So...Emmry and Mike went to Primary Childrens Hospital in Salt Lake. Crystal and Chase said their hellos and good byes to Emmry, and went back to the hotel in Murray. I stayed in the hospital I delivered in also in Murray. Later that night after Mike knew she was in good hands he planned on coming back to stay with me. I was fifteen minutes away from Emmry, but it felt like forever.
After everyone left I wanted to be left alone, all I remember was crying hysterically- especially everytime a nurse came in and asked me where my baby was. I didn't want to even speak, to be honest I wanted to throw a fit at the nurse, at myself, at the world. I was so pissed and felt like God had betrayed me and done me wrong, I felt like this was all my fault and we hadn't even known the specifics yet. The nurses ended up telling all the other nurses on shift the deal, because they didn't want to upset me anymore by continually asking. They were very sweet and I feel bad for taking my anger out on them, when they were only doing their job, but I can't change it now.
I did bond with these two nurses who gave me a big hug and cried with me- when they asked me what she had wrong all I could tell them is the doctors think it's a down syndrome of some form. You expect
your baby to come out perfect, and when they don't it's a hard reality all at once. Those two nurses came in and wrote my name on the board and their names too, they told me I'd be monitored for 24 hrs at least possibly 72hrs- than there was a spot for three goals this is what mine looked like-
Jessica
GOALS:
- Get the hell out of here in 12 hrs to my baby girl
- (BLANK)
- (BLANK)
They chuckled and because the circumstances told me if I was feeling up to it we'd make it happen.
I remember calling my parents and best friend and barely being able to even explain what was wrong- 1. because I wasn't exactly sure I just knew she had a syndrome/heart problems and 2. because I was hyperventilating. My dad told me she's perfect, Jess. Were gonna love her no matter what- we can't do anything now it's out of our hands, it's in God's hands. If I need to make a trip out there I will. We kept it short and sweet since he couldn't really understand me anyway.
My sister Crystal kept checking on me and asked me if she wanted me to have her come to the hospital with Chase while Mike was gone- I said no. She's a very lovey person and being here in Utah I've drifted away from being lovey and cuddley except with my babies. I just wanted to be left alone. I feel horrible now looking back and pushing away the support I did have- but that's how I was coping. I logged on to facebook and disabled my chat, every time anyone would call me back that night I pressed ignore on my phone, I just needed time to grasp it all- I still do.
The hospital called when Mike was on his way back to me, and told me she was having a hard time with her blood pressures and thought it was likely caused by her heart, they needed my permission if things got worse to give her certain medicines and to do some more EKG's. I agreed and told them I'd be there tomorrow and they reassured if anything changed over night they'd let me know asap.
Mike ended up coming back from Emmry's hospital that night. We cried together, asking each other what we did wrong and why this had to happen to us. We talked about what we'd do for her life no matter what she had and were determined to make her life as happy and fulfilling as we possibly could- no matter the circumstances. We cried, hugged, slept, cried some more and continually blamed ourselves for this.
The hospital called again- she needed that medicine.
All that night while Mike was sleeping I went back in my pregnancy and tried to regroup the pieces together- maybe I was feeling like I was with all my lighheadedness/and pain problems because she had something wrong. Maybe God was sending me a sign to toughen up. Was it the soda I drank, or the vitamins I should have taken daily that did this? Did I lift too much? Was it all the ultrasounds I had done? Was it the shot that stopped my labor? All these questions may sound silly to you, but to me they might have been a key in what was wrong with my daughter.
That morning I woke up ready- Nurses had my discharge papers ready and I was out of there! I walked really funny and very slowly, but every awkward slow paced step was one closer to being with my kids. We went to the hotel first to see Chase and Crystal and tell them our plans. Mary and the boys had come up the night before and were staying at the same hotel as Crystal and Chase. I looked for Mike and found him in Mary's bathroom in the dark bawling, my husband is a very strong person he almost never gets upset, he almost always keeps it together for me, but not this time- my husband was having a major breakdown- that night before they told him most genetic disorders get passed from the male and he was beating himself up over it, all I could do was hug him. I could say everything was alright, but I'd be lying.
Mary was gonna take Chase so Crystal could have a break and shower/rest. And than we'd meet back up later.
I couldn't hold Emmry yet, so most of our time spent that second day of her life was just watching her lay there. She was hooked up to so many things, my mind just kept spinning. The doctors came in and told us it looked like she had a possible coarctation of her heart which is:
and also a PDA: http://en.wikipedia.org/wiki/Patent_ductus_arteriosus
They also told us she wouldn't be able to eat for a while until they had her omphalocele repaired (this was the hole where her belly button should of been - you could see right into her intestines) They also planned on doing a karotype which is a specific blood test for any genetic disorders and syndromes, but it'd take days, maybe even a week for the results of that. There main concern was her heart, and she needed a special medicine to keep that valve closed, if things got worse she'd need open heart surgery.
We couldn't do anything for her at the moment, but I wish I could have. So they brought in a social worker who handed us a list of discounted hotels with the hospital. I called almost everyone on the list and had no luck, they were either too far, too expensive or booked. Finally we got in touch with the Ronald McDonald house and they let us stay there- huge relief for now. They even gave in and let my sister stay with us because she was caring for Chase as a temporary guardian while we would be at Emmry's side. Later we had to get it notarized and on file, but for now we were lucky to have a place to rest our head.
After figuring all that out, it was getting pretty late and we needed to make sure Chase was feed etc. So we kissed Emmry bye and let the nurses know to call us if ANYTHING had changed. Mike and I were on our way back from Emmry's hospital to pick up Chase and Crystal.
We still asked each other over an over the same questions as the night before, the ride was silent mostly and we were both deep in thought. When we saw this-
It was beautiful and to me it was sign- telling me it's gonna get brighter.
We had driven back to get them, and than back to SLC to the Ronald house and it was late, so we went to bed with plans of seeing Emmry bright and early. They had planned on repairing her omphalacele so she could begin to feed, but they couldn't keep her stable enough for that surgery with her heart problems. Open heart surgery would be necessary if the problem didn't fix itself, sometimes in babies it takes a few days. So for now she was eating pure lipids pumped into her feeding tube.
My first time holding her!
I called my dad to update him on her heart issues and he was on his way. I think he got here when she was 4 days old- I know he drove straight through and was exhausted the next day. Here's everyone meeting her.
I felt so helpless, waking up every morning without my baby. We couldn't do anything for her but hold her little finger, and sit beside her all day. So that's what my intentions were I woke up and pumped every two hours and left her bedside each time I needed to and stored my milk for her- it's the least I could do for now.
(second portion to come soon)
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