She's Just Amazing

Natalie never ceases to amaze me. We made a round trip to Anchorage yesterday for doctor's appointments and managed to squeeze a cardiology appointment in for Natalie. We were up and leaving the house at 5 AM and saw the beautiful sunrise in our rearview mirror.

I am just convinced that Dr. B. must have oxygen or nitric oxide pumped into his office through the venting system. Natalie's oxygen sats were 82%! What?! And of course she was very pink and happy. Her pulse was 100 and BP was 90/40. (Most of you could care less, but some of the details are just my journaling.) We talked about Natalie's recent illness and came to the conclusion that her sats were probably low because of the infection. Of course with a pulse of 150, her little half-a-heart was using up a lot of O's.

Natalie did have blood drawn to check her hemaglobin levels. The best that I can explain it is that with blue-blood kids, they have to make a lot of extra red blood cells to compensate for the mixed blood physiology. If her little body wasn't getting enough iron or wasn't able to compensate for the increased amount of red blood cells that it had to make, it would make a lot of immature red blood cells. They are small and will easily stick together, not being able to pick up as much oxygen. If the body is not having to make them too quickly and has the iron to make them, they have enough time to grow nice and big-able to carry lots of oxygen. They also aren't as sticky. So, we went down to the lab to get blood drawn.

Natalie has gotten her Synagis shots every month, but this was a little different. I don't sugar coat anything with her and tell her when an "owie" is coming. We walked into the lab and looked at all the pretty pictures of flowers. I sat in the chair with her on my lap. When she saw the white-coated lady getting out the tournaquette, I could see her little brain start turning. I told her that she was going to get a little owie. She looked again at the lady and buried her little curley head in my chest. It was a soft cry because she knew what was coming. I held her tight and put her arm out to let the lady get the blood. The cries got louder, but she didn't fight it or throw a fit. She did so good. I was so proud of her.

It doesn't get any easier for her mommy. I always wonder what's going through her head now that she understands more. She always knows what produces the "owies" and knows that they are for her. It's as though she accepts them as being part of her life. When her Synagis supplies would arrive, she knew exactly what was in the Fed-ex box. After her shots, she always wanted to look at the needles and syringes. I've caught her up on the counter picking up her used syringes to check them out. In fact, she started calling the syringes that I use to measure out her liquid enalapril "owies." I had to explain that they wouldn't give her owies-they didn't have the needles.

Natalie's latest interest has been the DVD's that have been made about her time in the hospital and her first year. She is constantly asking me to watch "Happy Baby" as she calls them. One DVD has a short clip of her at three months old after she had been brought back to the Ronald McDonald House the first time. She has the biggest smile on her face with the NG tube coming out of her nose. She doesn't make much noise but acts like she is mouthing sounds. (I don't think she had found her voice yet.) Her eyes are wide and sparkling. (Still on Ativan.) Yes, it brings back many memories and emotions for me. Natalie loves to watch them over and over. All the pictures are there-the sad ones with all the tubes-and the happy ones with her first smiles and accomplishments. She loves them all. Natalie's world revolves around Natalie! What more can I say, she is TWO.

(I got a call today that the lab tests showed nice big red blood cells!)

Scarlatina/Scarlet Fever

While I was single parenting it when Tim was in Canada for a week, Natalie decided to come down with Scarlatina. She had experienced a fever ten days earlier, but I didn't get the correlation until later. She had been waking up crying in the middle of the night, but wouldn't ever tell me what was going on. Her volcabulary is still limited so there are many times that she has to show me what she is talking about or just point. Two different nights, I gave her ibuprofen and then she slept through the rest of the night. I knew that she didn't feel very good, but couldn't put my finger on the problem. I was getting worried when she said her legs were "heavy" when she was walking up the stairs.

(The flash really washed out the red effect of the rash. It looked a lot worse in person.)

Sunday she started having a moderate fever (over 101F) and came down with a rash on her arms and torso. The little red-raised bumps were pin-like. I figured they would go away like any other viral rash that kiddos get at this age. But Natalie started complaining about her hands and her belly hurting her. Her heart rate was in the 150's -160's and her respirations were around 60 per minute. She was looking bluer than her norm. She just wasn't herself. So I got a friend to watch the other three kids and took Natalie to the urgent care center our in town.

