Day 6- Everyone has bad days, right??

Avery laying on Dad's chest for Kangaroo Care in her new hat!

I apologize in advance, as this post might tend more towards Mama than Baby. I promise, there won't be too many of these, as I truly do want to chronicle my sweet daughters progress more than anything in the world. Today was just a rough one for me, and if I know nothing else about myself, it is that writing is something I am passionate about enjoying. It allows me to think and feel out situations that overwhelm me in the beginning. So if you want to skip the mini-pity party, I completely and honestly understand. Tomorrow is a new day and no matter what, we continue to have complete faith our babe is headed in the right direction for total healing.

This morning started off fairly normal. We went to see her for her 8 o'clock Touch Time and the nurse told us that Gracie had been really fussy about half an hour earlier, so she went ahead and started all her care stuff since the babe was already awake. By the time we got there, she was passed out again. I wanted to know why all of the sudden it seemed like Avery was crying more (amateur mom question, I know). Apparently, this is a good sign! It means she is starting to get hungry and that indicates her bowels/tummy are waking up a little. Her sucking is also excellent, so when her belly is ready, she shouldn't have any trouble taking a bottle. You go, girrrrlllllll!! But I have to admit, I was bummed I couldn't touch her and say good morning to her. My mom and I just stared at her for a long time, and that was good enough. The nurse said she had pulled about half a cc of light green bile from her feeding tube, which I thought was a good sign. Less amount and lighter color = positive in my book, or so I had been told. I knew the doctor was rounding about an hour from then and would decide whether or not to start her back on my breastmilk, so I had some time to run to Wally World for my very first Mommy purchase!! (Believe me folks, this is what gets my wheels turning now-a-days...so long margaritas, hello nipple cream!) I did have to pick up the latter, along with some breast pads and other care items. What a wild woman. CJ had said something that really resonated with me regarding Avery's feeding, so I called the NICU as soon as we got back to discuss it with the nurse practioner. Since we kept stopping Avery's feeds and then starting back up at 6 cc's and clearly her bowels weren't handling that, wouldn't it make more sense to start her on a lower amount and see how that worked? (This is one of many reasons my husband rocks.... I would have never thought of that) This is when the nurse informed me that yes, she would discuss that option with the doctor when he rounded, but the fact of the matter was that ANY green bile (no matter the amount or color) was not good. Well, silly me. She said she was inclined to hold off on starting her feeds again until there was no residuals at all. My mind immediately went to, "Well how long is THAT going to take?? She has to eat sometime!!" She told me that after the doctor checked Avery out, they would both be up to speak with me.

Today's Medical Info

• As of this evening, our sweet girl officially weighs 3 pounds!! woohoooo for fatter baby!! We pray that she continues to gain weight, as this will help so many things for her health wise. 
• Her jaundice level has gone down again... it is at 7.5- was 9.5 a few days ago. They have taken her off the lights (and peeled those velcro circle stickers off her temples, thank God) and she is now back in only the baby burrito blanket with the UV light built in. She is still red, but looking even less... can't wait to get off everything so I can soak her in lotion! She will look back on this one day as a woman and think how terribly ashy she looks : )
• She had 2 Brady episodes last night and 2 during the day today. But both nurses said that she righted her self extremely quickly, which is great. She is on caffiene, perhaps until she is 34 weeks to help the Brady episodes not be so deep, and this does not hurt her in any way. Having these is normal for preemies and it is outstanding she does not require any help for breathing. 
• They are going to give her enemas every 12 hours for 3 days in order to stimulate her bowel since she's not going on her own. Good news: she IS going (a lot) when they do the enemas (atta girl!!) and they even had to move her up to the next size diaper b/c she was filling up the preemie ones.
• Tomorrow is her bath day again! Dad and Mom are looking forward to this. Her hair is so blonde and pretty when its clean. This isn't medically relevant but dang, she is pretty cute huh??

