Category Archives: Uncategorized

How I got Regina from Fully Tube Fed to Tube Free in 11 Days

I’m sure there is at least one person out there who is dying to know how I did this. No? Oh, well. I’m going to write this anyway. Because it’s what I do. It’s what I live for. To help poor, unfortunate merfolk, like yourself!

As I outlined in this post, due to a series of unfortunate events, Regina ended up being fully tube fed and retching and throwing up if any sort of nipple came near her mouth. Everyone assured me that this would magically stop after she had her open heart surgery. So, I decided to white knuckle it with her tube feeds until then. read more

Dear Mama with a Prenatal Diagnosis of Down syndrome,

First of all, let me say something to you that probably no one has said to you in light of your recent news: Congratulations!! I know that word may be sounding jarring to you now, but hear me out.

I know how you feel right now. I have been there myself. You are scared, and all of the medical professionals saying things like, “I want you to make an informed decision,” and “I want you to know your options,” which you know are both code phrases for, “You can have an abortion” which really isn’t making this revelation any less scary or emotionally charged. Ask them if they know personally anyone with Down syndrome. If the answer is no, then that may be telling. read more

One Year

We're coming up on the one year anniversary of that fateful day when we were given Regina's heart defect and probably Down syndrome diagnosis. The one year anniversary of the toughest year of my life, with the lowest lows and the highest highs. Scott and I have been through the refining fire, but we most certainly haven't come out the other side yet.

We have been privileged to enjoy Regina's company for seven months now. She is a little firecracker. She doesn't care that she just had open heart surgery a mere two and a half months ago and low muscle tone, she is rolling over both ways and holding her head up high and steady while on her belly anyway. She is very close to sitting independently. Every one of these milestones for this baby in particular isn't mundane, it is a marvel. She doesn't make consonant sounds yet, but she is trying and she coos up a storm. She loves snuggling and hates afternoon naps. I love the way she gets so excited when she sees me and starts kicking her feet and reaching for me with her roly poly little arms, all the while giving me the most dazzling smile that lights up her whole face. She loves giggling with her older sisters and grabbing their hair when it tickles her face. read more

Follow the Yellow Brick Road to Recovery: Week 1

Wait, I thought she was done with these open heart surgery posts. 

Nooooope!

So when I left you, Regina’s heart repair had been declared a success. Scott and I went out for dinner and drinks with my sister and brother-in-law to celebrate. In my mind, the toughest part of all this was behind us now. The rest would be smooth sailing into more typical baby experiences. I’m not sure if I’ve ever been more wrong in an assumption in my whole life.

We got all checked in and settled into our hotel and after checking on Regina one last time in the CICU (still out cold), we went to the hotel to get our first good night’s sleep in a while. We awoke early the next morning feeling refreshed and walked straight to the hospital. Regina was still on the ventilator, and the CICU nurse directed our attention to the ventilator monitor screen. The waves on the screen were green, but were occasionally replaced by little pink wave lines. The pink ones were breaths Reggie was taking on her own, she told us. She was still asleep, but Scott and I talked to her as an experiment to see if we saw more pink on the monitor. The experiment was inconclusive. read more

Open Heart Surgery Telenovela, Part II

If you missed Part I, you may peruse it here

We arrived back in the CSU, empty handed and in a daze. We packed up our bags since Regina would go straight to the CICU after surgery and since we couldn’t stay with her we would have to check into our hotel. I went to the lactation room to pump while Scott went to the surgical waiting room with his laptop to attempt to get some work done. When I finished pumping, I headed to the surgical waiting room myself. Now, some of the best advice a fellow heart mama, Blair, gave me was to have a good support system of people we love and trust in the waiting room with us. The surgery was going to be 6-8 hours, and that is an agonizing length of time to wait. Reggie’s godmother, Sarawas there with my sweet goddaughter baby Scottie. My parents managed to sneak away from work and from the girls and stay with us for a while. My sister, Rachel, and my brother-in-law, Thomas, also managed to make it. One of my best friends, Christy, stopped by with her mom, who is also good friends with my mom. As is their wont, they came toting lots of goodies for me and Reggie. They also came toting Christy’s adorable baby, Mary. My friend, Leslie, called me the day before and told me she felt called to come all the way from Texas, but wanted to make sure that was alright with me. I told her to come on. read more

