Archive for July, 2012

26
Jul
12

Life is PRECIOUS

Sometimes you can’t win the battle, but other times miracles occur. I read a story today about 4th smallest baby to survive finally going home from the NICU. The story didn’t make me wonder whether her family had insurance, money, or the ability to pay for their special needs child.

No one ASKS for a preterm baby. No one PRAYS for a special needs child. Sometimes God gifts you with a miracle, and you as a parent, have to rise to the occasion.

Stories like this are what horrify me about the insurance and healthcare debates. Have people in the US really become this vindictive, cynical, faithless, and spiritless? It’s scary. Who on earth posts a comment that a child is not worth saving. I’d like to believe none of these people were parents, but unfortunately I’ve seen too much of the world to believe that.

I’m really just in shock. I’m sure some of it is postpartum issues I’m dealing with, but I am really and truly upset over this.

Here is the link to the story:

http://abcnews.go.com/Health/worlds-smallest-surviving-babies-home/story?id=16714169

I hope I don’t get backlash from posting on my facebook about it, but I figure anyone upset with me for my opinion can just go away. I don’t need negative, cynical, mean people in my life. Especially not as I navigate the dark waters of life after the NICU, clubfoot treatment, and prematurity.

Now I am not judging parents for making quality of life decisions for their child.  Sometimes there is a point of no return and I am so thankful to not have been faced with that decision. However, society has no right to dictate who will and won’t be saved. If we take that out of the hands of medical professionals, I fear for us all.

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24
Jul
12

Family

Sunday was a BIG family milestone. We all got to attend church together on Sunday! It was Drake’s first visit to our church home since he was born. With our pediatrician’s advice to stay on RSV lockdown until mid-June, hot & stormy summer days, and one Sunday of our parish taking a trip to Indy to volunteer at our church’s general convention we hadn’t been able to get him there.

It’s another thing I had planned, like his birth, that didn’t go according to plan. Our church baptizes babies, but we have decided to wait until next summer for Drake’s. It’s hard to remind ourselves that we are on God’s time and Drake’s time, but it’s a good lesson to learn.

It was fun to watch him look around in amazement at the stained glass windows. He slept through most of the service cradled in Grandma’s arms. During announcements, our vicar welcomed us back and introduced the congregation to the baby they had been praying for. My eyes welled up and I lost it as they started applauding.

After church, we were overwhelmed by excited faces and we took pictures in the church and in the beautiful garden. Sunday really reminded us why we selected our church home. We have missed them all so much. I’m not looking forward to more isolation this winter, but I know we will be welcomed back with open arms upon our return.

For a different kind of family gathering, we went with my inlaws (including great granny, great aunt and great uncles) to lunch afterwards. A normal Sunday. Just like all the ones I had growing up. I was so thankful to finally share one with my son and husband.

16
Jul
12

Challenges

Two issues this week for baby Drake.

1. How to get him to take more formula.

I’ve been trying for two weeks to get him up to the 32 ounces recommended by his pediatrician at our last visit. He prefers to do everything, including eating, in Drake time, so it looks like I have a call to make this week. When he gets tired of taking a bottle, he just sucks it in and spits it out. Like I won’t notice.

2. Socks that work well with his clubfoot brace, and getting him fitted for a bigger one.

Grr baby socks. I need about 2 sometimes 3 pairs a day. These little boogers are great at hiding out and getting lost in the laundry. His grandma gave us a pair that worked PERFECTLY. The top doesn’t squeeze his leg and they fit well. She couldn’t remember where she had picked up this pair. I finally found some at Target yesterday, but they were all sold out of his size. 😦 His toes have reached the end of the sandals so it’s time for new ones! This will be his first move up since starting bracing on June 12th. I’m getting nervous about his appointment to check progress in August. I hope and pray we have been doing things right.

In the meantime, Mommy is trying to let go of some of the guilt as well as prep the family for RSV season looming ahead. I know we have several months, but Drake has two surgeries slated for November. He still won’t qualify for Synagis, and I’m scared to death of him being placed under general anesthesia. I’m hoping that if I prepare everyone for our becoming hermits again this winter there won’t be any backlash. We’ll see…

12
Jul
12

1 month down, 4 years 11 months to go

Today, we have completed one month of brace wear for Drake’s clubfoot treatment! We have 3 months to go of 23/7 wear, and then we’ll switch to 16 hours.

