Sunday, August 16, 2015

A Challenge

Faith has made amazing progress through her therapy at the ASSERT program at USU and through her time at the head start special needs preschool. As we are preparing for the start of a new school year I had been finding myself excited for what is to come and feeling hopeful.

Faith had an "end of year" celebration at ASSERT last week, which marks a 2 week break before the new school year begins. They made a slide show of all the kids with pictures of this last school year and this summer. Faith has begged to watch it daily since, eagerly shouting names of the kids she went to ASSERT with!

"Wook, Wook,  it's **insert names***" is heard with every. Single. Picture.

The therapy team had noted how far she had come this past year in playing social games and engaging other kids to play.

But then, you have days like today and your heart breaks and you are whipped back to the reality of how far we still have to go...

Today, my sweet twin nieces were given a name and a blessing. In the LDS Faith (Mormon) we don't believe in infant baptism. We believe babies are born without sin and we baptize our children later after they have reached the age of 8. Because of this, we mark the birth of a new child with a special priesthood blessing in church on Sunday in front of family, friends, and the ward (congregation) with whom we attend church in our sacrament.

After this meeting was held,  family and friends of my in laws left the rest of the regular block (we attend church for 3 hours on Sunday. We have sacrament, Sunday school,  and our priesthood/relief society meetings) to go to a park across the street from the church to further celebrate the event.

My girls, of course, ran to the toys. They were delighted to play with other kids. Phillie,  of course, being a charmer, had no trouble convincing others to play with her and joining their games. I watched Faith happily play with her and then decide she wanted to move on to something else.

She walked up to a group of girls playing on the merry go round. They probably spanned in ages from 5 to 7 or 8. She tried to join them and they immediately stopped the merry go round. They said to look out for the "baby"...  and my heart sunk.

I wasn't mad at these girls.  I understood immediately "why"... but I hurt for my sweet Faith. She was so confused why they wouldn't let her play. She shrugged it off quickly and went and sat on the swings, waiting and watching for anyone willing to join her.

She wasn't much younger than these girls. Cognitively,  she probably is on the same leveL as the youngest... but Autism and her speech delay have led to a HUGE communication gap.

I forget in all the strides we make that she still doesn't speak like an almost 4 year old girl. Of course they thought she was a "baby". She walked up, said "hi" and then proceeded to babble words and phrases they couldn't understand.

She has made improvement,  but her social sphere so far has only consisted of her sister and kids like her. It was like a shot to the heart to have to remember that at some point,  she will have to engage with kids that do not have the same struggles she does... and with that realization, the fear returned.

Fear of the questions. Fear of the unknown.

Will she be able to make friends in school?  Will the other kids be able to understand her once she starts kindergarten?  Will she date in high school?  Go to college?  Get married?


While I sat, surrounded once again by fears I had let myself forget...something happened.

My sweet nephew Max... a "tween"... a young man with a considerable age difference to Faith noticed her on those swings all by herself.  He walked over and sat next to her and started trying to show her how to swing... and when he realized she didn't get it, he got off his swing and pushed her. He helped her swing super high so she could gain momentum and then got on his swing next to her and started to swing with her. He talked to her...even though the conversation was painfully one sided... and he stayed with her until we had to leave to go home.

So this leaves me asking one thing:
As your kids go back to school this year, please encourage them to be the "Max" of their school or daycare. Please remember that there are mama's out there like me who have hearts breaking because they see how badly their child wants to be included and there are kids like Faith who are trying really hard to learn how to ask to be included but aren't quite there yet.

If there are more "Max"es in the world, mamas lIke me won't have to worry so much.

In the meantime,  I will do all I can to help my Faith learn and grow and be the best version of herself.  It has to be incredibly frustrating for her to know what she wants and not be able to express it...but I have faith that someday she will be able to. Please teach your kids to have patience with her and other kids like her until then.

Hugs and loves until next time, darlings.

