Archive for the 'Medical' Category

28
Aug
13

Breaking the Weight Barrier

Yay! We had a well visit and he weighed over TWENTY POUNDS!!! (20.8), BMI 15.5, and managed to stay on his curve within the bottom 1% for his age.

Since he’s looking good, and growing well we get to try coming off high calorie infant formula and just add some other types of high calorie liquids to his diet along with his food. I am so excited. We said goodbye to bottles about two months ago, and now we get to say goodbye to formula.

I know that it probably seems like a weird milestone to be so excited over. His high calorie formula and weight gain have been at the center of all my worries and fears since he was born. I feel like a very large scary elephant has finally started to lumber out of his corner of the room.

Sterilizing gallons of water and zillions bottle parts. Giving myself second degree burns leaning over a steam bottle sterilizer at 2am. Feeling like we should buy stock in Neosure. Going to cardiology. Having metabolic tests run and then run again. Weight checks.

Done, Done, Done!

For anyone out there still struggling through failure to thrive, or failure to gain, or any other preemie-ness things, I am praying for you and thinking of you, Moms and Dads. I hope you get some unexpected milestones to celebrate, too.

We celebrated last night by taking a picnic dinner to the city skate park and watching the bigger boys do flips and turns. He was ready to push his little umbrella stroller out and join them on the course.

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25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

19
Apr
13

Learning to “Mom”

Yesterday, I received a coupon for a portrait studio at our town center shopping area. Due to RSV restrictions, money matters and my germophobe preemie mama feelings, we hadn’t gotten any professional shots taken.

I realized Drake would be 14 months actual on Saturday and his 1 year old due date is fast approaching. I decided to treat myself early for Mother’s Day and get his portrait done. I picked out two outfits. His unable to be worn to church Easter outfit and a cute dino romper set Nana sent for his birthday.

I put all thoughts (mostly) out of my mind about the germs that are probably lurking where so many other sticky hands have roamed. I did make his appointment for the first slot of the morning, though. It has to be the cleanest, right? I would have loved to hire an independent photographer, but that’s the kind of luxury we’ve given up while I’m working part time to keep him out of daycare.

While we were waiting, another mom came in with a set of newborn twins. She managed her two infant carriers much, much more efficiently than I was managing my wanting to crawl on the floor 14 month old and diaper bag. I didn’t hear what the photographer asked precisely, but I heard 3.3 pounds and 5 pounds and then 5 weeks early. I really wanted to strike up a conversation with her, but I didn’t. I was exhausted, and insanely jealous of her 5 day NICU stay. Crazy, right?

It did make me wonder if other moms feel the same way about my 34 day stay, though. Really except for the separation and the weight gain issues and some pesky A&B’s, our NICU stay was fairly uneventful. Most of our medical episodes have been since we left the NICU behind.

I think I’d probably be  a little more on the sane side if I hadn’t had to take a ride in an ambulance with a bluish son due to reflux. My 30+ years of  RN nursing and mommy experience mother going white with fear and telling me to call 911 plays in my head all the time as we approach that day.

I wish that lady all the best. I wish I’d had the courage or inclination to strike up a conversation. Next Saturday, is our old due date. How would things have been if we’d gotten this close? Or just 5 weeks closer? What if? The bane of all preemie mamas regardless of course.

In two weeks, we have the birthday party of the little boy who was born to a friend of our family. She was due three days after me, and had her son two days before his due date. They get compared all the time, and it is sometimes such work for me to look away and not worry.

He has come so far, and he does SO SO much. I feel guilty for not just living in OUR moment.

The pictures did turn out fairly good. I spent about twice what I planned on after all. Happy early Mom’s Day to me.

Oh yeah, my mom lesson today was never, ever take a large bag of “props” to a photo shoot for a 1 year old. No clothes that wrinkle or have collars either. Do take another adult and cheerios. I think I can make D do almost anything for a handful of cheerios. Still so much to learn! 🙂

07
Mar
13

The Other Side of the Coin

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward,  and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition,  a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

Russell’s Feet – A Parent blog

No Surgery for Clubfoot Parent Yahoo Group  To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)

 

4th Cast Mother's Day 2012, 2.5 months old/12 days adjusted

4th Cast Mother’s Day 2012, 2.5 months old/12 days adjusted

18
Feb
13

A New Preemie Family

As I gave advice to my friend on her brother and his wife’s needs over the phone Sunday afternoon, I was taken back to that place where nothing from anyone was a comfort or help.

