A Different Kind of Babysitter
August 30, 2010 at 10:50 pm | Posted in funeral, traditions | 9 CommentsTags: child loss, death, grief, mom
The doctors asked if we wanted an autopsy of Jake’s body. Our first question was if there could be anything determined from the autopsy which would further explain Jake’s death. The answer was no. Our second question was would anything from an autopsy benefit other babies or medical research. Another no. Jake had been through so much. We did not want him to go through anything else. So our answer was no autopsy. (Years later I was heartbroken to learn that parents are not always given the option to decline an autopsy for their child – but that story is for a later post. . .)
We left the hospital several hours later. Again, I did not want to leave without Jake. Realistically, I knew that he was no longer there – just his 2 lb. 14 oz. body. I was preoccupied with where he would be taken. I did not want Jake to be alone. He had never been alone. Jake was inside of me for 26 weeks. Once he was born he was surrounded by numerous doctors and nurses. Before we left we were assured that he would not be alone and that Jake’s body would be brought to the funeral home that afternoon.
At 11 am we went to the funeral home. We discussed arrangements and picked out a casket. Turns out there is only one casket Jake’s size. So once again, we did not have to make a decision – Jake made it for us. I asked and Jake’s body was not there yet.
Next we had a 1 pm appointment at the cemetery. We were shown an area called Baby Land. It is the section of the cemetery for babies and young children. It just felt wrong for us. We were taken to the other side of the cemetery on a small hill. It was so peaceful and pretty. Evan and I knew this was where we wanted Jake to be buried.
We finalized the arrangements. Again, I asked where Jake was and if I could go see him. I know this sounds morbid but I just could not bear the thought of him being alone – even if it was just his body. We were told that he was at the funeral home and we were allowed to go see him.
Matt, our contact at the funeral home, met with us again. He told us about Shomerim.
“Shomerim are watchers or guardians of the soul. Jewish tradition requires that the deceased not be left alone prior to burial. “Shomers” and “Shomeretts” therefore sit at the funeral home in close proximity to the deceased, reading psalms and assisting them in making the transition from life to death. This activity is considered holy.”
I felt myself breathe again. Kevin, the shomerim, sat with Jake and read psalms to him. Jake was not alone.
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.
Home
August 24, 2010 at 9:36 pm | Posted in hydrops, NICU | 6 CommentsI 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 CommentsTags: death, mom
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 CommentJake 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.
August 14
August 14, 2010 at 4:20 pm | Posted in hydrops, pregnancy | 7 CommentsTags: mom
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.
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.
August 12, 2005
August 12, 2010 at 10:49 pm | Posted in hydrops, pregnancy | 5 CommentsTags: mom
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.
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.
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A Mourning Mom 