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When I was pregnant with Rex, my OB was pushing me hard to take the blood test to see if there was anything genetically “wrong” with him. “You have an increased chance of having another child with Down syndrome,” he kept telling me in an ominous tone. I chuckled and said, “You can’t scare me with that, I already have a child with Down syndrome!” 🙄😂 #reggiegram 📸 cred: @lindanicholsphotographyYou all will be pleased to know I bought a nursing dress that actually fits my ahem, enhanced figure. Don’t ask me to button that coat, though. 😳 Also, go go boots just for @christyisinger 👢👢#bassmass #mysundaybestI hear it is #feedingtubeawarenessweek . This is called an NG (nasogastric) tube. Many heart babies have trouble feeding. Regina’s bum ticker would cause her lungs to fill with fluid which in turn would make her breathing very labored. Suck swallow breathe like you are running a marathon was just a bridge too far for her. I had to measure out the length of tube from her nose to her ear to her belly. Then, I would thread the tube through her nose and down into her stomach. I would have to attach a syringe filled with air to the end of her tube and push it down quickly while listening to her stomach with a stethoscope to make sure I heard the “pop!” of air going to her belly. Otherwise, it might be in her lungs and I would have to take it out and rethread it because milk pouring in the lungs would, of course, drown her. The tube would make her puke up practically every feed, but somehow she still gained weight. We did this for nine months. She became feeding tube dependent after her open heart surgery and no one knew how to get her to eat. So, after months of desperation, prayer, and research, I weaned her myself. (That’s a long story 😳) She now eats more than her older sisters. 😂 I am glad the feeding tube was there to help her grow and be big enough for surgery (the bigger they are, the better the outcome), but there needs to be a serious discussion in the medical community about a standard of care for feeding tube weaning. It is wonderful when it is medically necessary, but once the medical need is no longer there these kids deserve to eat! #reggiegramIt’s #chdawareness month, and it would be impossible for a February to go by without me mentioning heart defects, as Regina’s had such an enormous impact on our whole family. Heart failure is a complete nightmare. Regina couldn’t eat, puked constantly, breathed like she was running a marathon, and was extremely pale and constantly sleepy. In sum, she was dying. Swipe left to see the difference. Approximately 1 in 100 babies is diagnosed with a congenital heart defect (CHD). About half of all babies with Down syndrome are born with a CHD. Some of these defects can be repaired by open heart surgery like Regina’s, and some babies need heart transplants. All of us with heart warrior babies know a fellow heart warrior who has died from complications due to their CHD, whether it be personally or on this space. There were many times that I was certain we would lose Regina, but God was merciful, for reasons of His own. I absolutely believe all of your prayers are the reason she is still here today and thriving. Feel free to tag a heart warrior below or DM me and I will make sure to say a Hail Mary for each one of them, and humbly bring your intentions to St. Therese of the Little Flower, who (Therese) Regina is named after and who undeniably sent her shower of roses from Heaven our way. #rurowrerheregrex 📸 Cred: @lindanicholsphotographyMy beautiful sisters with us today! When I noticed from one end of the pew that Rosie all the way on the other end had tied her sash on her dress out in front instead of in the back, it took every ounce of self control I had to leave it alone and instead devote my attention to the Mass. I mean, if I let the small things like that defeat me, how would I fare with the big?! 😳😂😂 #BassMass #mysundaybestEveryone told me when I was pregnant with Rex, “just wait, there is something special about boys, they love their mamas.” And I rolled my eyes because how different could it be? I already love my girls to the moon and back, and I’m pretty sure they are fond of me. Well, surprise of all surprises, there IS something my boy. One night when he had a cold and was up all night, I felt so dead tired and defeated and while he was nursing for the umpteenth time that night he reached up and held my cheek in his tiny chubby hand. And I melted into a puddle right there into that little hand. It is hard to resist! What is it about them, you guys?! #rexgram (disclaimer: I love my girls just as much and promise not to get all weird about Rex, pinky swear 😉) 📸 cred: @lindanicholsphotography- Follow Tales from the Mommy Trenches on WordPress.com
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