As a family we will walk through this difficult time together

Friday, January 28, 2011

A Whirlwind 24 Hours

What a crazy nightmareish 24 hours it has been. I woke up yesterday morning dragging as usual because I'm still not able to sleep and every days worse since it is just compiling. I got the kids up and going and my little boy decided while I was showering and doing sisters hair he would make eggo waffles, put them on a plate and get syrup on them for her and him. Was so sweet. Well then it was off to drop them off and back to get ready for my run through of doctors appointments for the week.

Of course I was running late and my wonderful mom met me there for support. First was the NST and she was moving like crazy (which her movements HURT most the time) and doing what she needed to do to look healthy. Then it was out to wait for the ultrasound check. These I dread and love at the same time. The NST's I could do all day just to listen to her heart beat but the ultraosunds always have the reality attached to them, although I get to see her alive and moving.

When she called us back its always the "how you doing?". Do you answer honestly with all the emotions your feeling or the quick half fake, ok? Well I opted for the ok and laid down to start the check. She began by looking for fluid. Now last week I left feeling better because her fluid was about 4cm which was a little bit higher (which could have been just her position, but staying positve). This week, well she scanned, and scanned, and scanned some more and couldn't find any! My heart sank and I mean sank because in a way I had my hopes up it would either be just as high or maybe higher. Well not the case. So from there we watched for small motor movement which she was opening and closing her mouth, so cute! Then we watched for practice breaths. She took a couple short and then nothing for a bit then a bunch in a row. Its amazing how just watching that I felt the warm tears run down my face. After that we looked at her bladder and spotted one small and mean small pocket of about 1cm of fluid up by her shoulder.

Then is was out to wait again to see the doctor. Now this marks my last week of seeing my regular doctor, which I've been switching to every other week since she is a christian and actually leave with some encouragement and a feeling that I'm just not another chart. We went in and asked all the questions and left knowing it is all just a waiting game. With a TON of prayer involved to keep me sane enough to take care of myself and my family.

We went to lunch at one of my fave restaraunts Olive Garden and had a coffee with my sweet aunt before I headed home. I was so wore out but at this point I had to pick kids up in 15 min from the bus so I basically laid on my side collected myself and to my shock my Dad showed up. It was like he read my mind and offered to take the kids home and to Awana that night. LOVE him! So off they went and I went to lay down.

Well then the yuck begins again. As I lay there trying to fall asleep which takes me FOREVER. I hear this awful screaming noise and my dogs in the kennel start barking. Well I jump up to find my brothers bulldog dead on the back patio. She is not my dog but I go into complete panic mode. First I have no idea what to do with her, with me. At this point I'm shaking and balling so I call Dan to see where he is and the poor guy thinks somethign happened to me. He told me to call Gus my brother but there is no way I can tell him so I call my Dad. I can't even talk which scares him too and finally I tell him and ask him to call Gus. For you who don't know my Dad he is in LOVE with dogs and especially bulldogs, which he got Koda for Gus, and had just spent 20 mins loving on her before he left. So basically the rest of the evening was terrible and full of tears and trying to comfort my brother which has never lost an animal before.

That night I didn't sleep at all and woke up with puffy crying eyes and bags from no sleep...not so cute. But again my sweet boy decided he wanted to make breakfast and he chose pancakes. So I showed him how and he mixed it all up, made them, and even put everything in the dishwahser and cleaned the counter! So as I watched him I decided to check facebook. About a week ago I was contacted by a lady named Liza that is one week behind me in her pregnancy, having a girl, has gestational diabetes, just found out her baby has arpkd too, and was so lost and hopeless just like me. I talked to her tried to encourage her like others had for me and we talked almost everyday. Well she went into labor during the night and ended up having her early this morning and she passed away shortly after birth. It hit me so so hard becuase we were so alike in all our situations with out pregnancy and she lost hers. I know I shouldn't compare or loose my faith but I can't get it off my mind.

