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.

After 24 days in the NICU, we were finally going home.

Traditionally, after the mothers are discharged from Labor and Delivery, our hospital will wheel you out in a special wheelchair with your new baby in your lap. Everyone congratulates you and oohs and ahhs at the baby as the nurse parades you past to where the car is waiting to take you and your baby home. When I was discharged this time around, the nurse wheeled me and my empty arms out as I held back tears and people looked at me quizzically. (Probably because I looked so distressed.)

When a baby is discharged from the NICU, the nurse pushes the baby in her car seat perched on top of her isolette down to the waiting car. Regina’s nurse that day was a very dignified and reserved lady. I didn’t even bother to hold back the tears as she pushed Reggie down to Scott and our waiting car. While Scott was buckling her car seat into the car, I wept openly and hugged our poor dignified nurse, who seemed incredibly embarrassed by such a shameless display of emotion. I didn’t care, and just thanked her brokenly over and over again. Our baby was coming home. Home to her mama, daddy, and four doting sisters. I was no longer a divided NICU mama. I was just a mama to five beautiful girls.

Ok, so this all happened three weeks ago. I know, bad blogger. It has been quite the adjustment. She is on a feeding tube, which means she is plugged into a machine to eat four times a day and all night. She has several doctors’ appointments all week, which is a nightmare with her feeding tube. I have to juggle trying to transport all of her feeding machinery, plus a cooler full of enough milk for however long we will  be gone (which could be hours and hours), plus all the regular stuff like my purse and the diaper bag. Oh yeah, and the baby too. Something stressful usually happens when we are out, like her feeding tube getting clogged and me having no way to feed her or trying to feed her in the car and having her feeding bag fall down and praise the Lord it fell in her lap instead of onto the floor, which would have forcefully yanked her NG tube right out of her nose. She also sleeps all day (when I cannot) and cries every night from 11 pm until 2 am. Then, I get about two hours of sleep before I have to refill her feeding bag at 4 am and give her her heart medication, and then I usually have to wake up to pump two hours after that. So, I basically look like an extra from Night of the Living Dead. It’s a good thing she’s so cute.

She still won’t eat pretty much anything by mouth. She will have one good day where she will nurse a grand total of ten minutes, but then totally regresses and will refuse to take anything at all by mouth the next few days. This is my main frustration. I find myself despairing and wondering if she will ever eat orally at all. I try to offer it all up and hope and pray for a miracle.

Anyway, I wanted to share some thoughts on her Down syndrome diagnosis and what it means for ye olde humble blog. I always intended the purpose of this blog to be two-fold: to chronicle our family life for me and my posterity, and to encourage readers out there who might find themselves in similar situations. I do not intend for this to become solely a Down syndrome or special needs blog. I realize the focus of this blog might be that way for a while since Regina needs so much right now, but I still want to include other tidbits of our life, and the other four children, of course.

Down syndrome can be such a scary diagnosis, and I definitely want this blog to be a source of encouragement and support for those parents struggling with a Ds diagnosis for their child. Please don’t hesitate to reach out to me if you ever need that. However, there are plenty of blogs that already do so much for Down syndrome awareness and advocacy, and do it a lot better than I ever could, that I don’t feel the need to let that be the main focus of this blog. Those blogs do an excellent job of dispelling the ignorance and fear surrounding Down syndrome. That is the first step toward acceptance in a society that has such a long way to go in that area. I am very new on this journey; therefore, I plan on sharing about Regina merely as another one of my daughters before I try to wade into any advocacy. Perhaps as I learn more about it, I will feel more comfortable using this platform, as small as it may be, to help advocate for this community that I am honored to have become a part of.

Because really, like all babies with Down syndrome, she’s not a “Down’s baby” to be defined and identified by her diagnosis. First and foremost, she’s just a baby. She’s my baby. Made in God’s image. Whether your babies have special needs, are typical, “healthy,” or not, you have to take your children as God sends them to you, and not how you pictured them to be. “And whoever welcomes one such child in my name welcomes me.” Matthew 18:5. And while this is a very different journey from our experiences with our other babies, I love her just the same.

Her little heart is the same, and we are managing it with diuretics while we try to get her to grow as much as possible with the feeding tube. So far, her lungs aren’t too wet and she isn’t struggling to breathe too much, and she is gaining well. I really can’t ask for much more short of a miraculous healing of her heart and feeding (please, Lord!) But, I keep my patience and submission to the Divine Will. Well, I’m trying to, at least. As difficult as this all is, I want at the end of my life to be able to say, “I have fought the good fight, I have finished the race, I have kept the faith.” 2 Timothy 4:7.

I love you, Regina.

12 thoughts on “HOME. And My Musings on Down syndrome

  1. Justine Rauch

    This is incredibly beautiful. I can’t imagine the thoughts and feelings that must have been flooding through you on the day she was finally discharges, but I can definitely see myself sobbing to the nearest nurse as well. 🙂

    No matter what direction your blog does end up taking (and for whatever season), I’ll happily keep following from my corner of the internet! It’s a joy to keep up with your family and I am so happy that all of you are finally together. I’m praying for you all in this big transition!

    1. sylvia.hobgood@gmail.com Post author

      Thank you, Justine! Congratulations again on your sweet newest one! He is beautiful

  2. corrie

    I was just saying to someone last night that our little girl who has an intellectual disability is the most precious and loved member of our family and the one we worry about the most. It’s a blessing to have her in our family and I do wish people knew that about all little ones with special needs. I can’t imagine life without her, you have so many wonderful things ahead of you despite the drs and early intervention and assessments. Now at 6 life is good, still full of worry but she has great health, a beautiful smile and laugh and her favourite thing to do is turn her poppy watch which says hug time and hug the person nearest to her. Regina is precious and perfect and you’re lucky to have her xxxx

    1. sylvia.hobgood@gmail.com Post author

      So true. We just love our children because they are, not because of their health or abilities.

  3. Martha

    I have never commented but I wanted you to know you have been on our prayers. We have 5 boys under 7 with number 6 due next month. Two of my kids have metabolic disorders and have been fed by feeding tube for a long time. Our youngest is 15m and 100% g-tube fed. Anyway, hang in there it DOES get easier. You get accustomed to scheduling so many appointments (we have had 14 specialists at once and live 3 hours from the children’s hospital), Ng tubes are great with babies that can’t pull them out yet and they are super easy to put back in- plus your baby gets fed (I love my kiddos’ feeding tubes, there is no other way they would be here with us), and you really do learn to appreciate every little milestone. Our youngest has been in ICU and the hospital 4 times the last 4 weeks and we had a huge celebration when he woke up at home and was able to sit up. I can’t imagine celebrating that before my “sick” kids were born but I have learned that even the smallest thing is such a huge joy!

    1. sylvia.hobgood@gmail.com Post author

      Thank you so much for your wisdom. You are so right, I have to meet her where she is and learn to appreciate all the milestones that much more instead of trying to force my own expectations on her.

  4. Meredith

    So glad she’s home!!! She is beautiful and looking very plump for a heart baby so her meds must be doing the trick! Prayers and hugs!

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