Archive for the 'Uncategorized' Category



07
Aug
13

Priceless

There’s a New York TImes article floating around preemie land. It discusses parent preparation for extreme prematurity and learning to make difficult medical decisions for your child.

I’m not going to link the article. The comments section is awful, and I wish I’d taken the advice of my sister and other preemie parents and avoided it.

My son was a 30 weeker. He was 2lbs, 14oz (1304g) at birth. He had trouble gaining and at his lowest was 2lbs, 9oz (1162g). He had a fairly easy NICU journey. We had a lot of trouble with A&B’s and jaundice at first. He’s considered very low birth weight.

Without medical intervention, my son would have died at birth. He was not breathing and was ventilated, moved to CPAP, and on nasal cannula during his NICU stay.

I loved Kangaroo care, but at first every time we’d try to settle in together he would have and “episode”. That respiratory rate and oxygen number ticks down and you try to stay relaxed. Breathe baby, breathe. Stay with me.

He has some muscle tone and other developmental delays that we are working through with the NICU follow-up clinic and Early Intervention. It is thrilling to watch him learn and progress.

I firmly believe there is no way to prepare parents for the NICU. Every stay is different, every child and their medical needs is different.

I’m glad we didn’t have to make the hard choices. We were never faced with a no hope or extremely dire situation. We would have done our best, and I think that’s what most parents do.

Never tell me that due to cost or developmental delays or medical issues that saving a life isn’t worth the trouble or expense. I just won’t agree with you. You’re not God, and you don’t know the outcome.

I do think my doctors during my rocky pregnancy could have prepared me better, and armed me with some knowledge. That’s the only thing I would change about D’s birth.

I will admit that the fear of another preterm birth experience and what it would mean for that child does make me shudder inside when people ask when he’s getting a sibling.

30
Jul
13

Getting Started with EI: Developmental Intervention

Today we’ll have our first visit with our DI. She’s going to work on various things with D, and I’m excited about this meeting.

I have seen amazing changes in him just from the little bit of focus we’ve learned how to spend on some different things. I was really frightened about Early Intervention at first.

It made me feel like a failure that he’s requiring additional oversight, and it brought back all those old feelings from the start of our preemie journey. The actual experience has been very empowering. Even when I was stressed that he might not qualify after some areas of improvement were identified.

Last week, I had a huge set of meetings and projects at work so D spent a couple days with the “grandmas,” his Great Granny and my M-I-L. During that time, he had his first playdate with a little boy we know. This little boy and D had due dates within 3 days of each other. Drake is chronologically older by about 3 months. I had a rough weekend contemplating this conversations with my MIL. 

Me: So how did it go with, B?

MIL: They didn’t really spend much time together at the playground.

Me: Oh?

MIL: Well, B can run all over. D just can’t keep up.

Ouch, another one right in the preemie mama feels. Now I have to decide is more interaction with his peers a good idea? Do we hold back more and just concentrate on therapies for a while? He loves other kids, but I don’t want him steamrolled. I’m definitely having second thoughts about the 1-2 days of school we were planning on in the fall with other 18 month olds.

I think I’ll just plan on taking him on a tour when the year starts. If they have a spot left and being around the other kids goes ok, it’s meant to be. His pediatrician thinks healthwise it’s time to try him out. 

Preemie mama zen. I got this. 🙂

27
Jun
13

Vacation

We are going on our first family vacation! We still have not heard from EI about D’s results, and we should probably save our savings. But…sometimes you just have to go for it and live life, right?

We’re all very excited for this week away. Slightly less excited about the plane flight with a 16 month old. 

We’re heading to Arizona and the Grand Canyon. I’m sure we’ll have lots of interesting adventures and beautiful pictures to share when we get back.

I am going to try my best not to worry over delays and therapy, and just enjoy my little family and the fact that we made it this far. 

This time last year we were going through 23/7 bracing and worried over his hernia, and I really was not doing well. There were a lot of sleepless nights and tears as I tried to process his prematurity and my body’s failure. I wish I had taken the time to get help, but I am thankful to be feeling so much better this year. 

We leave tomorrow, and get back next Friday, so we’ll be on “internet silence”. Enjoy the summer, ya’ll! 

20
Jun
13

Chicago Adventure

We had an AMAZING time in Chicago on our first family overnight. Drake was great in the car, and we made it to Daddy’s meeting venue with plenty of time to spare.

Mommy and Drake spent the day at Frontier Park in Naperville. They had a free children’s concert and we climbed at the playground, took a walk, and finished with a picnic.

We picked Daddy back up and headed through rush hour traffic downtown to our hotel. After checking in and unloading, we headed to Hard Rock for dinner.