It all goes back to the fear of actually going into labor because you have absolutely no control or idea what the end result will be. That is all in his hands and so hard on days like this to be ok with. So I continue to pray for my faith in his plan, my Faith in my belly, and now Liza that has suffered the loss I am so scared is going to happen to me.

Wednesday, January 26, 2011

One of those days

You would think on a day like this in Washington when its actually sunny and not raining my spirits would be up and I would have a good day. But for some reason I just couldn't get out of this funk all day. Like I was stuck in some nightmare or something, just felt out of it and on the verge of tears all day. I am sure a lot has to do with how tired I am.

I met my amazing Mom Aunt and Grandma for lunch since I had to go to Costco and a couple other places. I really wanted to spend the time with them but was just one of many days I didn't want to be in public. Because in public random people ask the questions that when your in my position you just don't want to say. Some days I can act all fine and happy when people, and seems like everyone, says" oh your so cute, when are you due? What are you having?". But today it was like a knife to my heart everytime I had to put on a smile and answer as if nothing was wrong with my sweet baby girl and I was excited to have her soon. The fact of the matter is I'm scared to death to go into labor because then the reality will be upon us.

After we ate lunch I decided to walk through Michaels with them hoping to get my mind in a better place, but it was as if I was walking in a daze. And then my Mom held up a rubber ducky that said girl on it and I couldn't contain myself and had to walk out. For the most part I've been doing a lot better lately but the last two days I have felt so alone and depressed. Then not being able to turn my brain off to sleep makes it even worse because being exhausted when you are already low is not a good combo.

Tomorrow is my first doctor appointment of the week and the last time I will meet with my OB that always gives me some hope. Then Friday I am starting full care at the specialists and appointments almost every day next week with other doctors. So again it begins not being able to gget anything done and being back on the roller coaster.

Monday, January 24, 2011

The days of no energy and doubt

As I sit here tonight so exhausted I can't move, and if I did my body hurts so bad I look like a half crippled old lady trying to walk. I had to hire a lady to come help me clean because I have about a half of ounce of the energy I think I have and none of the energy I normally would. For me it is so so very hard to sit still...which has been in me since I was born. So to have someone come clean and expect me not to do something to is near impossible.

Now should I have done half of what I did today? No! But for me its so hard because at times like today I feel like I can't do anything right to help my baby girl so the least I can do is try to be super mom, wife, daughter, friend, in all I feel a constant ache of failure.

Why? Why can't I do something to heal her? I'm the one growing her inside me so why? I know she's strong because my body and inside are feeling the brunt of her strength, so with both our strengths why can't she be ok? But then again why not?

I went to bible study this morning and got lost in tears numerous times watching her speak on the dvd. I have always been a person who hates to cry in front of people but the strength to keep tears in this past month is really getting to me. As I sat there listening to the message it was almost as if it was planned to play today for me. She talked about how God will bring you through trials to make you more beautiful, so much so that you won't recognize the woman in the mirror on the other side.

In hindsight I know the strength I am getting from this terrible trial will make me stronger. I just wish I knew Gods plan in all of this. Cause I know Faiths life will change and touch lives, I know that! Its the how that scares me. So I loose sleep just laying awake holding her now, rubbing her back and watching her move against my hand. I sing her the songs and pray to her goodnight. All in the hopes that ill be able to do it soon without the barrier between us. For how much I love my baby girl!

Goodnight and sweet dreams, because you are my sunshine that makes me happy, my sweet baby Faith

Saturday, January 22, 2011

Our visit with pallative care

This last Tuesday we had appointments all day again so Dan took the day off to be there with me. Our first was a visit and consult with the pallative care team at Tacoma General. What they basically do is set up the plan with all the doctors and teams of people that will be there to help our baby Faith live. It was one of those appointments I knew I wanted but knew it would be hard because you have to go over what you want if she is passing away.

