A Week of Nothing Short of Miracles

It has been quite a while since I’ve actually had time to sit and write or should I say even think in the last week. After the surgery we had a few days of stress just hoping she would recover ok, and better then the last time. Which she did and we were so relieved and happy.  I drove down on Friday and watched Tristan sing at his assembly and it is so nice to show up, and people ask how Faith is and show genuine concern for her and my family. I watched him up on stage and so embarrassed wiggling and trying not to smile. All the while I was holding back tears so happy to be here for him, as Savanna kept looking back at me to make sure I was still there. It’s all these times that I took for granted being able to be there for which are such a big deal to both me and them to share.

We ran a few errands before heading up to see Faith, and as I drove up Dan had to drive down to go watch Jordan’s game. While meeting for just a minute as we drove by each other, trying to be the best parents we could for all of them. We spent that night with Faith and the next morning we all got ready and headed over. This is when the most amazing news and kind of sad news came. I met Dan in Starbucks, our normal morning ritual of caffeine, and he told me that Jordan’s game was still not canceled so they were going to have to leave. Well of course I was bummed that they needed to drive all the way down there again, but more than anything he was going to be missing a BIG thing. The doctors decided that she was doing good enough to have the tube taken out of her throat, and put on just on a  nose oxygen vent! But this meant Dan would not be here for it, but the kids were. See where the good and bad are in this? I was so excited, but part of me hurt since I knew he would not be here with me to witness it.

I called my Dad on the way over saying it may happen in the next couple hours so he called all my sisters and brothers, and they headed up to see her. We said goodbye and walked up to be with her, and as we walked in they had done it already!! I dropped my bag and didn’t know what to do, how to react, or what to say. I sat there and just stared and kept saying oh my oh my, over and over again with tears running down cheeks. She looked SO different! You could see her mouth, her lips, her tongue, her jaw. You could see it all, and then there it was…her cry. Now there wasn’t much noise to it since she has never used her voice box before, but I could hear her, and that’s when the kids, the nurses and I all cried together. It has been a whole month and for the first time I saw my babies face, and heard her.

Now at first it is all so new to her and she couldn’t swallow, or suck so we worked on trying to get her biting on the pacifier and just sucking all the spit bubbles from her mouth since she didn’t quite know what to do. It was pretty sad to see how much pain she was in when she did try to swallow since her throat was extremely sore. But it was the most amazing day to be witness to and to have the kids there to share it with. Dan, Jordan, and Garret got back later that night and went to see her, which by then she was a lot more content. The rest of our weekend we spent together hanging out around the hospital before doing our drives down to drop kids back off.

Today marks a week since her surgery and she is doing AMAZING. They have turned her oxygen pressure down from 6 to 2.5 and her O2 levels are at 30%. So she is almost ready to be put on the regular nose cannula vent and then it’s no oxygen at all!! She is also up to 4ML an hour of breast milk and cutting back on her pain meds. The only thing is, is the dialysis port. The hemo dialysis is very touchy to flow in and out and today has been not a good day. She was doing really good on it so we were able to hold her for hours at a time as long as didn’t move much, but starting last night Dan went to hold her and 10 minutes later, and trying all the positions we could, he had to put her back, and we haven’t been able to hold her since.

They are talking today though since the lines are not working that well to start using the PD port that they put in just last week. Now that makes me nervous, or should I say VERY nervous since the risk of infection is very high and risky if it is used before it is completely healed. SO as I sit here listening to the nurse’s talk they are still indecisive about if they will be using the dialysis port tomorrow or waiting…please.

So at this point we are in a waiting game just seeing how she does and what the next step will be. All the while I know what I am hoping for and that is to go home, but I can’t decide when that will be. So my prayer and hope is by Easter. Until them I will try my hardest to be content with what I have and not try to think of what I don’t…like holding her, nursing her, and just being able to walk into a public place with her in my arms.

Surgery #2

The thing with surgery is you do it to get to a better place. But getting to that place puts you in such anxiety at times it seems as though you may not being making the right decision even though all the signs point in that direction. But as a mom to watch your daughter get wheeled into an Operating room is a gut wrenching feeling I can’t even begin to explain besides just wanting to save her or take her place.

Last Monday marked the fourth time that we were told to be ready to say goodbye to her. Now each time gets harder since every time we have had more time to fall more in love with her. As the week went on we had a few bumps, like a popped lung, but once they put in the chest tube to drain the air she began a steady climb up hill and day by day got so much better. Now I have found out she does not like gas or pooping because she de-satted on Thursday when she was passing gas and filling her diaper and the moment she was done she just went limp and fell asleep.

