Birthday Benches

August 20, 2015 at 11:36 pm | Posted in Grief, hydrops, Jake, life after loss, Love, NICU | 9 Comments
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Jake never left the hospital.  His short life was spent entirely in the NICU.  The only other places Evan and I went with him were the consult room and a small outdoor balcony off of the NICU.

The three of us

While helping with the special project of updating the consult room I heard that the balcony might need some new benches.  It seemed to make sense to me that for Jake’s 10th birthday we should get the benches for the balcony.  So that is what we did.  We miss you Jake.

quote - roses - Lincoln

7 years minus 1 day & I still miss you

August 26, 2012 at 9:14 pm | Posted in after death?, Grief, hydrops, Time | 15 Comments
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It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.  Rose Kennedy

Dear Jake,
Tomorrow it will be 7 years since your Dad and I held you. I am still not sure how anyone got me to leave the NICU that Friday night.  I have nothing really new to tell you.  It is another day without you.  Tomorrow will come and you will officially be gone for 7 years.  The numbers do not matter.   I will miss you forever.  Love you always.  I will look for you in my dreams.


February 12, 2012 at 9:02 pm | Posted in Grief, hydrops, hydrops fetalis, venting | 13 Comments
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I have been going to the same primary care doctor for forever. I am not sure how many years forever is, but I know it predates my new normal.  The doctor who I usually saw retired before I had Jake. There have been so many other doctors in my life. Obstetricians, perinatologists, infertility specialists, therapists, pediatricians, cardiologists, pathologists, I could go on and on but you get the point. I have only gone to my primary doctor’s office a few times over the past several years. After the doctor I liked retired I would just go to whoever in the group could see me. Starting over with new doctors since Jake and Sawyer have died is emotional and complicated. Explaining my medical history feels extremely daunting.

I never considered switching until yesterday.  Yesterday I saw a doctor I will call “Dr. H.”  His office walls were covered with articles about his medical expertise along with framed awards and diplomas.  I made the appointment because despite my best efforts, I cannot seem to get rid of a persistent cough.  All I really wanted from Dr. H was a prescription.

As he looked into his computer at my file he seemed to be reading my history.  The subject of Jake and Sawyer came up.  Dr. H asked about depression and if my husband and I had looked into therapy.  I responded “I have got depression and therapy covered, thanks.”

Dr. H went on to comment about Jake.  “Ahh, seems that it was failure for nature to correct itself.”

I stared blankly at Dr. H, took my prescription and left. I now wish I had said something back to him but my mind could not process what he said till it was too late.  If nothing else, I should have responded with Ann Taintor’s perfect quote “Funny. . .I don’t recall asking for your opinion”.

As I walked out of the office I looked again at the diplomas on the wall.  Too bad Dr. H never took a compassion 101 course.


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

August 14

August 14, 2010 at 4:20 pm | Posted in hydrops, pregnancy | 7 Comments

Five years ago today, Dr. K2 came to speak with me and my husband about the plan for our baby.  As I mentioned in this post, Dr. K2 was the doctor who mistakenly revealed that the last chromosome (the gender chromosome) of our baby’s DNA was XY.  Dr. K2 is also one of the leading neonatologists in the city.   He told us that the ultrasounds showed that the fluid was still increasing and putting our baby into distress.  Our baby could not survive inside of me any longer.  Our baby’s best chance was to be delivered so that the doctors could remove the fluid. 

I was scheduled for a c-section that afternoon.  Our baby would not have lived through the birth canal so a c-section was the only option.  We were also advised that it might be a vertical as well as horizontal incision depending on the position of our baby.  None of this mattered.  We just asked Dr. K to do whatever was in the best interest of our baby. 

Dr. K (I’ll just call him Dr. K from now on – we never saw Dr. K1 again after the cvs) gave us all the odds.  A baby born 14 weeks premature has a 60% chance of surviving.   A baby born 14 weeks early with hydrops has a 30% chance of surviving.  In my mind I began to rationalize once again that our baby could be in the 30%.  After all,  we were already the 1 out of the 5 to have trisomy 21.  Maybe it was our chance to beat the odds.

The delivery room was very crowded.  There were at least 20 people in the room besides me and my husband.    Everyone was moving quickly (or maybe it just seemed that way because I was so still).  There were a lot of things happening most of which were being done to me (but luckily for me I could not feel a thing because I had been given a epidural). 

At 3:26 our baby was born – alive!  And, if you don’t remember from your 8th grade biology, you can read my post about the road to raising a down’s baby . Or, I will just tell you – XY means that we had a baby boy.   He weighed only 2 lbs., 14 ounces, measured 14 1/4 inches, and arrived 14 weeks early.

After he was born it was not at all like I had imagined (or like anything I have ever seen on TV or movies).  The doctor did not smile and bring me my baby so that I could look at him and hold him.   Instead, another doctor whisked our baby away before I could even see him.  I did get a glimpse of him all bundled up with a hat on his head.  His right eye was shut and his left eye was open  – almost as if he was winking at me.  

I knew that it we still had a long, long road ahead of us but he was alive and we were still on the road. 

Happy, happy birthday to our sweet baby Jake!  We love you more than I can express in words.  Your dad and I wish that we were going to be driving you to your birthday party today.  Instead, we will drive to visit you at the cemetery. 

August 12, 2005

August 12, 2010 at 10:49 pm | Posted in hydrops, pregnancy | 5 Comments

I woke up that morning, took care of Hailey, baked cookies for her to give to her mom and drove to the hospital to drop her off.  

Here is Hailey at the hospital

The plan that day was after dropping Hailey off I was going to work and then I had an appointment with the perinatologist later that afternoon.  I didn’t feel quite right so I decided not to go to work and just hang out at the hospital.  I went to Willys for lunch with my good friend Tina.

I sat in the waiting room of the perinatologist with my husband.   Our average wait time at that office was at least an hour.   I could not sit still.  I kept getting up and pacing.  We were supposed to be going on a trip to visit my family later that night.  My grandmother was sick and our nephew was having his first birthday party.

Finally, we were called back to a room.  The usual drill – get undressed, put on a white cloth skirt and sit on the table.  The nurse began to examine me.  She did not make her usual casual conversation.  Suddenly, she was calling other people into the room.  I heard people frantically talking.  All I could make out was something about not being able to find my cervix.

I was then shuttled into another room and given a shot.  The room started to spin and my heart began to race so fast I am sure it was going to leap out of my chest.   I was whisked away and my husband was told to go to admissions. 

I was wheeled to a room right next to the operating room and hooked up to a machine that measured my contractions – which were 3 minutes apart.  I had apparently been in labor for days.  I thought to myself – how could I have missed that?   I had heard of braxton hicks but I did not think it was possible to be in real labor at 26 weeks. This was not supposed to be happening.

The fluid in our baby’s abdomen did not go away.  It increased, putting pressure on his heart and he went into distress which caused me to go into labor.  The doctors now explained to us that our baby had hydrops. Basically, his body could not process fluid. This would be the first of many medical terms I did not know existed until my children were diagnosed with them.

The plan was now to hope and pray that the fluid would decrease.  If it did not decrease our baby would be delivered that weekend.    If it did decrease I would stay in the hospital until my contractions were under control.  I was given the shot to help our baby’s lungs in case he was delivered.

Shortly after the trisomy 21 diagnosis we started singing and reading from a book of psalms to our baby.  So, we sang and read.  We cried, prayed and waited.

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