We are blessed with such a calm little fella. It only took him two days to get used to sleeping in it. I really need to capture the look of pure bliss that crosses his face during his “free” hour every night. He kicks his little legs independently of each other and just revels in the sensation.

I know what it feels like to get rid of a pair of heels after a few hours so I can only imagine what it feels like to be strapped in “as tight as they’ll go” sandals all day.

09
Jul
12

One Hot Day

Yesterday, the temperature was slated to reach a whopping 105 degrees. That is very hot for our area of NKY. We had plans to hang out with the baby in our wonderful AC.

Around 1pm, my husband ran out for drinks and some chips and salsa. About 2 minutes after he left our driveway, our power went out. I grabbed my phone and called the electric company. (I was the FIRST in our area to report the outage! New mom/preemie mom prowess.) The status message said problem with their equipment estimated restoration 5PM. Yuck.

We decided to head to Applebee’s for lunch because we know they are non smoking. Normally, we would avoid having Drake out in that kind of heat at all. It tends to get very smoggy here in this kind of weather. Not good for preemie lungs.

After a bottle for Drake and an appetizer sampler for Mommy & Daddy, we decided to pack up and go check on the house.

It was now about 3pm, and the estimate was still being given as 5PM. We weren’t ready to admit defeat and head to Grandma’s (whose power was actually out for 8 hours compared to our 4!). The house still felt moderately cool compared to the outside, so we decided to hit the bookstore for some more books for Drake and try again after 5PM.

We called from the bookstore about 4:45PM, and the restoration estimate had been pushed back to midnight! Sigh. Time to pack up. We were overjoyed when we pulled in the driveway and saw the porch lights on. Yay!

Two incidents other than trying to keep Drake and ourselves cool, cast a shadow on the day for me. This is the typical conversation when people notice Drake:

Random Stranger: “You have a beautiful baby!”

Me: Thank you!

Random Stranger: “How old is he?”

Me: Four months

Random Stranger: “Really? He’s so small.” (because I totally don’t know how old my kid is, right?)

Me: Really. He was 10 weeks early.

Followed by them acting awkward and me feeling both like I should apologize for my small baby and for failing to carry him for 9 months. It brings back every insecurity, every feeling of dread from sitting beside his isolette in the NICU.

The worst and most painful memory it brings into full focus is the day I was discharged from the hospital. My doctor conspired to keep me admitted for 5 days, but that’s the limit of my insurance for a c-section. After a day of the L&D floor nurses & staff trying their best to get me to “check out,” I was exhausted and I was trying desperately to hold myself together and not become an emotional wreck in the middle of one of the largest hospitals in Cincinnati.

Another mother was leaving at the same time. She had her husband holding the car seat. She had her baby cradled in her arms. I had my parents, my husband had to work, and the memory that I had just held my child for the first time for 15 minutes and now I had to abandon him there to the care of strangers. I will never forget that moment. That was the worst moment of my life.

Every time I hear, “he’s so small,” I’m taken to that place 4.5 months ago when I left the hospital without a baby in my arms.

 

06
Jul
12

Wellness Visit

I dread these visits. We get our baby’s height and weight and find out how he’s doing when compared to babies of his birth age instead of his gestational age. We also get asked the developmental questions.

These things make me so afraid.

I don’t want to be afraid. I want to revel in my amazing son who has gained 9 (!) pounds since he was born 2.5 month early. This was a mixed visit. We had the good news of being on the chart for the first time. 1% yay! Followed by the need for one more doctor, and ENT. Drake has a cyst in the corner of his mouth that he’ll have to have surgically removed.

He’s an amazing baby. Sleeping 7 hours a night, starting to coo and smile. We’re living on Drake time and it’s a fun time zone.

We got to take him to his first large family gathering since the end (finally!) of RSV season in our area. It was an awesome 4th BBQ at Grandma’s.

 




Drake’s 3rd Birthday

February 20th, 2015

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