Posts Tagged ‘milestones

22
Jan
14

First Day at School

Today was a huge first Drake went to school! He had snacks, circle time, and slept on a cot. Mommy got to work a full day, and he spent time with peers.

He did amazing for a kid that’s only been with his parents or grandparents. Yay school!

Now to gain back that 3 pounds so you can’t feel every inch of his spine.

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27
Dec
13

Merry Christmas!

We never think we’ll get here . Sure, I know what it feels like to get up 3 times a night to make sure a hernia isn’t strangulated. Or to cook high calorie formula at 3am because I forgot to wash the dishes on schedule. Or just because I feel like making sure he’s breathing.

Tonight, both my fellas are in bed and I’m wide awake because we are going to visit Drake’s preschool tomorrow and sign up for the 2 year old class.

I spent the day today organizing the crazy amount of things Santa and relatives gifted little guy with. A large box of “baby” toys are packed up ready to go in the attic. More because I can’t bear to part with them yet rather than the “just in case” reason the grandmas are hoping for.

Christmas was wonderful. D smiled for Santa, and opened his gifts and demanded, “OPEN, oooopeenn” for each one so he could play. We kept our gifts small and took suggestions from his EI therapists on what would help him most over the next six months.

Those two ladies in Early Intervention have been the biggest blessing and biggest healer of my psyche. It’s hard to believe I was ever worried about that program. Hearing how we are doing the right things has been balm to both mine and Daddy’s souls.

Tomorrow feels like the start to our new year. This is the year of the potty, and the Magical (yeah, right) catch up year of 2. Twenty two months old. He still refuses to eat on occasion. Spends other days begging for cookies or chocolate milk. It’s actually pretty fun to see the looks on people’s faces when I allow him that sip of coffee he’s begging for.

When your 22 month old is just 20 lbs, he gets anything (a taste at least) that he wants and actually asking for it is like winning the Powerball lottery. It was a beautiful holiday, so different from the quiet season in isolation last year. I feel blessed and thankful beyond words.

One moment in particular was very precious to me. When I was 21 weeks pregnant, my husband and I attended our church’s 5 o’clock children’s Christmas Eve service. It was December 2011. They asked for the youngest child to help with placing the baby Jesus in the creche in the Nativity scene on the altar. It brought so many memories of services as a child, being an acolyte,  and my family 800 miles away. I sat through most of the service in tears or filled to bursting with the joy of the thought of my child possibly being the youngest the following December. Instead of the 17-19 weeks I thought I had left, D was born in mid-February about 9 weeks after Christmas. Instead of an Spring baby, I have a Winter one. And Christmas 2012 was spent at home, just the 3 of us.

Christmas 2013, my child finally walked in the procession with me holding him, and put the baby Jesus in the manger to the sounds of O Come All Ye Faithful. It was the first night he said Jesus. It was the first night he sang along matching tone with the piano. Two years of milestones. Two years of fear and joy and wonder and disappointment. Two years of miracles.

Peace to all preemie families out there getting through each day in the NICU, or RSV isolation and beyond. I wish you the joy of the season and hope for your future.

I feel awesome after this week of celebration and rest. I am ready to face the annual follow-ups and IFSP meetings I see on January’s calendar. I’m not feeling quite so ready for the first day of school, but I’m sure we’ll survive and come to enjoy that, too.

Another big Christmas milestone? He actually got to visit AND enjoyed Mall Santa?! 🙂

Santa 2013

11
Oct
13

Meeting Family

D and I are visiting family in Louisiana and Texas this week.

It feels so weird to travel on the cusp of RSV season. This time last year we had already been in strict isolation for a month because he wasn’t gaining weight and hernia surgery was looming.

Yesterday, D got to meet his only first cousin. She’s 4, and they are both only children. They played together very well despite the age difference.

It’s really hard for me to live so far away. I’ve always been close to my parents, sister & brother. Then we grew up in a small town so there are other folks I miss tons as well.

In addition to the emotional cousin meet, we had to go through some things of my granny’s. Another reminder of NICU days. She passed away 2 weeks before D was born.

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08
Aug
13

Everyday Miracles

Today was an ordinary day.

Great Grandma came over and we took a walk.

Drake wore a baseball hat without freaking out for the first time.

We went and had Blizzards for miracle treat day! Our local CMN hospital is Cincinnati Children’s. Home to his NICU neonatologists and his follow up specialists.

A regular day. We sang songs and ate homemade pizza. We practiced our therapy exercises and he asked to take a walk! (Wahk, wahk?)

I love living a miracle. Every. Day.

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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.

 




Drake’s 3rd Birthday

February 20th, 2015

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