She is my little ‘stink’ when it comes to keeping me on my toes and making sure I don’t at any moment think I have any control on what happens with her. God has definitely used her as a training tool to me for patience and trusting in him. Because the moment I start to try to regain control is when he shows me otherwise.

The weekend went well and got visits from family which I love and every day she is more awake. Monday she started being able to find her vent tube and pulling on it so we had to put mitts on her. She is also trying to talk and smile, but with all the tape and tubes we can’t hear her or see her full smile. Just to hear her voice is going to make me cry.

Monday oh Monday!! We went to see her and during rounds they informed us that her vent settings were so low that we could take her vent tube out, but with her going into surgery maybe this week they wanted to keep it in. Can you even imagine it!! She is at the point where she is breathing! To think that a month from today they were telling me I most likely will be having a baby that will not survive past delivery. But now in front of me is a sweet baby girl who knows my voice, smiles, grabs at things, and is breathing. She has amazed so many people and doctors of what her little fragile body can do and handle. And along with that the amount of lives she has touched in her short time on this earth. She is my superstar.

Later that day on Monday the doctor came in while she was having the fits about her tube and told us he would track down Heally (or surgeon) to see when we would get her in for the next surgery. Well as anything goes here we just have to sit and wait and hope to hear something. So we waited most of the day and the surgeon finally came in and told us he was comfortable taking her into surgery now that she was so stable and would check his schedule and get back to us, which wouldn’t be till the next day. So of course that drives me nuts not knowing but also made me feel better that he finally showed up and was confident in taking her into the OR. This surgery would entail the removal of her left kidney, the placement of the peritoneal catheter for dialysis, and a G tube placed in case we needed it for food supplements of medicine.

My plan was to go down and surprise the kids at school on Tuesday and bring Savanna to dance class so I could spend some time with them. There were many reasons I wanted to but mostly because on Sunday I had a complete meltdown. Being away from home has been so hard for me because I find comfort in being around my own surroundings, my family, my home, my kids, and my animals. So this whole month has had so many hard parts to it and of course being away from my home life has been REALLY hard and really hard is an understatement. Dan was amazing though in trying to comfort me and calm me down, which took a good 2 hours. It hits me in floods when it hits me because it is the constant toughing through it that really just gets to me at times. For the most part I stay pretty grounded and strong, for Faith and for my kids but being human I do break, and this was one of the worst breakdowns I’ve had. It’s hard not feel like your failing as a mom, but then I know I’m doing the best I can in this situation God has put me in.

So Tuesday came and at about 4 am we got a call. Now any call still leaves me panicking to find the phone and of course a call this early left me completely panicked BUT it was a good, amazing call. The power had went off so they had to switch her circuit, so they wanted to know if we wanted to come hold her while they got the new one? Really I don’t know why they even ask me that but I’m sure there may be some parents that aren’t able to, but me I couldn’t move quick enough.

When we got there I had to pump so Dan held her first and then it was my turn. She wasn’t swaddled this time so I got to feel her bare skin against me. I sat there and just stared at her and watched the sunrise with her in my arms. God must have known how much I needed to hold her since I was such a mess knowing I was leaving her for the day. As I gave her back though the tears flooded my eyes having to put her back in the bed, but it also made having to leave a lot easier. It is feeling what you are missing that makes it harder to be ok with.

I then drove my two hour drive to go and surprise the kids at school, and surprised they were! Tristan was in tears and Savanna was the happiest and most shocked I’ve ever seen her. We spent the day together all the while the gut wrenching feeling of being away from Faith was killing me. I have never in my life been so torn. People are free to offer advice on how they would or how I should deal with this situation but until you really go through something like this you can’t really understand. Leaving her isn’t what is at all comfortable to me since she is so unstable and at any moment could be gone and home is just not around the corner. So to drive that far for that long put such an anxiety in me that I am not going to be able to do again in the near future. So when it was time to say goodbye to head up was just as hard. I wanted to stay and be with them but also needed to be with Faith. So the being torn is exactly how I am and feel. I cried the majority of the way back to the hospital but also was excited to see my baby again. A feeling as I said you can’t explain unless you have been in this position.

