August 27th
August 27, 2010 at 9:14 am | Posted in NICU | 12 CommentsTags: child loss, death, grief
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 CommentTags: death, grief
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.
Advice for moms & dads
August 13, 2010 at 2:00 pm | Posted in Uncategorized | 4 CommentsTags: child loss, death, grief
I was not planning to write a post today but I seem to be compelled to write anyway. As I have learned time and time again plans can be made but they frequently change. My husband and I went to a memorial service this morning. It was for an 8 month old baby girl of a friend and co-worker.
There are so many things that moms give each other advice about: diapers, bottle feeding, breast feeding, potty training, this list could go on and on but you get the point. There is no advice to give to a mother or father who have just lost their child.
Having buried 2 children, I felt like I should be able to say some words of wisdom. Although the circumstances were different the result was the same – our children are no longer with us. Maybe writing this blog will help me figure out something magic to say to other bereaved parents or maybe not. I am just going to keep writing and see what happens.
As I stood in line to pay my respects to the parents I realized I have nothing helpful to say. There are no steps to follow, there are no other options to try or videos to watch. It is just there – enormous amounts of sorrow and grief. Lost hopes and dreams for your child and your family.
So, when it was my turn to speak to the parents I just gave them a hug.
Road to raising a downs baby
August 12, 2010 at 7:39 pm | Posted in pregnancy | 1 CommentTags: grief, mom, trisomy 21
After the doctor (I will call him Dr. K1) told us over the phone the results of the cvs he said we could call anytime with questions. So, we called a day later with questions. Dr. K1’s nurse told us he was on vacation for 2 weeks. After waiting 2 weeks for the results of the cvs it did not seem possible that we could wait another agonizing 2 weeks for more answers. Maybe the desperation in my voice or the uncontrollable crying prompted the nurse to put us in touch with Dr. K2.
Dr. K2 met with us on our 2nd wedding anniversary to go over the results of the cvs. He showed us the map of our baby’s DNA. He showed us all chromosomes including the last one which was XY. Somehow in the recesses of my brain I remembered 8th grade biology well enough to now know the sex of our baby. Everything became much more real.
We continued throughout the summer going to the regular OB appointments and the perinatologist. Our baby (ok, if you don’t remember your 8th grade biology and you did not look it up – XY is a boy) was doing great even for a down’s baby. He had a nasal bone, he had all his pinky joints and no heart defects. We were very optimistic that our baby boy would be a high functioning down’s child.
During July the perinatologist saw fluid in our baby’s brain. By the next appointment it was gone. In the middle of July he saw fluid in his abdomen. We were scheduled to go to Maine for a family trip so, I asked if we were still ok to go. The perinatologist said sure – there is above normal fluid but we will just monitor it.
On August 11, I went to the bathroom at work and saw blood. I panicked and went straight to my OB. She looked at me, checked my cervix and the baby’s heart rate. I was fine, cervix was still closed and the baby’s heart was great. So, I went home. I even babysat my best 3 year old friend Hailey while her twin brothers were being born. All seemed well.
How are you?
August 9, 2010 at 6:44 pm | Posted in Uncategorized | 10 CommentsTags: child loss, grief, mom
People ask this question all the time. It is a common greeting. I too used to ask the question. Now, I can’t answer it. Or, I cry as I try to answer.
“How are you?”
Not so great. In fact, awful. Our first son, Jake was born in August of 2005 at 26 weeks. He lived for 2 weeks in the NICU. The only time we held him was while he passed away. Jake’s funeral was August 28, 2005.
After clomid, letersol, 6 IUIs and 2 IVF’s we had our amazing twins in July of 2007. I treasure every day with them.
In November, 2009 we were lucky enough to have a beautiful full term boy, Sawyer. At 10:45 pm on December 25, 2009 I kissed my perfect baby good night for the last time. Sawyer’s heart stopped very early the next morning. No symptoms, no warning, he was just gone. Sawyer’s funeral was December 28, 2009.
I take life day by day. I keep thinking that there must be some purpose to all this grief. For the almost five years since Jake died I have been trying to figure out what to do with all my sadness. Since Sawyer died I am numb but I have to keep moving forward. I am starting this blog to create a purpose for Jake and Sawyer’s lives. And, perhaps help other families or maybe just my own. . .
Other people’s words of wisdom
August 9, 2010 at 6:32 pm | Posted in Uncategorized | Leave a commentTags: child loss, grief
Death is Nothing at all
Death is nothing at all. . .I have only slipped away into the next room. . . I am I, and you are you. . . Whatever we were to each other, that we are still. Call me by my old familiar name, speak to me in the easy way you always used. Put no difference into your tone; wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that it always was. Let it be spoken without effect, without ghost of a shadow on it. Life means all it ever meant. It is the same as it ever was; there is absolutely unbroken continuity. Why should I be out of mind because I am out of sight? I am waiting for you, for an interval, somewhere very near just around the corner. . . All is well.
Henry Scott Holland, Oxford Professor of Dignity, The Anglican Digest
Little Angel
I was given an angel to cherish and love.
So tiny, so perfect, a gift from above.
When I looked at his face it was calmness I found
And that peace seemed to spread to all he was around.
His love touched my heart like fine threads of spun gold
And I thanked G-d for giving me this angel to hold.
But I did not know then that time was my foe
And too soon, with a whisper, my angel would go.
My heart almost breaking, a touch soft as lace
Seemed to wipe at the hurt as it coursed down my face.
I still have my angel to cherish and love.
Those gold threads now shimmer from Heaven above.
And though I can’t see him or cuddle him tight,
I won’t say goodbye, Little Angel, goodnight.
Anonymous
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