Smiles

Where would I start on how I feel? At this moment exhausted. Not the normal new mom exhausted because I’m up all night feeding or consoling, but emotionally exhausted. I did stay up till after 1 am trying to get her to sleep, which she finally stopped fighting and did. But yesterday took a lot out of me. I woke up yesterday morning after Dan left to go up and see Faith I tried to get my extra few minutes of sleep since I was up late with her that night too. Usually I wait for him to text me to tell me how she was doing and then I’m able to rest, but I was so tired I fell back to sleep before I got the text and about an hour later I checked my phone and he had text me and told me her circuit was down and he was going to hold her. Now that woke me up right away but since I am pumping I just can’t run over in the morning, so I sat there pumping getting more upset as the minutes went by that I wasn’t there and got no call. So poor Dan by the time I got over there I was fuming, but lucky for him when I am that mad I get quiet and don’t talk. Which sometimes doesn’t make sense even to me?

For me I was upset I was missing that time with her out of her bed, which we haven’t been able to do for days, that I was not there to know what was going on with her care and circuit, and that no one took the time to call me to let me know. So many things with her a big deal compared to a healthy baby, and holding is a BIG deal. Me being upset only lasted a minute and I went to her rounds to hear what their plan was. To begin with the plan was to wait through the weekend to start on the other kind of dialysis but they didn’t want to start up another circuit if the one went down and it went down at 4am that morning. Now the more I thought about it I got upset again. Dan had not text me till 7:20am about the circuit and we never got a call that any of this had happened that early. So all that time she was going through all of it alone. They went through what the plan was and her surgeon gave the ok to use the PD port but as long as they didn’t go up on fluid that they pump in her. So the plan is to pump 45ml in and let it dwell for 30 minutes then drain for 10 minutes then cycle back over.

After rounds were over Dan let me hold her since we had to wait for the dialysate to warm up. When I showed up that morning Dan had mentioned she was withdrawing from the pain meds they had turned off when the circuit went down. So they had given her a dose of pain meds before I had shown up so she was pretty out of it. But that soon changed after I got her in my arms. Watching your baby go through withdraws like this are scary, and so heart wrenching at the same time. She first started getting a little fussy, then started shaking, then sweating and sneezing (which is a sign of withdraws), and then the worst was when she started gagging. They finally gave her the dose of medicine and she calmed down and I quietly cried just holding her and not being able to help her. The rest of the day held pretty much the same cycles of withdraw, but along with the ones later were vomiting. The doctors finally decided to put her back on all the meds and just would have to wean her WAY slower so she slowly got a little more peaceful, but that didn’t happen till about 9 pm and by that time I was so wore down I couldn’t even sleep of I could.

The dialysis started up about 11am after the nurses came in and showed Faiths nurse how to set it up and record her fluid intake and output. The biggest thing was that she was pulling more fluid then was put in and that her fluid stayed clear with no blood. The first fill and dwell went good although she puked when she went to push to but mainly because of the pressure on her stomach. When she went to drain I still had not eaten since I woke up but wanted to see what her output was, which was 60 and clear! The rest of the day she was draining at least 15 ml more with each drain. So by the end of the day she had pulled most of the fluid that she had built up while waiting to start up the dialysis again. It was working better if not to good then they needed it to. After the day I had it was needed for a sigh of relief.

So my little girl has been getting so strong and amazing us every day with what she has accomplished. Yesterday marked another amazing day but the BIGGEST one for me so far. I could try breast feeding her!! I was in tears with the thought of being able to knowing she would probably take a while to figure out since her sucking reflex is still a work in progress. This is one of the things I couldn’t think about since I hurt so bad not being able to. When they asked me to sit down and laid her in my arms she instantly started looking. Of course she didn’t know what she was looking for but her instincts were there and I couldn’t help but smile and cry all at the same time. When she latched on her eyes were closed and the moment milk came out her eyes became the size of saucers, and then she fell asleep. We tried a few times for an hour but she was so comforted laying in my arms and being close to me that she just kept falling asleep. The last time we tried she sucked a couple times then pulled back and just lay there, eyes open just staring at me for almost a half hour. By the time I put her back my heart was so warm and beaming. I tried two more times that day but every time it was almost like being next to me like that just instantly made her sleep.

Mel and the family came up and had dinner with us and then we went to go see her. Kyle was in tears since the last time he saw her she was so sick. Then Mel got to witness her trying to nurse, and make all her many noises. I could sit there all day just watching and listening to her. Even her cries I love to hear, and boy does she have faces! Dan is getting quite frustrated with me because I don’t want to leave her side and go eat or spend time away from her. So for now this is my struggle to find the balance. It is not that I can take her with me and spend time with my family. So it is either her or them, and for that I am starting to crumble trying to make it work.

When we got up this morning they were doing rounds on her as we walked in. This is, and was the highlight of my day…they used the word “home”. To most people this may not seem like that big of a deal. But when you go for almost a month of them rounding and all they talk about is how to keep her alive, and then go into talking about what needs to happen for her to come home, it made me weep. Just to hear that they were saying it, thinking it, and knowing she would be going home is amazing to say the VERY least. To think that just two weeks ago it wasn’t even a thought and now we are working towards that is a God given miracle. It shows at the very least what the power of prayer can, and did for our angel. We also got to start kangaroo care, as they call it. It is where we lay her against us, skin to skin. The first time I did it we both fell asleep. It is the most amazing, warm, relaxing feeling I could even describe.

So to put it lightly as a miracle would be so short of what it is. I still wake up and amazed what God has done for us through her. She is our amazing fighting Faith and we are so proud and love her so much. 

So now we pray that she can be home by Easter and not the prayers that she will be alive tomorrow. God is good!!! We have and continue to be so blessed by our family and friends that have been so supportive and helping us out so much. Of course I am still pretty stressed about things but the willingness of people to help us has nothing short of amazing. SO now I just pray I can keep my head on my shoulders and figure out how to be a mom to kids in two places and a wife to a husband so he doesn't feel neglected and a daughter and sister to a family that has been so great to me.