The kids of course wanted to come up with me but knowing surgery would be on Wednesday I knew that it wasn’t a good idea for them to be there so I would have to wait till the weekend to go get them. Wednesday was here and it included a day of waiting and being on the edge of our seats waiting for the surgical team to show up to come get her. Dans' Grandpa came up to visit and then his sister and Aunt Twila came to stay the remainder of the day. Later that afternoon my mom and dad and Gus showed up to stay till surgery was over too. As always waiting for me sucks and gets me so on edge it was a good thing the kids were not here. The afternoon came and went and then dinner came and went and then at 8 pm the door opened and anesthesiology was entering the room. All day I held it together and was nervous but having them come in it hit me all at once and took so many deep breaths trying not to break down or puke. They went through all the check lists of lines and then had to tell me all the risks of what could happen, which I could have lived without. Then it was time. We followed behind her as they wheeled her down to the operating room bagging her. They then stopped to let us say goodbye and I kissed her and prayed a quick prayer and watched her disappear behind the doors and my heart broke. Dan just kept saying she would be ok, but even if she was ok the thought of her having to go through all that pain without me there hurt so bad.

We waited an hour before we got the call that they had started the surgery and then about 40 minutes the kidney was out! Well then we waited and waited for 2 hours with no call and out of the corner of my eye I saw her bed coming around the corner wheeling her back to her room. At first I was relieved but then upset that we had not received one call that they were done or he was ok in over 2 hours. The surgeon then came to tell us it all went good and she handled everything well and once she was settled we could go see her. Everyone took a deep breath but me. Until I could see her there was a part of me that was not going to be able to take that breathe. Then it was time. We then saw her, with all the tubes coming out of her now that made my heart break. For some reason I had a different picture in my head of what they would look like. The G tube to me almost looked barbaric and not at all what you would expect and then the dialysis catheter was way bigger than I thought it would be.

The next day Dan went to go see the kids and to Jordan’s game and I stayed to be with her. It was pretty uneventful but the pain was so prevalent on her face whenever she began to wake up it broke my heart. My cousin Lu came up to see me and we talked for a while and then my little angel woke. She was so wide eyed and happy I began to finally feel the sense of calm come over me. Of course they had to mess with her and suction her which hurt her and made her cry but then she calmed down. I kissed her forehead and she drifted to sleep.

As Lu and I talked the one thing that is so true, even at times I may not believe, is God only gives you what you can handle. Now if I was given the choice to go through this I would NEVER choose to, or even think I could live through. But I have and became such a different person because of it. Now do I know what the reason I am or will I ever, who knows, but that is not my right to ever know if ever do. The one thing I know is God gave me an angel to care for. She may not have wings but she nothing short of one in my eyes and in so many lives she has touched. There are not many people who could endure what she has been through in her month on this earth so for that I know she is an angel, and that is all that matters.

Happy one month birthday baby girl!!!

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

Scares

So as I sat there thinking about where I would even start about what has happened in our lives since the last time I wrote, and then best way to say what it’s been like, is like going bungee jumping. At first you’re scared and so apprehensive but once your strapped in you are kind of set to fall…like I was during delivery, no turning back. Then there is the rise and fall that we have encountered way to many times in the last 2 weeks now, that fight feels like it has been months. From the start we have been scared with the fact we may lose her now 3 times. SO it starts with us finally getting comfortable with how she is doing and looking to the next step, and then we get hit with the straight down fall.

Now nothing can replace holding her for the first time. The next day I held her first thing when I got there, but when I was holding her this time her oxygen level was sitting right on the edge of ok, but last time she was 100 percent and doing so good so Dan was stressing. I could have held her all day, but he needed to eat and was too nervous to hold her, and from that point on she started to go downhill, and fast. By the time we decided to go to bed the nurse said she may go back on the other ventilator which I was so praying it didn’t happen. But sure enough at 12 am she called, and let us knows she wasn’t doing so well and her co2 levels were rising. Shortly after the call they switched her over to the ventilator, which we didn’t get a call for.

Dan as his regular self woke up at 5:30 and was going to go over to see her, but I was so exhausted that morning so I decided to stay. It was about 10 minutes later I got a page which made me jump out of my skin and I called and was told she had been switched over and they were going to be doing another blood gas, but her levels were not going down. At that point I half way hoped that they were going to be less when Dan text me, but as normal I cannot predict anything when it comes to my life with Faith. When I answered the phone he was in tears and I instantly felt my heart drop. He said in not many words that she was not doing well and he would come get me.

