Mommy Guilt: EI

There’s a lot of second guessing going on in my house right now. With D’s low birthweight and left c lubfoot, I could have tried to qualify him for early intervention services a long time ago. I asked the questions at his well visits and his first NICU follow up clinic, but since it wasn’t pushed very hard we opted to wait.

Of course, now I have to wonder if we waited too long and that extra year could have helped him. Despite his Neonatologist’s telling me that the work I’m doing with him has nothing to do with his low muscle tone and gross motor delays, I feel responsible.

His appointment for evaluation is set for Monday, so if anyone that’s done this dance before has any tips I’m all ears and eyes. 🙂

To add to the mommy guilt buffet, we went on a tour of his school for next year on Friday and Monday he came down with a yucky stomach virus. Fever, running at both ends, the whole nine yards. I know we’ve been taking him out in the world more after over a year of isolation and he could have picked it up anywhere, but way to make me second guess myself and his readiness universe!

Today, he is playing and resting much better, so I think we are through the worst of it. Just in time for our 2 days to Chicago with Daddy during a business trip next week. It will be our first overnight away as a family that isn’t at a hospital! We’re staying downtown and plan to take a tour of Wrigley Field, visit the Lincoln Park Zoo, walk on the shores of Lake Michigan, go to Navy Pier, and shop on  the Magnificent Mile. I can’t wait for our first big adventure!

 

 

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?

 

 

 

 

Learning to “Mom”

Yesterday, I received a coupon for a portrait studio at our town center shopping area. Due to RSV restrictions, money matters and my germophobe preemie mama feelings, we hadn’t gotten any professional shots taken.

I realized Drake would be 14 months actual on Saturday and his 1 year old due date is fast approaching. I decided to treat myself early for Mother’s Day and get his portrait done. I picked out two outfits. His unable to be worn to church Easter outfit and a cute dino romper set Nana sent for his birthday.

I put all thoughts (mostly) out of my mind about the germs that are probably lurking where so many other sticky hands have roamed. I did make his appointment for the first slot of the morning, though. It has to be the cleanest, right? I would have loved to hire an independent photographer, but that’s the kind of luxury we’ve given up while I’m working part time to keep him out of daycare.

While we were waiting, another mom came in with a set of newborn twins. She managed her two infant carriers much, much more efficiently than I was managing my wanting to crawl on the floor 14 month old and diaper bag. I didn’t hear what the photographer asked precisely, but I heard 3.3 pounds and 5 pounds and then 5 weeks early. I really wanted to strike up a conversation with her, but I didn’t. I was exhausted, and insanely jealous of her 5 day NICU stay. Crazy, right?

It did make me wonder if other moms feel the same way about my 34 day stay, though. Really except for the separation and the weight gain issues and some pesky A&B’s, our NICU stay was fairly uneventful. Most of our medical episodes have been since we left the NICU behind.

I think I’d probably be  a little more on the sane side if I hadn’t had to take a ride in an ambulance with a bluish son due to reflux. My 30+ years of  RN nursing and mommy experience mother going white with fear and telling me to call 911 plays in my head all the time as we approach that day.

I wish that lady all the best. I wish I’d had the courage or inclination to strike up a conversation. Next Saturday, is our old due date. How would things have been if we’d gotten this close? Or just 5 weeks closer? What if? The bane of all preemie mamas regardless of course.

In two weeks, we have the birthday party of the little boy who was born to a friend of our family. She was due three days after me, and had her son two days before his due date. They get compared all the time, and it is sometimes such work for me to look away and not worry.

He has come so far, and he does SO SO much. I feel guilty for not just living in OUR moment.

The pictures did turn out fairly good. I spent about twice what I planned on after all. Happy early Mom’s Day to me.

Oh yeah, my mom lesson today was never, ever take a large bag of “props” to a photo shoot for a 1 year old. No clothes that wrinkle or have collars either. Do take another adult and cheerios. I think I can make D do almost anything for a handful of cheerios. Still so much to learn! 🙂

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….

Home Stretch to B-Day

I can’t bring myself to order the birthday supplies. It’s 22 days to Drake’s birthday. We’ve picked out the perfect decorations, cake and tableware. It was fun to do so, but I just can’t make myself check out and pay.

We’ve agreed to a small gathering at Gammy’s (hubby’s mom) house of only great aunts & uncles so about 7 people including us. Adults only as we’re in RSV isolation still.

He is so amazing. He deserves his journey of the past year to be celebrated with unwavering joy. The timeline of memories leading up to Drake’s premature birth are painful and/or guilt inducing ones.

On this day last year, I found out my Granny was dying of perforated bowel. She was 93 and suffering from advanced dementia.  She died on the day of my baby  shower February 5, 2012.  I wasn’t able to travel for the funeral as I was already classified as high risk. Knowing now that I had Drake 15 days later, I’m so glad I followed that medical advice. 15 days is the difference between a 27-28 weeker versus a 30+2 weeker. What I did experience was hysterical grief. I loved my grandmother, and not being able to say goodbye on my own terms plus pregnancy hormones was an awful combination.

Then the following Friday, I was in a minor car wreck as I lost control in some ice and slid into the car in front of me on the way home from work. Everyone was fine, and my car sustained only minor damage.  I called the doctor right away and they advised me that as long as my kick counts were going ok I could wait to come in at my regular appointment time on Monday. Everything checked out fine. My blood sugar from the Gestational Diabetes was well under control as was my chronic hypertension. I wish I had stayed home that day as my husband asked me to, or left work the hour early I was supposed to.

My appointment to preregister for the hospital was scheduled for 2/20/12 at 1pm. My son was born at 10:09am by emergency cesarean because he was breech and I was 6 cm and 85% effaced.

