Thursday, November 13, 2008

CBC RADIO interveiw on Nov. 12, 2008

This was really unexpected! I came home from a doctor's appointment and my husband said Paul Castle who hosts "Shift" on CBC Radio wanted to do a telephone interview with me about Wyatt. CBC said I could share it with you on my blog. A big thanks to CBC!

Note: this audio is approx. 12 minutes long. There is a 10 second pause at the start before it starts.

Wednesday, November 12, 2008

Intubated, Ventilated, and Drug Induced Paralysis

This picture is hard to look at.
To save Wyatt, he had to be intubated. A tube was inserted into his mouth and down past his larynx so he could be ventilated. A machine now controlled his breathing. Precious oxygen and nitrate were forced into his lungs at a controlled rate. My poor little guy.
These machines were frightening. Constant graphs, charts, ominous beeping, warning tones and numbers that fluctuated on monitors, making you grip the armrests on your chair as numbers rose and fell. Once, in the early days, while I was silently bawling my eyes out next to Wyatt as I watched helplessly as the number representing his oxygen levels dropped, a NICU nurse told me to stop fixating on the machines. Concentrate on your little guy and let them worry about the numbers. At the time I thought she was crazy. How could a parent not worry? But she was right. I had to see Wyatt. Not the tubes, pipes and wires. It took a long time for both my husband and I to learn this.

Wyatt had to be paralyzed by drugs to keep him from ripping tubes, wires and pipes from his body. A NICU nurse had mentioned to me he was a fighter though extremely weak; he was attempting to pull the tapes and wires off as fast as Dr. S was putting them on during those first few crucial hours. He needed to be paralyzed but I think that was what really scared me the most. He didn't look real. No moment. No sound. Like a really large baby doll. It frightened me to sit beside him at first. I wanted to touch him, to pick him up and squeeze him to my chest to feel his little heart beat to reassure myself that he wasn't dead. But I couldn't touch him, or hold him or even talk to him. I was torn; I wanted to run away and hide in my hospital room and I wanted to stay. If he was going to die, I wanted to be there to hold him in my arms at least once and kiss him and tell him I loved him before he left me. I didn't want to be robbed of that.

So, I stayed by his side for hours, barely eating and definitely not sleeping. Already suffering from post traumatic stress and anxiety from the accident, I was primed for postpartum depression.

Many Thanks From Wyatt and Family

Prayers. Support. Kindness. Compassion.

To have members of your community extend these precious gifts to you unexpectedly, well, it is truly amazing. As a parent of a sick child you are so full of worry, so full of anxiety that you can loose touch with your community. Drugs, hospitals, doctors, specialist and health professionals become your world. It's a lonely, frightening place. But to have a helping hand to come out of the blue in these trying times, it's like a ray of light bursting through a dark sky. Uplifting and fills you with hope.

Thank you so much Don and Chris Wilson of Wilson Builders LTD. for your kindness towards my little boy and family.

And to Father John Jennings and Father Monte Peters and all the members of St. Theresa's Parish and St. Anthony's Roman Catholic Church Parish, thank you. Up at the NICU, they were calling Wyatt the "miracle baby" and I know it was the power of prayer that guided the doctors and nurses hands. Thank you, thank you for your prayers!!


Monday, November 10, 2008

A Grieving Grandmother's Persepective...

You can not even guess how honoured and blessed I am to have a mother-in-law like Germaine. This special woman raised a wonderful man who I am lucky to have as a husband. She gave me the gift of a helping hand when my world was sent spinning out of control over and over again in 2008. I owe her and her kind husband Kris so much.

Germaine wrote this blog entry for all of you. I must confess, I found it hard to read because it is still so very raw for me. But it is truly something must be shared with all the grandparents of little ones who are sick. You are not alone in the fear, the sadness and the grieving.

*** * ***
"Hi Everyone,

Wyatt is my beautiful grandson and brother to his two beautiful sisters Lila and Tressa. His parents name are Melissa and Leonard. This is their story.