At that moment, the saying, ‘that the world stopped turning’, instantly became real. I sat there pumping in shock. Shock that she had been doing so well, she was on the other ventilator, she was able to be in my arms, and how could she not be ok? How? Dan opened the door and as I asked how out loud, is when it finally hit me what was happening, and I knew she was not ok without even having to see her. It is a mother’s sense I guess, but that is a feeling I would NEVER wish upon anyone. I broke down on the bed, in the shower, and walking up to see her. As I walked in her room the surgeon was FINALLY there to look at her and people were taking x-rays of her and I just felt my heart being just pulled from my chest and broke down again.

When I finally was able to see her I hurt just seeing the pain I could see her in. Her belly was so swollen and she was so pail. The surgeon ordered ultrasounds of her belly, and head, and heart, I didn’t even need to hear it out of any of their mouths, but my little baby girl was falling through my hands in front of my eyes. I walked outside to talk to my kids on the phone as my normal morning went to say hi to them, all the while trying not to let them here the heart break in my voice. I successfully got through it and informed Mel that she wasn’t doing well and don’t know if she will pull through, even though I had yet to talk to a doctor. It was within a few hours that half of our families were there.

Now throughout the last hours her white cell count had sky rocketed, her fluid volume was rising, her urine output falling, her co2 rising to 140(which should be between 40-60), her O2 was falling, and they were at the highest settings that they could go on the ventilator. So a meeting was set up for us to hear from all her doctors what was really happening, in one of those “bad news” rooms. We are very fortunate to have a family to support us like they do, but no when can make you feel any better when your baby in the midst of losing your child. All of the ultrasounds came back ok and her kidneys were just too big. So we were lead to a room with the neonatologist, the nephrologists, the nurse, and a couple other people on the staff. We sat there and heard them basically explain her condition and what the options are.

 At this point when she came to Seattle she was sick, but good enough to do surgery and in the last 24 hours she has started to get to sick for surgery, and even if they did try surgery with all the pressure from her kidneys and the machines trying to keep her alive,  a basic incision would kill her. And even if she survived, and she needed more support to get her recovered, they were no more settings to go up on. They were doing everything they could for her so if she started to fail anymore there was nothing they could. So at this point we need to have the talk about when enough is enough for her and what pain are we willing to put her through? They then left us to talk.

We sat there for a moment or should I say till the door shut and all the strength I had that was holding the tears and heartbreak in, let go and we wept. It was a long while of just heart wrenching tears and Dan asked what I thought. Part of me was in shock and how do you answer that, but then the words came out, how do you tell the doctors it’s enough and stop trying? How do you say goodbye to your baby and watch her pass away in your arms? I just couldn’t be the one to make that decision or let her go. That whole day was filled with heart ache and tears and Bev came down to be with me. I was so exhausted by the end of the day, but I also didn’t want to leave her because it could be my last night with her. Dan was more awake then me so decided to stay with her and Bev came to the apartment so I wasn’t alone.

I sat in bed for 3 hours unable to fall asleep and awoke the next morning to Dan telling me she was still alive and her settings were turned down a bit, but he needed to rest so me and Bev took the next shift and as the day went on more and more family came to be here again. This was the day that the conference with ALL the doctors and the surgeon was going to happen. I prayed and prayed all day and night not to have to make the decision on what to do with her, that he would show me or just let her go without me having to decide that. We walked back in that same room now with a few more people in tow and listened as they all explained, and at that moment I felt the peace, and I knew what needed to happen. We would do the surgery and dialysis line. Now yes she may not make it through the surgery and she may not recover, but I could not live the rest of my life with that regret that I didn’t try. I also knew that if the surgery was not the right thing she would let me know. So the surgery would happen the next day and we would go from there.

We then scheduled a baptism that all of our family was able to be in the room for. It was something I had planned on doing, but under the circumstances it was something we needed to do for her then. When everyone got in the room we started out by saying a few things then say a gospel before one by one everyone came up to bless her. It is one amazing thing to know the love and support she has been given over these days, weeks and months since we found out the devastating news, but to sit there and see everyone shed tears over her was one of the most touching things to see as a Mom of a miracle baby. We then ended by Amazing Grace and then the song that made me break, You are My Sunshine. At that moment the sun hit right over her bed and the light and love in that room was overwhelming. After they all said bye, all but my Mom Dad and two sisters, the doctor walked in. He said that he didn’t know we were baptizing her and asked if we were Christian. We of course said yes and he was so heart warmed to here the hymns being sung and asked to pray for her. To hear that from the doctor that is the one with your babies medical advice in your hands just made our decision to do what we did that much more perfect. We all held hands and he prayed the sweetest prayer for her and I was even more at peace if that was possible. He was from Wisconsin so my dad was so impressed first by his beliefs but the fact he was from his homeland made him beyond impressed and happy with who his granddaughters medical life was in the hands of.