When I first talked to Teresa on the phone I was in tears cause she was the first doctor besides my regular OBGYN that had care in her voice. So when we first met face to face I was not surprised when she was so sweet and caring. She began asking family history, religion, and the basics but then the ball in your throat questions started.

See this last Monday was my birthday, and it had been the longest I was away from my kids since I have no idea when and it hit me that I will be leaving them when I go to the hospital and not idea how long for. So when she started asking what my plans for our kids were it hit me like I was hearing it for the first time. All I want to do as a mom it protect my kids so knowing they are gonna have to be witness in some extent really started hurting me. Dan was so sweet cause he could tell what questions were gonna be tough for me so he kept just grabbing my hand or rubbing my back. But in all those hard questions I left knowing she was going to be in hands of people who knew what they were doing.

So here we are today set to meet with doctors and have appointment after appointments, all in the hopes our baby girl is ok. So please please pray for her, for us and our family and a miracle for our sweet and strong baby Faith.

Mommy loves you

The beginning of doctors visits

Well when found out the terrible news it was December 29th and we were sent to the Lacey Mary Bridge that next Tuesday for one of our now weekly ultrasounds. We went in there hoping that maybe when the specialists met and looked at the ultrasound pictures that maybe they would come to a different outcome. Well this was our first meeting and visit with Dr. Brennan. She was nice and the ultrasound wasn't quite as painful, but we still had to hear news we didn't want to hear. I got all dressed and went into her office and sat across the table as she explained that, yes we are sure this is what she has, that her fluid is still low..so low that we were watching her lick the amniotic sack during the ultrasound, her kidneys are enlarged and look like pkd kidneys, and her chest is measuring about 2 weeks smaller then it should.

So then the, what I will expect, conversation started. I will be coming in weekly for ultrasounds to make sure nothing else is changing, fluid level, and see how she is coping. I will be being induced up at Tacoma General at about 37 weeks unless she is in distress before then. And of course we don't know if she will survive. I was also then told to keep a log of her movements and if there was any change to go to the ER immediately. Cause just like that she could crush her cord and be gone as fast as a light switch. You would think I would be a pro of taking news like this by then but do you ever?

So as we walked out of the appointment all the hope we had was crushed and taken away. Its a double edge sword when it comes to this because you want to keep up hope but how much can you have? And week after week of hearing it over and over that you probably won't have a baby to take home, but in the rare chance she does breathe expect weeks in the hospital and biweekly visits back for dialysis. Faith I need to have Faith! Literally and emotionaly.

That week I went back to my regular doctor for the 3 hour glucose test. There are only a few things I'm petrified of and needles are one of them. So in the midst of all the other things I was made to sit in a doctors office for 3 hours getting poked and watching pregnant moms come in and out. Makes me sound so selfish but it was the most difficult thing sitting there watching families come out of the ultrasound room just finding out what they were having...which everyone was a girl, and listen to all their excitement. Just thinking that was me not so long ago and why can't I be her? It took a toll on me and sent me into a couple days of depression again. Then on top of all the other things I needed to log and keep track of I now was told I have gestational diabetes! In the grand scheme of things its not that big of a deal but another thing to have to keep track of and do as if I didn't have enough.

The next two weeks were the same thing. Go in with hope and leave with reality.

I was lucky enough to come across families from the PKD facebook page that gave me encouragemnt and questions to ask. And of course a circle of family and friends that have been praying for us and sending words of encouragement. With without that I don't think I would be having good days. Don't get me wrong I still have my days were I'm at rock bottom and in tears, but in between those I do still have my moments of joy and hope and of course FAITH. Joy with every kick I feel and every hiccup I see on my skin, everytime they start the ultrasound and I get to see her heart beat and hear it racing. Yes I have Faith God has a plan for her, I just hope that plan is having her grow in my arms not just in my heart.

