Mother's Day!!!

For past few days I have had this over whelming sense of how truly blessed I am. I absolutely love being a mom!!! Even when my kids are yelling at me that they want a new family, putting their clothes in the toilet, telling me how unfair I am....while these are not my favorite times, I still love being a mom. There were so many moments over this last weekend that I just stopped and thought to myself, I am so lucky for the life that I have. I grabbed my kids and hugged them over and over, telling them how much I loved them....to the point that I 'm pretty sure they thought I was crazy, but its all I wanted to do. 

I admit that there have been times this last year that I have been ready to throw in the towel, give up, get in the car and drive away from everything and everyone. There have been days that I have cried and thought life really isn't fair, why do I have to go through this (yep, I'm human). There have even been days that I have thought, why in the world am I wasting my time praying when it really doesn't seem to be doing much good. But when I look back and think of everythingI have learned over this past year...I feel truly blessed!

I was thinking today about where I was last year at this time. Spending my days trying to balance spending time with my kids at home and spending time with Brooklyn that was in the hospital an hour away. If I spent too much time at the hospital I felt guilty for neglecting my other kids and when I tried to stay at home more I yearned to be at the hospital with my new baby (an ache that I think only a mom truly understands).

I remember being at the hospital and having the staff bring me a mother's day card and it meaning so much to me. Brooklyn was in a room with 4 other babies and I got to know that other moms. We all had an unspoken love and support for one another. It was also on Mother's day last year that they started giving Brooklyn a bottle after she passed her second swallow study. It was a big step because it was one of the things she and I had to master before they would send her home. I remember going to the hospital the night of Mother's day so grateful that I got to feed my baby (she always ate better for me than for the nurses). Honestly those days spent at the hospital were full of questions and worry and I had no idea what I was in for in the future. 

I had no idea what this sweet baby would bring to me, my family and to many of the people with which she comes in contact. This time last year I was so full of guilt, worry, stress, and fear that I couldn't see the truly amazing blessing that I had been given.  While I wouldn't wish this situation on anybody, I also wouldn't change it. Brooklyn has given me an eternal perspective that I never had in that past and one that I will hold onto forever. She has taught me more about the love of our Savior and the love of so many good people on this earth, people that I'm close to and people that have only heard my story and I have never met. I can honestly say that while I have been through some hard times, I have never felt so loved in my life. The Lord allows us to have trials, but he also stands with us through them and allows us to lean on him when we are ready too. I have a feeling that he sighs and laughs a little every time I pray now, because I tend to try and negotiate with him....but I have learned that while my prayers are always answered in the way I want or think they should be, it doesn't mean that He is not listening to me. So the fact of the matter is that I am so blessed to be a mom to 4 amazing kiddos. You learn lessons as a mother that you can't really learn any other way. 

1st Birthday...

Brooklyn had her 1st birthday on Easter. It seemed appropriate to celebrate the life of my angel baby on the same day that we celebrated what the Savior did for us. I'm so grateful that he made it possible for all of us to return to him and that he truly knows what she and I have gone threw. I know that because of our Savior Brooklyn will be whole one day and the she will have a brain that we will all be jealous of. 

One of my favorite quotes is from a talk by Elder Jeffrey R. Holland in which he said:

I can't believe that it has been a year since our adventure together started. I have learned more in the last year about pure love, patience, faith, prayer, sacrifice, long suffering, the medical field, joy, sorrow, compassion, grace, thoughtfulness, service, and generosity than I think I learned in the first 30 years of my life. I'm honestly so grateful that the Lord entrusted me such an amazing, sweet and strong little girl. Our family wouldn't be complete without her and although our lives have drastically changed since she joined our family and we feel so blessed that we get to constantly be surrounded by her sweet and strong spirit. Brooklyn has truly given me more of an eternal perspective than I had ever had before. 

It wasn't the typical 1st birthday...no digging in the cake, or even getting to try any cake for that matter. But she was surrounded by so many people that love her and had lots of help blowing out her candle and opening her presents! 

My sister surprised me with a slide show that she made of Brookie's first year. I started crying before it even started playing and continued to ball through the whole thing. At first I was hesitant to share something so personal to me, it is such a perfect depiction of her and her life that I changed my mind. It is sort of long, but I hope you love it as much as I do!

curve balls...

