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

The good news!

Great news! We got the call, and Fisher’s levels came back normal. Our plan is, we go back on the 26th to scan her adrenal glands and see if the nodule has grown any. If there hasn’t been any change, we are set to have her kidney scans every 3 months. If it has grown or any changes other than going away, we will have to do another urine test.

We also tested out some Oatmeal Cereal with Fisher. She loved it, but it didn’t love her. When we went to G.I. last Tuesday, we tested her poop and found blood in it. So we had to stop the cereal. We waited until it was out of her system and started trying different foods every 3 days. We tried avocados.. didn’t work. It tore her stomach up as well. Sunday we tried peas. She loved peas and peas love her!! Tomorrow we are going to try green beans.

So Foods she can’t handle:

Dairy: Oatmeal Cereal (wheat): Avocados:

Pretty sure the list will grow but for now that’s all 🙂

GI set up an appointment with a nutritionist for Fisher, so we can understand what foods to try and not try.

On February 26th we have about 5 or 6 doctors appointments. So we will update after it. Until then, we just have therapy every week and trying new foods.

A huge thanks to Dani for setting up the fund page for Fishers medical. I am beyond thankful for all of the love and support we have. Things have been tough but we’re making it through. Shares and prayers! Thank you!!

The waiting game..

Well I started this post on Tuesday and time got away from me, as well as, catching that little thing called Strep! So this mama has been stuck in bed since yesterday and trying to feel better! Thank goodness I have an amazing husband, parents, and friends to help out! I honestly don’t think I would have survived without them (yes yes I’m being over dramatic, but try nursing a teething 6 month old and not being able to take in fluids so you become extra dehydrated) anyways.. this post isn’t about me.. here’s what I typed Tuesday….

Today’s the day we had Fisher’s hearing test and hemotology appointment, as well as, Wells’ first dentist apt.

First up, hearing test.. wasn’t really a hearing test just a hearing screening. She failed this. They ran tymps on her and they were flat (which I told the audiologist before hand they’ve been flat all week bc I’ve tested 3 times at our office) anyways.. since she failed the screening and has congestion still, she wanted us to come back in 6 weeks to repeat. If she fails again and has flat tymps again, we will have to see ENT for possible tubes.

Second appointment was to see the hematologists/oncologist… of course when you see this sign you get a little more nervous..

So we met with Dr. Benedetti about the nodule they found on Fisher’s adrenal gland. Here’s what he said: there are three things the nodule could be…

1. A hemorrhage

2. A benign mass

3. Neuroblastoma (a cancer that is treatable and curable)

They did a urine test to see if her adrenal glands are secreting high levels and if so then most likely it’s #3.. if her levels come back low, it’s most likely #1 or #2. We will have another ultrasound in 6 weeks and then push off to every 3 months. Dr. Benedetti doesn’t believe it’s Neuroblastoma, he said it would be very rare if it was.. I had to remind him who we were talking about. We will find out either tomorrow (Friday or Monday at the latest)

On the plus side Fisher rolled over for us on the doctors table!

Then we had Wells’ first dentist appointment! My mom has taken him and since it was their first visit they wouldn’t see him without bobby or me. So off we went as a family to his first appointment and man did he do good!

So so proud of this sweet boy! He seriously was amazing 🙂

Will update everyone as soon as we find out Fisher’s test results!! Until then, please pray the rest of the family doesn’t get strep especially my babies!!

What’s two more?

Well we have had a very busy last two weeks!

Last Monday we had Fishers 6 month check up with Dr. Lohse. Everything looked good except sweet girl hasn’t been gaining weight like she should. She’s in the 1st percentile for weight. Dr. Lohse called for Fisher to get her hearing tested again as well as, get her Kidney scanned. Since Fisher is at higher risk for Wilms Timor, We are set for scans every six months.

The next day we had fishers GI follow up. Stacie was concerned with Fisher’s weight gain, or lack there of. She wanted to supplement some formula, but I was against it. Since we are at 6 months now, we are allowed to start solids after her swallow study!

Wednesday, Bobby and Fisher took a fall down the stairs. Luckily neither of them were hurt! That night Fisher started “snoring” and sounded congested. We waited it out thinking it was just related to the fall. We took her Saturday to get adjusted and to see her pediatrician. Fisher had an ear infection and congestion. They wanted to do another round of antibiotics (the same one that gave her thrush) and we decided to try to heal it all naturally without the antibiotics. Thankfully we were able to with garlic drops and adjustments 🙂

Fast forward to this week….

Fisher had her neurology follow up on Monday afternoon! Aunt BaeBae went with us and talked with the neurologist about her EEG.

We talked about the results and how there was no seizure activity (yay!!) and that we would follow up in 6 months for another check. Other than that were done with neuro for half a year!

Thursday, we had to be at Vanderbilt by 7:30 for her swallow study and kidney scan. Big brother Wells came with us to make sure sister was okay!

Fisher did AMAZING during the swallow study! She didn’t aspirate at all. She did have some “extra phlegm” sitting down in the back of their throat but she cleared it and did beautifully! So proud of her!

We left there and took Wells to school, Bobby went to work, and Fisher and I prepared for our two therapies. We went to feeding therapy where Fisher tried some organic oatmeal and she LOVED it!!

Were gonna work on feeding her oatmeal once a day for a week, then try some greens!

We went to Occupational Therapy after Feeding Therapy and Fisher did fairly good grabbing toys and bringing her hands together! We’re still so close to rolling over.. maybe just another week or two!

After therapy we left and went by the store to grab a couple of things before we headed home… thats when I missed a call from Dr. Lohse. She left a message asking me to call her back before the end of the day to go over Fishers Kinsey Scan results.

I immediately called back and here’s what we found out..

Her kidneys did not show any tumors- so we are in the clear for Wilms Tumor for right now.

Fishers right kidney is normal.

Fishers left kidney is abnormal. She has a malrotated duplex left kidney.

Okay okay. What does this mean? Well, basically if we interpreted it correctly, her left kidney is rotated upside down and has an extra part on top of it, like stacked up. We will now have to see a nephrologist. (#1 added to our list of specialist)

And then they checked her adrenal glands.

They found a small nodule on her left adrenal gland. It was so small it would only be able to be seen on an ultrasound. Dr. Lohse spoke with a doctor at Vanderbilt and decided it would be best if we were seen fairly soon. We have an appointment on Tuesday to see a Hematologist. (#2 added to our list of specialist)

Since Fisher is already more at risk for Wilms Tumor, and her syndrome is so rare. They aren’t sure if she’s more prone to getting other tumors, therefore they want to do bloodwork and urine work and then monitor her nodule very closely.

Of course I immediately had to “go there”. Why couldn’t we just have one good day. One day of accomplishments. One day of all positives. One day where things didn’t take a turn of uncertainty. But then I was reminded that we can live without a kidney and most adrenal nodules are benign. Very rarely are they malignant. (Then again our girl is very rare and lately if things can happen they do.)

So now we have added two more specialists to our list. What’s two more?

We’re all staying positive! We continue to pray and know that a God has a plan for us. He has Fisher in his hands and even though these are viewed as minor setbacks, we can only move forward!

Please continue to keep our sweet, beautiful girl in your prayers. She is so strong and tough, I try to pull my strength from her. She radiates with beauty and personality. I am forever grateful she’s ours.