It’s been a while…

Hi!  It’s been quite a while since I’ve updated this blog.  Luke is no longer “babyluke” but instead a rambunctious 5-year old who started kindergarten this year.  His heart check-ups have been really good with minimal changes over the years.  He does have a mildly leaky aortic valve for which he takes a medication called Enalapril every 12 hours (7am and 7pm).  Our cardiologist put him on the medication when he was 2 because studies show lowering the pressures in the heart can help preserve the valve function.  Other than that he is doing really well.  I can’t say I don’t worry… a lot.  However, I know that it’s normal.  I never hesitate to call or visit the cardiologist if I’m worried about something as I’d rather have my mind put at ease.  Luckily we’ve got a really wonderful doctor who takes my concerns seriously and talks me down when I need it.  Ha!

Anyhow, here are some updated photos of our precious Luke and family.  Since I last posted we’ve added another baby girl to our family.  Both of our girls are heart healthy!

If you’ve found this blog because you’re just starting your “heart mom or dad” journey please don’t hesitate to contact me.  There is a great, wonderful, caring heart parent community out there I’d love to introduce you to.  God bless.

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Elizabeth Grace

Elizabeth is continuing to do well in the NICU. Her breast-milk feedings have increased to 12ml every 4 hours and she is tolerating them well. She has gained a little weight back and was 2lbs 7oz this morning.

She is on room level oxygen and is no longer on the CPAP. She has a nasal cannula and has been doing well on it. She is still having “episodes” where she forgets to breath but her alarms go off, the nurses rub her back and she snaps right back. As an example, she had five “episodes” since 7:30pm last night but the doctor said for her age, size and being on the nasal cannula having 5 is actually not bad. She is on a higher dose of caffeine to help stimulate her breathing and the hope is as it builds up in her system she will have fewer of these episodes. If the episodes don’t improve or get worse they will put her back on the CPAP for a while until her nervous system matures more.

I am able to hold Elizabeth twice a day for Kangaroo Care, which is direct skin to skin contact. She responds well to the Kangaroo Care, her stats all improve when I’m holding her. I’m sure my stats improve too!

Luke isn’t allowed in the NICU (only 18 and older are allowed) so he hasn’t been able to see his baby sister yet. We have shown him photos and talk about Elizabeth all the time though. He is a bit confused still but excited to meet her.

Elizabeth Grace Hundley

Hi Everyone,

We are happy to announce the arrival of our new addition Elizabeth Grace Hundley!  Excited to enter the world, Elizabeth Grace, a little miracle at 2lbs 9oz and 15.4 inches long, arrived just shy of 10 weeks early on August 2nd.

It was quite a traumatic time for both Elizabeth and I, though we are both doing well now.  I suffered a placental abruption just as we were getting ready for bed Sunday night. The ambulance arrived within 5 minutes and rushed me over to St. David’s Hospital downtown.  Because of the massive amount of bleeding the doctor rushed us into surgery and delivered Elizabeth.  Elizabeth came out crying and feisty, by the grace of God.

I had a difficult time in surgery because besides having a placental abruption they discovered I had a rare condition called placenta accreta. The placenta had grown into the muscle of my uterous and caused those contractions that play a role in minimizing blood loss to stop. I apparently lost so much blood I didn’t have protein/plasma in my blood to stop bleeding and I was hemorrhaging.  After having had three blood transfusions and two plasma transfusions our wonderful and talented doctor was able to save me.  I am out of the hospital and feeling better every day.

Elizabeth is in the NICU breathing on her own.  Because she was born at 30-weeks her nervous system isn’t fully developed.  She has periodic episodes of apnea and bradycardia.  To help her body to remember to breath she is wearing a CPAP.  The CPAP does not breath for her but rather keeps a steady stream of air going into her lungs to remind her body to breath when it forgets.  In addition she is on a daily dose of caffine to stimulate her breathing. She has been doing well and seems to be having fewer apnea episodes each day.  She has started to take small non-nutritional breastmilk feeds to stimulate her digestive system.  Unfortunately, she has been having a little trouble digesting the milk so they are proceeding very slowly and carefully.

Overall we are very pleased with her progress and are told we can expect her home in 5-8 weeks.  Jon is keeping busy helping out with the Luke, working and being a taxi driver to and from the hospital.  We appreciate all of the well wishes and prayers.  We’ll keep you posted!