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 Rylan's story. Bare with me, It may be lengthy.

My husband is in the military and this whole ordeal took place when he was in oklahoma.

Depending on whom you spoke to, I was either 36 weeks and 6 days..or 37 weeks and 2 days pregnant.
I had a less than impressive OB. She had been treating me for a UTI for 6 weeks + with no relief.
She had given me the same exact RX multiple times. I called her office November 1st.  I told them
I thought it had spread to my kidneys because I was having really bad back pain. They told me, they
would speak to her and call me back. An hour 1/2 later I got frustrated and called them back. The
same lady answered. She didn't skip a beat. "can you go to L&D today" ugh. So I took a shower and
drove myself since my mom stayed w/my 3 year old. I also didn't think it would be a big deal..just
monitored, tested and treated if necessary..routine. So I went there and for the most part that's what
happened. Until the nurse came in and said "okay we are just waiting on the dr to call and we'll
discharge you". A few minutes later I notice the babies heart beat dropped all the way to 60 out of
nowhere. She came running in messing with the monitor and moving the probe thing on my belly.
She said "wow the baby didn't like something, sorry we are going to have to monitor you for awhile".
a few minutes later she came back in, I had been having contractions. She said "I'm going to give you
a shot we call it turb. It will speed up your heart beat but it should help stop the contractions. If those
don't stop, you may be having your c-section today". They monitored me almost all day. The 2nd shot
of "turb" stopped the contractions. they had called my OB and she said she wasn't oncall and to call someone else (during office hours). My dr pissed me off. The oncall dr wanted to see me before
they discharged me. He came in and spent a lot of time with me. He checked me over, tested my urine and even made them go get me something to eat lol. He was so nice. He gave me 5 rx's. One to stop contractions, one to treat the UTI and one to counter act the yeast infection issue that antibiotics can give you. I had a yeast infection and didn't know it. He asked me if I had been irritated I said yes, but I thought it was from the UTI. And Yes, I had mentioned it to my Dr. He told me that I was considered (based on her chart) to be 36 weeks and 5 days. He said that IS considered premature. I had an appt with my OB the next day. He told me to go see her, she may take me off the turb rx. Because she doesn't tend to believe it stops contractions. He said if I keep having contractions to come back to him any night this week and he would do my c-section himself. He was oncall the entire week. I felt very comfortable with him.
Sure enough My dr took me off the turb...and EVERY rx but the one antibiotic ugh. Sure enough I started having contractions. She told me "the babies heart beat only dropped twice, you're not in labor..we will keep our november 16th c-section date".
So I go home and my sister takes my 3 year old for the evening. Sure enough, contractions start. She came back and noticed I was squinting and not talking. She started timing them. They were getting closer. I called L&D they told me if i was concerned to come in, so off we went.
The contractions were huge hills on the chart and they came regularly. So this wonderful oncall dr (the one i had seen the night before) came in, he was asking me questions about my previous c-section. how big the baby was. He told me he thought this one was about 6lbs. He asked me if I wanted to have the baby I told him yes, I felt something was wrong.
I texted my husband and told him we were having the baby. I was going to get the redcross stuff started so he could be home for the baby. He wouldn't be home when the baby was born obviously. But redcross can take time. So off I went. thank god my sister was there. It was 10 at night and here I was having a c-section. The baby was showing signs of stress and needed to come out.

The c-section wasn't bad other than the fact I puked. I hate when your bp drops and you feel sick like that. I kept asking if the baby was going to be ok. The anestesiologist kept saying he wasn't that early. In a few hours he'd be considered full term. It was just technically he was premature. That made me nervous. I kept asking her what they were doing..sometimes she'd tell me..sometimes she'd say she couldn't see lol. When they pulled him out I heard him cry. He sounded like a tiny little dog or something. The smallest little cry. They showed him to me and the first thing I noticed was he looked dark. Not dark like black..dark like bluish. I wanted him to cry more. The nurse made that happen. she was over with him cleaning him and what not. And he was pissed. I loved hearing him cry.
I swear I was in the O.R forever!  They put him on my chest moments later. he was sooo cute. so tiny. He weighed 6lbs 2 oz.
I was only in the hospital 3 days. DH got there the next day. On the 3rd day the pediatritian had told me that she heard a heart murmur that had gotten louder since the previous day and she wanted an echo to get it checked out. We were discharged after the echo. We were sitting at home enjoying our beautiful babies. (I have a 3 year old.) We got a phone call from dr hill (pedi) at 8 pm. I thought that was a little late. She told me the results came back and unfortunately we needed to go to childrens hospital to have additional testing. She thought the baby had a VSD (hole in the heart)  or TOF (tetrology of fallot), in both cases the baby has a hole in the heart. In TOF its a combination of 4 things, 1 thing being the hole in the heart. which always requires surgery. A Stint/patch in a valve and closeure of the hole. Oh it was the worst day of my life. I immediately bawled my eyes out. I hadn't even been worried that there was a thing wrong with him. That phone call ruined everything.
I cried and cried. My husband acted like everything was going to be fine. It was no big deal..etc.
My cousin has tetrology along with other issues ( I didnt know this at the time that she had other underlying issues that worsened her condition) so I immediately thought it was just what she had and we were basically in for some heart break.

We went to the cardiologist, it was confirmed that it was TOF. now we have to have a surgery at 3-6 months of age. He is almost a month old. He was born on november 2nd. I have learned a lot about tetrology. The mortality rate is very low. drs do this left and right. Tetrology is one of the 10 most common heart defects, yet they call it rare? ugh.

My husband is now getting out of the military not just because of this but because he's medically discharging. His injuries aren't healing right/fast enough and with everything going on we need him around.  I hope things get better. He is a beautiful baby. Its hard to believe anythings wrong with him.

We've only been to 1 cardiologist appt. The next one is the 22nd. We will go monthly. Unless anything happens, which the cardiologist doesn't expect to. he'll have his surgery 3-6 months. I am considering getting a counseler now, just to help me prepare and cope with the surgery. Handing over any baby to a surgeon knowing hes having his chest cut open is enough to make a parent post up in their house and never come home. I know it's a part of my mind coping, but at times i have "stupid thoughts". Not suicidal but more or less when you see ppl having perfectly healthy kids who are doing drugs, acting stupid..it's enough to piss you off. I also have had WHY in my head ever since I heard "open heart surgery".

I would never wish this on anyone but in another aspect I am glad to have my aunt. She has gone through this. Her daughter, is also my cousin and friend..but has tetrology. So I have my aunt to look to for advice.

"Parents of kids with CHD (congenital heart defects) are called heart moms and dad's. Why? because they deserve it! They are the first to realize a CHD does not only break one heart, it breaks 3."

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Comments:

Lb128f
Nov. 29, 2010 at 11:46 AM

Thanks for sharing Rylan's story. I hope he does fine with his surgery. I'll be saying a prayer!

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.Beanie.
Apr. 21, 2011 at 10:57 PM

I hate that you guys are going through this too, but if is nice to know I'm not the only one with those thoughts and we're not alone.

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