Melissa was driving home at 7 pm at night. She had our granddaughters in the backseat and was on a twinned highway. A drunk driver, who shall remained unnamed, came along on this twinned highway on the wrong side and collided with Melissa’s Ford Windstar. She was seven months pregnant at the time. I will not put a name to this drunk driver because I want to tell you Wyatt’s story.

The drunk driver’s Saturn(sedan) collided head on with my precious family and took all semblance of a normal life from them. He then proceeded to run from the scene. Fortunately he was apprehended at his grandmother's house. Melissa suffered a severe concussion and whiplash. My two girls suffered minor cuts and bruises. We will never know what impact the memory of this accident will have on them. Melissa was the one who suffered.

When they arrived at the hospital Melissa was told that her pregnancy was in jeopardy. She was 7 months pregnant and it was a complicated pregnancy due to gestational diabetes. If Wyatt survived the next 48-72 hours he would probably be o.k. Mom of course was in a panic. The concussion only added to the panic she was feeling because she had lost some of her memory. Wyatt did survive beyond the 48 hours and Melissa carried him to term.

On June 15th Wyatt came into this world. He was not breathing and he had heart issues and was rushed to the neonatal unit where they proceeded to try to revive him. He was a fighter and they managed to bring him back but they did not hold much hope. They did not know how long he had been without oxygen. They gave him 24 hours and then they would see. My husband Kris and I were at the hospital at the time with our two granddaughters, Tressa and Lila. We had to take them home with us because Mom and Dad had to stay around the clock to watch and pray over Wyatt. What started out being a routine Cesarean section became a nightmare in a matter of seconds. No one knows how a second can change your whole life. For my son and his wife their world as they knew it ended. Their life became endless hours at the hospital watching to make sure that Wyatt had a parent there at all times. My son’s job ended that day as well because his wife needed his support.

Wyatt has had numerous battles. He had septimia which is an infection you get while in hospital due to all the tubing he had hooked up. He was in serious danger of losing his life again as he did not respond to the antibiotics. They had to send away for special antibiotics to see if they could bring his infection under control. While he was fighting for his life other conditions developed which again threatened to take him. His belirubim count was so high that they did not know if he would be brain damaged from the jaundice. If they could not bring that under control his prognosis would be grim. He could be permanently brain damaged. In the meantime he developed a blood clot in the anterior valve of his heart. I am not a doctor so I am telling you this to the best of my knowledge. If the clot was to break off it would travel to his lung it could cause death or serious breathing problems which in turn may cause him to die. His condition is called Acute Pulmonary Hypertension. Wyatt veins did not constrict or open up at birth which caused him to have many problems. Wyatt is four months old now and still fighting, He is a beautiful boy and he continues to surprise us every day by doing things they did not think he would ever do.
I can honestly say that we have been grieving for months now. You see initially we did not have time to think about it as we took our granddaughters home with us. They did not go home for months as both sets of grandparents took over their care. To this day I don’t know how or why we could do what we did. We had never had our granddaughters for any amount of time on our own. We did not have time to think or feel the drama unfolding at the hospital. Wyatt was baptized that night. He almost lost the battle ….he was paralyzed for the first month and a half of his life. He was intubated, tube fed , poked and prodded in every way and watched around the clock. A literal time bomb….tic tic tic…will he make it.

For his grandfather and I it has been a very strange experience because as I said we did not grieve immediately. We are grieving now. We are grieving the loss of time of the first few months of our grandson’s life.

Look into those beautiful blue eyes and I know you will see what I see… an angel on earth. We love him so much and we love their parents who are doing such an excellent job of keeping their family together.

Thank you for your support,
Wyatt’s paternal grandparents "
*** * ***

Thank you Germaine, I love you so much...

The Diaper Dilemma

What's incredibly stinky, super tall, and very high maintenance? Wyatt's diaper pail!

Have you ever heard of a newborn wearing size 3 diapers? Poor Wyatt! Size 1 looked like a bad advertisement for men's bikini brief underwear. The nurses were using the newborn size on his foot to help heat it up for the tons of times he needed to give blood.