The awesome host gave us a large corner booth. It was perfect for a kid who’d spent most of his day in the car and it didn’t overlook any other patrons.

D bopped and grooved to every song that came on, and DEVOURED a potato boat from our combo appetizer.

The next day was spent exploring the Magnificent Mile and taking a tour of Wrigley Field. We did learn that with a 1 year old you don’t fit in nearly what you expect to, and that pre2’s Drake is a pretty awesome travel buddy.

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03
Jun
13

World Clubfoot Day

Today is the first World Clubfoot Day as declared by the Ponseti International Association raising awareness for this treatable but potentially disabling congenital condition.

June 3rd was the birthdate of Dr. Ignacio Ponseti, developer of the Ponseti Method, an effective nonsurgical method of treating talipes or Clubfoot.

I am thankful that this method of treatment existed for Drake, and that the orthopedic team at Cincy Children’s was trained in its use.

Not all children with talipes have access to trained medical staff and afo’s for correction. Raising awareness is so important.

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6/4/13 Addition:

Have to add a bit to this one. I felt awful for missing most of the first World Clubfoot Awareness day so I posted this from bed last night with the hubby asking me to put the iPhone away.

The picture above is one of my only ones from the NICU that show Drake’s clubfoot. We actually didn’t even receive that diagnosis until his Orthopedic visit one month after his discharge. We are so very lucky that his correction seems to have worked and is holding beautifully. Most infants are casted within a few days of birth. Of course, his first cast was 4/26 which was still 1 day shy of his due date.

While in the NICU, he received therapy as part of each diaper change. We were taught to do the hip and foot exercises. Since I was having so much trouble with milk, I was (eventually) so glad to have another way to feel like his mom and that I was proactively doing SOMETHING for his well being.

Thank you to Dr. Ponseti, who would have been 99 yesterday, and the Ponseti International Association for giving us a nonsurgical treatment and a day to raise awareness.

I was so excited to mail my first pair of “night-night” shoes to a family in need last week. Drake’s size 0’s went to a new home thanks to the Clubfoot Shoe Exchange founded and run by mom Janet whose son sees a doctor in the same Cincinnati Children’s group as Drake. You can find them on Facebook if you know of a family in need due to insurance woes. We have been so blessed to have all of Drake’s shoes covered.

I promise that I don’t jump on the bandwagon of every cause out there. Prematurity and Clubfoot awareness have become very dear to me and my family.

Also, I have actually had people ask if I was a smoker because I had both a preemie and a child with clubfoot. The answer is NO. We do not have a reason for either, and that is probably the most hurtful thing anyone has ever said to me.

 

 

24
May
13

Long Week

It was a long, long, long week. We had a wellness visit, and I have a big work project forcing me to put in way more than my usual hours. 

Well visits and their gosh durned weight checks are enough alone to put me in a bad mood generally. We rang in this time at 17.86 lbs at 15 months, so we’ll keep plugging along and trying to find stuff he will SWALLOW. 

Anyway, there is a light at the end of my tunnel. My mom, dad, and sister will be here tomorrow from down south. We’ve got first baseball games, a butterfly show, and more zoo trips to look forward to. Along with some good old fashioned hanging out and enjoying each other. 

I truly want to enjoy this summer, and not spend it in anger at myself. I think that’s why I avoided blogging this week. Anything I could write was not going to set the tone I want this summer to have. We will have our wonderful summer. We’re going to MAKE it happen. 

So here’s to drinks on the porch, lightning bugs, and wading pools. A family trip to Sedona, our 13th Anniversary, and trips to the park. LOVE summer!

Happy Memorial Day, folks. Remember your servicemen and women and be safe!

11
May
13

Haunted

Every time I shifted, the steady whoosh-whoosh of the fetal monitor would disappear. I was so scared to go to sleep, afraid that the tiny little man inside would disappear.

The look on the triage nurse’s face at L&D of the hospital I was transferred to just before she slapped an oxygen mask on me and propped me up on my left side.

An entire night of trying to convince the medical team that I was having “constipation pains” and not contractions. I refused to make a sound, believing that would make him be born sooner.

We’re supposed to go to a birthday party today at 1pm. This little boy was born 3 days after my original due date and the differences between the two boys and their development…

Oh I know I’m not supposed to compare, and I can remember that so easily in the comfort of my formerly RSV isolated home.

But I am sitting up, awake, terrified of a 1 year old’s birthday party with other full-term kids. How stupid is that?

With a million “what ifs” running through my head. The main one being, “What if he gets sick?”

But we can’t live in our safe bubble forever…




Drake’s 3rd Birthday

February 20th, 2015

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