My First View of Holland was Scary {My First Six Weeks as Jubilee Mila’s Mama}

by GfG on September 18, 2015 · 4 comments

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I sit here in my living room, taking a breather from trying to get a firm routine in our home.  Six and a half weeks out from Jubilee’s birth and almost two weeks since we came home from the hospital.  Life is different.  And so am I.

I thought I was prepared for having a baby with Down syndrome. I read the book.  I remembered my roots.  I joined the support groups.

But nothing could have prepared me for holding a precious new baby, wrapped in such cuteness… and who couldn’t eat.  Whose body couldn’t give her the strength to even cry for food.  Who couldn’t even stay awake to eat the nourishment right there for her.

The helplessness that enveloped me shocked and unnerved me.

The low tone in muscles for people with Down syndrome affects all of their muscles, not just their muscular ones.  I knew this in my head, but to see how she just wasn’t strong enough to have the stamina for even taking in 25ml of breastmilk, how her muscles wore out so quickly, how she just laid in my arms sleeping, her body nearly wasting her life away.

I felt broken.  And useless.  And scared out of my mind.

And grateful at the same time.

I had to consciously force myself to remember that we were in a NICU that would not let her waste away.  That the IV and then NG tube kept her fed and nourished.  I had to remind myself to thank the LORD not only for her life, but for giving us access to medical help.

Imagined images of women holding their babies with Down syndrome in history and in parts of the world today, with no help to feed them, no NG or G tube, watching them die in their arms, flickered across my mind and I wept.

Remembered images of my friends who have struggled with nursing their babies, watching them lose weight, flickered across my mind, and I had a brand new sense of connection with them and I wept.

Real life images of my beautiful baby girl, slack and sleeping, despite the time elapsed between feedings and my body full to feed her, despite the bottles warm and ready, despite the depth of my will, the nurses’ will, and the doctors’ will that she eat on her own flickered across my whole being and I wept.

It was not what I had prepared for at all.

First View of Holland 2

Until this experience, I never realized that full term healthy babies may not eat, or wake to eat, or cry to eat, despite being hungry. I truly didn’t know this can happen to healthy newborns.  I have always thought that maybe they wouldn’t eat enough at times, but I didn’t know that they could simply sleep and sleep and sleep and not wake hungry.

It’s incredibly disturbing.

Gratefully, we had fantastic care in the hospital.  Jubilee had an IV for awhile, then after letting her show us what she could and couldn’t do, she had an NG tube. After that, she nursed some, bottle fed some, and used the NG tube some.  She seemed to be headed towards a G tube, but…

After thirty days in the NICU, the doctor believed Jubilee was strong enough to try a three day trial of bottle feeding only (my breastmilk, fortified).  Nursing wore her out too quickly, but if she could bottle and gain, we could go home.  Thankfully, she did it and we left the NICU on day thirty-three.

I was thrilled.

And frightened.

Holland was scaring me and had left me in tears.  I had prepared for learning challenges, physical disabilities, a possible tiny heart problem, and the overall idea of life being different.  I had prepared for advocating for my daughter.  I had prepared for wanting to smack people across the head if/when they were rude to or discriminated against my child, ever.

I hadn’t prepared for not eating.

I came home with the oxygen condenser and the portable tanks.  And the bottles.  And I prayed non stop.

I wish I could say that it got better, but it didn’t. Two mornings later, in the wee hours, I was sitting on the floor of my bathroom bawling.  The nipples from the hospital had run out and the ones we bought weeks previously were too strong for her.  When she did wake to eat, she was choking as she tried to drink.

That was a bit over a week ago.  We bought new preemie nipples.  We went to the doctor.  As of three days ago, Jubilee hadn’t gained weight, so we upped the calories in her “food”.  The doctor was super chill and though she was concerned, she wasn’t worried.  As tears streamed down my face, she smiled and said, “It’s still early in the game.  We have lots to try before we have to get the G tube.  Don’t worry. This is not the NICU.”

Easier said than done here in Holland.

But I am trying, by the grace of God.