And now, at almost 5 months, he is wearing size 4-5. Diapers only go up to a size 6 for babies! Plus, as all you moms and dads know, there is fewer in a pack as the sizes get bigger and the price gets higher. Yikes! Will Wyatt need "Depends" when he is 1 1/2 years old?????

Well, I'm not sure what Wyatt and I are going to do...

Friday, November 7, 2008

Free Fitted Crib Sheet Pattern

Well, I posted my first ebay auction to benefit our little family. It's for a fitted crib sheet. They are sturdy... I still use the ones I made 5 years ago for my first child. Good thing they are blue, eh Wyatt? :)

If you want a fitted crib sheet that fits, looks beautiful, and is easier to put on than the department store crib sheets, please consider clicking on this eBay link. They make great gifts too! I put as much care and attention in their creation as I do when I make them for Wyatt.

If you sew, here is the pattern I use. It is a combination of several patterns I've found on the web. I love making them and they are so easy to do!

Materials: 2 yards of cotton or cotton blend woven fabric. I like to use flannelet; it's so soft on a little baby's skin. One spool of good quality polyester thread in co-ordinating color. 2 yards of 1/4 inch elastic. A cutting mat, large quilting square ruler and 90 degree angle ruler are nice to have.
  1. Wash fabric and dry in dryer to pre-shrink it.
  2. Fold right sides together so the length is 2 yards by 22 1/2 inches approx. Iron or smooth with hands.
  3. Cut one end of the fabric to create a straight edge. Measure 70 inches along the folded edge, mark with a pencil and cut a straight edge. You now have a rectangle 70" x 45" approx.
  4. To form the mattress pockets, cut a 8 3/4 inch square from both the top left and right corners of the folded fabric. You will have 4 surplus pieces of fabric. CAUTION: Don't cut these on the folded edge!!!!
  5. With right sides together, match up the cut edge of each square cut from the fabric and sew with a straight stitch with a 3/4 inch seam allowance. This forms the mattress pocket. I then do a zigzag stitch along this edge to over lock the material, keeping it from fraying. Do this to all four corners of the sheet.
  6. Turn up the edge 1/4 inch all around the sheet and sew. I usually do a zigzag stitch here.
  7. Turn the sheet so the wrong side is facing you. On the shorter side of this rectangle, stay stitch the end of one elastic approx. 10 inches from the corner seam and about 1/4 inch from the edge. Stretch the elastic taunt and zigzag stitch it to fabric, making sure the needle catches the elastic. Sew all along the long side of the rectangle, around the corner and stop about 10 inches from that corner's seam. Stay stitch the end of the elastic and snip. Repeat this step along the other side of the sheet.
  8. Trim all long threads.
That's it! Try it on your crib and admire your handy work. I don't sew the elastic all the way around because I like to have some way to tell which edge is the long side and which is the short side. Plus they fold neater this way.

Have fun! :)

Thursday, November 6, 2008

Hurray!!!! No More LOVENOX injections!

We just got word today from Dr.S. who spoke to the cardiologist from I.W.K. to quit the Lovenox. You cannot guess at how happy I am to stop these injections!!! Poor Wyatt, he is looking like a very sore little pin cushion right now.

But it is also very terrifying. The blood clot in Wyatt's heart is still there and it is massive. The Lovenox was to keep the clot from getting bigger. The theory was that as Wyatt grows, the clot would get smaller in relation to his body and eventually be reabsorbed by the body. Now our family is wondering what will happen next without the Lovenox. We are meeting Dr. S. in a couple of days for a consultation to see what the next step will be.

You might be wondering what Lovenox is. It is a low molecular weight heparin, a costly drug that thins the blood. To quote Wikipedia, it is:

"Enoxaparin is a low molecular weight heparin manufactured by Sanofi-Aventis. It is marketed as Lovenox or Clexane. Enoxaparin injections are derived from the intestinal mucosa of pigs. Enoxaparin is used to prevent and treat deep vein thrombosis or pulmonary embolism, and is given as a subcutaneous injection (by a health care provider or the patient). Its use is evolving in acute coronary syndromes (ACS)."

