We knew there was a heart murmur, Ann had found it and I had gone to Gateway the next day to have it looked at, after 4 hours they said there was a slight arrhythmia but there was no follow up care instructions and no one seemed concerned about it at all.
Another major reason I didn't want my baby delivered at a hospital is because of how intrusive they are. I feel Dr's and hospitals are more concerned about covering their butts, legal ramifications and "protocol" then the actual care of their patients. I hate that word, protocol, let me tell you, I wanted to tell so many people were they could stick their "protocol" My son is not protocol, he is a baby, my baby, and what I want should go!
They wanted to take my baby from me right away and get him cleaned and checked out. THANK GOODNESS I insisted on holding him for as long as I could and feeding him. The nurse (a male) noticed the murmur and tried to make a big deal about it. Due to my opinion about Dr's and hospitals I wanted to down play his murmur. It wasn't as bad as he was trying to make it sound. And he wasn't going to take my baby from me to look at it!
The whole time...until we got to Vanderbilt and the first cardiologist came in to tell us what was going on, I was in denial and VERY angry all this was happening. I was angry to not be able to hold my baby or see him, I was angry because I felt what I wanted didn't matter. I was slowly being stripped of my power as his Mother and I hated it. This was not at all how it was supposed to be. I was supposed to be at home, holding my baby the whole time in peace and quiet, I wanted calm and love to be my baby's days. Not needles, sterile people holding my baby that weren't me, not ultrasounds, and being naked lying flat on your back for days and days with no one to hold you, feed you and keep you warm.
At Gateway once we were told Reagan was getting transferred to Vanderbilt I had Evan call to find someone to give him a blessing. Evan's step dad was able to come and help administer the blessing. Evan's Dad was also there to see him. I kept trying to believe it wasn't as bad as they made it sound, but I needed to be sure. I was fully expecting to go to Vanderbilt and have the people there say it was nothing and apologize to us for wasting our time. But that didn't happen. We were able to see Reagan before he left, I was pretty ticked because I clearly told the nurse before he too Reagan away NO PACIFIER, NO SUGAR WATER!! I was going to breastfeed my baby and I didn't want anything to interfere with that happening. What did I find in his bed when we got to see him?...a fricken pacifier!!!!!!!!!!!!!! I was P.O'd! If I had seen that nurse I would have ripped into him good! So I took the paci out!
When the ambulance came to transport they were very sweet. This is the start of my love for Vanderbilt and a growing respect for that hospital and the people that work there. Before they left they asked if I had any requests. I said, "yes, NO pacifier or sugar water." They agreed, (just like Mr. Nurse did) and off my baby went. I wanted so much to go with him. And I was going to, I had to sign an AMA form, but my Dr. had strongly recommended I not go, she said there was nothing I would be able to do, there would be no where for me to sleep and it would take a few hours to see him because they would need to get him checked in and set up. It was so hard, but I decided I would be more useful to my baby if I was rested and took care of myself for one night. But I asked to be released ASAP the next day. They promised they would expedite everything to get me out by 9am. I also had to decide if I wanted Evan to go and be with our son or if I wanted him to stay with me.
I wanted him to go with Reagan, but I Needed him to stay with me. That point became abundantly clear after we said good-bye to Reagan and they wheeled him out of our room. I held to my Husband and cried. I couldn't believe the choices I was being forced to make. This was just not how it was supposed to be.
I'm actually so glad I did stay because the day after was brutal! My whole body was sore and moving anything was the hardest thing to do. They started checking me out around 5am. I had ordered breakfast around 7:30 I think, but by 8ish they said we could leave! I thought my breakfast might come soon so we tried to wait a bit but when it didn't come we just left, we both couldn't wait to get down to Nashville to see our baby.