The doctor thought it looked like Scarlatina even though Natalie's throat didn't look like the typical strep throat. Scarletina is caused by the group A beta-hemolytic streptococcus bacteria. This was conciderably worrisome to me because this bacteria can settle in heart valves and cause serious problems-not something that we need to be dealing with.

So we left urgent care Sunday night with some Augmentin and started the first dose.

Her rash progressively got worse-which I expected. Poor girl had what looked like a terrible case of eczema all over her arms and legs. The rash left her torso and settled into her hands and feet by Tuesday. It was dark red and felt like sandpaper. She itched really bad. I treated that mostly with topical hydrocortisone and Benadryl.

Thursday, Natalie woke up with hives all over her face and the left side of her body. Talk about itching...she was just a trooper and didn't complain, but I could see her constantly scratching her arms and legs. Back to the clinic we went and her Augmentin was changed to Azithromycin. That one did the trick and now she is back to her normal active self. (She's getting into everything and irritating her sisters.)

During our trip to the clinic, we found out that Natalie's pulse ox was down to 72-73%. It had been awhile since I had taken her pulse ox and was a little surprised that it was so low. That would explain why she's been huffing and puffing more lately when she does anything strenuous. It's time for a cardiologist visit so we'll see what the next step is then.

Growing Boy's Point of View

Hi! I'm five months old now. My sister, Jessica, thought I needed a flower in my swing with me since it was Spring. I enjoy swinging. Daddy likes putting me in my swing to make me take my nap. I also have my blue bear blanket with me in this picture. His ears are getting a little worn from all my chewing. Mommy keeps looking in my mouth. She says something about looking for teeth...don't know about those, but the chewing sure feels good.

Someday I'll grow into Daddy's hat.

Mommy says she'll get me my own hat this summer so I don't get my ears sunburned. All my thick and long hair has been rubbed off, plus Mommy gave me a trim around the ears. My hair is pretty short now. It's so blonde that you can hardly see it.

I can't believe Momma had to put this picture in here. Sometimes it makes me so mad when I have to be on the floor doing my push-ups. I've gotten a lot better at it though and actually have enjoyed playing on my tummy.

Here's a picture of my wake-up play-partner. I've decided that 7 AM is the ideal time to get started with my day. Jessie is usually up early too and comes in and plays with me in the morning while mommy is taking a shower. I'm a happy waker-upper and welcome the play time. Mommy likes having me diverted awhile too. She says, "That's what siblings are for."

I've started sitting up a little at a time now. I'm still wobbly and need help, but I like the change of view.

I like to sit at the table with my family when they are eating. Being left in my swing or playing on the floor is not my idea of togetherness. I've got a lot to learn about living and don't like to be left out.

Mommy says that I'm getting bigger, but she hasn't weighed and measured me lately. Maybe she'll have some stats soon.

"This girl loves horses!" was the saying on a T-shirt that Heidi got for her birthday. She loves to ride and is getting confident the more she does it. Tim took Heidi and Jess to his dad's house where we have one of our horses. The other one is with a friend. Unfortunately our horses don't get rode much since they are 40 miles away from us.

Craig is four months old now and he's such a sweet, snuggly boy. I'm soaking up all of his snuggles, because I'm sure there will be a day when dad takes priority. He's rolling over from his tummy to his back and rolls from his back to his side. We've had relatives visiting recently and his uncle has been able to get Craig giggling so hard that he gets hiccups.

This was the barnyard birthday cake that I made for Heidi's birthday. I found the recipe on the Family Fun website. It was fun to make and wasn't as hard as some of this other ones I've done. She had chickens, horses and cows in her barnyard. Happy 7th birthday, Heidi!

It's hard to believe that my oldest baby is seven. A lot has happened in the last seven years. I remember bringing home our little bundle of joy with my parents and my brother and his family. The wind was blowing 90 miles an hour (which is unusual for our part of AK). The sun was shining but you couldn't see it because of all the dust kicked up from the wind. The snow we did have, melted before I went into Anchorage to deliver and we had lots of ice.

Even though we had unmet expectations of the delivery for our first one, Tim and I were proud parents. It was so fun to see the new Daddy with his daughter.

Since then, we have added a few more and what began as a cozy threesome, has expanded into handful of noise.

Heidi loves to draw and now has started to compose short story books. Her latest...