That night we all went back to rest because I knew the next day would be a long and hard one for everyone but most of all Dan and I. Because at this point her life was in Gods hands and I absolutely no control and I passed all the control back to him. And little did we know what the outcome would be.

Holding my baby girl

Do you remember the first time your baby peed, or the first time she opened its eyes ,the first time you felt her weight of its body in your arms, or the smell of her on you after you put her down. It’s amazing in life what you take for granted, even when you think you don’t. She has taught me patience, and a respect for life I thought I had, and now know I was lacking so very much. My sweet baby girl Faith!!

Today I woke up so exhausted. My body is aching with only one nap since I gave birth, and walking a minimum of 4 miles a day and on my feet all day. Oh and not to mention the stress of everything. So Dan went over early this morning when I was pumping and I went back to bed for an hour, because I honestly could not get my body to move. 

Now yesterday was our first day at Seattle Children’s Hospital, and they told us, and I knew that once her pressure on the high frequency ventilator was turned down to a 14 then they would switch her to the "other ventilator". Now with switching to that ventilator meant it would have flexible tubing, and with that…well, I GET TO HOLD HER!!! Now since she arrived here she went from an 18 down to a high 15 and during the night they were going to turn her down again if her blood gas came back good. This meant the next day I could be holding her in my arms! I never expected to hold her this early so I teared up with just the thought of it. The truth is, that i had pushed the thought of holding her out of my mind because it hurt so bad not being able to hold her, and nurse her, and just feel her in my arms. So knowing that in 24 hours or less I could be holding her, just made my heart leap.  

So when Dan got back to pick me up to bring me over, he walked in and yelled, 13! Now as tired as I was it did not dawn on me what he was talking about till he said, they turned her down. At that moment I was awake. When we walked in her room another gentleman was in the room and along with him was another machine. That machine was THE machine. We sat there and watched, and then there it was. Her lungs were rising and falling, and her body wasn’t shaking from the other ventilator any more, and she was doing awesome on it. Her oxygen level didn’t even drop. They got it all dialed in and the nurse gave us the stethoscope, and through our ears we heard our baby girl breathe. Now as I said before, it will amaze you what you take for granted in life, and hearing your child breathe is one of those things. As we both sat there and listened to her breathe through our ears, we cried. But this time it was such a joyful tear that rolled down our cheek. 

It was going to take a minute for her to relax, but you could already see how relaxed she was even in the few seconds she was able to take breathes in. They told us they were going to do a blood gas and then if it came back good we could be holding her within an hour!! Really an hour! I had to sit there and really convince myself I wasn’t dreaming. Since we went straight to her room when we got over there we were getting pretty hungry so we went and ate and when we got back…she was ready to be in my arms. I sat in the rocker watching them bundle her all up, and still couldn’t believe it. I kept waiting for them to say, she wasn’t doing well, and we would have to wait, but then they turned around with her in their arms and laid her on my hands and then the weight of her body lay in my arms and against my chest.

There she was, and I began to weep with such a joyous outburst I started to worry I was shaking her from crying so hard. Dan came over and talked to her, and her eyes opened. Now she has opened them a few times, but this was the first time that they stayed open and she looked right at me, then Dan, then me again. She also smiled and made the funniest faces which made us laugh and cry all at the same time. Total she stayed awake for almost 20 minutes just looking at us. It was like she waited to open her eyes for real until she was in my arms. 

Now to me it felt like 10 minutes, but I could see Dan just going crazy wanting to hold her so after about an hour I handed her over. I cried giving her up, but knew how much he ached to feel her in his arms too. It was so heartwarming to see him hold her. Nothing is like seeing the father of your child fall to pieces in love with your baby in front of your eyes. He sat there and rocked her and talked to her and we both sang “You are my sunshine” (which is the song my dad sang to me when I was growing up) and finally had to put her back cause Dan needed to eat, although I could have gone all day, and not eaten, and not even realized it since I was so happy and fulfilled. I sat on cloud nine all day. Dan’s mom, dad, grandma and grandpa came to visit and see her. 

I tried to rest but I couldn’t get comfortable so I gave up and drove over to see my baby. My day was full but my heart was fuller. My baby girl’s smell was still on my clothes.

