Tag Archives: father

Please Don’t Let Her Arm Fall Off

16 Feb

“Sometimes beautiful things come into our lives out of nowhere. We can’t always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
― Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband’s enthusiasm for an adventure took a back seat. We made it to Oli’s surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious. We got to the hospital 2 hours late to her appointment. I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards. We were assured that Oli was in good hands and were sent to the waiting room.

I had never been the parent of a patient before Oli was born. One time I had to take Kekoa to the ER when he was 4 months old because of a high fever. We were only there long enough to make sure he didn’t have an infection and then left.

This was nothing like that.

I knew they were going to be cutting into my baby, however minor the operation was.

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child. My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child’s surgery. Many times I spoke the exact same words spoken to me that morning, “She’s in good hands. Everything will be fine.”

Of course there are no guarantees. I knew that. I was terrified.

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life. Oli has had a few other surgeries since then and it never gets any easier.

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn’t properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off.

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It’s awful!

Luckily none of those things has ever happened.

I want to trust people taking care of Oli. I really do. Most of me has to or else I would drive myself crazy, but this is my baby girl. I can’t trust them completely. I don’t think any mother ever does.

Moms worry about our children the moment we realize we are having them. It’s not any more difficult, I don’t think, when you have a child with special needs. We are just given more opportunities to worry. And we are given more opportunities to trust people and have a little faith in them. Sometimes they let you down, but most of the time they don’t.

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

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You Want To Put WHAT In My Mouth?

13 Feb

“Children aren’t coloring books. You don’t get to fill them with your favorite colors.”

― Khaled Hosseini

One of the most difficult things I ever had to teach Oli was how to eat solid food.

Seems like a pretty simple thing doesn’t it?

Just open up the little jar of green, orange, or tan puree. Get the spoon ready. The baby, at this point, is watching in anticipation because they probably know what is happening. They get that look of excitement on their face like, “Really? It’s my turn?”

Usually by the time the baby is old enough for solid food they have been watching big people eat for a few months and know what to do.

See food.

See spoon.

See mommy scoop up food.

See the spoon coming towards mouth.

Greedily open mouth as wide as possible.

Get food in mouth and then immediately insert fist in mouth too.

Because really, what goes better with baby food than baby fist?

At least this was my experience with my son.

I’m sure you spotted a few obstacles that I encountered when I attempted this technique with Oli.

I got the baby food jar out and the little rubber spoon and set them on her tray. I opened the jar and had the camera ready to snap the classic baby expression that comes with the first bite of real food. I scooped up the green mush, brought it toward her face and…nothing.

My face fell when I immediately recognized my mistake.

I put the food up to her lips and watched as she clamped her mouth shut when she realized that I was trying to put something in there.

“It’s food Oli. Food like mommy and daddy eat.” I gently try to coax her into opening her mouth.

Nothing.

My baby had absolutely no frame of reference for the word “food”. She’d never seen people eat, had no idea that this was something people do, and had no clue that she was supposed to open her mouth and chew when I spoke the words “food” or “eat”.

When Seth came home that night I greeted him at the door with a bewildered look on my face.

“She doesn’t understand what food is. She doesn’t know that she’s supposed to eat. All she knows is the bottle and milk. The spoon and baby food feel nothing like these. How do we teach her to eat?”

Seth just shrugged his shoulders and gave me the reassured look that only a father who has no idea of what to do, but is confident he can work it out, can give.

“We just do. We have to show her.”

Over the next week I tried to do just that. I tried to show her that I ate food and did not drink from a bottle. I would take her little hand and raise it to my face as I ate. I let her feel the fork or spoon layered with food as I raised it to my mouth, feel the motion of my jaw as I opened and closed my mouth and then chewed.

Then I would sit her back in her highchair and attempt to feed her again.

“Come on Oli. Open your mouth just like mommy does.”

Nothing.