Dear Michael Max (A Birth Story),

July 7 was a day that came with excitement and terror. The doctor had made it clear that he was concerned about baby being growth restricted,  and by how suddenly it seemed to manifest.  Early induction coupled with a very small baby tripled the risk of c-section,  but it was well known that it was better to take this risk and have a healthy baby, or relatively healthy one, as opposed to continuing the pregnancy much longer and running the risk of delivering a stillborn baby. One final ultrasound to confirm everything was fine and the date was set. The doctor said a specialist had said we could wait if we wanted, but he couldn't shake the feeling we needed to deliver ASAP. Mommy was feeling the same way, and the rapid decline in baby's movement continued to make her nervous. 
The big day arrived. Due to medical necessity,  mommy was the FIRST on the docket for induction. Mommy and daddy made their way to the hospital bright and early... Well, not so bright since the sun wasn't up. 
It wasn't the first time that mommy had been induced,  but it was the first time she had been induced when she wasn't dilated. 
The nurses explained how Cytotec worked, made the order at the pharmacy and more waiting ensued until the pharmacy sent the drugs up.
Mommy actually did really well with the pain and contractions. So well, in fact,  that she told daddy he could go home and be productive and she would call when she needed him.
Round 1 of Cytotec- 4 hours- barely dilated to a 1. The doc stretched it to 1 1/2 and broke mommy's water.  Contractions got worse,  but were still manageable. They decided to hold off on Pitocin because it looked like mommy's body was starting a good pattern of contractions. They thought we may get through without it...
Wishful thinking I guess...
4 hours later- no change.
Pitocin on...
4 hours later- still no change
4 hours after that... Daddy came back to stay (he had popped in and out all day). Still no change but mommy had finally had enough. Thanks to the Pitocin the contractions were completely unbearable.  As the nurses switched shifts, I asked for an epidural.  
The new nurse suggested a dose of Fentanyl before the epidural.  She said she found it helped her patients through it. I agreed to try it even though I HATE the loopy feeling.
I have to say it was the BEST epidural experience I have ever had. Contractions were manageable and I was able to arch my back and sit still.  It was smooth and easy. 
Mommy decided to file that trick away for when you (hopefully) have another brother or sister.
2 hours passed.... still no change but mommy was comfortable.  They put this giant peanut shaped ball between mommy's legs to hopefully convince you to move down. 
2 more hours... the doc was leaving to go home. No change. He advised nurses to advise me that if there was no progress by the time he came back at 6 AM, we may need to talk c-section.
Mommy prayed. 
They took the uncomfortable peanut away so she could sleep.
1 hour later,  the nurse came back to check vitals and to get you back on the monitor.  They kept losing your heart rate and they knew it made mommy nervous.
Mommy mentioned she felt pressure. Lots of pressure. The nurse laughed and said she would check again but the likelihood of mommy progressing from a 1 1/2- 2 to 10 cm dilated in an hour was slim.
Mommy's prayer worked. It was time to push. 
The doctor had just gotten into bed when the nurses called. He rushed back in.
10 minutes later we were ready to go.
Mommy still reigns as queen of pushing in spite of a very strong epidural,  I guess.
Mommy didn't even need to push a whole push before the doctor said to stop. 
There you were.
18 hours and 1/2 a push was all we needed. Just 3 minutes later and your birthday would have been July 8. 
You were so tiny,  and so pale that they didnt put you on my chest right away. They rushed you to a nurse.
The doctor got concerned because the placenta wouldn't deliver. He had the nurse turn the Pitocin back on.
Slowly it came, and the reason you were so small became painfully obvious.
The doctor did mention that night how abnormally small the placenta was, but it wasn't until discharge that he told mommy everything. 
He told mommy how he had felt uneasy about letting the pregnancy continue, even though a specialist said we could wait another week and monitor things more closely.  
The placenta that fed you was one of the smallest he had seen. Likely a side effect of gestational diabetes,  but lab work would have to tell the whole story. He said he had no clue how you were still alive. No clue how a nutritional source so small had sustained you.  No clue how growth restriction didn't manifest until 35 weeks instead of much sooner.
If he had waited 1 more week, he believes he would have been delivering a stillborn baby. 
We had a mostly uneventful hospital stay. For some reason you couldn't maintain your body temperature.  Most of the nurses that worked with you thought it was because you were so little. 
The last nurse we had, the one in charge of discharge,  couldn't help but worry it was an infection trying to manifest.
When we got ready to leave, you, again had issues keeping your body temperature up. She called the pediatrician and asked to order some panels.
He agreed.
You went to the NICU for a few hours. The preliminary panels came back clean. We were sent home with orders to keep a hat on your head,  socks on your feet, and to have you double wrapped until our doctor appointment the following Monday.  
Saturday morning came. At 4:30 AM, mommy's phone rang. She was not very nice after having been up all night with you and felt very bad when she realized who was on the other end of the line.
It was your pediatrician, Dr.Rogers. 
Your cultures had grown a bacteria.  You were sick. We needed to get you back to the NICU ASAP.
Mommy cried the whole way to the hospital,  she cried when a sweet nurse took us back to your NICU room, she cried as one nurse hugged her and another poked and prodded you.
You were limp like a noodle.
It didn't look good. 
You had lost a lot of weight in spite of mommy's best efforts to keep you eating. 
I was told to be prepared for the long haul. If it was the infection they thought it was, you may need to be there for 2 weeks to get better,  but there was hope they had caught it in time.
Your sweet daddy stayed home with your sisters, but found time and a friend to come to the hospital and pronounce a priesthood blessing later that day (bless your grandma Nielson who held down the fort so he could.)
Mommy spent the next 3 days driving back and forth and feeling horrible for leaving you at the hospital and horrible for leaving your sisters at home.
There was scary talk about feeding tubes since you weren't eating.  You were so dehydrated they couldn't draw blood.
But it's amazing what the priesthood and 25 hours on antibiotics and fluids can do. 
By day 2, you were pinking up and much more active.  They ran 1 more test to see how your white counts were and decided to see if you would keep your temperature up and could tolerate coming off the IV. 
You kept eating like a champ.
By Day 3, they were able to discharge you in the afternoon.  No orders to keep you double wrapped,  just to watch how you were eating.
You had gained back half of what you had lost. 

Finally, you were home for good. We still had a looming threat of a feeding tube, but you surpassed all the doctor's expectations. You're still a little guy.  At one month old, you barely tip the scales at 5 1/2 lbs... you have horrible reflux so we struggle to keep you happy,  but you want to be happy. You're the best snuggler this side of the Mississippi and your older sisters adore you. We love you Michael Max. We are so glad you chose us to be your family.  It's been a rough start, but we wouldn't give you up for the world.