August 27th

August 27, 2010 at 9:14 am | Posted in NICU | 12 Comments
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When we got to the NICU I knew that there was not going to be a miracle for Jake.   The ventilator and the medications were no longer helping.   Jake had made the decision for us.   We did not have to be the ones to decide to take him off the ventilator.  This was just one of the many gifts Jake gave to us.

Bridget, the NICU nurse, said that I could hold him.   I had never held him before.   I knew this would be my first and last day to hold Jake.

Holding Jake

Evan was also able to hold him.

Evan Holding Jake

At 6:14 am Jake’s heroic struggle ended. Jake gave it everything he had, and we were and still are so proud of him. Sometimes the challenges you face in life are simply too much.

The NICU nurses helped us to give him a bath and to dress him.  He had never been outside and they suggested we spend some time with him on the terrace outside the NICU.

Family picture

We were very lucky to have been chosen by Jake to be his parents.

I miss Jake today and every day.   Some days are just tougher.

Friday Night

August 26, 2010 at 10:14 pm | Posted in NICU | 1 Comment
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Jake had been having problems keeping his blood pressure up.   The doctors had to increase the assistance they gave him through the ventilator and medications. The doctors had been treating a problem with his blood circulation over the past few days and they hoped that fixing that problem would help Jake. They did correct the circulation problem — however, his blood pressure continued to sink and remained unstable.  He required more and more help from the ventilator to breathe.  In addition, the fluid from the “hydrops”  returned each time the doctors removed it. The fluid added pressure on Jake’s lungs and made it that much tougher for him to get oxygen and caused him to rely even more on the ventilator.

The doctors were at the point where they were doing everything they could for him.   Our update from the doctors on Thursday was not good.  During Friday’s update we were given a choice.   Dr. K explained to us that it now was our decision to keep Jake on the ventilator or to take him off of it.  They had done all they could do for our baby.  And, we were left with a decision that no parent should ever have to make.

We decided we would wait through the weekend before making any other decisions.  And, we would hope for a miracle.

We spent Friday night at the hospital with Jake.   As, Evan wrote on Jake’s Caring Bridge site “It’s our Friday night date, and no one could ask for better company.”

I did not want to end our Friday night date.  Bridget, the NICU nurse assigned to Jake that night, said we should go home.  She also told me that I could call her any time I wanted. 

We did go home and I did get into bed.  I called Bridget every hour.   Around 2:00 am I got dressed and asked Evan to drive me back to the hospital.   He would not.   I called Bridget at 3:00 am and again at 4:00 am.   Bridget said it was time to come back.

I walked down the hall of our house to the room where my parent’s were sleeping.   My mom had come back the Wednesday after my grandmother’s funeral.   My dad had come back on Thursday.  I could not see anything in the darkness and I just whispered softly to my parents that we were going back to the NICU to be with Jake.

Home

August 24, 2010 at 9:36 pm | Posted in hydrops, NICU | 6 Comments

I was not happy to be home.   I could not drive myself to the NICU to see Jake.   I could not go to my grandmother’s funeral.  Sadly, my grandmother had passed away that Friday evening around dinner time.  I would not have gone to the funeral even if I was physically able to – I could not leave Jake.    

Evan would drive me to go see Jake.   I would pump breast milk and bring it to the NICU to be stored in this giant top security refrigerator.  Jake could not drink the milk but I was pumping it and storing it for when he could.   We would label each bottle with all of my medications (the medication to get the fluid out of my lungs, the pain medication and I am sure a bunch of other medications I have forgotten).      

I would try to stay as long as I could.  Evan would often bring me home to rest and then go back to the hospital.   The day of my grandmother’s funeral I did not feel well enough to go to see Jake.   Five years later, I still regret not seeing him that day.  A few of my cousins, who were also unable to go to the funeral, came over to our house to visit with me that morning.      

The NICU doctors would give us a report in the mid morning.  If we were not in the NICU at the time the doctors would call us.   The doctors were even able to begin to reduce some of the medications and treatments they needed to give to Jake to aid him in his fight and keep him going.    

As the days went on, the doctors were able to further reduce the medications and treatments needed to keep Jake alive. At the same time, they started to look for causes for the “hydrops” — the medical condition which caused the fluid build-up in his abdomen and the swelling in his body.    

Unfortunately, finding the cause could be something like finding a needle in a haystack. Often, the best method they could use was to try to eliminate possibilities. In many cases of nonimmune hydrops, the doctors never are able to find the cause. As long as it went away, we didn’t care. Over the first week, the doctors were able to eliminate many possible causes for the hydrops, but many remained, and some could not be tested for until Jake was stronger and doing some activities that he could not yet handle (such as feeding). The doctors were able to remove some of the fluid which reduced the problems with Jake’s breathing and  blood pressure.  Distressingly, the fluid returned over the following few days after it had been removed.    

