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.

Survivin'

"Laddalie" Not feeling so hot.
Happy little man feeling much better.
Jessie's five now. She wanted a brown dress on her princess birthday cake.

Jess serving tea with her new tea set. Natalie loves to play along.

I know, I know. It's been almost a month since I've posted anything. Well, if I posted any pictures sooner you wouldn't see the growth.

We've been hit by the BUG again. Heidi started everything off with a cough and an ear infection, then it quickly traveled to Jessica. Craig was initiated with his first cold by catching it. We thought Natalie was going to dodge this bug, but it caught up with her Wednesday. The runny nose started but so far her symptoms haven't been as bad as her older sisters. Maybe it's RSV and her high-priced Synagis is actually helping her out.

Craig has suffered terribly with this cold. Poor guy made a trip to the ER at 3 am Monday morning. I had been up for two nights straight with a crying baby that wouldn't let me put him down and I was losing my mind. I was beginning to feel like I did when Natalie got out of the hospital for the first time and I was giving her meds, feeding her or pumping every two hours at night. (ie.-everything was getting fuzzy and the world was spinning around as I moved in slow motion.) I needed someone to tell me that my overactive brain (that was telling me that my baby had something terribly wrong), was just playing tricks on me and my healthy baby was sick with an ear infection. Tylenol didn't work so hot, but ibuprofen did wonders for his attitude. The nurse practitioner suggested that we hold off on antibiotics since he really hadn't spiked a fever yet. We did start him on antibiotics Wednesday as he was still cranky when not medicated. Thursday he started smiling again and hasn't had any ibuprofen or Tylenol since Wednesday. Craig still has a little congestion, but is getting better overall. He's not too sure about the taste of the amoxicillin so I'm not sure how much good it actually is doing. It doesn't all stay in his mouth.

Our little boy is growing quickly. He has a new activity center to play with and I've caught him reaching for the toys hanging down. He's got such a sweet smile and coos and gurgles away. I've started to find him in different positions than I left him which means he might be rolling soon. He pushes with his feet and ends up at the top of his bassinet by morning.

Natalie is saying more words and is putting different words together to form thoughts. Yesterday and today her dad refereed some volleyball games. She was so excited to get out of the house to go watch, but as soon as she got there, she wanted to run onto the floor to see her Daddy. I was hoping that I'd get out of going today, but she came into the living room carrying her boots saying, "Ball! Daddy! Bye!!" How could I resist? She gave me that look with those dancing eyes and we were on our way.

Jessie has had fun giving tea parties with her tea set that she got for her birthday. She loves to plan parties and wants to have people over. Unfortunately I haven't been feeling as much like entertaining as she has.

Heidi is growing up before our eyes. She's becoming such a young lady. Valentines day has her all prepped and ready to make Valentine's cards. Just give her some paper, crayons, scissors and tape and you get something beautiful. Maybe you'll receive one of her creations in your mailbox.