Celebrating Life; When Death Does Not Win

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Today we celebrate that this little fellow has survived/ blessed others for two years of life on this earth!  While snugging this precious little man I am super thankful that he can say a few words including “Amen” and “thank you” as his favorite (although his siblings strongly try to persuade him to say “booger!”) I am thankful that he can run and play – that he loves waterfalls, the beach, and swimming.  I am thankful that he has a strong heart.  I am even more thankful that I can now kiss his smooth baby face cheeks without hurting him.  While cuddling his blonde and curly hair and little face the memories of his first couple years of life are still raw in my mind and soul.

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Earlier I wrote about most of his story.  I like to share his story in hopes of helping other people in the same situations. Yet- there are many raw life pieces that have been left out.  One is such memory, a memory that is a piece of that awful March of 2016.

After a few days of bad stomach pains I thought I just had the flu that was going around.  When in the middle of the night my teeth started chattering uncontrollably and my temperature rose incredibly high, I started to wonder if something else was going on.  My appendix had started to rupture- sending both myself and my baby who relied on me to feed him in danger.  For 3 days we were separated from eachother- Me in a hospital recovering from emergency surgery, and my babe fighting for his life at home.  No one could get him to eat, until the last few hours away from me.  However, during this time his skin, which for the past 4 months was oozing with eczema, started to heal in front of everyone’s eyes.  Despite the fact he was going hypoglycemic everyone was in awe at the recovery of his skin as a result of not drinking my milk.

When I arrived home I found my babe with beautiful skin,yet wondered if it really was a result of not drinking my milk or if it was just because noone put lotion on him those 3 days. I was hoping maybe it was the lotion that was the factor- so I instinctively nursed him since he was still having a hard time taking a bottle from anyone.

The next morning I woke up back in the nightmare of eczema.  My babes beautiful skin was back to scaley, red, and oozing overnight.  I tried to swallow the lump in my throat as I realized the problem really was my milk. What was I doing to my child? My milk was supposed to nourish him, strengthen him, keep him healthy! But instead it was causing everyone, especially him, great pain and misery.  After seeing this I made a decision- I had to not nurse him, it was plain and simple. I had to stop nursing again cold turkey.  I would get him to take a bottle filled with formula. I HAD to.

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For the next few days I sat in my back bedroom with my babe- trying to heal and recover from my surgery and determined to get my child to take a bottle. I tried different bottles, I tried squirting formula in his cheek with a syringe, I tried feeding him in his sleep.  Nothing worked.  It was exhausting. It was depressing.  All I knew was I couldn’t continue hurting him with my breast milk. Yet I pumped all my milk in hopes to keep my supply up in case my plan failed.  All this was exhausting.

After 3 more days of unsuccess in getting my child to take a bottle, I noticed his health declining at a rapid speed. I was really hopeful that someone I could get him to eat- but my plan was failing.  He got to the point where he was becoming limp and in a constant state of sleep due to lack of fluids.

The only other thing I could think of to do was to take him to medical professionals- I mean, they surely could do something to help me out, right? So, off we went to the emergency room.

While in the emergency room it was determined that my boy was in a hypoglycemic state.  With severe dehydration the nurses were having a hard time getting iv’s into his veins.  Over and over I held him down while over and over they poked and poked him.  I showed them photos of what he looked like when I fed him my breastmilk and how I was trying to get him to eat elsewise.  After several failed attempts to get him fluids I could see him declining even more rapidly in health and requested that a NICU nurse be called down to help him.

Upon arrival of the NICU nurse she started putting rubber bands around his forehead to try to get an iv started in a temporal vein.  At this point my child was not even waking up to the nurse literally digging the needle into his forehead without numbing it first. I discussed with her that maybe I should just forget my plan and nurse my babe- for having an alive baby with skin issues was better than having a dead baby with clear skin. She told me she didn’t think it was a good idea “because his face would end up scarred.”

After a few more failed attempts at iv’s I had all I could take of seeing my boy in such an awful state.  I decided to nurse him with whatever milk my body decided to create for me. Thankfully this was enough milk to hydrate him enough that the nurses could get an iv in.

