no word if we are close to going.. around 12:15 I popped my head out asking if we were still on track for 12:00 even tho it was after.. they said they’d call and check… “looks like 30-45 more mins” Finally around 1:50 they took her back to the mri area… we waited there for an hour before they took her back for the actual MRI. I was told it would take around 45 mins to an hour and then they’d bring her back to me.

After an hour and 25 mins, she arrived back to me! Sleeping beauty did a great job and they said we’d have results within 24 hours. Unfortunately, since Fisher was so tired after, she didn’t wake and eat until 5:20pm… she went 10 hours without eating (we stopped eating at 7:20am) Of course I was not a happy momma when the whole reason we were there was because of weight loss and they let her go so long without eating.

Since she had gone so long without fluids, they decided it was best to give her some fluids through her IV to help hydrate her.

We had a good night together overall. Sadly, we missed Joseph and Bailee’s baby shower, but Bobby and Wells were there in our place!

We were told that lactation would come in to see us on Monday to talk about ways to increase my supply when pumping, because we would have to do feedings by bottle for a little while.

Skip to Sunday:

Welllllll to our surprise, Sunday morning when the doctors made rounds, they said we would be discharged that day!! Since fisher had been gaining weight, we would be able to leave and go home. Our feeding scheduling would be this: she would bottle feed 110ml, then I’d nurse her, and lastly, I’d pump. This would happen every 3 hours. When I say it’s like having a newborn all over again, is an understatement. The extra work of having to bottle feed and pump is a nightmare. I love nursing my girl, and hopefully when we go for our follow up next week, I can nurse more, bottle feed less.

So Fisher and I packed our bags and waited for Bobby and Wells to come pick us up once we got the go ahead to leave! The nurse came by and took out Fisher’s IV and signed the papers to discharge.

Nothing better than coming home to a CLEAN house, freshly made bed, flowers, and a beautiful card from Welly and Bobby! 😍

Coming up- Tuesday we have our Cystic Fibrosis Sweat Test at 11:00 and possible follow up with the hematologist/oncologist.

Please continue to pray for answers, growth, and a healthy happy girl!

CLICK HERE: To Support Fisher’s Medical Fund

What they don’t tell you…

Thursday was a fairly good day for Fisher. They came back for more bloodwork since some of the enzyme levels from her liver were higher than normal. They wanted to see if it was consistently higher or just a fluke. Watching your baby be pricked with a needle, multiple times to find a good vein sucks. It’s hard. Definitely not what you want to watch or hear. Luckily Bobby was here to help and love on our sweet girl during it too.

Basically we just hung out, pumped, and bottle fed. We attempted supplementing a little formula with my breast milk and it was not pretty. Fisher gagged and almost threw up and then wouldn’t take a regular bottle for a little while until she knew it was only breast milk. I tasted the supplemented milk and it was nasty. I don’t blame her for it liking it.

So of course me being the mom I am. I started calculating how many ml or oz she needs of just breast milk to get 600 calories in a day. If I could get that amount in her, we could bypass supplementing all together, as long as she gains weight.

She also got to FaceTime her Mawmaw and loved seeing her!

Kisses for mawmaw

We also got a visit from Poppy and she got some good snuggles in.

She did great eating on Thursday, just came up short 30 calories for the day!

Onto Friday.. not the best day. The team made rounds early morning and said they were going to do more bloodwork and another urine sample to send off. At the time I didn’t think to even ask what they’re testing for or why, I was focused on discussing her feeds and intake. We met with the dietitian and she said we could keep on the track we were doing just make sure we get those 600 calories in for the day. They also ordered an ultrasound of her stomach, liver, kidneys and adrenal glands. Lastly, they ordered an MRI of fishers head for Saturday and put in for the outpatient Sweat Test to check for cystic fibrosis.

Gaga loving on Fish while getting an IV

The IV specialist came in to draw blood and I wasn’t sure if I could handle another round of pricking and digging. (Luckily Gaga was there to help) They stuck her once, dug around for minute and said they’d have to try another vein. Next was vein two. She finally got it after a while of trying and started to draw blood. She was t getting enough from it, and when they tried dispensing it into the vials they had, it was clotting. Therefore they needed to try a different vein. This time they decided to have a IV specialist with the ultrasound machine come in to find a deeper, larger vein. He used some numbing spray (why haven’t they used this before!) and he finally got a vein. What took over an hour to get a vein and draw blood was probably the hardest thing I’ve gone through.. yes me.. they don’t tell you in birthing class or books or hell even your friends that one of the hardest thing is watching your child in pain and not being able to help. Hearing her scream and cry louder than ever before and a new cry you’ve never heard before makes you sick. I thought I was going to throw up at one point I was in so much pain for her.

So I’m telling all you mommas and soon to be moms, this shit is hard. People will tell you lack of sleep and colic babies are rough.. that’s true.. I’ve endured both.. but I’m warning you now that feeling knowing you can’t do anything to help your child when they are hurting, is harder than anything.

The rest of the day went fairly well. We had her ultrasound done in our room, and had lots of snuggles and play time. We even had visitors in the evening!

Big brother, Wells, and sweet cousin, Emerson (can’t forget baby Everlee)

Saturday’s update coming soon.. please continue to pray for our sweet girl and for answers.

CLICK HERE To Donate To Fisher’s Medical Fund

We’ll take the suite

Yesterday, 4/2 we had our GI appointment for Fisher. I was nervous for this appointment because the day after my last post, when we went to neurology, we found out Fisher had lost over 5.5 oz in 2 weeks. I was praying we gained some before our GI appointment… unfortunately she lost 2 more oz in a week. Our GI doctor was not happy about the weight loss and decided it was best to admit Fisher to Vanderbilt. She said I am doing everything possible for her, but it seems something else is going on internally that we need to find out what it is. So we went home.. packed our bags, and waited for the call.