Eventually I was able to squeeze past her tightly closed lips and get a small amount on her tongue. She immediately tried to spit it out and stuck out her tongue. I quickly jumped at this opportunity and put a spoonful on her tongue. Unable to spit out the entire glob she was forced to close her mouth and got a chance to taste it. She realized that it tasted pretty good, but then she thought that that was the way she was supposed to eat. Every time I fed her she would stick out her tongue and expect me to put food on it. This technique soon became frustrating for her because she never got much into her mouth and most of it ended up falling off and onto her tray.

I was frustrated and again met Seth at the door after work. This time with an exasperated expression.

“I don’t know what else to do. This is not working and I’m out of ideas. Tomorrow, it’s your turn to try.”

“Ok.” He answers with that confident look on his face again. But this time rather than finding it comforting or endearing I just fine it annoying.

I’m thinking, “You think it’s going to be so easy and I’m going to laugh when you figure out that it’s more difficult than you realize.”

The next night I get everything ready for Seth’s feeding attempt and get the “I told you so” look on my face.

He sits across from Oli and then does something completely unexpected. He takes her face in his hand and gently pry’s her mouth open and puts the spoon inside.

“Open your mouth Oli.” He says as he gently taps the spoon against her lips and then opens her mouth for her.

At first the food comes right back out being thrust onto the tray by her tongue, but after a few more attempts she starts to open her mouth on her own. Soon afterwards all we had to do was ask her to open her mouth and touch her lips.

Apparently his interpretation and my interpretation of “We have to show her” were completely different.

Thanks to Seth’s straight forward attempt to show her, my girl learned how to eat.

Never going to be the same…

26 Jan

“We must be willing to let go of the life we planned so as to have the life that is waiting for us.” -Joseph Campbell

We drove baby Oli home on a warm sunny day.

I was trying my hardest to be upbeat for my son despite my inner turmoil. I was sitting in the back seat with Kekoa, listening to his favorite nursery rhyme CD.

As we were driving past the desert mountain bike trails that Seth and I used to ride, I am reminded again of another life. Another person that I’m having a harder and harder time connecting with.

I feel like I am floating away.

Leaving behind the person I was. My life, that used to make perfect sense to me, now I can no longer recognize. I am being consumed by despair of the unknown.

I look at Seth in the review mirror.

Our lives are never going to be the same.

And then….they just let me take her home.

25 Jan

“In three words I can sum up everything I’ve learned about life: it goes on.” -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy’s face. But, she would see how beautiful his soul is every time he holds her close to his heart. Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure. This would not tell me anything about her cognitive function, however. I did not realize back then that the words “her brain appears to be normal structurally” did not mean she would have normal cognition. It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal. Except for some extra fluid in them called hydronephrosis and something called vesicoureteral reflux.

What the heck is that?

Pertaining to her story, it was pretty insignificant. She ended up just having a few procedures and was required to take medication so she wouldn’t get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy. The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results. I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me. She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

“We will have to run the test again tomorrow. This does happen sometimes. Sometimes we run the test too early after delivery and there is still fluid in the baby’s ears.” she told me as gently as possible.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love.

She did hear me when I repeated “I am so sorry” over and over again.

She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby. They told me to just take her home.

What was I supposed to do with her next?

They were going to let me just walk right out of the hospital with her?

Were they crazy?

I needed a few more days!

I need to prepare.

I needed a battle plan, an army of soldiers to protect her from the world.

I needed to erect some kind of force field around her.

Wasn’t there some sort of pamphlet they were supposed to give me providing detailed instructions?

Wasn’t someone going to tell me what the next step was?

I was absolutely terrified.

The hospital staff just assumed that I would know what to do?

Why?

Just because I was a NICU nurse?

I was not NOT a nurse at that point. I was a new mother and I needed support. I needed to know there was a path that I was supposed to follow. I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world. Most people do not tell us where to go for help. Nobody provides us with a list of all the services that our childrn can benefit from. The services our children are entitled to. I guess they think that when we get the diagnosis we automatically absorb this information through osmosis. By being in close proximity to other special needs parents.