Some things are foggy whether due to medicine, exhaustion, stress or magnesium. I don’t know.

My darling boy. What an amazing fighter you are.  Mommy is still sorting out getting all the what ifs and if/thens out of my system.

 

Christmas and The Dreaded Weight Follow Up

Looming over our Christmas celebration was the dreaded weight check on Wednesday. It was coupled with Grandma’s bout of bronchitis that she came down with two days after keeping Drake for us.

So far no signs of cold or respiratory issues from the little guy, thank God. However, it just really brought home how vulnerable he is even with limited contact. It feels like everyone in our world is sick right now.

Christmas consisted of Mommy and Daddy taking turns poking holes in packages and trying to get him interested. At 10 months, you are apparently only interested in eating the bows. He did perform pretty well for two sets of video conferencing of our families though. We skyped my parents and sister in from Louisiana and we facetimed my husband’s mom and grandmother in (see bronchitis above), so despite preemiehood and RSV lockdown all grandparents got to witness the first ignoring of the gifts for the bows!

Wednesday morning, we woke to the pitter patter of freezing rain and sleet hitting the roof. Luckily, road crews had pre-treated all the main roads so it wasn’t too bad getting him to his pediatrician’s office.

After a short wait in the well child waiting area, we were called back. Side note, as part of my preemie mom issues I always try to get the 8am appointment before other germ infested people have been touching all over the waiting area.  We went through the feeding questions and then came time for the SCALE. I really did hear JAWS music, I swear.

15.5lbs

After a month of extra feedings and new foods, that’s all we get. 12 oz  in 4 weeks. So then we waited for the doctor to bring his growth chart in. 15.5 was definitely not enough to get him back on his 1% track.

His pediatrician decided we should lay off some of the newer foods and resume 26 calorie/ounce formula feedings. My heart sank, and I was flashed back to the NICU and our metabolic scares. I knew he hadn’t gained enough just by looking at him, so it really shouldn’t have been a great shock.

Then came the time for the rest of his physical. His doctor took a much longer time with the stethoscope than normal, so I started thinking oh no respiratory infection.

“Have we ever checked out a murmur?” he asked me.

“Nope, everyone from his Neonatologist to the resident during June Refluxisode to you has heard it, but then not found it again.” I answered.

“Oh, but he has been seen by cardiology?” WTF?

No, he has not. And so with failure to thrive and now a very distinct murmur we have a cardiology referral.

So to keep our fun day after holiday streak going, we have an EKG and Cardiology appointment at Children’s on the 2nd.

Then, I realized I scheduled his 12 month wellness on his birthday. Here son, we can’t have a big party for you because of RSV lockdown oh and HERE ARE THESE AWESOME SHOTS! Best mom ever, right?

C’mon 2013, you can do better than 2012!

 

Surgery Dates and Anniversaries

Yay. Yay. Yay. We finally have our date for Drake’s inguinal hernia repair. By the time we have it done in October, it’ll have been almost 5 months from the time I noticed it and took him to see his pediatrician in a panic. I’m so, so glad that his ENT was able to coordinate with the surgeon and will be able to do his mouth injection without an extra bout with general anesthesia. Please God, just keep that little bit of intestine from kinking up for a few more weeks!

On September 7, 2011, I saw my baby’s heartbeat for the first time. I cried. It was at the end of 32 of the scariest hours of my life up to that point. On September 6th, I started having some heavy pink and brown spotting. After a sleepless night, I called my Gynecologist/OB’s office. My first appointment wasn’t scheduled to happen until the 15th.  The nurse instructed me to head straight to the hospital and have blood drawn.

I got a call about 230pm that my hcg levels definitely showed I was pregnant, but they were concerned about my progesterone level. It was a 9.7 which is on the very low end of normal. They set up an ultrasound for 30 minutes, and I left home to go pick up my husband from work along the way.

We only had to sit in the waiting room for about 10 minutes, and I remember feeling like I was going to throw up the ENTIRE time. Not due to morning sickness either. I only had 1 or 2 incidences of throwing up usually I only had mild nausea.

148 bpm and two pictures of a little bean. I was discovered to be 6 weeks, 5 days along. Estimated due date of 4/27/12.

Ironically, his heartbeat was 148 at the final ultrasound of my pregnancy, too. Taken on February 9, 2012. Eleven days before his birth.

The spotting lasted for 5 weeks. Almost until I was out of that scary first trimester. A friend tried to convince me to push for progesterone supplements when I talked to her about things. She’d had her own pregnancy scares, woes, and triumphs. Of course, the doctor’s office turned me down since it was my first pregnancy on record.

I didn’t push.

Sometimes I wonder what if I had.

 

 

 

 

 

 

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…

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.

 

Smile

Tomorrow Drake will be 4 months old, 7 weeks adjusted. Lately, I have been longing to see him smile. I know that all babies do things in their own time and that is doubly, triple-y true for preemies, but I want to see him smile at me.

I know another new mom. She was due 3 days after me and had her son at term. I think she’s awesome and her little boy adorable, and she’s had her own things to deal with. But…it’s hard to watch what could have been so often.

To just have “new mommy” worries, and not medical ones. I’m so scared that I’ll miss something with his hernia, or not feed him just right and cause another reflux-i-sode. Or that I’ll use his braces incorrectly and he’ll have to start his clubfoot treatment again.

I want to let go of the feelings of doubt and guilt from going into labor so early. I didn’t have any infections or signs of pre-eclampsia. Why did my water randomly break. Maybe if I just had the answer?

So smile for Mama, little one. Each day that I spend with you makes me forget the guilt, the worry, and the fear. Each day I watch you fight your battles so effortlessly and with such a patient nature for a wee man makes me fight to be happy and find that new normal for you.