Archive for the 'NICU' Category

05
Nov
13

Healthy Holidays

It’s that time of year again! I’m thinking of and wishing well all preemie families who have started their lockdowns. It is so necessary and so unfun. You are doing something wonderful for your kid(s) though!

I think the hardest part of our two isolation seasons was the reactions of loved ones who just didn’t understand. Wanting to share our new family with the world and being unable to was rough, and it adds insult to injury when people closest to you treat you like an overprotective crazy person.

Hand to Hold posted an awesome article today about the dangers of RSV and cold and flu for preemie’s immature immune systems and lungs. I posted a sign on our front door, but the free printable they include looks so professional it may keep you from having to endure the “why do I have to wash my hands” talk. 🙂

http://handtohold.org/resources/helpful-articles/5-myths-rsv/

We had a windy, rainy Halloween. Luckily, the weather halted just long enough for the wizard (daddy), lion (mommy), and flying monkey (drake) to walk around to the neighbors.  With two years of being off the grid so to speak, I didn’t really know my neighbors. Halloween taught me just how kind many of them are as they watched at doors and rushed down driveways with candy so that kids could get some trick or treating in and avoid the severe weather.

We had an impromptu pizza and cupcake party at our house with gammy, great granny, a couple friends and us. Then gammy let D stay all night so we could go to a concert. It was an awesome night. Last year, we were changing belly dressings and trying to function on no sleep.

I’ll put some costume pics up soon!

 

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15
Sep
13

Happy Neonatal Nurses Day

This is a day late because Drake has his first bad cold and I did not have time to finish.

My mama is a Registered Nurse. I always knew her job was special, but I never truly understood the value of nursing until I witnessed it from the NICU.

Our nurses held and rocked and fed my baby boy when I left each night. They supported me when no breast milk came, and they made sure D got donor milk as long as he could.

They made scrapbook pages and graduation certificates. They gave the first bath and taught me how.

They made me sit that first week before I could hold him even though I wanted to push.

Thank you for your expert care and kindness.

07
Jun
13

One Step At A Time

Never again will I post BEFORE we go to an assessment or appointment.

So we have the good and the not so good.

1. Low muscle tone and hyper flexible joints are holding back his gross motor skills like walking. The team also thinks its causing pain/discomfort when sitting still, so it’s why he has trouble focusing on things like eating.

Suggested: Get enrolled in Early Intervention and if he’s not walking solo in 3 months (18 actual/16 adj) we need to consider AFO options after a consult with PT.

2. His verbal skills are awesome. 11 words and going.

3. His weight/height are on his personal curve and increasing at a rate that pleased the neonatologist.

4. They want him in the follow up clinic program until at least 2 actual. Next appointment in 6 months.

5. We toured his future preschool today. He has to be off the bottle completely and walking independently for the half time 18-24 mo class. The will give him his extra calorie formula in a cup as needed and have cared for preemies previously. Plus, Asst. Director is a family friend.

So now to set up the EI evaluation, and hope.

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.

 

29
Apr
13

A Little Cloudy, A Little Wet, A Lot of Fun!

What a great day of fun with family and friends! And how inspiring and healing!

I really wish I had made the time to attend the family team poster event sponsored by our NICU. That display of posters for angel babies and other NICU grad families was probably the single most powerful thing I have witnessed since last February. Such beautiful loving tributes.

Amazing to see so many preemie, NICU, and birth defect affected families coming together for a cause they feel so strongly about.

Plus, I got to stand next to a NFL player!

The best part was of course the great snapshots of our son getting to enjoy a large event for the first time.

Family Team Photo

Family Team Photo

Waiting For Start

Waiting For Start

Ominous Clouds, 4 miles to go

Ominous Clouds, 4 miles to go

Check Point NKY, halfway

Check Point NKY, halfway

Crossing Bridge from NKY back to Cincinnati

Crossing Bridge from NKY back to Cincinnati

Crossing the finish line!

Crossing the finish line!

Good Sam was our NICU hospital

Good Sam was our NICU hospital

# of Premature births in Ohio

# of Premature births in Ohio

Why We Fight

Why We Fight

It was a celebration, and I needed it. We exceeded our team goal by $200!

 

27
Apr
13

March for Babies

Tomorrow we walk. Maybe in the rain, maybe in the sun.

Jodi of Peek-a-Boo ICU says it best, I think, “We fight because babies shouldn’t have to.”

Team Drake-growing baby dragons is going to walk for

Our amazing former 30 weeker, Drake.

For Margaret Elmer, an angel too soon.

For Jaron, born at 32 weeks and Mallory and Annabel born at 33 weeks.

For Baby Branch, born at 29 weeks far from home.

For all our Nicu friends in DAND.

For all congenital birth defect warriors, fighting to get their hearts, feet, or other challenges conquered.

For the preemies and NICU families we know only through their stories Owen, Jack, JP and others.

This walk’s for you!

Much love,
Team Drake

20130427-224400.jpg

20130427-224415.jpg

27
Apr
13

Age is Just A Number

19 minutes ago, my son reached 12 months adjusted age.

Today, we used our Zoo membership we received at Christmas for the first time. It was a gorgeous 65 degree day, and Drake just loved being outside and riding in the stroller.

He especially loved the ducks. He makes a sound we are pretty sure is a quack at them. He also was fascinated by the cows. We just did a 2 hour jaunt. Since we have an annual pass, there’s no reason to try to make him do a whole day and everything at once.

I was a nervous wreck reminding the other adults to wash hands and not let him touch surfaces. All I could think about was the fact that we did our job and kept him isolated that first year, but now what will happen.

And I hate it. I just want to enjoy family outings and milestones. I want to let the fear and horror go. It’s time to try to move on somewhat. I know that it is.

A family member was with us. She pointed out a very, very pregnant lady to me and said, “Look at her. Doesn’t she look miserable and ready to pop? Aren’t you glad you never had to go through that?”

WHAT?

I just said, “No, I would much rather have walked around miserable than go through the NICU and not bringing my baby home right away.”

What I wanted to do was slap her.

I have no way of knowing how uncomfortable the 31st through 40th weeks of pregnancy are. I only made it to 6 months, 2.5 weeks.

But I know what it’s like to lie alone in a hospital bed sobbing because you haven’t touched your child that has a tube down his throat helping him breathe as you listen to babies crying in all the rooms next to yours while you try to pump out trickles of milk that just won’t come.

I can’t be philosophical today. I can’t be thankful that my journey wasn’t as hard as it could have been.

All I can do is cry over the fact that I should be celebrating a 1st birthday, and instead I’m worried about my 17lb 14 month old who is refusing to eat again suddenly.

I could keep ranting, but it definitely won’t make me feel better, and it will make me look like the crazy person some people think I am these days.

After the zoo, we went to the grocery store. The awesomeness of doing this mundane errand as a family was ruined for me by the cashier’s oh he’s cute how old?

14 months..

Really? He seems small.

…sigh

I changed my mind. Can we be on isolation until he’s 18?

 

 

 

 




Drake’s 3rd Birthday

February 20th, 2015

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