4 | 20 | 13

The day that began the biggest and most rewarding challenge of my life. I was scheduled to be induced to have our forth and highly anticipated baby. We knew that we were having a girl and my pregnancy had been pretty much the exact same as the other 3, ultra sound didn't show anything abnormal except that she was a little small. All and all everything seemed to be a repeat of my other 3 pregnancies. I was hooked up to all the machines pumped full of pitocin and waited and waited and waited 14 hours until my body was ready. Dr. Jacob was amazing and patient, he even slept in the next room waiting for me to be ready to deliver even though his shift was over a couple of hours before. (Incidentally he almost missed the delivery because the night nurse forgot to tell the day nurse that he was sleeping and to wake him up when I was ready, but luckily he woke up just in time.) It only took a few pushes and out she came....a precious little girl that I had been waiting to meet.

Dr. Jacob cleaned her up and sucked gunk (an official medical term) out of her mouth and set her on my stomach to let the nurses finish the job. She was crying faintly, but not very hard and the nurses continued to try and get her throat cleared out. I watched the nurses and will never forget the subtle change in the nurses face as she went into her worry, let's get this kid breathing mode. She quickly picked up my little baby and took her over to the warmer. Without knowing where they all came from there was suddenly a slew of doctors and nurses in my room, all talking quietly as they crowded around my little baby that I loved so much after only meeting her for a few brief minutes. As the Dr. finished up my delivery all I could do was helplessly watch fighting tears until I couldn't hold them in any longer and within seconds there was a incubator wheeled in the baby was whisked out of my room and Brandon was invited to go with them and that was it. I didn't even know what her name was, all the expectations that I had were gone and I was robbed of all the moments that I had been looking forward to for 40 weeks!!

She was immediately put on a CPAP that was pushing oxygen into her lungs to help her breathe and we kept getting different answers. She would only be in the NICU for a few hours and then she should be back in my room, or she would be there for a few days to a few weeks. I had to wait until my epidural wore off before I was able to see her and that was all I wanted to do. When Brandon came back into my room I asked him if she had name and he said Brooklyn Jane, which sounded perfect to me. It took what felt like forever before I had enough feeling in my legs to be moved and then they wheeled me down to NICU so that I could see my precious little girl. She was really tiny and I watched her in her bed so overwhelmed and hoping that all she was going through would be resolved quickly so  that she could meet her siblings and truly be a part of our family. Because of the CPAP machine I wasn't allowed to hold her, which was torture, so I touched her leg and arm, praying that she knew how much I loved her through my simple touch.

The next few days were a blur going back and forth from my hospital room to NICU, trying to let my body heal, but also wanting to spend as much time as I could by her side. She was weaned of the oxygen fairly quickly and went from the CPAP to high flow oxygen which made it so that I was able to hold her for the first time the night she was born, it was only for a little while, but really meant so much to me.

She was incredibly swollen for the first few days so it was hard to tell who and really what she looked like. She also had a few physical features that looked a little different then the norm so the doctors decided to do some genetics testing. They also noticed in a routine exam that she a very small soft spot and they were worried that the plates of her skull had fused, which shouldn't happen until much later and would cause problems allowing her head to grow. While we waited for the results of the genetics test, which we were told could take weeks, we tried to prepare ourselves for all sorts of possibilities. It seemed like every time we talked to the doctor there was some new diagnosis that it could be. Brandon was really good at googling the big words that the doctors used to give a little more information about what we were dealing with. 

They took an Xray of Brooklyn's head to see if the plates were fused and while the Xray was clear and it didn't appear that her plates were fused, which was good news, the Xray didn't give them all the information that they needed, so they decided to do a CT scan as well. 

The day that I had to leave the hospital, but couldn't take my baby home with me was a really rough one for me. Even though I knew she was in good hands, as any mother can understand, a baby immediately becomes someone that you would gladly give your life for and will forever be a part of you. I remember thinking how hard it was going to be to split my time between the hospital and my other kids (I had no idea what that would eventually mean, at the time she was 10 minutes from my house). 