Friday, January 21, 2011

The news that changed our life

As the doctor started to speak I was still a little light headed from having to lay on my back for so long, that it almost felt like I was in some movie. And this movie was gonna turn into a tear jerker sooner then I knew. She began by saying " Well her kidneys are enlarged and don't look right as you know." I did know but to what extent and what that meant I had absolutely no idea. She began to say by the all the signs, which included...the low amniotic fluid, the enlarged kidneys(which had spots that resembled pkd cysts), a empty bladder, and smaller chest. That she is 95% sure she has ARPKD.

I thought I had heard a lot about medical terms and issues but when she said that I was confused and waiting for some explanation. Oh what an explanation she gave. With this it takes two people with the recessive gene to have a baby with this. And with her having this and the fluid so low she most likely will not be able to breathe when she is delivered. They will try to give her oxygen but unless her little body is able to absorb the oxygen she will pass away right after delivery. If...she is able to breathe(and that is a BIG if as she so nicely put) she will most likely need dialysis and or transplant, so there is no telling how long her life will be.

I sat there knowing I wanted to know something, but I sat there with my heart on the floor and in such shock I couldn't even open my mouth. She just looked at me and Dan and asked if I had any questions. Questions? What do you ask? Besides a big fat WHAT!? I don't really remember what I asked besides is there anything I can do? And no there's not, just wait.???? Go in every week to make sure she's still alive and hope that when she comes into this world she will survive. And as she told me over and over there is no way of knowing if she will.

At this point I was still in such a state of shock no emotion had hit me until she said that I will need to have her at Tacoma General so that they can 'try' to save her. At that point I asked is there any chance its something else, and then like a semi truck it hit me and I lost it. She told us she was sorry, set up our next appointment and let us leave. I remember walking to the car and not even knowing how my feet were moving or how I was able to stand. The 2 hour ride home I cried for part of it and just looked out the window not saying a word, because really what can you say? My Dad called and asked how it went and I got out..."not so good", before my heart really started to break. He asked if I was gonna be ok, and I said yes but our little baby girl was probably not going to survive and if she did probably not for long. It is a lot different when you have to say it outloud.

As we turned down our road all I could think about was what am I gonna tell the kids. They were luckily taking a nap when we got home. So I went and laid in bed just staring at the wall unable to move for almost 2 hours. Then my sweet little boy came in. He is so intune to when I'm sad and I had just stopped crying when he opened the door. He crawled up into bed with us and laid on my chest. We sat in silence for a while and I noticed he was crying. At this point I had not told him.I asked what was wrong and he looked up at me and said " I'm scared I'm not gonna have a baby sister." Oh my sweet little man broke my heart. We all just sat and cried, and kept saying we are just gonna pray and hope God heals her sick little body.

Luckily I have the most amazing family so my Mom offered to take them for the night or however long we needed. The sweetest thing though was when my mom was there to get them I asked Tristan what he wanted to do. If he wanted to stay or go to Grandmas, and he hugged me and told me ' what would you want me to do?' I am so lucky to have such amazing kids with hearts of gold. That night Dans mom dad and jordan came and brought us food. But other then that we just sat in the bed not watching tv, not reading a book, but just staring at the wall with the occasional breakdown.

The next few days were just as hard if not harder because word started to travel that things were not well. And bless our friends and families hearts they called, but as I said before saying it outloud was way to hard so I basically lived in a texting world unless I had a strong moment to call a sister or friend back.

As each day passed they each held a moment of strength in them but I was still not ready to be around anyone. And it seemed as though everytime I would pull myself together she would start kicking me to remind me that she was still there.

It is quite a conflict when you are in such mourning for a baby you haven't lost but also unable to get excited because you have no idea if you will ever be able to watch her grow. It was the next day in my silence that the naming issue for our little girl became an answer from God and as if I had been looking at a name book(which I wasn't , just the same wall) her name came to me..
Faith.

Thursday, January 20, 2011

So the story begins

I started this blog mostly for myself to vent and to maybe be the support to someone who may be going through something like this that has given up hope. I have tried writing with a pen and paper...didn't work since I couldn't write as fast as my mind was going. I tried videoing myself but couldn't handle watching myself talk, so in the midst of my trial I was introduced to a Mom that had started a Blog to tell her story that is allot like mine.