We tried to take things day by day and we remained hopeful but realistic.  We continued to sing and read to Jake.  We were cautiously optimistic.     

Visit with Jake

Going Home & Grandmother

August 21, 2010 at 2:22 pm | Posted in NICU | 4 Comments
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Every day Evan, my husband, would wheel me to the NICU to see Jake.  I would usually be crying on the way there and on the way back.  We ran into a few tours that the hospital gives to pregnant couples.   I was sure that if they were not already nervous about the impending birth of their babies, seeing me and Evan crying while wheeling through the hospital was enough to terrify them.   

My parents, along with both sets of Evan’s parents (his parents divorced and both remarried when he was 4) were at the hospital those first few days.  They all visited Jake and sat with me in my hospital room.  Jake seemed to be stabilizing and one set of Evan’s parents left.  My parents were still there and staying at our house.  Evan slept in the hospital room with me every night.  

On Wednesday of that week I had some trouble breathing.  It turned out I had fluid in my lungs – most likely from all the stuff they pumped into me before Jake was born.   I had to be put on oxygen but I would be fine.   My parents announced they were leaving.   As I mentioned in this earlier post my grandmother had not been in good health.   However, her health had been declining for several years and she always seemed to bounce back.   I knew if my parents were leaving, while I was still in the hospital and Jake was in the NICU, that meant my grandmother was very ill. 

My brother and I were very close to our grandmother.   We always wanted to go to our grandparent’s house.  Our grandparents made everything magical and fun.  We would play, sing and go to the beach.  Our grandmother taught us to jump waves in the ocean.    She told us that if we got knocked down to get back up and to always keep one eye on the waves.  Grandmother would give us chocolate pudding or yoo-hoos. What could be better? 

So, my parents would not tell me anything about my grandmother’s condition – just that they were leaving to go be with her.  I wanted to be with her too but I would never leave Jake (plus I was not well enough to travel).   

Evan continued to wheel me in the wheelchair up to see Jake – except for the one night I had to be wheeled in a hospital bed.   A nurse helped get me to the NICU that time.   I was not allowed out of the bed but it was level with Jake’s isolate so, they just wheeled me next to him.   We were even able to hold hands that night.  Okay, I just put my finger into his tiny hand. 

Holding hands with Jake

My OB told me that I was going to be released from the hospital in the next day or so.  I tried everything I could think of to persuade her into letting me stay.  Even though I was not Jake’s primary caregiver or spending hours and hours with him, I did not want to leave the hospital.   I took comfort in the fact that Jake and I were in the same building.  The thought of leaving without him was unimaginable.  

All of my attempts to stay in the hospital failed.  We were planning to leave the hospital on Friday night after dinner.   There was no part of me that wanted to go anywhere but back to the NICU.   

I was not able to eat much during those days however, the nurses still brought me meals.   Dinner arrived that night and I looked at the tray.  There was chocolate pudding – I know this sounds crazy even as I write it, but I felt like the pudding was some sort of sign from my grandmother.  I somehow knew that the sign meant that she had died that evening.

The NICU

August 19, 2010 at 4:02 pm | Posted in NICU, pregnancy | 1 Comment

Jake was immediately brought to the NICU and I went to the recovery room.   After the recovery room I was put on a floor with the high risk pregnancies.  A good friend’s mother is a nurse at the hospital.  She wisely decided that I should not be on the same floor as happy parents with their healthy newborns.

After what seemed like an eternity (but actually was only several hours), I was allowed to go visit Jake.   My husband wheeled me into the NICU.   I could not see him in his isolate from my wheelchair.   I stood up so that I could look at our son for the first time.  As I mentioned in this post, I had seen Jake wrapped up like a baby burrito for 1 second as he was whisked out of the delivery room. All I saw at that time was his face but now I could see his whole body. He was so tiny and so wonderful.   There he was all hooked up to multiple machines – but he was alive.  

I stood as long as I could by his isolate.   My epidural had leaked and I did not seem to notice the blood dripping down my legs.   A nurse told us that we could not visit for long.   I thought she must be mistaken.  He was our baby we were going to stay with Jake forever.   She came back to explain that too much stimulation would not be good for him.  

After singing and reading to Jake my husband wheeled me back to my room.   I knew that Jake was not in good shape and that I did not feel so well either.   We both just needed to get through the night.

And, we did!   Jake was still alive on August 15th.   I tried to follow doctors orders and not visit too much.   My husband was able to visit more often which was a huge comfort to me.  

Every day I was able to visit Jake once maybe even twice.  Visits with Jake were never long because we did not want to over stimulate him.  We sang and read to him.   My husband and I each got to change his diaper one time.   Jake was never alone.  NICU nurses and/or doctors were always with him.  The NICU nurses are amazing people.  I am still thankful for their wisdom, caring, patience and kindness.

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