I think one of the hardest things to deal with during all this time was the waiting. It felt like we were constantly waiting for different test results, it was always going to be just one more day until we had some answers. I remember the day that she had the CT scan, Brandon and I went to the hospital late that night, the same day that I was released. They were going to try and feed her and we could spend as much time in there as we wanted, no matter what time it was. I asked the night nurse if she knew the results of the CT scan. She said that we would have to talk to the doctor in the morning, which I thought was kind of odd, because they had always just looked up that information for me before. However, I just accepted her answer and went on. This was the first night that we really got to spend some quality time holding Brooklyn and it was the first time that Brandon has held her at all. 

I had no idea that the next day.....my world would truly be turned upside down.

I

eye lift...

Brooklyn's sight has always been a big question mark, well along with a lot of other things about her. She has all the correct parts of her eyes to be able to see, the question then lies in the connection between the eyes and the brain. She rarely focuses on anything and generally her eyes are just rolling around especially since she started having seizures. In fact she rarely even opens her eyes. Many people including her vision therapist (yep they have those), her eye doctor and me have different theories as to why she keeps her eyes shut most of the time. I figured it was a combination of seizures that make her tired and medication that makes her tired. Her vision therapist's theory is that the world is really overwhelming for her and her coping mechanism is to shut things out that she doesn't quite understand by closing her eyes and basically checking out.  I have noticed that she seems more alert when things are quiet and she feels safe, but honestly keeping things quiet and stable at my house is next to impossible, so I do my best, but seriously I have other kids. 

Today Brooklyn had an appointment with her ophthalmologist and he came up with an entirely new theory. He asked how her sight was developing and I said, "Well lets be honest, its not as far as I can tell." Brooklyn doesn't focus, doesn't track, and doesn't even respond really to bright light shining in her eyes. However, I do truly believe that she can see and I believe deep down that there are brief moments where she connects with what she is seeing (gotta stay optimistic). I mentioned to him that she doesn't open her eyes all that often and even when she does, she doesn't open them very wide. At his office she seemed to be awake and wiggling around but we really didn't get her to open her eyes on her own. His theory is that she may benefit from an eye lift. If we can help her eyes to easily open wider, then it may make it easier for her to focus on some things. He set me up with an ocular-plastic surgeon to see what their opinion is on her eye lids. He said that most likely her eyesight is going to be directly related to her development, but he wants to make seeing as easy as possible for her. 

So we get to see yet another specialist in a few weeks. The thought of surgery always makes me nervous, but I am willing to do what I can to help make her life a little easier. So we are going Hollywood and getting our little girl an eye lift, I mean everybody is doing it, right!!!

10 months...

So I decided to start a blog. Really this is more for me than for anyone else. A place to get out my thoughts, frustrations, things that work and things that don't. I want to have information written down so that if anyone especially maybe one of my own kids has to go through a similar situation, they have an in the moment account of how I learned to live life differently after Brooklyn was born. 

I have wanted to do this for a long time, but was a little overwhelmed and didn't know where to start. So my plan is get down what we have been through and learned about Brooklyn as well as what we are currently going through and trying. There really isn't going to be any particular order and while I want to include the beginning of her story, it will be mixed in with what we are working on now. I'm also not putting pressure on myself with this thing, its supposed to be mostly for posterity and help keep the people that love us and Brooklyn updated on how she is doing. So no promises as far as how often I will post (that is mostly for me). But I truly want this to be a real account of our lives. It won't be all warm fuzzy, but it also won't be completely depressing. Just a honest and not always eloquent description of what is going through my mind and what is going on with Brooklyn. 

Its hard to believe that it has been almost 10 months since my life turned in a direction that I never thought it would and never even considered. When I was pregnant with Brooklyn, I used to say well my life is already crazy with 3 kids so why not throw one more in the mix. Yeah, I had no idea what I was talking about. 

I think about that first week after she was born and how many unknowns were thrown at us. Brandon would quickly look up terms that the doctors used on his phone and we would try to speculate and figure out what we were up against with this sweet little girl that we loved so much. I would come home after talking to doctors all day and completely lose it, usually in the shower. I just didn't think that I had the strength to deal with it all. Looking back on all that now, its amazing to think about everything that I have been through since and about all the things that I have learned and done that I never thought that I was capable of. I truly believe that the Lord gives us strength when we are so whipped we can't stand, it not always in the way we expect or maybe even want...but it is there.