Being torn

How can you top the tears I have shed in the last 24 hours? About a month ago when I took the kids to Awana I noticed that their grand prix cars were on sale, and the date for the race…March 3rd. Really! When I first saw it I was upset, but the more I thought about it the more it bothered me. I have always been there for everything for the kids and to miss something like this was not an option for me. I figured a few things. Faith may not make it and I’ll be home mourning my baby, or I will be at the hospital with her but I would come down to watch it and go back. Little did I know that neither of those things would happen.

So much has happened in Faith’s and our lives in the last week it takes all of me to try to remember what happened the day before, let alone an hour prior. On Tuesday the kids had spent the night with us. After we spent the morning with Faith, Cheryl came up to see my baby girl and brought us coffee!! WE spent a while up there since they were doing an ultrasound on her kidneys. Because for some reason her belly was expanding even though she was peeing, so they just wanted to double check. Once they were done I changed her diaper and did her care with Cheryl there, and then headed down the elevators back to the apartment. When we were walking out Teresa or pallative care team leader, was coming to find me and ask how I was. I explained all the pain I was in and how worried and stressed we were, and of course how terrible the OB was to me and my family. So to say the least she was going to put in a complaint for us. There is absolutely no reason someone should go through this. So I felt a lot better.

By the time I got back I was EXHAUSTED. The trip from the apartment to her room is a half a mile so basically I was walking about 4 miles a day 3 days after I delivered and it was catching up with me and quick. But being in my position I didn’t, and wasn’t an option to take it easy. We all lay down and then the phone rang. Now that dang phone has never been a good sign, and this time was no exception. Dan ran and answered the phone and all I heard was uh huh and yeah. Now prior to all this I had just got done breaking down because I was seeing firsthand how much my kids missed me. The fact I wasn’t there for them, and felt so torn to be a mom I just didn’t have the option to be, and it was killing me and being so far from home.

Well when he hung up he began to explain what I did not want to ever hear.

The ultrasound showed that the swelling was her kidneys and they were getting way to big. So they were gonna have to do surgery and remove one of them. Well this also meant that they would have to transfer her to Seattle since they didn’t do surgeries like that, and Seattle were the experts on kidney issues. I lost it! Transfer, surgery, being farther from home, and my dear kids that now I wouldn’t see as often. I felt my soul and heart just twisting inside me and couldn’t even cry as hard or as deep as my body wanted to. Every part of my body hurt and wept. Dan asked if he should stay with me but I needed someone to go be with her. SO I sat in bed watching my dear little babies sleep knowing how much I wasn’t there for them and soon was going to be farther from them and now my little baby was going to be cut on.

How? How do you be a mom in two places at once without neglecting one or the other? It’s not possible and I was failing in my eyes for Savanna and Tristan and it killed me.

The kids were so sweet in trying to comfort me and I sat them down and told them how much it was hurting me to know that I would be farther from them and also that their sister had to go into surgery. I just felt as though all and any control I had of any situation was falling through my finger tips. Dan called and explained what all the doctors said when they came to see her. They were going to need to transfer her since they were the ones that specialized in organ removal and kidney issues. The good thing was is that her creatinine level was dropping and she was peeing more, it was just that her kidneys were getting to big to both be in her. So I packed the kideos up and we headed over to see her. My mom and Carol came to see us and take the kids home for school in the morning and we actually decided to leave and get dinner outside of the hospital.

Then it was time to leave to get back for care. Leaving the kids and saying bye was terrible and loosing it again in front of a restaurant of people was retarded.

As we drove back Dan tried to convince me that I was a good mom and that I was where I needed to be. I could repeat it, which I did over and over, but it didn’t help the ache in my heart. So we spent some time with her and headed back to get some sleep because we had no idea what the next day would hold.

