The next few weeks we have some very important doctors appointments coming up. Unfortunately.
Back when Madelynn had a UTI in September of 2011, we were suppose to go to Children's Hospital to make sure she didn't have reflux of the ureter (click link about for the info on it), but after a phone consultation with the urologist, he decided not to see her unless she got another one. I felt okay with this because we had just been at the beach where she was in a wet diaper, in pool water for the first time (which can have lots of germs) and she is a girl, which girls are more prone to having UTI's, even as infants.
Well, at our last visit with our pediatrician, she asked if we could consider Madelynn getting screened because she had looked back at her ER visit and really felt that she wanted Madelynn checked out. Of course I followed my doctors suggestions. But, my poor baby girl. By the way, she has had no other issues with UTI's or low-grade fevers, which can be a sign too.
So I made an appointment with Children's Imaging Center and it's for Thursday afternoon. I have been seriously dreading this appointment and am having a lot of anxiety over it. It's so hard when you know you are taking you sweet, happy child for something that is going to cause her a lot of pain and discomfort. I seriously get a pit in my stomach every time I think about this. I rather live without my right arm for the rest of my life instead of have any of my babies experience the least bit of pain!
Basically she will have a abdominal/renal sonogram, followed by a Fluoroscopic voiding cystourethrogram (VCUG), where they put in a catheter and enter dye into the bladder and see how far it goes, if at all, to the kidneys. There are different stages of the reflux but we are hoping she has none.
I asked my mom to go with me (Tim will be watching the other girls) and I rather him come to the actual follow-up appointment to meet with the doctor instead. I know Madelynn will need her Momma and so I need mine too! I hope I don't get too emotional. I just hate causing pain to my baby and when she had the catheter done in the ER, I about passed out! There will also be a "patient-lets-make-this-the-best-and-easiest-we-possibly-can" person to help out with favorite videos, toys and snacks while the procedure is going on. I'll be loading up my bag with all her favorite things too!
I'm sure we won't get any answers at the imagining center before meeting with the doctor, but if so I will update everyone.
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Also, Natalee has had no issues for the past year regarding her complications with NEC and bowel surgery, but since she is still on the small side for her age, like 1% on the normal growth chart, our pediatrician would also like her to be seen by a GI doctor at Children's Hospital. Her appointment is in the middle of April. It wasn't a too urgent of an issue, so this was the first available without having to travel into DC. And if I can avoid that, I will.
Natalee will most likely have some labs done to rule out any issues like celiac's disease and other nutrient-robbing diseases. The part of her bowel that was removed was a very key area in nutrient absorbing, apparently, so we just want to make sure that everything is working properly. She is doing great though on her Pedisure drinks and has gained more weight on them than ever before on just formula. She is completely proportionate and does not have that "sick" look that I have seen in other kids with celiacs.
If anything shows in her blood work, we will go from there. I really do not think there will be anything but the reassurance in the blood work will be comforting, and at least not too painful!
.............................
To be completely honest, I am really glad to have both my babies checked out. I would HATE for something to be wrong and have know I could have done something about it and didn't. I would never let myself live that down. But the anxiety is killing me. I wish it was me needing to have things done and not my sweet little babies. Just thinking about them being scared and not understanding what is going on tears me up to pieces. I can't stop thinking about it and it's driving me nuts! How do you handle these types of situations? I think I have anxiety over stuff that hurts them so much more because of the NICU. I just never want to see them hooked up to things, go through things that hurt them or anything else remotely close. I seriously have issues, I know. I just don't know how to handle it because instantly I am brought back to my daughter's bedside as she lay there almost dying or leaving my girls each night as I let others care for them when it should have been ME (read this for how I got them to FINALLY sleep through the night after 11.5 months of dealing with these emotions)! I hate this. I hate that it eats at me. I need to let it go and just when I think it has, and I am healing, things like this come up and I feel the anxiety creep back in. It just eats at me that they would ever have to experience pain that I can't fix for them. I know it may sound stupid to some because they are going to scrap their knees and hit their heads, and have their hearts broken by boys but it's more than that. It's the bigger things, the things I can't control. I know it's all for their best interest, it still just hurts my heart to ever see them in pain, scared or no sure of whats going on.
I thank you for all your prayers for my sweet girls and will update when we know anything.
Back when Madelynn had a UTI in September of 2011, we were suppose to go to Children's Hospital to make sure she didn't have reflux of the ureter (click link about for the info on it), but after a phone consultation with the urologist, he decided not to see her unless she got another one. I felt okay with this because we had just been at the beach where she was in a wet diaper, in pool water for the first time (which can have lots of germs) and she is a girl, which girls are more prone to having UTI's, even as infants.
Well, at our last visit with our pediatrician, she asked if we could consider Madelynn getting screened because she had looked back at her ER visit and really felt that she wanted Madelynn checked out. Of course I followed my doctors suggestions. But, my poor baby girl. By the way, she has had no other issues with UTI's or low-grade fevers, which can be a sign too.
So I made an appointment with Children's Imaging Center and it's for Thursday afternoon. I have been seriously dreading this appointment and am having a lot of anxiety over it. It's so hard when you know you are taking you sweet, happy child for something that is going to cause her a lot of pain and discomfort. I seriously get a pit in my stomach every time I think about this. I rather live without my right arm for the rest of my life instead of have any of my babies experience the least bit of pain!
Basically she will have a abdominal/renal sonogram, followed by a Fluoroscopic voiding cystourethrogram (VCUG), where they put in a catheter and enter dye into the bladder and see how far it goes, if at all, to the kidneys. There are different stages of the reflux but we are hoping she has none.