I have been reminded more than a few times, that when we told the kiddos of her diagnosis, they said, “So, she’s just going to take longer to do things.”  She’s just taking longer.

We aren’t out of the woods for a G tube.  Some babies with Down syndrome end up needing it even a few months post birth due to the muscle tone (which is also why she needs oxygen: her muscles just can’t quite get her the breath she needs to stay oxygen saturated).

Two days ago, Jubilee started eating more at each feeding.  Instead of having only one feeding a day that is more than 60ml, she is taking at least 60ml at each feeding (except her middle of the night one which is usually only 40ml) and usually takes 80-100ml at each feeding.  She has also started waking on her own more often and at sooner intervals. She even cries often to be fed {I’m thrilled when I hear her crying!}.

Jubilee crying web

These are huge steps for our girl.

Her mama is desperately wanting this to be the new norm, but the girl has thrown a loop before in the feeding game, so the mama prays.  And hopes.  And tries to get her bearings in Holland, the land she truly is happy and honored to be visiting.

Because the tour guide is wonderful. If only the tourist would lose her NICU PTSD, the experience would be lovelier.

Did you know about the serious feeding issues babies with Down syndrome can have? Have you experienced feeding issues? 

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{ 4 comments… read them below or add one }

Annette Q. September 18, 2015 at 4:54 pm

I am pretty sure you now have dual citizenship. She is beautiful! Thanks for sharing her with us.

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Faith September 18, 2015 at 4:57 pm

I remember Charlotte Joy’s first months. We had to set a timer to wake her every 2 hours at night to feed her and three hours the rest of the time. I thought I would go absolutely crazy.

Wake. Feed. Pump. Save. Sleep. Wake. Feed. Pump. Save. Sleep.

I can’t even remember how long we had to do that. Weeks and weeks. Well – I gave up pumping after a bit and, oh my heck, that extra half hour of sleep did wonders for me.

Taking longer is not a bad thing. It’s just a new kind of exhausting.

We’ve since learned that we had it relatively easy with her. She did so well and after her heart surgery, well, she soared.

I wish I was close enough to help you with Miss Jubilee and you could watch Charlotte’s threenager essence to encourage you that this too shall pass and soon, you’ll be needing running shoes to keep up with your newest girl. 😉

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Laurie September 18, 2015 at 9:58 pm

My boy was a 30 week preemie. His intestines ruptured at 10 days old. He was 6 weeks old before we could hold him. Once he finally began healing the doctors wanted to try every formula, but I kept pushing for breast milk. He was probably 8 weeks old before we began the feeding pains.

During the day, I could face it all. It was the drive home at night that was so hard. The questions in my mind as I pumped at night. Father God was truly the peace that passed all understanding.

We spent the last month of our 3 mouth NICU stay just waiting for him to grow! Finally, the insurance company forced them to release him at 4 lbs 4 oz.

For the first year of his life he only weighed one pound over his age. So, yes, at 6 months he weighed 7 lbs.

I allowed the feelings of guilt that my faith was inadequate keep me from sharing my fears and worries. I dreaded doctor visits because I was sure they would take my boy from me! I did everything humanly possible, but still I didn’t seem to be enough.

He was 9 months old before I could finally quit worrying so much, but by then we were adding cereal to his diet. He didn’t like that much either.

Once he got big enough and strong enough, he finally became a decent eater. However, to this day, 18 years later, he still doesn’t know how strong he really is.

Remember, her label is not who she is! Other babies; full term, preemie, issues, no issues; have other things that are trials. I agree with Faith, keep those running shoes handy. It won’t be too long before you are chasing her.

You have a heavenly Father who loves you so much that He keeps your life in such a state that you can’t help but call on Him daily. He wants you and all your kids that close.

Thank you for being bold enough to share your frustrations and trials. They are precious reminders to me on paths I have traveled.

Love and blessings!!!

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Jan Tessier September 21, 2015 at 4:41 pm

You are doing great mama. Seriously great. Great, great, great. Keeping your heart and head together…moving forward…growing that baby girl. You are such a good mama.

Wahoo!

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