Day 1

We had been just sitting there not really saying much just enjoying the moment knowing we had our baby girl was here and alive and ok, well not perfect but better than expected. But that all changed when the hospital room phone rang. Dan answered it and at that moment it hit me that it wasn’t family and he just sat there not saying much but uh huh, and yep, and ok, and then bye. My stomach sank because I knew it wasn’t good news and it wasn’t. Dan told me she had got a hole in her lungs during them trying to get her breathing and also had to intabate her because her oxygen levels were dropping and carbon dioxide levels were rising. He said he would call in 45 minutes and we could come see her and he would then talk to us.
Ok as a mom or even a dad that 45 minutes of not knowing if your new baby is ok lasts hours, days, and years just trying to breathe not knowing. We sat there and cried together and then we called and was told it was ok to come see her. When we got there I lost it seeing that tube coming out of her mouth and all the other IV’s they had coming out of her belly button and then the tube coming out of her chest was the next to worst thing for me. We just looked at her and cried and then the neonatologist came in to talk to us. He explained all the obvious that she had this tube and that, for this and for that. But then he began to talk about her lungs and her oxygen levels and her carbon dioxide levels and ended with, we are going to try a few more things but don’t be shocked if we call you tonight to say goodbye to her. Goodbye! And don’t be shocked?!! How do you do that, really? They came in and gave her a medicine to put in her lungs over 30 minutes that would hopefully help her lungs to get rid of the carbon dioxide by expanding her tissue and capillaries. Well the down side is it could block her airway and suffocate her to! So yeah big downside but if it did work then she may survive. All in a matter of a couple hours we would know if she would fight thru it. We sat with her until it was all in to make sure she was still breathing and until I almost passed out sitting up and then went back to the room to wait for the blood gas levels to be drawn and results.
I then realized that I had finally accepted that our baby was alive and breathing which they told me she probably wouldn’t and I got to see her, touch her, and fall in love with her all over again. It was then I told Dan I couldn’t lose her, I just couldn’t!! I knew that I may, but I just couldn’t and I cried myself to sleep holding his hand praying she would be ok and I wouldn’t hear that phone ring again. That was about 9 and at around 11pm the nurse came in and woke me up to let me know her CO2 levels had dropped to 50% so in otherwise she was going to survive to live another day!!
I slept so good till about 4am and wanted so bad to see her but knew I couldn’t get up and do it so I asked Dan if he could go see her and check on her. I asked the nurse after he left to bring down her foot and hand print frame down to have them do sometime soon. I fell back to sleep so quick and almost three hours later and I was STRESSING Dan showed up with her frame, a mold of her foot and news that she was doing amazing and her CO2 levels were even lower and her O2 levels were rising. It was at that point that the most stress relieving tears fell that I have ever had.
When I got up I took a shower and ate some food so I could take my pain meds and be more able to be little more comfortable to get over to see her. When Dan took me in to see her she looked so much better. We spent a long time with her and went back to the room and family had all shown up and Bev who wasn’t able to come yesterday because of the snow. We took runs back and forth. Some with both of us but I started to not feel good so I took a break for a while but the last trip was my mom and dad so I went. But when we entered the room I could tell something wasn’t right. Shortly after we came in the doctor came and said that her oxygen levels were dropping and dropping fast and her oxygen levels were as high as they could be on the ventilator. SO again they had to make us face the reality that her lungs just weren’t working they way they should and may not be long before there isn’t anything else they can do. We all sat there for a while, me in shock with no tears. I asked my mom to go tell everyone in the room and we would be there soon. It was then in the silence with Dan watching the oxygen levels going nowhere that the tears finally broke free.
We went back to the room to everyone and the tears around the room and we prayed and held each other and the door opened and Susan, Faiths nurse entered the room and my stomach and heart dropped. She came up to me and said her oxygen levels were back up and her CO2 levels were going down. She couldn’t even finish the whole explanation before for the umpteenth time I lost it. She again proved the doctor wrong and was fighting to be my baby.
Te rest of the night was perfect and she did amazing! Our baby girl was fighting and was known as the “fighter” in the NICU. Because from the moment she has came into this world she has fought. Fought to breathe, fought to survive, and fought to prove the doctors wrong that said she wasn’t strong enough. My sweet fighting little Faith!!

