Wednesday, October 29, 2008

5 AM and raining...

Ugh, it's 5am, raining very hard and I ache more than usual. Had physio therapy yesterday and it was painful and depressing. Piano-wire tendons. Not good. Now I know why my hands spontaneously drop things. Rats! Makes drawing and painting almost impossible, but I refuse to give up.

When life gives you lemons, make lemonade. Lemon bread. Lemon pie. Lemon cake, etc.

Did I mention I'm sick of lemons?

Tuesday, October 28, 2008

What is Persistent Fetal Circulation?

You may be asking, what is this condition? I did. Here is a good explanation by a member of Children's Hospital and Health System, the Children's Hospital of Wisconsin from their "Disorders, Diseases and Organ Topics" -Persistent Pulmonary Hypertension page. The quotes are from this website.

"Persistent pulmonary hypertension (PPHN) is also known as persistent fetal
circulation. In this condition, a newborn baby's circulation changes back
to the circulation of a fetus, where much of the blood flow bypasses the lungs."

Later, Dr. S. and Dr. B., both amazing pediatricians, said Wyatt came out "floppy" with no muscle tension like "normal" babies do. Something had happened that deprived Wyatt of oxygen.

So why is PPHN such a concern?

"When blood is shunted away from the baby's lungs, it is difficult for the lungs
to do the work of exchanging oxygen and carbon dioxide. Even breathing air with
100 percent oxygen, babies with PPHN have low blood oxygen levels. This can be
serious, as all of the body's organs are dependent on oxygen-rich blood being
pumped to them and may become damaged from lack of oxygen."

This was what the doctors feared. Brain damage. Lung damage. Heart damage. And the list went on. Your head spins with the tidal wave of horrific possibilities.

What symptoms did they see to diagnos Wyatt with PPHN?

"Baby appears ill at delivery or in the first hours after birth. Cyanosis (blue
coloring). Rapid breathing. Rapid heart rate. Low blood oxygen levels while
receiving 100 percent oxygen. "

He had them all. Plus the doctors noticed Wyatt had an abnormally large heart that was floppy. So what did the doctors do to try to stabalize him?

Supplemental oxygen (giving 100 percent oxygen by a mask or plastic hood).
Placing an endotracheal tube into the baby's windpipe (ET tube). Mechanical
breathing machine (to do the work of breathing for the baby). Medications (to
completely relax the baby's muscles and reflexes so that he or she will better
respond to the mechanical ventilator). Inhalation of nitric oxide (to help
dilate the blood vessels in the lungs).

Treatment of PPHN is aimed at increasing the oxygen to the rest of the body
systems. Long-term health problems may be related to damage from lowered oxygen in the body.

Frightening. Absolutely frightening. What do you do as a parent? Pray and wait.

Monday, October 27, 2008

Persistent Fetal Circulation or Persistent Pulmonary Hypertension (PPHN), A Truly Frightening Thing

Here is the first picture of my baby Wyatt! Even though he is as cute as a button, I confess I still find this picture hard to look at. He was so desperately ill at the time.

I knew something was wrong moments after Wyatt was born. Almost everyone in the operating theater were laughing and commenting on how big he was. My OBGYN joked that she wished she wore her rain boots during the C-section because there was so much water. The anaesthesiologist was talking to my husband, Leonard, saying this was the biggest baby he'd ever seen born in his over 30 year career. I was only partially listening because I was trying to hear what I desperately wanted to hear for the last 39 weeks. But there was only silence.

I kept asking "What's wrong with my baby? Is he alright?" One nurse came over to me and said he was having a little trouble but not to worry. That spiked my fear, but then I heard a weak grunt and someone said, "That's your baby boy talking to you, Mom!" He made a sound so he must be fine, right? What a relief! He was darted out of the room so fast, I only got a glimpse of him. I stayed in surgery for about another hour due to a damaged ovary, but it could not be saved.

While in the recovery room, my husband, Father and Mother chatted with me. My two little girls, 5 year old Tressa and my 2 year old Lila came in as my parents stepped out. We were all so excited. Leonard, my mum and dad all stepped out to see Wyatt. Leonard's parents came in and took the girls out. Leonard came in again with my parents and said something to me. Shocked, I looked into my mother's and father's tear-filled eyes as mum pressed her Rosary into my hand. "Don't let go of this, keep it with you at all times and pray for our new little baby. This is really serious." My memory is not always the best due to my head injury from the accident I had on March 4, 2008, but I remember crying my heart out. My OBGYN, Dr. M., was crying when she came in to see me.
Much later, when I was in my room, Dr. S., one of the pediatricians came in to see me about Wyatt. He grimly told me that Wyatt had "acute persistent fetal circulation." Wyatt's little body basically still thought it was in the womb and oxygen was not circulating through his body. It was extremely serious, so serious that Wyatt could not be air lifted to Toronto Sick Kids Hospital or to the IWK for sick kids in Halifax. He would die in transit.

We waited, and waited to see him, but they were still trying to stabilize him. Around midnight, my brothers Ken and Kris arrived after a 2 hour drive, collecting Priests and Padres along the way. Ken had arranged Wyatt's baptism and we held it in the NICU. I could not thank my brothers enough.

Wyatt was so sick, I couldn't hold him, touch him or even speak to him. No loud noises were allowed around him. He had to be in a "womb" like state with no stimulus and I remember holding my breath every time a nurse would touch him because his stats would "crash." This is a picture of me touching Wyatt at his baptism. It was only for a moment and I treasured it for the days that followed.

Why I am blogging about Wyatt and his condition...

You might be a parent or a loved one to a baby born with acute persistent fetal circulation (or persistent pulminary circulation) or who have developed blood clots in their hearts from central lines. After Wyatt was born and when I was finally strong enough, I went on the web hoping to find a story of a baby with the same condition as Wyatt who beat the odds. As a parent with a sick child, you want something to give you hope, to give you a parents perspective of these terrifying things the doctors and specialists are saying. Unfortunately, there wasn't much that I could find. I vowed to create something.

This will be physically, mentally, and emotionally hard for me but it must be done. I don't know the outcome of this story yet, and I pray to God there is a happy ending to this chapter in our lives coming our way. And this I definately know: despite all this trama, financial hardship, and stress, I would go through it all over again for my precious Wyatt. Mommy, Daddy, and your two sisters Tressa and Lila love you so much, baby boy!