Sunday, November 27, 2011

You Are What You Love.

Dear Stella,

I have been meaning to write to you for awhile now. I feel like you already know what I'm thinking and how I am feeling. You are (literally) right next to my heart 24 hours a day. I will admit to you that I am scared, but I'm sure you already know that. There is this part of me that feels like I cannot do this. It scares me to feel this way. I have such extreme "mommy guilt". If I need a few hours away from your brothers or don't have the energy to read them a bedtime story at night, that guilt eats away at me. Your daddy is always reassuring me that I need a break sometimes and I have to chill out. I know I can physically go through the delivery and taking care of you while you are recovering but emotionally I want to crumble when I think of you in that hospital bed. I have guilt that I did something to cause this to happen to you. All the doctors reassure me that it just happens, we were the 1 in 1000 that it happened to. More like YOU were the 1 in 1000 it happened to.

I am scared for the pain you will endure after you are born. The surgeries, needles, and poking and prodding you will endure. If I could I would do all of it in your place. You should be in my arms but you will be in a hospital bed. I promise you to stay by your side as much as I can, I know your Daddy feels the same way.

I feel like a part of his heart is broken for you right now. He doesn't like to talk about it. I think he feels sorry for me and wants to support me so he doesn't want me know how much he is hurting. We try to explain things to your brothers but they are blissfully unaware of whats going on. Maybe that's how it should be. Roman is especially afraid of hospitals and doctors so I think if I went into too much detail, he would be frightened. He is excited for you to be born. He likes to go into your nursery and look at your stuff. Finn still kisses my belly and hugs it every night and when we went shopping he kept grabbing girls clothes and saying "For baby sissy" They love you so much and I know you hear them singing their good night song to you every night. "Good night Stella... good night Stella... goodnight Stella it's time to go to sleep"

The out pour of love and support has been amazing. You are SO loved and you aren't even born yet. Tomorrow we enter into the third trimester. With the busyness of Christmas, New Years, and Daddys birthday, these 10 weeks are going to fly by. I'm sorry in advance that I won't be able to hold you after you are born. I will do everything I can to take care of myself and be out of the hospital to come see you. Your Daddy will be there with you as you go to Childrens Hospital and he will be there during your first surgery.

I have so much else to say but I will save it for another time. I promise to write to you often so when you are older you can look back at the journey our family traveled to have you in our lives.

I love you,


Friday, November 25, 2011

I will start off with alot of the things that have been going on in our lives. Finn turned 2! I cannot believe he is already 2. In some ways it just seems like he has always been here but I can still remember being pregnant with him and him being a tiny newborn! We celebrated with lots of presents and a great dinner. I didn't have the energy to put together a birthday party like Romans, but at 2, kids are pretty happy with however you celebrate!

We haven't had many appointments in the last 3 weeks. It's been a nice break. We started buying baby clothes and moved Finn into Romans room. We plan on starting her nursery soon, as soon as I can find a perfect purple paint! The day I cleaned out the room I became very upset and anxious. I know we are supposed to be doing all the normal preparations you do when you are expecting but it just really upset me the thought of her not coming home.

On Wednesday, Sam and I drove down to Seattle for a day full of appointments. First we went to Children's Hospital for a tour. Everything was going great and we were chatting with the genetic counselor. She wanted to show us the ICU and I was totally fine with that. We took about 3 steps in and I almost fell to my knees in tears. I just couldn't be in there. Just being in there was so surreal and knowing our daughter would be in there was overwhelming. We quickly left and after a few moments I was able to finish the tour. We saw where she will do most of her recovery, after ICU. Each patient gets there own room and bathroom, which is nice. We saw different playrooms and resource centers. After the tour, Sam and I went and had lunch and did some Christmas shopping for the boys.

At 2pm, we went to UWMC to their Maternal Infant Care Clinic. First, we had another ultrasound. This took over an hour and I was about to fall asleep during it. The main areas they wanted to see were her ventricles, to see if the fluid on the brain had increased. They had only increased a few millimeters. This sounds good but she will still most likely need a shunt. Next, they wanted to see her growth. She is in the 65th percentile, which is perfect. Next, they wanted to see if her feet were clubbed. At our last ultrasound they weren't clubbed but I read online that can change. Unfortunately, they think they are now slightly turned in. This means additional surgeries on her feet and casts/braces while she is little. But thankfully these surgeries and therapies work and her feet should be fine as she grows older.

We met with a neonatologist. We just talked about pretty much everything we already knew. He said "If I had a grandchild with this, this is the scenario I would want. Her chances of walking are good and with good medical care and therapies, she has the chance for a high quality of life." This is all fine and dandy to hear but I'm not sure how it makes me feel. She still will have many surgeries which have side effects and until she is born, we just don't know. Obviously I am hopeful and know she is gonna be fine but I'm still scared.

