Hope & Heart Ache

May 16, 2011 at 11:36 pm | Posted in CHD, Grief, parents, silver lining, transient tachypnea | 5 Comments
Tags: , , , , , ,

We still do not know the cause of Sawyer’s death.  His heart just stopped.  He is currently in a study at the Mayo Clinic for Long QT.   His autopsy did not determine that it was SIDS.  No matter what the results of the study conclude I know that Sawyer will still be dead.  However, I hope that his death will help to provide the research which could prevent other children from dying. 

According to the Children’s Heart Foundation, “Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one-third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.” 

CHD’s can be detected by Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing.  Newborns do not routinely have any of these exams.  Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. 

Sawyer had a Level II ultrasound and a fetal echocardiogram.  All appeared to be perfectly normal.  He was also in the NICU briefly because of transient tachypnea (extra fluid in the baby’s lungs which would normally be squeezed out when the baby goes through the birth canal – c-section babies do not have the benefit of the fluid being squeezed out. )

In the NICU Sawyer’s heart and pulse oxygen levels were monitored.  Again, all appeared normal.  He did not have an EKG or an Echocardiogram.  If he had, would anything have been detected?  We will never know.

What I do know is that I wish there was more screening for newborns.  I hope that organizations like Simon’s Fund succeed in their mission “To save a child’s life . . . . and then another, by raising awareness about heart conditions that lead to sudden cardiac arrest and death.”

I hope that Cora’s Story results in a pulse oximetry test on every baby.  I want to help Aaron’s mom, Cora’s mom, Logan’s mom and all the other parents of CHD children to spread awareness and hope.  Sawyer’s death may not have been caused by a CHD but it did make me realize how many children do die because of heart defects.  Please ask your child or grandchild’s pediatrician if they provide heart screening. 

“In the sharing of our losses, our hearts grow stronger.”  Kirsti A. Dyer, MD, MS

 

Advertisements

Home from the hospital

December 1, 2010 at 4:04 pm | Posted in silver lining, transient tachypnea, twins | 6 Comments
Tags: ,

The rest of our stay in the hospital was uneventful.  Sawyer stayed in the room with us.  He and I both got checked out every day.  The doctors and nurses reassured us that transient tachypnea was common in c-section babies and that Sawyer was healthy.  In fact, I asked anyone who walked into my room about transient tachypnea.  If the person I was asking had heard of it before the answer was the same.  It is not life threatening.  It is common.  Sawyer would be fine.   

We were both released to go home on that Saturday.  My parents had been staying with the twins.  I had never been away from them for so long.  I could not wait to get home and introduce Sawyer to his big brother and big sister.

Bringing Sawyer home

Sawyer is home!

Once we were home I had allowed myself to enter back into the land of believing that everything would be ok.  Sawyer was perfect.  He was a full term baby.  He had been released from the NICU.  He was fine.

A certain innocence was lost after Jake’s diagnosis and death.  The belief that I had that I would get married, have children and live happily ever after was shattered.  I can’t say exactly when but some time after Jake’s death I began to have hope again.  I hoped for days that were not so dark.  I hoped for more children.  Again, it did not take the path I thought it would but I did get pregnant with the twins and with Sawyer. 

I had convinced myself that if babies were not premature that they would live long happy lives.  I let myself hope and believe that we would raise Sawyer.  I had the false sense of security that Sawyer would lead a long happy life.  I let my guard down.  I let myself believe that we could not possibly bury another child.  Life could not be that cruel – could it?

No more NICU

November 28, 2010 at 4:56 pm | Posted in father, mother, NICU, transient tachypnea | 6 Comments

Evan went to the NICU first.  He reported that it was not at all like with Jake.  There were no huge machines hooked up to our baby.  In fact, he was the biggest baby in there.  I just wanted him back in our room – back in my arms.  

It was time to feed him so Evan wheeled me to the NICU.  It was a trip I had made many times before to see a different baby boy.   I choked back the tears.  Inside the NICU it looked the same.  The isolates, the nurses, the babies and our baby boy.  I knew he was a different baby boy but it was all too similar.  The room was hot and it began to spin.  I got sick and begged Evan to wheel me back to my room.  

In the hospital room I cried and tried to pull myself together.  Evan stayed in the NICU and would come back to the room to give me reports.  All the reports were good.  We were told that often once a baby is admitted to the NICU the baby will usually stay until it is time for the baby and the mom to go home.  I pumped and sent milk to the NICU.  I worried about not bonding with the baby.  I worried about not being able to name the baby.  I worried about not being a good enough mother.

The next day I worked up the courage to return to the NICU.  It was still hot.  The room still was spinning but I was able to feed our baby boy.  Bridget, Jake’s NICU nurse, was working that day.  She was not Sawyer’s nurse but she came over to talk to us.  We had not seen her since the morning Jake had died.  It was comforting to see her.  She had recently had a child of her own.  She told us how often she thought of Jake.  Bridget looked at our new baby and as she spoke about him I knew that this was different.  This baby was not Jake.  He would not stay in the NICU for long.  However, I still did get sick as soon as I got back to my hospital room.

The next day our baby boy was brought back to our room.  And we named him, Sawyer Brady.

I am Sawyer

Looking back now maybe this was Sawyer’s way of letting us know that everything was not perfect.  Maybe he was trying to prepare us for what was to come.

Sawyer’s Story (part 2)

November 23, 2010 at 9:38 pm | Posted in father, mother, NICU, parents, pregnancy, transient tachypnea | 6 Comments

The morning of November 17th we drove to the hospital.   It was all going according to plan – we had even packed a bag.  The previous two emergency c-sections Evan had to leave the hospital to go get our things.  

It took a few times for the doctors to get the epidural correct but before we knew it I was being wheeled into the operating room.  I remember the doctors calmly talking about their day during my c-section.  There were three people in the operating room with me and Evan.  In contrast,  Jake and the twin’s birth were both crowded and far from calm.  At 1:52 our beautiful perfect baby boy was born.  

This slideshow requires JavaScript.

We all went to the recovery room together.   I could not help but to think back to the recovery room after Jake was born.   Evan and I were there without our baby.  We did not know if we would ever see Jake alive again.   Now, here we were holding our full term 8 lb, 1 oz. baby boy.   Not only could we both hold him but I was able to feed him.

We all left recovery and went to our hospital room together.   I did not want to let go of him.   Two hours after being back in the hospital room I tried to feed him again.   His color seemed to change.   We asked a nurse to come in the room and take a look at him.   She said that she needed to take him to the nursery to check him out.   The nurse came back a few minutes later to tell us that he was being admitted to the NICU for transient tachypnea.

My brain could not process what was happening.   Our baby (who still had no name at this point) was perfect.   He was a full term baby.  He was 8 pounds!  Jake was 14 weeks early so of course he would go to the NICU.   I had even thought there would be a good chance the twins would go to the  NICU.   How could our full term singleton possibly be in the NICU?    

Several doctors and nurses explained to me that transient tachypnea was very common.   It is extra fluid in the baby’s lungs which would normally be squeezed out when the baby went through the birth canal.   During a c-section there is no squeezing so the fluid was still there.   I heard the words but it still did not make any sense to me.  This could not possibly be happening.

Create a free website or blog at WordPress.com.
Entries and comments feeds.