Once we arrived and got into Reagan's room the nurse that was tending to him told us we could look at him, but to try and not touch him or wake him because he had been wailing for the last 2 hours and just feel asleep. Um, excuse me?! are you really trying to tell me what to do with my baby?! not cool. It was so hard to see my son with all these wires on him, needles and tubes in him, naked and so helpless. Shortly after we got there a cardiologist came in to tell us what they had found, and what they would keep looking for, (see Evan's blog below for the details) While she was speaking with us the nasty nurse came in again and woke up Reagan and he started to cry. Getting the news of our sons condition and now to hear him cry so hard and not be able to pick him up, love on him, kiss him, feed him or comfort him just took it's toll and tears just started to flow uncontrollably. It broke my heart to feel so helpless, I was so torn on what to do, I wanted to take over and just do what I wanted to do which is love my son and feed him, but now with everything we had been told I didn't know if picking him up might hurt him more, I didn't know what all the wires did, I didn't want to pull any out and hurt him more. But it just seemed so wrong to me to have him all sprawled out and naked being handled so mechanically by this nurse.
The Dr. stopped talking and finally addressed me, "I know you requested we not give him a pacifier, we are not feeding your son until we know the outcome of the PDA, we know from experience that a pacifier is calming and helps." I don't hear anything else she has to say. I know what she wants. This seems like such a small thing I'm sure, especially in comparison to all that is going on around us. But this pacifier represented the difference between future bonding with my son or not. I had heard about nipple confusion. We weren't going to be bringing him home that day, we didn't know when that would happen. My time to bond with my son right after his birth was gone, my first few days of connecting were gone. If he didn't take to breastfeeding now I felt it was all over. He was starving and I couldn't feed him, he was sad and I couldn't comfort him. A pacifier was going to comfort him.
I was crying so hard and unable to speak I could only shake my head and shrug my shoulders. Evan took the que and told her to give him the pacifier. The obnoxious punk nurse (I feel) made such a scene, she practically ran out of Reagan's room and zoomed back in to shove that paci in his mouth. What a....
The paci was the last straw for me, I had lost, I felt I had no say in anything anymore. He wasn't my baby, he was theirs. I don't know why they even bothered to ask me anything anymore.
They got me a room to sleep in right away once they knew I had just come from the hospital and set up with all the equipment I would need to pump milk for Reagan, they said once he was able to eat, anythingI pumped would be gold, and that was the best thing I could do for him right now. Since I was a breastfeeding mom I was able to get 3 meals a day brought up to the NICU. We were blessed to have a room to sleep in every night while we were there. The last night before we left, they brought in a cot for me to sleep on in Reagan's room so I could feed him during the night.
I guess Reagan and I got a reputation for being a great breastfeeding team. I'm so glad Reagan took to breastfeeding. I was worried. He is a rockstar. He takes the paci, the bottle and the breast perfectly. I can now see the blessing of the paci incident. I never would have given Reagan a Paci or bottle...well at least not for the first couple weeks, or until he got the breastfeeding down real well. But thankfully he is so good at all three and being able to give him a paci is great, it buys me time to go to the bathroom, and build up my nest around me of water, food, remote, boppy, and diaper changing station before I get settled to fed him. It also totally helps him to sleep and sooth him. Once he gets it down he will be a finger sucker. He already is trying to suck on his fingers but so far it's not doing the trick yet.
During the operation and during the whole time at the hospital I could really feel the power from all the prayers that were being offered on our behalf. And I thank everyone for your love. It's the best gift we could have been given. Heavenly Father has greatly blessed us. With all that we were told could have happened we are SO blessed that he didn't have to have a more invasive heart surgery, and blessed that everything else that needs to be fixed can wait until he gets bigger. I'm still praying for a miracle that his heart will just be healed and that nothing else will ever have to be done on my son.
My heart can't take anymore pain for my son. It hurts my heart to see him cry in pain. Before we left the hospital I agreed to let him have the Hep B shot since he was already poked so much, but I did ask them to use a numbing topical anesthetic so that he wouldn't feel it. When they put the topical on his leg he started to cry. I was talking to him and telling him it was okay, then the nurse said that the topical does burn. WTH?!?!?! I didn't know that! I really wish they would have told me that. Who would have thought to ask if the topical would hurt? You automatically assume that if you apply a numbing topical to prevent PAIN, the topical you use won't cause PAIN! Here I was trying to prevent my baby from feeling a quick little pain, and instead I inflicted MORE pain on him. And to top it off, he cried with the injection too! =( Crush my heart! I felt so bad.
I'm tired of writing, I'll add more later....
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