Throughout any pregnancy all expectant mothers have some kind of fear. I know I had few with each of mine. My first two pregnancies were singletons. Easy pregnancies. Little to no bumps in the road. No pregnancy “scares”. Healthy full-term deliveries. Our first was an emergency c-section, only because our sweet little girl decided that she wanted to send her foot and cord out first, which apparently is frowned upon. And I had a quick hospital stay for the flu during my second – which was totally unrelated to my pregnancy.
Becoming pregnant with multiples brought on a whole new level of anxiety and fears throughout my pregnancy. Fortunately for me, even though I felt absolutely awful 95% of the time, my pregnancy progressed without any big issues.
Six weeks before my scheduled c-section with our twins we went to what was intended to be our last visit to our high-risk OB GYN. At that visit the ultrasound tech noticed that our little guy's bladder and kidney were quite a bit larger than they should be. We were hoping it was a fluke and that if we came back one more time they would be normal again. We tentatively scheduled a c-section with our specialist even though we were hoping to deliver at our local medical center.
Two weeks later, at a follow-up to re-check the kidney and bladder, we found out his condition had gotten worse instead of better. The results were Hydronephrosis and Urinary Reflux.
“Hydronephrosis is the swelling of a kidney due to a build-up of urine. It happens when urine cannot drain out from the kidney to the bladder from a blockage or obstruction. Hydronephrosis can occur in one or both kidneys.”
The next two and a half weeks waiting for our delivery date was torture. It was decided due to the nature of his condition and the possibility of kidney failure at birth that we needed to deliver at a facility where we had access to a neo-natal facility if needed. After birth and a short NICU stay for monitoring we watched and waited to make sure that he was able to urinate on his own. That first wet diaper was the best diaper I’ve ever changed. It’s ironic how with our first son I prayed he wouldn’t pee on me when I changed him and with this baby I actually hoped he would pee when I took his diaper off just so I knew his kidney was still working.
Since birth we have had a flurry of appointments and testing followed by more appointments and testing and antibiotics and more appointments. My husband and I have been blessed to have healthy children. I have watched families in our areas with children the same age as ours battle cancer and severe illnesses over the years and admired their courage and strength. Now I know firsthand that the strength and grace they have shown is often the surface hiding a multitude of anxieties and fears below it.
Two things I hate more than anything else in this world is seeing my child in pain and being a part of the reason they are in pain. Testing for a chronic kidney condition is unpleasant. Not being able to explain to a baby why you are holding him down and not letting him move while he cries and you cry with him is a crushing experience. The older he gets the harder it gets. The older he gets the more scared I get that it’s getting worse and we don’t know it.
On a daily basis I question myself. I question – did I cause this? I ask myself- is it my fault? Then I go into panic mode – is his kidney still healthy, is it dying? Was he fussy because he has a UTI? Why hasn’t he had any wet diapers in nine hours? Is his kidney working? Is he running a fever?
Having a baby with a chronic condition when you have twins means you have another baby to worry about, too. You have one baby that is happy and carefree and healthy. You love that baby. You don’t stress over that baby as much. But, then, at times do you overlook illness in that baby because you don’t worry that she’s sick?
In April of this year our healthy twin got a cold. Very simple cold, nothing big. She was eventually diagnosed with viral pneumonia. I knew she would be okay, but my thoughts instantly switched to our kidney baby. I was watching to make sure he didn’t get sick and worrying that if he needed another antibiotic it would counteract with the one he was taking daily already. In the meantime his healthy sister got worse and worse. She ended up with full-blown RSV and in the hospital. Wait?! What?? I have been so worried about keeping her brother healthy and out of the hospital with his kidney I didn’t even think about her getting sick.
The whole time she was hospitalized I worried that her brother would get sick and it would be worse. While I was holding her down for IV’s and breathing treatments in the back of my mind I couldn’t stop worrying that if my kidney baby got sick it would be worse for him. Then I would snap back and be disappointed in myself for not giving my full attention to my other child that was in there here and now.
Many times I find myself putting my other children on the back burner because I’m too worried that my child with a kidney condition may need my attention. I unconsciously find myself gravitating toward him more frequently and tending to him longer, almost to comfort myself more than him. I often tend to brush off any small ailments in my healthy children more quickly than our twin with a kidney issue. I find myself searching endlessly for answers to any small red flag that goes up to ensure that he’s safe.
I still go to him first if both babies are fussing. I hold him a little longer and let my healthy twin wait. Do I ignore her? No. Do I fail to acknowledge her? Absolutely not. But, do I worry about her brother more? Yes. And this makes me sad. When I think about the tears and the worry that I spend on him when he is fussy or feverish or going to our long, frequent check-ups I pray that my other healthy children, especially his twin sister, don’t feel that I do not have the same love and concern for their well-being.
Carrie English is a mother of four who lives North Central Pennsylvania along with her husband, Jason. Her children range from age 12 to her one year old toddler twins. She is a full-time working professional, sleep deprived lover of coffee, hugs, and her family. She credits her strength to her amazing family and her faith.
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