I asked my mom to go with me (Tim will be watching the other girls) and I rather him come to the actual follow-up appointment to meet with the doctor instead. I know Madelynn will need her Momma and so I need mine too! I hope I don't get too emotional. I just hate causing pain to my baby and when she had the catheter done in the ER, I about passed out! There will also be a "patient-lets-make-this-the-best-and-easiest-we-possibly-can" person to help out with favorite videos, toys and snacks while the procedure is going on. I'll be loading up my bag with all her favorite things too!
I'm sure we won't get any answers at the imagining center before meeting with the doctor, but if so I will update everyone.
....................
Also, Natalee has had no issues for the past year regarding her complications with NEC and bowel surgery, but since she is still on the small side for her age, like 1% on the normal growth chart, our pediatrician would also like her to be seen by a GI doctor at Children's Hospital. Her appointment is in the middle of April. It wasn't a too urgent of an issue, so this was the first available without having to travel into DC. And if I can avoid that, I will.
Natalee will most likely have some labs done to rule out any issues like celiac's disease and other nutrient-robbing diseases. The part of her bowel that was removed was a very key area in nutrient absorbing, apparently, so we just want to make sure that everything is working properly. She is doing great though on her Pedisure drinks and has gained more weight on them than ever before on just formula. She is completely proportionate and does not have that "sick" look that I have seen in other kids with celiacs.
If anything shows in her blood work, we will go from there. I really do not think there will be anything but the reassurance in the blood work will be comforting, and at least not too painful!
.............................
To be completely honest, I am really glad to have both my babies checked out. I would HATE for something to be wrong and have know I could have done something about it and didn't. I would never let myself live that down. But the anxiety is killing me. I wish it was me needing to have things done and not my sweet little babies. Just thinking about them being scared and not understanding what is going on tears me up to pieces. I can't stop thinking about it and it's driving me nuts! How do you handle these types of situations? I think I have anxiety over stuff that hurts them so much more because of the NICU. I just never want to see them hooked up to things, go through things that hurt them or anything else remotely close. I seriously have issues, I know. I just don't know how to handle it because instantly I am brought back to my daughter's bedside as she lay there almost dying or leaving my girls each night as I let others care for them when it should have been ME (read this for how I got them to FINALLY sleep through the night after 11.5 months of dealing with these emotions)! I hate this. I hate that it eats at me. I need to let it go and just when I think it has, and I am healing, things like this come up and I feel the anxiety creep back in. It just eats at me that they would ever have to experience pain that I can't fix for them. I know it may sound stupid to some because they are going to scrap their knees and hit their heads, and have their hearts broken by boys but it's more than that. It's the bigger things, the things I can't control. I know it's all for their best interest, it still just hurts my heart to ever see them in pain, scared or no sure of whats going on.
I thank you for all your prayers for my sweet girls and will update when we know anything.
Will certainly pray for your babies!!
ReplyDeleteI will be praying for you and your girls!
ReplyDeleteWill certainly say big prayers for your girls and for you! So glad your mom is able to go with you.
ReplyDeletewe will definitely be praying! And while the tests on the little ones may be painful and/or uncomfortable, remember that it's less painful now than if something worse were to pop up later due to an oversight by the doctor. and eventually it will be over and those sweet little smiles will be right back where they belong.
ReplyDeleteYes, will be praying Holly! I have had two friends with daughters with the ureter reflux, but both have grown out of it! Hopefully the same will be the case for Madelynn!
ReplyDeleteIt's definitely hard and you are such a strong momma! And you're right, at least you will know if there is a problem or not. I'll pray for you all!
ReplyDeleteI'm so sorry Holly! My heart is breaking for you and them, just thinking about y'all having to go through that stuff, also gives me knots in my stomach. I know we can't avoid our children ever experiencing pain but there's just something that really messes with you when you are the one bringing them to the pain! :( I will be praying for y'all.
ReplyDeleteUnfortunately, I've dealt with these issues with my kids as well.
ReplyDeleteCarter was diagnosed in utero with moderate hydronephrosis. He has had two VCUGs done (once at 3 months and once at 12 months). That is actually not too bad! It went pretty quickly and he tolerated it well.
As you know, Bennett was diagnosed with failure to thrive at 18 mons old. He was 0%tile on the growth chart and only 5th%tile on the Very Low Birth Weight Chart. He went months at a time where he would not gain at all even on calorie enrichment. It was very frustrating! We visited a GI doc who did the nutrition panel that Nat will likely have. Childrens generally pulls their own labs, and their techs are AH-MAZING (Bennett has very small veins that run in at an angle, so he is very hard to tap, but Chidrens' techs always seem to get him the first stick!). However, if they want to send you to an off site lab such as a Quest or LabCorp, call and schedule an appointment and request someone who is well experienced with babies. We have had awful experiences with Bennett getting lab work at those places. Only allow them one stick. If they don't get it, come back another time.
As you also know, I battled depression and PTSD pretty severely for the first two years of Bennett's life. So I can't say that I really "handled" all of it particularly well. Getting treatment helped ;) I leaned heavily on my support people and my faith. When I started to get really down about why MY poor baby had to go through all this crap, I would snap out of it by reminding myself that his survival given his 6% odds of survival was miraculous and rephrasing how BLESSED we were that he was able to survive and fight this battle. He is about to turn 4, and while these past 4 years have been very rocky with multiple hospitalizations and many health issues, it has progressively gotten a little bit eaiser as time goes by. As preemies go, age 2 seems to be a almost universal "turning point" and a LOT of his issues starting getting better around that time.
Hang in there. Just remember God made YOU the mommy of these girls for a reason. He knew you were the perfect one to manage their issues and provide the best care for them!! You're doing great!!
Sending prayers up!!
ReplyDeleteI know it is so hard to see them in pain. I felt the same the day of Thatcher's relatively minor surgeries. Sending lots of prayers your way. They will be just fine, I know it!
ReplyDelete