Posts Tagged ‘preemie



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.

06
Jun
13

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 

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…

18
Mar
13

May the Road Rise to Meet You…

Slainte!

One year ago, my husband and I walked into the NICU at 8 am on Saturday morning, March 17. We had our cooler bag with bottles of my pumped milk from the night before and a “My 1st St. Patrick’s Day” bib. When we arrived at Drake’s pod, we were greeted by our favorite nurse, Ms. C. There was a surprise for us as he had just finished his first full feeding from a bottle!. She gave us the bottle with a handwritten certificate and a green tuft sprouting from the top. We found out at rounds that we could be going home in 2 to 3 weeks if he took to bottle feeding well and there were no more A&B’s or drops in weight gain. This was the first hope we had that Drake might actually be home before Easter.

“May God hold you in the palm of His hand.”

Yesterday, we actually got out of the house and went to our very good friends’ home for Corned Beef & Cabbage and some Rocksmith. D’s very first St. Patrick’s Day party!

 

 

14
Mar
13

Alone No More

This week I am so thankful for a brave mama in my area who decided to start up a local support group.

I was usually at the NICU during the day, so I didn’t run into many other parents. I definitely had my moments of feeling extremely lost the past year as none of our friends or family had ever had a NICU experience.

That’s something the preemie internet community definitely provides as we share our stories and support each other, but it’s nice to know there’s someone close by that you could invite to coffee if you wanted to.

That’s all I’m going to say about that for now as it’s a small, private group. Anyone in the Cincinnati area is welcome to join who has experienced a NICU stay with their child though so feel free to message me if you’d like to be pointed in that direction.

I had two reminders on facebook today of WHY we have endured RSV isolation for most of his first year. My bout with Influenza A was a scary reminder, too, but these images make my heart stop and are keeping me up tonight.

One was a post on my college band alumni page about a couple who graduated a bit after me that lost their son at only 13 months old after a brief illness. The second was of one of my college roommates full-term infant son with a breathing treatment mask on due to RSV.

So even though the long, cold winter is drawing to a close and spring can be felt in the air. I will not be lazy or forget exactly WHY we are doing what we do. It’s so tempting to go ahead and take him with us on errands, but we have worked so hard to be healthy. He has worked too hard.

And my heart just aches for these families dealing with loss and illness….

05
Mar
13

Preemie Milestones

One year ago today, we were on the 14th day of Drake’s NICU stay. We found out that he would have his PICC line removed after morning rounds.

One less wire, yay!

Of course, I also remember that this led to some slow weight gain, concerns about metabolic disorders, and 26 calorie/ounce formula (which he’s still on).

But March 5, 2012 was a day of celebration. It wasn’t the first preemie milestone we celebrated or the last, but it was one more footstep closer to HOME.

 

cuddle PICC dad picking up

 

This was earlier than March 5th, but it showcases the PICC cuddle as Daddy goes to lift him for my first Kangaroo care with us all present. He was 6 days old.




Drake’s 3rd Birthday

February 20th, 2015

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