Open Heart Surgery Telenovela, Part I

I was hoping to write this while it was more crisp in my mind, but after six weeks of ER visits, hospitalizations, and having to be constantly on the ready to catch vomit and stop her from choking on it, here we are. Six weeks post op and I finally have a chance to sit down and catch my breath. And I thought heart failure was brutal! It was nothing compared to post open heart surgery, my friends. But I seem to be starting this post in medias res. Let us rewind a bit, shall we?

As you might have seen in my previous post, Regina was scheduled to have her open heart surgery on May 26th. As I predicted, we didn’t make it until that date. The week of May 8th, she started deteriorating rapidly. She was constantly throwing up, she had a distinct pallor, she was struggling to breathe, and when we went to her cardiologist appointment on Friday, her oxygen saturations were low and she had gained a pound. My mom and I sat in the exam room waiting for the cardiologist to come talk to us, looking at my pitiful child. I knew that the news was not going to be good. Dr. McKane, our cardiologist, came in shaking her head and sighing. “Oh, Regina, Regina,” she said. “Her oxygen saturations are very low. She gained a pound, but judging from her breathing, I’m guessing that extra pound is all fluid in her lungs. I have maxed her out on diuretics that you can safely give her at home. I’m really sorry, but I’m recommending that we admit her to the hospital this weekend so that they can try and dry out her lungs with IV diuretics while monitoring her electrolytes and go ahead and schedule her surgery for first thing Monday morning. I know that is not what you were picturing for your Mother’s Day weekend. I’m so sorry!” read more

The Dates that Leave Imprints in our Minds

August 26th, 2016. The day that we had our 20 week scan and the perinatologist broke the news to us that something was seriously wrong with our baby’s heart.

January 20, 2017. The day that Regina was finally discharged from the NICU, after 24 long days. She was not feeding by mouth at all.

Last Friday, the scheduler called from the children’s hospital to schedule Regina’s open heart surgery. We scheduled it for May 26, but that could change based on whether an emergency or a heart transplant pops up, or (God forbid) if Regina gets sick. I have no doubt in my mind that whatever date her open heart surgery ends up being, it will be a date etched in my mind forever. read more

NICU Survival Checklist

Disclaimer: This post contains Amazon Affiliate links, but I would recommend them anyway even if it didn’t. It just means Amazon will kick a few pennies on the dollar my way if you end up buying anything through the links. I would use all proceeds for Reggie’s medical expenses, Scout’s honor. 

Now, I realize that this is a very niche post, as very few parents have the advantage as we did of being reasonably certain ahead of time that our baby would end up in the NICU. But I was frantically scouring the Internet for NICU advice posts, and let me tell you, I found precious few. So, if I can help just one person out a little bit with this post, I’ll be happy. read more

Feeding Regina

To give you a bit of a brief history, when Regina was born, they immediately shoved an NG tube down her throat because her blood sugars were dangerously low and they claimed she wouldn’t take a bottle (I was still unconscious and being sewed back up post C section). While she was in the NICU, she would take a soothie paci fine, and actually breastfed pretty well. She would refuse to nurse past 5 or 10 minutes, but she nursed. The NICU nurses would give her bottles, but she wouldn’t take more than 30 mLs. A full feed was 60. So, we came home with the NG tube and a feeding pump. read more

HOME. And My Musings on Down syndrome

It was a day just like any other in the NICU, when the neonatologist turned to me during rounds and asked, “So do you want to take her home today?” Um, YES.

I called Scott in a panic, telling him Reggie was finally coming home TODAY, and he needed to come to the hospital so that we can pack up all of her stuff. I had to rush out to a special compounding pharmacy to get her heart medication filled, and when I returned the nurses had everything ready for her to bust out of the joint.

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