I will begin with the month of August or maybe it was July. People who are close to me know the back story of all the hard ships I've had to endure the last few years with the multiple broken hearts and dreams but as I say what doesn't kill you makes you stronger. So I am basically I am stronger then I knew I was but still not as strong as I want to be. In August I was shocked and surprised I was expecting. Not at all planned. We put together a fast wedding in 5 weeks. For a few reasons one I wanted to actually fit in a dress since I would be almost 3 months on the wedding day, I wanted to raise the baby as a family the right way since I had already done things I shouldn't have, and also I didn't want my kids knowing we were going to have an addition until we were married. SO on September 18th I walked down to my Love and started on our path together as a family.

From the very beginning of the pregnancy I was not feeling good. I never had morning sickness with my other two which I had it BAD with this one. I was having allot of issues with my varicose vein in my left leg that made me have to wear compression tights all day or I couldn't stand. And I just felt like something was wrong, but I thought it was all in my head because I was older and the health issues I had dealt with before. Well intuitions a weird thing when your a mom.

The first ultrasound hit me that I was really pregnant not just sick and old. To see her moving around gave a joy in my heart I can't explain but as a mom most can relate. My sister Bev was able to come along with us and video and my mom was in the room with me and Dan. When we left the ultrasound room my mom fell into tears knowing it was such a miracle to see it happen again.

Dan was so happy and beaming like he was floating on air. Just knowing and seeing how healthy "it" looked. Each appointment was fine and without any complications till out in depth ultrasound where we were told we were having a GIRL!! Dan got his wish and we were all in tears. Chris, my mom, dad and the kids were there too. At my next appointment the following month the doctor told me the placenta was low lying so I needed o come back in 3-4 weeks to see if it had moved. Of course I couldn't wait 4 weeks cause that would make it after Christmas. So the week of Christmas we went in to see if it moved and it did! BUT along with that my amniotic fluid was low. If it wasn't one thing it was another. So Dr. D told me to take it easy lay on my side as much as possible and drink a ton of fluids....well of course that was the week I got the flu.

I came back that Tuesday after Christmas to check with my mom since Dan needed to work and thought it would be just a normal visit. Well she began the ultrasound and said the fluid was still low, actually lower and her kidneys just didn't look right. Didn't look right?! To sit there and hear that was confusing to me because she seemed just fine. So we went to the room to wait for the doctor to come talk to me. I was trying so hard the whole time not to loose it just hoping something wasn't wrong but knew there was. She came in and said she looked ok but because of the fluid level and kidneys and the fact her bladder was empty I needed to go to Silverdale to talk to a specialist in the morning. My mind went blank and my heart sank. Almost as if every emotion had left me.

When I got home Dan was in tears but at that point it still hadn't hit me till my mom called to ask if she needed to drive me there. And then the tears came and came and came. I was so scared because I just knew something was wrong. No sleep came to me that night just tears and worry. On the drive up there I stayed hopeful knowing something was up but thinking maybe if anything I would need to deliver early or something. When we got there I had to lay on the sonogram table for almost 2 hours on my back. As a pregnant women most would know how uncomfortable that is and how sick I was getting coupled with the anxiety I was feeling. She probed and prodded me and hurt so bad the whole time not telling me a thing just looking and looking keeping me in such a state of suspense I almost wanted to yell at her to tell me something...anything. Well she finally went and got the doctor who came in looked some more and all she would tell me is "I can't tell you at this point till I look at it all, but her kidneys don't look right". Oh that was such a help! NOT!

We were then lead into a conference room to wait for the doctor to come talk to us. We were in there for almost 20 minutes and what a wait it was. We barely said but two words to each other. And then the doctor came in. She sat down and just looked at us and started with "Well....and then the news came and what news it was.