Would she ever see a sunset?

25 Jan

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside it’s chest.” -Debra Ginsberg

The next day the doctors performed a few tests on Oli. One was a CT of her face to determine if she had any eyes or any abnormalities of her brain. Another was an ultrasound of her pelvis to determine if her kidneys were present and normal. And the last was a hearing screen.

It was so hard watching the nurse wheel my baby out of my room that Saturday morning. I knew in just a few hours the results of those tests would be delivered to me and would determine her life, quality of life, or her death. I couldn’t think about the outcome of those tests anymore but, I couldn’t not think about them either.

Would she be able to see her handsome daddy’s face, admire a sunrise in the mountains, or see a sunset over the ocean in her daddy’s beautiful Hawaii?

Or would she spend her life in darkness.

Was her brain normal?

Or would she spend her life confined to a bed, unable to ever care for herself and perform daily activities.

What about her kidneys?

Would they be missing or badly deformed and non-functioning?

Would she spend her life attached to a dialysis machine multiple times a week for hours at a time?

Would I be forced to administer numerous medications with harmful side effects in order to keep her alive?

Was she able to hear her sweet brothers voice when he called her his “bee-bee” and kissed her head?

Was she able to hear how many times I had whispered “I love you” into her ear?

Did she hear how many times I told her I was sorry that this had happened to her?

Did she hear me tell her that I would have offered God anything if He would allow me to trade places with her?

Did she hear me tell her that I wished it had been me that had been born blind and not her?

Laughter

23 Jan

“The most wasted of all days is one without laughter.” -E.E. Cummings

So I couldn’t help but write a little note about my husband’s reaction to my last few posts. And then our subsequent laughter. Proving once again, you really can laugh at terribly sad things.

Seth was out when I wrote and published the last post. I couldn’t wait for him to get home so he could read it. This one even made me tear up. I’m not a big crier so I was shocked when I re-read the post and felt tears pooling in my eyes.

(How silly considering I wrote the thing!)

I was curious to see his reaction. He is a crier so I knew he probably would. (Sorry honey but, you know you are.) But I was surprised at our reaction afterwards. This is how it goes…

Seth reads the post. I am sitting there staring at his face as he reads it. I am trying not to be obvious about it so I am pretending to clean up the kitchen.

(Shhh. I’m sneaky like that.)

He finishes. Looks up at me with tears rolling down his face and says, “That’s horrible!”

For a second I’m offended. What? Then I realize he’s talking about that time in our life, not my writing.

I look at him with tears in my own eyes as that memory breaks the surface again and tries to taunt me. Reminding me of how incredibly sad and helpless I felt then.

It only stays for a moment though and then retreats back into the cave where I have sentenced it to live in the back of my mind. Those memories of complete sadness are not allowed out very often.

Then I look back up at Seth and our eyes meet. We both burst into uncontrollable laughter.

ME- “That sucked!”

SETH- “It did suck didn’t it!”

And then we laugh some more. Because that’s what we can do now. I never want to go back to that place of grief but, sometimes it’s a good reminder of how sweet the laughter can be.

He began to cry.

23 Jan

When I think of that moment I don’t even know what to say.

It still makes my heart race and my eyes tear up when I remember him looking down at me lying in that bed with our baby girl next to me. I’m sure I looked like a complete mess. I had been crying and panicking. Wondering when I was going to wake up from this nightmare.

He walked over to the bed with a panicked look of his own.

He knew.

He knew something was wrong with our baby. I could see it written all over his face. I was suddenly glad that I looked a wreck. At least the first words out of my mouth didn’t have to be…
“Sit down. I have some terrible news about the baby.”

Nope. I just looked at his face and blurted it out. “She’s blind Seth. They say she doesn’t have any eyes. Or if she does have eyes they’re really small and they probably don’t work. She’s blind. Our baby is blind.”

He put Kekoa down on the ground and did what any father would do.

He began to cry.

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