So, the nurse practioner and physician come in. They tell me that clinically, Avery is kicking butt. Her belly isn't distended, it's soft, and her bloodwork and levels and exams are all normal. At this point, they are still leaning towards immature bowel. The nurse listened to her gut this morning and there was no rumbling. She said that even though Avery isn't "eating" (still getting her nourishment from different IV fluids) she should still be having bowel movement (and pooping). Obviously, neither are happening. However, when they draw from her stomach tube 3 hours after they give her anything, whatever was in her stomach is gone... which means she is processing most of it. But the green bile means her gut is not tolerating all of it. The doctor said even though they've done 3-4 x-rays that have come out great, there still might be a very small perforation or blockage somewhere that is causing these issues. If the time comes to investigate further, they will have to transfer her to Medical City Dallas or Plano and do an x-ray with contrast. That is also where a surgical team is located, should she require that. (We are in constant prayer that it does not reach this level of seriousness. If they transfer her, odds are she would stay there in their NICU until coming home with us. Obviously it is a lot farther than the 10 min from our house that this hospital is, so our lives would again be so different if that came into play. Also I cannot breathe when I think about them having to do any type of surgery on my baby...the fact that she has a raw spot on her neck is enough to make me break into ugly-cry sobs in Chili's). They have assured me that there are several different options we are going to explore (if need be) before we jump to transferring her. I needed to hear this from roughly 10 different medical professionals before I semi- started to believe it. The plan for today was to give her 6cc's of saltwater at 12 PM and see how much we get back and what color it is at 2:30 PM. If there is green bile, she will continue to be NPO (no feedings) until further notice. This is just continuing to give her gut a rest in order to start working on its own. They initially put the saltwater in and drew it right back out to make sure they were starting with a clean slate (no green). It was indeed all clear. 

My dad and I went down to the NICU and got to change her and spend some great time with her. She actually smiled about 6-7 times for my dad!! Cutest.thing.ever. I think she has a ticklish spot on her arm as every time he would rub it, she smiled. I can't wait to hear this girls laugh.... praying that she hasn't inherited Mom's hyena, wheeze-like laugh, but I feel like that would endear me to her even more. As if that was possible! It was awesome to see Avery and Grandpa bond (and yes Dad, that IS your grandparent name, so suck it up)...I can tell already she is going to love her grandparents to death. She responds also to my mom's voice, which is so cool. My mom sang to her while she and I were on bedrest in the hospital and Avery always kicked around when she heard her. It was a really good half hour, but as always, I'm waiting on the next hurdle to jump. I felt really called to go to the chapel and just let it all out to God. I have been there a few times since being admitted and there is always a serene, calming presence that overtakes me when I'm in that room. I know it's the Holy Spirit and I wish I could stay in there all day! I got down on my knees and wept. I told Him how thankful I was for Avery, and how grateful I am that she is not a sick baby. That I couldn't live without her and how I needed strength to get through this hiccup in her progress. I told Him that I knew He has never left my side, has never once left Avery alone, and I am so thankful for that. I can see His hand in her healing every day... and all I could truly feel at this moment was something deep inside of me saying, "Trust me. That's all you have to do. Just trust in Me that I have this all figured out and handled and our baby is going to be okay. Give this to Me."  I am notoriously a control freak. Giving things over to other people isn't my strong suit. But I know this is my only (and best) option. I left the chapel feeling like things were finally going to turn around. 

But when I got the call at 2:30 that they had drawn out bile again and were going to continue to not do feedings, I pretty much lost it. I'm ashamed that I wasn't able to hold it together better. I was frustrated, sad, defeated maybe a little. Okay, maybe more than a little. I was FOR SURE this was the day it was going to turn around for Avery. As I pumped this milk that was supposed to be nourishing my child and instead was perhaps somehow not working well with her body, I thought....well, I don't know what I thought, exactly. Not positive things. I have only been sleeping maybe an hour at a time, if that, since she was born. My body and mind are functioning purely on an adreneline level. I truly want to cry every second of the day. I have to laugh inwardly (but graciously) when people tell me they admire how strong I am. What does that really mean? That I'm not hysterical 24 hours a day? I kind of am, on the inside. That I'm not waving my fist and cursing God for letting this happen to us? NEVER. I have long since abandoned wondering the reasons surrounding her early birth. Because truly and thoroughly, I trust that this has always been God's plan for me, for us, for Avery. But I digress. Today, I boo-hooed. I tangled wildly with a quiet depression. I let myself not smile through the pain, both physical and emotional. My husband took me to dinner, of which I wasn't hungry for and had to fight tears through. What a great date I turned out to be! 