We met with a social worker who talked to us about Ronald McDonald house. The place sounds great and we are thankful it's within walking distance of the Childrens. They mentioned we might need to be in there up to 4 weeks. If that happens, after the first 2 weeks the boys will come back from Longview and stay with us. Praying her recovery goes good and we are back home as soon as possible.

Finally we met with a high risk OB. We talked more about my pregnancy and c-section. I'm happy they are going to schedule the c-section at 38 weeks and not 39. Finn was born at 38 weeks and they do not want me to go into labor here so at 38 weeks I will go down, do an amnio, and pray her lungs are ready. There is so much planning going into this and I really hope she will be ready then. With Sam taking time off of work and my parents doing the same to come up and take the boys, I'm praying everything falls into place.

I'm sure I am forgetting a million things we learned that day but we were on information overload! It was also the day before Thanksgiving and we were eager to get home to the boys and the weather was horrible! I started seeing my Bellingham OB every 2 weeks now. We will go back to Seattle the 2nd to last week of January and schedule to c-section and do a tour of their Labor & Delivery. We are also meeting my parents that day to have them take Buckley home with them. It's honestly so sad for me to think about but it makes our "birth day" easier knowing he is there. He will come home with us when we get Stella home from the hospital.

We had a great Thanksgiving at home, just the 4 of us. I got tons of Christmas shopping done today for the boys and all of our Christmas lights for Sam to put up! I think we are getting our tree in a few days, which I am so excited for. I'm frustrated with having horrible back pain all day long. All I can do is pretty much take Tylenol, use heat, and stretch. I had this with the boys but not till the very end of my pregnancies with them. She's just chillin' down in the pelvic bone area pushing on every nerve she can. I try to be a super active momma and keep my kids busy all day but now I have to take breaks every 20-30 minutes to rest.

So if she does come at 38 weeks, she will be born on February 6th, my 27th birthday. I remember when Sam and I celebrated my 20th birthday! I think this will be by far my best birthday with the birth of our 3rd (and final) child. I hope and pray everyday that she will make it through all that she is given and be the light of our lives

Wednesday, November 2, 2011

Just like autumn leaves, we're in for change

Today has been a surprising emotional day. It's been 2 weeks since our last appointment. We left Children's Hospital that day really hopeful and positive. The last couple of weeks we have really accepted everything and focused a lot on the boys and making Halloween special for them.

Today when I checked the mail I became overwhelmed. First of all we got the notes from our visit with the doctor at Children's. He will be one of the doctors caring for Stella after she is born. The notes were great. Very detailed. They pretty much went over everything we talked about the whole hour we were there. There was nothing in the notes that was surprising or that I was taken back by. I think just seeing HER diagnosis, written out like that, hit me hard. I read all the time other blogs and websites where mothers and fathers write their diagnosis/experiences. It really helps me. There are other parents out there, getting the news the same time we did. Also, seeing families who have had their children and now they are thriving is inspirational.

I am once again back to that scared place. Not as much about the long term obstacles but just making it through the pregnancy and c-section. I worry endlessly about my child, who at a few hours old, will be under anesthesia and undergoing a surgery that can take up to half a day. Then, after that, endearing brain surgery.

I am trying to learn through this process. I have to learn to give up control. Even leaving my kids for the day to go to a doctor appointment is huge for me. I am such a control freak when it comes to my kids. Now knowing I will not be taking care of my newborn is not settling well with me. I know she will be in amazing hands but not being there at first, I feel right now, is gonna kill me. I know this is what has to happen and I am hoping with time and lots of prayer, I will get to a good place with this before the delivery.

Next, I opened a bunch of new doctors bills. I am trying not to think much about the financial aspect of all of this. We would pay anything and do anything for our kids and especially when it comes to their health. It's just overwhelming seeing the bills. We are blessed that Sam has great benefits through his job and that we have access to these amazing doctors.

I love the band TV on The Radio. They have this amazing song "Province" that I listen to on repeat 10 times a day. It also has back up vocals by David Bowie. It's pretty perfect. Here is my favorite verse of the song. I've loved this song for years but just recently realized how I think this song was written for us.

Hold your heart courageously
As we walk into this dark place
Stand steadfast erect and see
That love is the province of the brave

Anyways, for tonight I am just sad. I am sure I will wake up in the morning back to the usual optimistic, hopeful self I try to be. I think I need to remind myself that it's ok to cry. I think we all look to the future and have a plan when that plan is no longer an option, you have to grieve that loss. We will still be the same happy, normal family but with a new normal. We are gonna have a daughter and that is pretty flippin' exciting.