If Life could just give me an easy button

I sat there in the waiting room today feeling myself fall apart at the seams. The last 24 hours have been so hard and with Savanna and Tristan here I didn’t want them to see me so stressed out so I was using all the energy I didn’t have to hold myself as together as I could,,,which wasn’t working very good at this moment. Yesterday started out ok. The kids came on Friday mid morning to spend some time with me, which we both needed. The kids were missing me so much and started falling apart and I was crying almost every night talking to them on the phone cause I ached to be there giving them a kiss goodnight, not just saying it over a phone. We filled our weekend up with visits from family, Aunt Carol, my cousin Dawn from New Mexico, my mom and Grandma, and then Saturday Mona, Tabby, and Dans' mom, Dad and Grandpa came by on their way to a memorial. Then Sunday Mel and her family came up.

It is so nice to have a taste of home when people come to remind us we have a family, when we are so far away from them all. We decided to run to Northgate Mall to get a LATE lunch and look around to get the kids something “special”. They both decided on a DS game which was their babysitter the rest of the time in the hospital. Although Vanna couldn’t make up her mind as usual and wanted a couple other things to, but with my convincing she finally made her choice.

  The thing with me is going anywhere minus my baby is hard and then add on it being a long period of time I start having anxiety attacks. Now people will continue to tell me to take the time to take care of myself. But when you are a mom in a position where your child is so sick, the thought of yourself is so far from your thoughts, as running a marathon after giving birth would be. She is my priority now and when I am the priority (or taking time away) I start to panic. As moms I have met that have lost their babies or had ones in the hospital, going into public without them makes the reality hit in floods and is so hard not having them in tow.

She has been fighting so hard. I mean to be a newborn and have a major surgery that most adults won’t ever have to go through and come into this world with the odds against you. She is my miracle no matter what her life brings tonight tomorrow or even next week.

So back to my last 24 hours…well again riding the wave that we are on with all this is like bungee jumping. There is no steady climb or fall. Everything is drastic and comes when we are at the end of our ropes. When she came out of surgery those 24 hours after were touch and go and her stats were all over the place. Well the moment we were comfortable as usual with her recovery she started to decline and decline fast. Yesterday held; blood that wouldn’t clot, a arterial line that would stop oozing blood, oxygen levels that wouldn’t stay up, and a dialysate solution they needed to switch because they were needing to replace platelets and blood. Now that was just yesterday.

 Now today I had Dan text me when he got over to see her and nothing had really changed. With saying that, there have been some good things that have happened. For me it was last night. We went to dinner and by the time we were done it was 8 pm and the kids are not allowed in there with her so I dropped Dan off and he went to spend time with her while I got the kids ready for bed, then it was my turn. When I walked in the door I could see her eye peaking, and my heart leaped. She hasn’t really been awake much for the last day or so, so to see her awake made me so very happy, and eased the anxiety I felt all day. I went up to her and told her hi and at that moment both eyes opened and she looked right at me. I held her hand and she just stared at me while I told her how much I loved her and how proud I am to say I am her mom. I sang her song all the while her big blue eyes string right at me squeezing my finger. I kissed her and kissed her again and then she finally fell asleep. Also her levels with everything else but her oxygen were good. This is what has left the doctors scratching their heads.

Her x-rays are showing a cloudy area in her right upper lung which may be pneumonia, but they are already giving her antibiotics so??? Then her CO2 levels are as good as they ever could be which usually raise when her O2 levels drop, but not the case. Then they thought maybe it may be a fungal issue in her lungs so they started other antibiotics to maybe clear it up. OR maybe it is all the foreign tubing and needles in her that she is just reacting to. ALL is a mystery. SO today she has de-satted twice and fast. Once was when they started the new dialysis circuit because it was pulling way more then it said it was pulling from her. Now each time went from the levels being in the 90’s to levels in the 60’s. At that point the doctor came in and explained what I didn’t already know and let me know that this may just be a cycle she’s on and may not pull through. Mostly because she is supported to the fullest she can be and every little thing is making her fall apart.

I lived with that comment all day, and as the day went on it began to take its toll. For the most part since that day before surgery I have been at peace knowing what is going to happen is meant to happen, but today I was fighting that thought. I had given her over to God, but now I was fighting to keep her as my own and I was losing it, seeing I was failing. I can’t really explain the feeling of watching your child start to fail in front of you and not be able to give her what she needs to keep going. It leaves you with such a sense of failure, and hurt that only someone who has been through it could even comprehend, because I can’t even explain it on paper. I then called my sister because God put her in my life for one of many reasons, and one of those was to be my sounding voice when I was lost. Bev has that way to put what God has or is into perspective and for that I am so grateful. I began to tell her how I was losing it and how Mom and Dad were on their way to come get the kids because I didn’t want them to see me falling apart and stressed like I was. She then said the words that I knew I needed to hear. “You need to give her back to God”, my first instinct was, NO! But it was then that I knew I was so wrong. She was given to me for a purpose and who am I to tell him what that purpose is or what his plan should be.

So it was then that me the kids and Dan went in by her, laid our hands on her and prayed, “God, I don’t know what your plan is. I wish I did, because it was ease my aching heart. But more then that I give you Faith. Faith that you have a plan for her, and our sweet baby girl Faith. Our prayer is that you heal her and let her come home, but if that isn’t your plan that you let her come home to you and don’t make her suffer anymore, Amen”. Now was I in tears just saying it and telling him to take her if that was his plan, yes! Am I crying now having to write it, Yes! But it is in times like these, that you really realize what control you really don’t have.

SO now that it is 1am I am going to say goodnight. I pray that tomorrow holds an answer and with that answer I hope it is my little girl is better, but as I found in my heart today I don’t have that control even though I wish so badly I did.

To Faith…

Honey I love you so much. Your smell, your hair, and the way you bite your tube when you start to wake up, almost out of frustration that it’s in there. I love your tiny long little fingers and how your squeeze me so tight when I put them around my finger. I love your chicken legs that look like mine but your big lips that look like daddies. But more than anything I love that you have fought so hard to be here with us these two weeks. As I sit here crying unable to see the screen my heart smiles thinking of you and all your precious little parts, how many lives you have touched,  and how much you have taught me since you came into this world. My stubborn, sweet baby Faith

Goodnight baby I love you

Mom