Hospital Part 2

The morning started off with a bang. They gave me a total of three doses of the pill to ripen my cervix and would wait on the petocin to see if I needed it to start up the contractions, but the way things were heading they didn’t think I would need them since I was contracting pretty regularly every 10 minutes or so and they were pretty strong. The nurse came in and gave me my last dose of the pill and I went to the bathroom and I don’t know what it is but once I came out they hit and hit hard. They were happening every 2-3 minutes and not slowing down.
Now the weather was great to say the least and we were watching the storm and wrecks everywhere from the snow and none of either of our families were here yet and some weren’t even on their way yet so we began to wonder the way things were going if they would even make it. The nurse (Joanne) I had for the day shift was AMAZING. She was so sweet and encouraging to both of us. One of the times she came back in she informed me my platelet’s were low so they would be coming back to draw my blood again. The main reason was because if they lowered anymore which at this point they were 142 then I may not be able to get an epidural. Yeah no pain meds!! So began to freak out. They had two anesthesiologists and one of them wouldn’t allow me to get one if I dropped below 150 and the other wouldn’t if I dropped below 100. When she came back with the second draw results it had dropped again to 104 so she said she would go check with him and see if he would or could. I really don’t know how you take someone telling you may not get anything for pain in one of the most painful situations possible.
She came back about 15 minutes later and by that point I was in so much pain I really wasn’t functioning during contractions. The doctor on call was the one that allowed epidurals with counts as low as 100 luckily so they began the whole set up for the procedure. From my stand point it took forever for him to set up and finish. Mainly because the whole time I had to sit up, sit still, and lean over in a ball, all the while I was contracting. PAIN!!! When he was all done I waited and waited and finally the contractions went from a 10 to about a 4, which I would take any day from what I was feeling. It was then that everyone finally showed up, Dan's parents, Jordan, sister and her girls, my mom and dad, Gus, Mel, Mona and Tabby. Aunt Twila was on her way to and was going to pick up the kids on the way to the hospital from Ryan since they were at home playing in the snow.

Everyone hung out in the room with me until or should I say until I remember, till the contractions started to get so bad that the epidural was slowly not working. They called for the doctor to come check me and only the right hip was all that was numb at that point and everything else I could feel. The worst pain though was right in my pelvis which I knew was her head trying to come out but she was stuck. He gave me three more doses of medicine right into my IV and Dan was pushing my button for more meds over and over but NOTHING was working. So the doctor was gonna just put in a new epidural so the nurse thought it was a good idea to check me before hand. Well, she did and I was fully dilated and she said” ok it’s time to push”. I lost it, for many reasons, one being the pain I was in and the pain I knew I would have to go through, how scared I was to do it with no pain remedy at all, but most of all because I didn’t want to have her. If I did then she wasn’t safe in me and would have to deal with how much she would be able to fight and handle once she was cut from me. Dan held me and cried with me and kept reassuring me I could and she would be ok. My mom and sister cried to and tried so hard to encourage me. But no one could take the fear I was feeling away. As they had me start pushing it was a pain I could not even explain but puts every pain I’ve felt look like a day at the spa. After about 40 minutes they had me move to my side, oh but this was after they had to take a mattress from under me. So if I wasn’t in enough pain I had to deal them moving me around. They said she was turned on her side and not able to get down so I laid on my right side to push and push I did. I wanted to stop so many times and didn’t want to go anymore, because of exhaustion but also because the pain just got worse with every push.
She was finally ready to come so thy called the doctor in, which I will be writing a letter to complain about. She was MEAN!! First was the fact she yelled at my family to stop taking pictures or should I say “the flashes need to stop!!!”. Then when the head was coming she had the nerve to tell me not to push, and last but last but not least as she was coming I began to freak out from the pain and she told me to get ahold of myself. Now had I been able to move I probably would have kicked her. Was miserable.
Then she was here. She came out and tears filled the room but all I could think was, cry baby cry. She looked at me and they took her away to clean her and get her breathing. Dan watched her before they took her into NICU and told me she cried over on the table and made a few more noises. I was so burnt out and did not feel good but finally got ahold of myself and they brought first the kids in. They were so sweet and so concerned but at this point we still didn’t know how she was. Then the nurse came in and said she was breathing!! They had her hooked up to a C Pap, which is a type of ventilator but she was breathing. It was such a relief I have been carrying for so many months that Dan and I broke down and with every person that filed in the room to hear that she was still alive and breathing the sense of relief and tears filled them too.
We have all carried such a burden since the news of not knowing if I would even have a minute with her. The nurse then came in about an hour later and said we would be able to go see her so I rushed like crazy to get my robe on and be ready for her and then it was time!! Dan pushed me back with the nurse to the NICU and there she was. Surrounded by nurses but they moved aside and I saw her face. She was so beautiful!! She was making a half cry noise as they all probed at her and then they gave her a Vita min K shot and then I heard her cry. It was the sweetest noise to hear. I just sat and stared at her until they told us they needed to do some more things to her. It was so gut wrenching to leave her and went back in the room to tell everyone how beautiful she was. I
I was able to tell them my baby girl was beautiful and alive!! Words I never expected to say.
Everyone stayed for a while but left one by one and we sat there in silence with smiles knowing we were parents now to a beautiful baby girl and then the phone rang.