Basically, I'd have to pinch a fatty part of either Wyatt's arms or legs, insert the needle at an angle and press the plunger all the while my little guy is howling and writhing in pain. Not fun. We were told wayyyy back in August 2008 (notice the almost full sharps container) that Wyatt should become accustomed to them and would barely flinch. HA!!! Also notice how strong of a grip my husband has on Wyatt. Needless to say, Wyatt does not like needles. Neither does Mom and Dad.

The worst part about giving the injection as a parent is the fact that you are hurting your baby, even though you know you are helping them. Moms and Dads who must give needles too, you folks are very brave people. I'm new to this, and I can't tell you how many times I dropped the wretched thing or stabbed myself with it. Of course, the needle must be absolutely sterile, so into the sharps container it would go!

This definitely isn't an experience you'd soon forget, though you'd like to. Here are my top two needle moments I'd like to forget:

  1. Lovenox crystallizing in the shaft of the needle, so when you inserted it, you could not get the plunger to press down to give the needle. Wyatt absolutely needed this medicine, so I'd have to stab the poor little guy again with a fresh needle and hope this one would work.

  2. Having a panic attack just as I was pushing the plunger of a second needle. The first one malfunctioned like how I mentioned above. My husband put that still full needle in the sharps box. Half way through administering the dose of the second needle, I couldn't remember if I gave Wyatt part of the dose from the first needle. I yanked it out and tore open the sharps box, frantically digging through the old needles to find the loaded needle while my husband looked on with horror. Crazy? Maybe, but I seriously thought I gave Wyatt too much of the blood thinner. THAT would be very bad. Ah, panic attacks. I'm new to them too. Don't you just love them? sigh

My poor little sweet pea.

Wednesday, November 5, 2008

Thanks so much, Mia! And a huge thank you to all the people who have contacted me about Wyatt. Your thoughts, prayers and support mean a great deal to me and my little family.

And to the families that have contacted me about pphn... bless you. You are in my prayers. :)


How a devastating story begins.....

June 16.
It was early in the morning and I had just got back from a camping trip the night before when my cell phone rang. Hearing my mother's shaky voice, I knew something was terribly wrong. She struggled out a sentence that took me by surprise. "Melissa had her baby last night,and it doesn't look good." After mom told me a quick version of what happened, I hurried up to the hospital to see my sister and beautiful baby Wyatt.

I entered her room and there sat my sister on her hospital bed, tears running down her cheeks, holding tight a rosier Mom gave her. I ran over and gave her a huge hug. When she had finished telling me what had happened we went to see baby Wyatt. Once we were in the neo- natal unit and finish scrubbing our hands really well, (3 minutes!) we went over to where he was laying in a incubator. A breathing tube was in him, connected to monitors reading numbers that went up one minute then down the next. He was laying so still with his eyes shut tight. No one was allowed to even touch him; it could disturb him and that was extremely dangerous. It was just horrible seeing him like that. I had to fight back my tears so i wouldn't upset my sister. It was such a awful feeling of helplessness, as if there was nothing anyone could do except wait. It was in Gods hands.

So, I prayed. And prayed and prayed. I even heard from a friend that our priest asked the people attending church to pray for baby Wyatt. And let me tell you, I do believe in the power of Prayer. After a bit, he started to slowly improve dispite the odds against him.

November the fifth.
It's so warm outside. Just heard baby Wyatt start to cry. I walked down to his room and pick him up from his crib and hold him tight in my arms. As he looks at me with his bright blue eyes, he stops crying and makes a smile. "I love you baby Wyatt," I say to him as I lean forward and kiss his forehead. Surprisingly, he grabs very hard onto pieces of my dangling hair! I laughed...and yes it hurt. lol.

Looking back at the moment he was in the hospital, it feels like it was a terrible nightmare. I am very glad that part is over. My beautiful little nephew still has a very long, hard way to go yet, but looking into his gentle blue eyes I feel inside me that he is going to be alright. One thing I can say to others, "if a situation where a love one is ill and it doesn't look good...Pray. Pray and don't ever give up believing".

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!