The next step was being brought to  the children’s intensive care unit of the hospital.  It was a funny thing, because many of the nurses were the nurses I had just a week ago when I was recovering from my appendix surgery.  You could see the look in their faces as they remembered me and how before I was pumping my milk because I had a 6 month old at home.  The look when they put two and two together was a look of fear and then of empathy.

I thought for sure the medical staff could help me to get my child to eat- I mean, that’s why I was there with him.  I felt I was there as a cry from the roof tops for help to get my babe to eat.

Instead the next few days consisted of:

Nurses letting him just sleep- commenting that he would only last a few days on iv’s.

A nurse wreaking of cigarette smoke mixing up rice and putting it on her bare finger and then in his mouth.

Me trying and trying to get him to bottle feed with no success.

A request for specialists to help with a denial for the service.

Sitting in a massively hot room with him while both of us sweated profusely.

Holding him down repeatedly so nurses could draw blood and torture him with missed iv starts.

It was days of torture- it was all a nightmare.

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After a few days went by with the feelings of no success or effective hell at all- I felt my cry from the rooftops was not heard, not tended to. So, I decided I could go back to breastfeeding my child.  Maybe that’s what God wanted for him.  Maybe it was the only way he would live.

So, I told the staff my plan, asked to be discharged, and set off on a week’s journey of trying to get my milk to come back in.  Slowly but surely it did- and quickly and rapidly my babe’s precious skin turned to welts and started to disappear again.

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I felt defeated.  I was weak from recovering from my own surgery.  I was weak from a week of trying to fight for my son’s life in the icu.  I now was at home with him- with massive guilt because the only means I had to nourish him was hurting his skin. Defeated I surely was.  The next few days I stayed in bed trying to gain strength back for both of us and trying to gain milk back for him. It was a fight- not only for our lives but a fight against the depression that resulted from it all.  I always wondered why gothic people loved to wear black and now I knew.  My world was dark.  It was black. Everything in it seemed hopeless- black.

I pressed in- it was all I could do.

One day as I opened my bedroom door to find a bouquet of flowers and my daughter holding a paper chain of things to be thankful for.   For that was the only way to get past this we knew– to be thankful for the little things.

Slowly my milk came back in and slowly my babe and I gained back strength.  Slowly- and I repeat, slowly- with the help of God and the strategic elimination of foods out of my diet, I was able to piece together what Jonathan was allergic to.  This was done despite of the fact the allergist told me, ” your son isn’t allergic to anything.”

Slowly, after removing the foods from my diet- his skin has turned beautiful.

On this journey we have noticed the following symptoms from the foods that offend him other than skin issues:

– Blue hands and feet.

– Diarrhea.

– Lack of urinating and pooping.

After removing the offending foods and adding in grains his circulation improved immensely, and his bowels and urination went to normal.  Also, like I said he now has beautiful skin.

Other than prayer for guidance, other ways we figure out what he is allergic to are: by putting the food on his skin to see if he breaks out first.  Then with a small bit of food in his mouth second.  If neither are a problem we give him small bits for 4 days in a row to monitor any signs or symptoms.

So far he is allergic to any foods that have a high sulfur content- eggs, grapes, red meat, nuts, kale, garlic, onion.  He is also allergic to latex and foods that contain the latex protein- bananas.  In addition to those he is also allergic to kiwi.  While there are a lot of foods he cannot have, we are pleased that the list of foods he can have is growing- which we use a chart to keep track of.

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During this process we dressed him in special garments to help protect his sensitive skin and used a wrap to hold his arms down when in his car seat so he couldn’t injure himself.

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Our child is 2 years old and I can happily say he is eating small bits of solids now – and he is still breastfeeding (with beautiful skin remember).  He still wears special garments as his skin is still very delicate- but he improves day by day.

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While this boy has endured a lot and still has many medical issues we need to overcome- he has been one of the biggest blessings a family could ever ask for.  There is nothing in life that his smile and the sound of his laughter can’t fix.  I am so thankful for him.  I am so thankful God did not give up on us.  I am so thankful I did not give up on God.

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Together we endured the storms.  Together we enjoy the rainbows from the storm’s aftermath.

Happy Birthday Baby Doll! May you grow to be even stronger and stronger!

 

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