We returned to the room as I had to pump before we started her kangaroo care tonight (Mommy's turn and BOY did she need it today!) As I prepared all my "supplies", the room's phone rang. It was the nurse practioner, telling us that they had drawn her stomach tube contents and done another physical exam about half an hour before. The bile they got was really, really small and as her belly continues to be soft and not distended, the doctor had decided to go ahead and start her tonight on 3 cc's of breastmilk and see how she does. The reasoning behind this turn of events decision was that this was the least amount of bile they've gotten back and perhaps they just needed to give her bowels something in the hopes and the tides are turning for her. They still wanted me to come down for kangaroo care and they would feed her while I was holding her. Okay Lord, we've been granted OT! I rushed downstairs, so eager to hold my girl and pray over her as we rested together. She immediately nestled in mom's arms and fell fast asleep. It was the first time all day I had breathed deeply. I smelled her, I kissed her, I stroked her hair. I am in such a deep state of bliss when she is against me. Dad came down as well and we talked about her nursery. Dad was a wild man today! He picked up her crib/changing table, dresser and rocker, cleaned out the guest room and started to put everything together. He is very concerned with finishing the nursery before she comes home, and while he knows it will be awhile before that happens, I am glad that he has such inititive to do such things. Hopefully in the next couple weeks I can put the finishing touches on everything and start her library. This girl is gonna be a reader just like her Mama! 

11:30 was the magic hour. (sidenote: I started writing this post after kangaroo care and before her next touch time at 11:30. I would officially like to rename the title of this post to: "Day 6- God has some tricks up His sleeve!!)  Walking out of my room to her touch time felt like marching to a death sentence. Dramatic? Yes. Have you met me? But seriously, its the pit of your stomach dread and I flip flopped between knowing that this was THE time things would be different, and doubting my assuredness. Its extremely exhausting to get so wound up every time you're expecting miraculous news only to see that dang green bile being pulled out of her tube. My heart was racing. I rang the buzzer and they let me in. Her nurse came around the corner and said the most beautiful words I've ever heard. "I just checked her tube and we got nothing back at all. Would you like to change her diaper and feed her again?"  My heart literally stopped. My knees buckled. I put my hands to my face and started to cry. I asked the nurse, who I'm sure by this time thinks I'm completely looney toons, if I could hug her. She sweetly obliges, but doesn't go for the full body embrace I'm trying to force on her, haha! I washed my hands and ran around the corner. Ahhhh, there was my fighter! I wanted to high five her baby hand. The nurse told me that yes, this was obviously great news, but it is the NICU's job to prepare you for worse case. She said our time in the NICU will be punctured with great feeds and not so great feeds, and if I intended on keeping any semblance of my sanity, I shouldn't put so much into every single event. She is right, of course. But hey, let me celebrate that this is the first time we haven't gotten back ANY RESIDUALS!!!! I prayed over her bowels again and thanked God a half million times for being so loyal, so merciful. My eyes are about to quit on me, but I had to get all this in before bed. I'll go drop off some milk at 4 and see how her 2:30 feed went. 

Prayer Requests

That Avery Grace continues to digest completely her food, no matter how much it is. That most importantly, we continue to get back no residuals in her feeding tube. That she keeps gaining weight and stays healthy. That she continues on this upward track of progress.

I thank you Lord for all these blessings, and know that without You, none of this would be possible. We continue to honor you, to praise you, to glorify you with our lives, and thank you for everything you have done for our daughter. All the glory goes to Him!!

*Also thanks to my friends Amber and Cortney, who have messaged me such sweet, gracious words that have blessed me and stayed with me today when I was sad. Words of encouragement are so uplifting and beneficial, and I am so grateful to you ladies for lifting me up when I didn't feel like I could do so myself. I love you!!

Good night everyone...