So much has been happening lately, I don’t even know where to start. The most important thing going on is my lovely funny daughter, Jade, (age 20) is being evaluated for a pacemaker. She has taken the news very well, and of course nothing is for sure yet. I can’t say I’m surprised because I’ve been suspecting this was coming for quite some time. I really hope it’s not time yet, but if it is I think she will be happier and much more energetic in the long run. She will have to change her spirit animal from a sloth to something more lively – like maybe a hamster or something.
I’m also going to be trying to figure out how to change the name of this blog to 5brokenhearts since I shockingly found out in December that I too have heterotaxy syndrome, though a very mild form. All I know so far is I have a Persistant Left Superior Vena Cava, some other anomolous vein that I can’t remember the name of, and two bi-lobed lungs. Life is strange my friends. You just never know what’s around the next corner. I will be setting up an appointment with my two younger children’s pediatric cardiologist soon. At age 47 I told him I thought I was a little old but he said his oldest patient is 85. More on all this later….
I just saw on the heterotaxy fb a post about another mom who has familial heterotaxy in her family. She has two sons with different fathers so it must come through her like in my family. I felt an immediate kinship with her and my heart went out to her. Her children’s problems were much more severe than mine, requiring multiple surgeries. Anyway, someone commented about what a “special blessing” it was for her to have familial heterotaxy. That just blew my mind. I’ve thought about it and thought about it and can’t imagine anyone seeing that as a blessing. I’ve always felt it was a curse. What is good about not being able to have a normal healthy baby? Is watching your children suffer through congestive heart failure and open-heart surgery a blessing? Is watching them turn blue and fight for every breath a blessing? Is watching them waste away before your very eyes a blessing? Is being terrified of every little illness a blessing? Is being afraid you will outlive your children a blessing? Is living in constant fear and worry a blessing? Because that’s how I’ve lived for 27 years now and it feels more like hell to me. I wish I understood what she meant by that comment and I wish I could see it as a blessing but I just don’t and I never will. End of rant.
Auntie & Nephew
My, it’s been a long time since I updated here. My grandbaby, Titus, is now 9 months old and just the cutest little guy ever! He reminds me so much of Chris when he was a baby – what a personality! He’s just so smiley and happy and sociable. He makes me laugh so hard my stomach hurts. What a blessing and a joy! This being a granny thing is the best. :-)
As far as his heart goes, everything seems to be working really well. He is growing and is now about 18 pounds. I love to pinch his chunky little legs. He still turns a bit blue sometimes when drinking his bottle or if he’s crying but that’s not uncommon for repaired TAPVR babies. Please note: He does not turn blue when I pinch him, harhar.
My older children, Chris (now 26) and Jade (now 18) are still having chest pains and weird heartbeats. Chris decided we should all head down to Texas Chldren’s this next Winter and get all four of them checked out really well. I’ve been in contact with a cardiologist who has a special interest in Heterotaxy Syndrome and that’s who I want them to see. So look out, the mutants are coming back to Texas – YEE HAW!
My baby, Colton (now 7), is seeing the cardiologist next week when we fly to Anchorage for his dental surgery which no one will do up here because of his heart (which I think is totally stupid.) Speaking of stupid, Chris needs an MRI on his knee but they won’t do it without first seeing his surgical records from his heart surgery in 1988. Unf-ingbelievable. He told them, “You do realize that surgery was almost 24 years ago?” So you other heart moms may want to have those surgical records on hand. Who knew?
I was very pleased that the Governor of Alaska issued a proclamation for CHD Awareness Week. Governor Parnell is awesome. I like him much more than that quitter Sarah Palin. Here is the proclamation:
- State of Alaska Congenital Heart Defects Awareness Proclamation by Governor Parnell
I also got a proclamation from the three mayors in our borough representing Interior Alaska but I still need to go pick it up and send it to tchin.org.
Now I just have to get to work on the mandatory pulse ox screening for newborns.
That’s it for now. Hugs to little Ethan Pennington who has been on my mind all week! What a tough little heart warrior!
Baby Titus in his little jumpy thing
Several people have been asking me about how my sweet grandson is doing and I’m so happy to say I have nothing but good news to report these days! He had a cardio check a few days ago and is now officially off all heart medications! What a miracle! Even though this is the fourth time this has happened in our family I am still so amazed and awed by God’s goodness and so very thankful for such a positive outcome. It’s an amazing and humbling thing to see a baby who was heading toward a very early death to suddenly turn into the picture of health with a long and happy life ahead of him. People may pity our family but I certainly don’t. I think we are the luckiest family ever that God has intervened all four times and allowed us to keep our littlest loves and watch them grow and thrive. I will forever be thankful to Him.
