Well today was another Dr. visit. I had to go back in for a second shot of steroids to help mature the babies lungs. Usually women who are going into preterm labor are given this but I guess they felt it wouldn't hurt lil Santino to have it as well. I can't stand shots but whatever will help out the lil guy. I'm 34 wks today and counting. I can't believe I only have 5 wks to go. That is if Santino decides to stay in that long. I hope I can make it. I slept horribly last night. I can no longer sleep on my side. I have to sleep propped up with a bunch of pillows. I have been getting unpleasant cramps/contractions if I lay on my side. I don't know if lil guy is hitting a nerve or what. It just sucks! I hate to complain though thinking of him all cramped in my uterus with no room to move. I said I wanted to share our story of Santino so I'm going to do my best to start from the beginning. I have a tendency to ramble so forgive me.
I had my 20 wk u/s on March 9th. John wasn't able to go with me because he got tied up with work. I was excited to see our growing baby but I was also a little nervous that the tech would find something wrong with him also. When I went in I let her know about Anthony's condition and to make sure this lil one was clear of that. I had a little bit of fear of recurrence but thought really what are the odds of it happening again. LUTO/PUV is like a 1:500 chance, like it would happen again! I had more fear of having a autistic or down syndrome child. So I left the u/s feeling okay. I had a couple of cute pictures of lil one. We didn't want to find out the sex so that wasn't known at the time. One of the pictures I had kind of bothered me because I could see the babies bladder and it looked a little large to me. I wasn't sure If I was just freaking myself out or there was something to be worried about. I found out soon. The next day when I went to pick up Anthony at school I rec'vd a call from the Dr's office. The NP said I have the results of your u/s. When do they call with results, unless it is not good?! She says well it looks like the baby has hydronephrosis(enlarged bladder), a enlarged kidney, and olygohydramnios (low amniotic fluid). So what your telling me is he has the same thing as what my son Anthony had? She says well sort of but potentially a lot worse. Great!!! So she says I will be seeing a perinatologist (maternal-fetal medicine Dr.) for a more thorough exam. End of conversation. I get Anthony quickly before I break down crying at my kids school. We walk to my friends apt since I had just dropped my car off to get a oil change. I remember just being in a daze and just thinking Why? why is this happening to us again? Anthony and I show up at my friend Martha's and I just have to finally let my tears out. I'm still not sure what everything I was just told means and I'm thinking how am I going to tell my husband. I know it is going to crush him. We had barely gotten over our miscarriage the year prior. Martha was very sweet trying to help me remain optimistic. She still is and reminds me how great our God is. I waited for John to get home before I told him and we both cried together and asked Why? We called the perinatologist and weren't able to get an appt until the following week. How could they torture us for that long? They didn't seem to think there was any urgency while we are dying inside. While we were waiting that long week we searched the internet like crazy. Of course everything out there on LUTO/PUV is scary and has a fatal diagnosis. John was also able to find some helpful info on inutero surgery. Going on the internet is a very dangerous thing for the emotions. I cried a lot that week and prayed! I'll have to continue another day with our visit to the perinatologist. That was a experience. I have orders from my hubby to put my feet up, watch a movie and eat some ice cream. I have a great husband!
Our baby boy diagnosed with Lower Urinary Tract Obstruction/Post Urethral Valve(LUTO/PUV) at 20 wks, He was not expected to live due to pulmonary hypoplasia and renal failure, He was born June 19, 2009 @ 34 wks , He has miraculously survived and has began dialysis. Began Peritoneal Dialysis on June 22, 2009 then to Hemodialysis on June 27, 2009, back to PD July 7, 2009
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ReplyDeleteHi, I'm Stephanie. Vayden's mom. I am so sorry to hear about your case, but at the same time glad that you have found me. You are in my prayers know that. I'd liike to speak with you in more detail, please email me at shortyswife84@yahoo.com I will give you my number so we can talk. God bless
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