The scariest moment. When 10 people rushed into a triage room with me, and looked at some monitors and made me get in a fetal position on my left side  and put an oxygen mask on me. Hands down the worst moment of my life. I had just arrived by ambulance 20 minutes prior from our neighborhood hospital that only has a Level II NICU. My husband hadn’t yet been allowed to join me. When I think about that moment one year later, I still get nauseous.

The new preemie mama and daddy that were made today had twin girls at 33+6. The first baby came naturally, but an emergency c-section was needed for the second. Please keep this new NICU family in your prayers. I hope their little ladies are feeder/growers and home soon! And all my best to the mama as she heals.

Ironically, this friend and her husband were our support the night I was admitted. They came to the hospital to support my husband through a night where the slightest movement from me would make baby’s heartbeat coming through the monitor fade away. They are wonderful, beautiful people and I am so sorry prematurity has touched their family almost 1 year to the day after they stayed up all night with us.

02
Feb
13

Flu Strikes Back

We followed all the instructions we were given. We got our shots. We avoided large gatherings. We washed, washed, washed and went through gallons of sanitizer, but it still happened.

I started getting worried Thursday night. I had a kind of throat tickle so I pulled out a medical mask and put it on. The next morning, I knew I was sick. I was achy and feverish. When two doses of Tylenol did nothing to break my fever, I called my doctor and then headed to urgent care.

2 hours and a flu test later, Influenza A was my diagnosis. Say what? But, but I did everything right. Apparently, I won the flu lottery.

Now, I’m going to go back to napping and praying that my fellas don’t get it. Daddy did an awesome job cleaning and taking care of things until grandma was able to take D out of this germy house.

Please, please let him stay well.

28
Dec
12

Christmas and The Dreaded Weight Follow Up

Looming over our Christmas celebration was the dreaded weight check on Wednesday. It was coupled with Grandma’s bout of bronchitis that she came down with two days after keeping Drake for us.

So far no signs of cold or respiratory issues from the little guy, thank God. However, it just really brought home how vulnerable he is even with limited contact. It feels like everyone in our world is sick right now.

Christmas consisted of Mommy and Daddy taking turns poking holes in packages and trying to get him interested. At 10 months, you are apparently only interested in eating the bows. He did perform pretty well for two sets of video conferencing of our families though. We skyped my parents and sister in from Louisiana and we facetimed my husband’s mom and grandmother in (see bronchitis above), so despite preemiehood and RSV lockdown all grandparents got to witness the first ignoring of the gifts for the bows!

Wednesday morning, we woke to the pitter patter of freezing rain and sleet hitting the roof. Luckily, road crews had pre-treated all the main roads so it wasn’t too bad getting him to his pediatrician’s office.

After a short wait in the well child waiting area, we were called back. Side note, as part of my preemie mom issues I always try to get the 8am appointment before other germ infested people have been touching all over the waiting area.  We went through the feeding questions and then came time for the SCALE. I really did hear JAWS music, I swear.

15.5lbs

After a month of extra feedings and new foods, that’s all we get. 12 oz  in 4 weeks. So then we waited for the doctor to bring his growth chart in. 15.5 was definitely not enough to get him back on his 1% track.

His pediatrician decided we should lay off some of the newer foods and resume 26 calorie/ounce formula feedings. My heart sank, and I was flashed back to the NICU and our metabolic scares. I knew he hadn’t gained enough just by looking at him, so it really shouldn’t have been a great shock.

Then came the time for the rest of his physical. His doctor took a much longer time with the stethoscope than normal, so I started thinking oh no respiratory infection.

“Have we ever checked out a murmur?” he asked me.

“Nope, everyone from his Neonatologist to the resident during June Refluxisode to you has heard it, but then not found it again.” I answered.

“Oh, but he has been seen by cardiology?” WTF?

No, he has not. And so with failure to thrive and now a very distinct murmur we have a cardiology referral.

So to keep our fun day after holiday streak going, we have an EKG and Cardiology appointment at Children’s on the 2nd.

Then, I realized I scheduled his 12 month wellness on his birthday. Here son, we can’t have a big party for you because of RSV lockdown oh and HERE ARE THESE AWESOME SHOTS! Best mom ever, right?

C’mon 2013, you can do better than 2012!

 




Drake’s 3rd Birthday

February 20th, 2015

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