So baby Titus is now 3 1/2 months old, with the most beautful dark skin (not pasty like me, yay!) and a smile that lights up the room. His personality is showing more and more. With parents like Chris & Megan I’m sure he will end up with TONS of personality and charm, though he will probably get in a lot of trouble when he goes to school. I’m hoping he embarasses his Dad at least half as much as his Dad has embarassed me. Then again since Chris doesn’t get embarassed maybe this won’t work out like I had hoped. Titus has been gaining weight and has cute little fat wrists and legs and a double chin now. We are all head over heels in love with this adorable little guy.
The fundraiser went really well I thought, especially since it was a rainy day and the fair was going on. It ended up raising over $4,000 which I know they will put to good use.
In other news, my late Summer has been kind of exciting with my close encounter with a bear in Valdez and being attacked by my sister’s mastiff. Never a dull moment. It’s so nice to not be under constant stress and worry. I’m hoping my hair will stop falling out soon before I go bald. Stress does weird things to a person, though I’m not sure if my hair is falling out as a result of stress or because I used to refer to my old principal and “That Bald Lady” and I’m being paid back for it. I am so looking forward to all the good times ahead for us. Going through the bad times makes the good times all that much sweeter…
Look everyone!! Mammie’s precious lamb is out of the hospital!! I can’t thank everyone enough for all the prayers made on his behalf. He looks so much better to me even though he has just been through this terrible ordeal. I can’t wait to hold him in my arms again. What a wonderful wonderful blessing God has given our family.
I talked to Megan and unfortunately the air conditioning has gone out on my brother’s guest apartment. Hopefully they can get that fixed soon. They are all Alaskans now and not used to the Texas heat anymore. We think 70 is hot up here, harhar.
This morning at 7:30 my sister called me because she heard a promo for the fundraiser on the radio! We’re very excited. You gotta love living in a small town. I can’t imagine ever getting the DJ’s to talk about a fundraiser in DFW. Colton & I plastered 5 of the university buildings with flyers this evening. Still have much more to go. My brother-in-law John’s sister has been helping my sister with trying to get donations from local businesses for the silent auction we’re having at the fundraiser. She cracked me up yesterday because she not only hit up the tattoo & body piercing parlor but also the “adult” store, harhar. I can only imagine what they will donate. My good friend Dylan said add a bottle of wine and she’d bid on it – HA! She’s a riot!
We also got a new little dog yesterday. She is a Queensland Blue Heeler, much smaller than our sweet Bungee we used to have and not as blue. Korn Dog doesn’t know what to think of her. My daughter decided Korn Dog was socially awkward & Tim said Korn Dog was stalking her. I think we’re going to call her Niblet.
Thanks again everyone! It means so much to have such a wonderful supportive group of friends!!
So guess what? Baby Titus gets out of the ICU today!! So happy about this, especially after he had a little set-back yesterday with his lungs. Apparently they weren’t expanding all the way and had stuff in them causing his sats to drop. They were giving him percussion treatments and high-pressure oxygen to try to expand them back out. Tim and I were really scared last night. We were afraid he was getting pneumonia but if they are moving him out of ICU he must be better now. Baby Titus is just an awesome little fighter. He is a mini warrior.
In other news, my sister has been organizing a fundraiser to help pay for the medical costs. It was $34,000 just to fly him to Houston instead of Seattle. But Seattle’s numbers were terrible and you can’t put a price on your baby’s life. Anyway, one of the DJ’s here in Fairbanks saw one of her flyers and called her and said they would advertise it on the radio plus get more sponsors to donate stuff for the auction. I am so thrilled. 🙂 I don’t want Chris & Megan to end up like Tim & I with crappy credit because of all the medical bills. Three heart babies cost a whole lot of money. But that’s ok. I wouldn’t trade any of them, they are my sunshine. I’ll update again in a couple of days!
So Baby Titus got both chest drains removed and is now off the ventilator, yay! :-) They may take him off dialysis tomorrow so yay again! Dad says he’s really been smacking on that binky so he might even get some pedialyte tonight. He also said Titus is mad about the whole situation and has been shaking his one little fist that isn’t strapped down and scowling at everybody, harhar. Our little heart babies are such fighters. He looks so much better in this picture than the one from Monday. I am a very happy Mammie! Thank you all so much for your continued prayers. Hopefully I will update again soon with more good news.