They called today, 4/3 and said they had Fisher’s room ready, we asked for the penthouse suite.. we got the 8th floor! We loaded up the car and made our way to our home away from home.. well it seems that way sometimes.

The doctor came by and ran a quick game plan by us. Instead of nursing Fisher like normal, I will have to pump and bottle feed her so they can measure how much she is taking in. They put in for blood work to be done, stuffed her diaper with cotton balls to do a urine test, and basically wait and see..once they see how much she’s eating and we get bloodwork back, we can get another game plan.

So for now all I ask is for prayers for our sweet girl. We aren’t sure how long we will be here, but we won’t leave until she is consistently gaining weight. Thanks in advance for the thoughts and prayers! I will try to update daily, if not expect an update when we’re discharged!

CLICK HERE: To Support Fisher’s Medical Bills

8 months!

Hi friends! It’s been about a month since I’ve updated everyone on our sweet Fish. I guess no news is good news, right?

Over the past month we have been working hard in therapy (all of them but especially PT). We are kind of at a stand still with our movement. She’s trying hard to roll over but just can’t quite make it over all the way yet. We are however rolling from back to side and squirming around like crazy!

Started with my feet at the piano and ended up like this!

We even made a special weekend trip to Paragould, to see Gram and Granddaddy! Wells and fisher had a blast spending time with them! Fisher was introduced to the piano I grew up playing with my grandparents!

Great granddaddy and Fisher
Great granddaddy, Gaga, and Fisher
Great Gram and Fisher

That Sunday we rushed home for our family pictures with Crystal Freemon Photography! I won an Instagram contest with Katie Camargo and we both got a 30 minute session with Crystal. She did an amazing job with the kids and our pictures are absolutely amazing! Here are a couple.. it’s so hard to pick my favorite because they are all so good!

We also celebrated Ash Wednesday and St. Patrick’s day! Fisher slept through mass luckily!

Onto the food topic.. my favorite one.. just not when it comes to our sweet fish. We have been on hold with trying new foods due to blood in her stools. We go back this week to drop off another sample to see if she still is having GI issues and if so, we will make a decision on what to cut out next. On the positive side, Fisher loves her some peas, sweet potatoes, and pumpkins. We gave up on green beans because she didn’t like them.

We are slowly.. and I mean very slowly, gaining weight! Last week we weighed, 12 lbs 2 oz! We love being over that 12 lb mark. We’re supposed to be gaining 2 oz a week, but looks like we’re gaining one oz every other week. Definitely not but I’d like but we’re trying. Hopefully we can figure out the GI issues and start gaining soon.

Overall, the past month has been pretty good to us. Over the next month we have lots of doctors appointments. Tomorrow we see neurology to see about the “nodding” that continues. Luckily our pediatrician said not to worry, but if you know me.. I’m worried. Therefore we’re going to see what Dr. Brault thinks about it. Next week we see GI, and the following week we have another ultrasound and see the hematologist/oncologist. The week after that we have Fishers 9 month check up and the next week we go to Kentucky for some appointments.

Please continue to pray for our sweet Fisher. We appreciate all of the love, prayers, and support!

CLICK HERE to Donate to Fisher’s Medical Fund

Tons to do Tuesday!

The day finally arrived! Tuesday, February 26th was our full scheduled day at Vandy. We started out with our first appointment with Nutrition at 8:30.

We discussed the foods Fisher can and can not tolerate, as well as, how to help her gain weight. Unfortunately she has fallen off of the growth chart for weight and height. We’re going to monitor the “length to weight” growth chart and make sure she stays on track gaining around 2 oz a week.

Currently Fisher nurses every 2 hours. She takes a 4 hour nap during the day (along with many others but at least one big nap) and goes to sleep around 8 or 9pm and sleeps until around 1 am. She nurses then goes back to sleep for 2 hours, wakes up, nurses, sleeps 2 hours, nurses and is up for the morning. The nutritionist said we will only be able to have one 4-5 hour sleep stretch a day and that we need to stick with nursing every 2 hours. We will have to wake her if she’s sleeping past the 2 hour mark.

We are also going to look into seeing if Fisher has a soy allergy. We’ve still have some stomach issues with her and they said soy allergies usually go hand in hand with dairy allergies. We have a GI appointment next Tuesday, so hopefully we have some more answers then.

Foods we can have:

Pumpkin, peas, green beans, and sweet potatoes

Foods we can’t have: too many haha

After the nutritionist appointment, we had her ultrasound on the adrenal gland.

After that we had an Echo done on her heart to check to see if the ASD had closed up. We then met with Dr. Thomas. He informed us her PFO has grown down but not completely closed. It’s normal to have a little gap still. He said 3% of adults have a gap still. She has officially graduated from the Pediatric cardiology department!! Wahooooo one less doctor!!

After Cardio, we met with Dr. Benedetti (hematologist/oncologist). He let us know that the nodule on Fisher’s adrenal gland has changed slightly in diameter, but nothing too concerning. We are going back in 6 weeks for another ultrasound. If everything is ok then, we will go every 3 months for scans. He said he doesn’t know what the nodule is. It could be one of the three options still. He said he’s not worried about it, but we will keep monitoring it.

Overall, our appointments went well. Our girl is slowly growing and we’re making huge improvements. She is able to hold her head up a lot better and is rolling side to side.

Please continue to keep her in your thoughts and prayers!

P.S. Today is #ShowYourRare day! Please help raise awareness for our 2q babe by sharing and spreading the word!

GoFundMe-Fisher’s 2q37 Medical Fund