Now that she's very limited on the amount of monitors she's attached to, I have wanted to know about walking around with her in the hospital unit. After the feeling of a walk to the x-ray room, I was hooked. Bryer liked movement and being carried around before she went to the hospital and I can't help but think she would like it now. Even when babies are in utero, they get used to the movement patterns of their Moms. The physical therapist has been working with us to provide sensations Bryer would have felt from the womb - pressing on her hands and feet; deep, constant pressure as she's wrapped up in her blanket; they haven't mentioned my heartbeat and voice, but naturally that's sure to be beneficial. After a little pep talk to myself justifying a walk all in the name of Bryer's development, I got up enough courage to walk out to the nurse's station and ask if I could walk around with her. Both nurses just stared blankly at me, acting like they were completely caught off guard. Then they looked at each other, and decided that they needed to talk to the doctors first. I wanted to crawl in a hole. I wasn't asking to unhook my baby and take her home. I was just asking to walk around with her within the pediatrics unit - one hallway that goes in a circle around the nurse's station. As much as I would have liked to pack up right then, bundle up my baby, and escape with her from all the judgements and accusations and criticizing, it was not the best for Bryer. I walked back to my room, ready to say a prayer and have another pep talk with myself that I can withstand this.
None of this makes any sense. If they think I am a threat, why have they allowed me to sit by her bedside for the last 10 days? Why do they let me sleep in her room? Why am I allowed to shut the door and be with her alone, only for a nurse to check on us every 4 hours to take her vitals and weigh her wet diapers? I'm not complaining, but just frustrated with the double standards. Emotionally, I will be strong for her, if not for myself. She's needs a strong momma to stand by her and protect her. However this is working for me to be with her, it must be with God's help.
They turned Bryer's feeding tube off this morning (that's the tube in her nose in the top picture). She took a 2 ounce bottle, which according to the nurses was amazing. Then she took 3 ounces a few hours later - deemed crazy. Maybe I'm not fully understanding what a miracle this is that she's bottle feeding, by the reaction from the nurses. 4 ounces was pushing it, but she did it this evening! Our feeding ritual takes double time for me since I feed her and then after she's asleep, I stay up longer to pump more milk to replenish the stockpile in the freezer. I have gained a new understanding and appreciation for those moms who have to go back to work, but pump anyway. And I understand how some moms choose not to and give formula. I have faith that someday soon she'll have the strength and stamina to nurse and I will appreciate cutting feeding time in half...And I won't have to wear ridiculous plastic gloves to feed my own baby.
Most days are spent pumping, rocking, feeding, talking to Jason and our kids on the phone, and making myself eat when the hospital staff brings food. I still don't have an appetite, but I will eat to make milk for Bryer. My mom brought a cot for me and set it up at the foot of Bryer's bed. It's better than the chair/bed I was scrunched onto.
They also put the EEG back on Bryer's little head. The purplish marks haven't even healed from the last time it was on (you can see them in the first picture), but they needed to monitor any seizure activity, just for 20 minutes. There were a couple spikes, but nothing to be worried about. The tech said it looked better than she's ever seen it, but wasn't allowed to report on the results, so she added, "You didn't hear that from me!" Bryer weighs in at a tiny 11 pounds, 11 ounces as she approaches her 3-month-old mark.
Jason and I have had to take more time out today find another attorney. We've been through 2, but we have been advised that we need an attorney with a strong background dealing with criminal cases (before it was for family law). It's all confusing and more time is wasted while I have to leave Bryer to interview attorneys. My mom and my grandma were here with Bryer today while I had to leave. The physical therapist came to work with her. We try to keep a sense of humor, and refer to these appointments as Bryer's personal trainer; her own Gold's Gym; yoga practice. I don't like being gone and missing these things with her. I want to soak it all in, to learn and understand what I can do to help her.
A social worker from Health and Welfare also came by today while I wasn't there. It makes me sick to my stomach that she was allowed to see my baby without me being there. This is the exact reason I felt so strongly about having a family member there when I'm not. I feel violated knowing she has access to Bryer. This is the same case worker several of my in-laws have been in contact with. They have been very proactive about making sure legally everything is being taken care of so that Bryer can be released from the hospital into the care of family, if not with Jason and I. The verbal agreement with the Prosecuting Attorney stands that our kids will be questioned by abuse professionals and if everything checks out, then we can take them all home. Until then, they will stay with family and be 'supervised' when Jason and I are around. Bryer was included in that original paperwork when all 5 of them were declared in 'Eminent Danger,' so we just want to make sure we have all bases covered. Despite my in-laws being proactive, the Health and Welfare workers seem annoyed with them. My brother-in-law was instructed not to call anymore and that there was nothing he could do to be pre-qualified to have Bryer in their home. My mom was polite to the worker that came by the hospital today. The social worker said she was just putting a face with a name and came to see Bryer. She informed my mom that Health and Welfare are not the evil people everyone thinks they are and they strongly believe in keeping families together. My mom told her that was comforting to know.
Things are getting strange, but I can't exactly put my finger on it. With the case worker coming while I wasn't there, all the attorney shopping, dealing with the nurses and doctors, it's just a lot to take in, especially on top of Bryer's recovery and caring for her. I find peace at the end of the day when I can talk to my kids on the phone before bed, sit and rock my baby, and escape to my thoughts. I still feel a sincere, close presence of God here, right in the middle of all this chaos. In the middle of the day when things are crazy it's harder to feel, but as each day winds down, that feeling is so strong. So comforting. So 'hit-the-spot' good that I know He has great confidence in me. I used to have a sticky note on my bathroom mirror that said, "Be the kind of woman that when you wake up in the morning, Satan says, "Oh crap! She's awake again!" At the end of the day, that's the confidence I have surging through my body. We can do this with His help.
I read your blog every week. I am amazed by all you have gone through. I hope everything turned out okay. I am anxious to know.
ReplyDeleteThank you for reading Carla. We are all ok. Just know that I am happy to share many miracles in the process that Heavenly Father had a hand in the whole time. I appreciate your support and patience as I put myself out there. :-)
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