The Girl and The Dad

by Heidi Hand

(Written as it was written by Heidi. The story was fully illustrated, but I don't have the pictures scanned yet.)

The dad liked the girl wen she was born.

The dad was so happy he took her to playses.

Soon the dad had another baby and that was Jessie.

And the girl felt left out.

Soon the girl andstood that she was a big sister.

Life as the oldest is rough. Hopefully she will find the enjoyment in being an older sister.

Support Standardized Pulse Ox Readings

In lieu of Congenital Heart Defect Awareness Week, I would like to share our family's experience with CHD's.


Our family has been touched by Congenital Heart Defects more than once. None of the diagnosed CHD's have been ruled genetic in nature, yet it seems to me that there must be some kind of genetic link.



The above picture is of our daughter Natalie with her cousin Zachary. Zachary was born in 2001 with Truncus Arteriosis, Coarctation of the Aorta, Atrial Septal Defect and Ventricular Septal Defect. Zachary has had one open heart surgery to repair his heart and is now an active baseball playing 8 year old. He may be facing one more surgery to place a larger vessel graft, but so far has done remarkably well. His CHD was diagnosed 24 hours after birth.



Our daughter, Natalie, was born with Critical Aortic Stenosis/Bicuspid Aortic Valve and Hypoplastic Left Heart Syndrome. Her CHD was diagnosed within four hours of her birth. She was in critical condition by the time we noticed that she was sick. She is on the path to have three staged surgeries to allow her heart to function as a single ventricle pump.



Just this past year, I was diagnosed as having a Bicuspid Aortic Valve. So far, I have been asymptomatic, but may face a valve replacement in the future if it's leaking continues to get worse.



I also have a first cousin with a daughter that was born with an asymptomatic Ventricular Septal Defect. So far this little one-year-old's heart is repairing itself and closing the hole.



None of these heart defects were picked up before birth by the routine fetal ultrasounds. Two of them were noticed after they started to put the baby into distress. We've been told that no one has been able to pinpoint the exact cause of these defects. Sometime during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities. At other times the heart may stop forming normally later in pregnancy. With 40,000 babies a year born with CHD's in the USA alone and CHD'S being the leading cause of birth-defect related deaths it is a disease that needs more research and increased technology.

In Natalie and Zachary's cases, a single pulse oximetry reading after birth or during the first 24 hours would have been a red flag that these children had something wrong that needed to be addressed.

A pulse ox is not routinely done in hospitals or newborn nurseries after birth. I would like to encourage you to support use of pulse oximetry readings after birth. Tell your OB/GYN, the hospital you deliver at and if you practice in the medical or nursing fields, campaign to have it as a standard procedure. It could save many children from becoming severely ill before their CHD is noticed which could increase good outcomes and may reduce the amount of severely invasive procedures that are needed.

On Grief and Suffering

From "A Symphony in the Dark" by Barbara Rainey and Rebecca Rainey Mutz. Rebecca lost her first child right after she was born due to multiple heart and brain defects. They express the feelings that many of us have felt from loss, but also have a beautiful way of explaining God's part in it all.

"Humans are afraid of pain. No one likes to hurt. We avoid it, mask it, and run from it, refusing to get close to pain even when it is not our own...Fear can make us superstitious and irrational. But God does not act haphazardly.Good and beauty can be found in the experience of loss if we are willing to embrace it. But finding the good and beautiful is only possible when we believe that God is lovingly sovereign, that pain is not random, not without origin, not without purpose."

"We also believe that death is in fact a disease that infects all of humanity, yet we know with certainty that God never intended that we should die. Death feels so wrong to all who face it because it is so wrong. Intuitively we feel the discord, the incongruity that screams, 'This should not be!' that strongly suggests there is another way. This clash within is a call to our hearts to believe the gospel."

"Likewise, the Creator of all beauty knows that in His living works of art and song the most beautiful are those who have known the darkness of pain and loss... Truly the experience of death makes the experience of the gift of life all the more precious and beautiful. This, I believe, is the message of Romans 8:28: 'And we know that for those who love God all things work together for good, for those who are called according to his purpose.'"


And by Larry Crabb
"The suffering caused by shattered dreams must not be thought of as something to relieve if we can or endure if we must. It's an opportunity to be embraced, a chance to discover our desire for the highest blessing God wants to give us, an encounter with Himself!"

Guess who is at the top of the page.