Hmm... 6 months since my last post? I need to get caught up!

So it has been 6 months since my last post. Holy cow! I am totally slacking on blogging about our life (I am sure my readers are happy for a break though) :). I do feel there should be some updates to this blog, however, as much as changed in our little household. First of all, as many know, I am pregnant! With another little girl - so by February we will have three beautiful little girls running us ragged and making our hearts swell even more. Right now I am 26 weeks . . . and here are some of my thoughts.

It took us a LONG time to decide to try to get pregnant again. We had actually decided we were done. With everything we dealt with Brooklynn, and three years of doctors appointments, and the fear of genetic testing, and fear of the unknown, we didn't want to risk it. We were afraid. We were nervous. We didn't want to push our fate. But we received testing that showed that Sam and I did not have the PTEN mutation. Only I am the carrier of the alpha-5 reductase deficiency (all described in previous posts). So the risk of us passing on any type of genetic disease was slim. And the risk of us having a baby with another genetic disease was the same as every other person out there. That brought us a little relief.

But that wasn't the whole picture. My pregnancies haven't been easy. Izzy was easy - until I hit 32 weeks and I started having contractions, started dilating, and spent 2 weeks in the hospital going in and out of labor. Then with Brooklynn, due to my history we were cautious. However, at 19 weeks ultrasound, we found my cervix was funneling, and was shortening. Fearful that it was my cervix that caused the issues with Izzy, I was put on modified bedrest from 19 weeks until 30 weeks. So was my body telling me that I am not meant to be pregnant? Both girls were born at 36 weeks, and overall pretty healthy at birth.

So after 3 years, we decided that maybe we could reevaluate our thoughts of being done. This all occurred of course after we sold ALL of our baby stuff. We were at a different place in our lives, and it had been 4 years since I was last pregnant. Maybe this time would be different? So we decided to give it a go. I was in a different job that I didn't have to be on my feet all day. I could listen to my body and relax if I needed to, as I had more flexibility. The girls were older and able to care more for themselves, which decreased the demand on my body. So we spent 8 months trying for a baby. And finally, the last month we were going to try before giving it a break for another year, I got pregnant.

So I have made it to 26 weeks. And every week I live in fear that my body will start failing me. That my body will start contracting. I question whether we made the right decision. But every week we get further along in my pregnancy, I see that we have made it further than we did with Brooklynn before precautions. Maybe this pregnancy will be different? I will continue to hold my breath until I get to 28 weeks. At that point, I will be able to let myself breath a couple of times here and there until we get to 32 weeks. After 32 weeks, I will be ecstatic if we can make it to 36 weeks. And than if I could go term? Than maybe we will consider having a fourth child.

Yep - I live in fear about my decision to try again. But this pregnancy has been so different, so I pray we made the right decision. Every week I look at a baby at work who is the same gestation as what I currently am. Every time we get a baby who has a diagnosis of a genetic disease, I live in fear again that maybe this time we are going to encounter something completely different and this time it may be more dangerous or scary. I have to remind myself that we have done everything possible to guarantee this pregnancy will be different, and that we have done everything right. And our risk is the same as the rest of the population for any type of disorder.

The girls are SOO excited for a little sister. I hope we can have a little sister born that is healthy and able to come right home so that the girls can start being the big sister they want to be. Izzy has come up with multiple names, including Margaret, Lucy, Jessie, and more. Brooklynn has gone between naming the baby "falcon" or "ironman". They both get a little nervous when they feel baby move but love talking to her. I am grateful for every week we make it closer to term. So those are my random thoughts about getting pregnant, my fears, my excitements, my nervousness.

Brooklynn's genetic disorder is scary to me still - any day we could find a bump or a lump, or she could develop symptoms that suggest a growth or even the "c" word. I am able to manage it better in my head and not let it overpower me. I go months now between researching PTEN - before I was looking it up at least once a week. I am still diligent to make sure there is no up to date information, but it is not as obsessive as it was before.

Brooklynn has her yearly thyroid ultrasound next week. I am praying there are no growths or no concerns, just like the last two years. That would make me happy. She also has a dermatology appointment next week due to a growth on her nose and a change in the look of one of her freckles/moles on her thigh. I am hoping these are benign and of no concern. But I don't want to be lazy and think it is nothing and not take her in. This will be our life - every change we will need to be careful with and not sit on. Because quick diagnosis and treatment are going to be imperative with her - so we will have to be diligent to watch her closely and identify changes so that we can make sure we get her evaluated quickly. So next week I am hoping to have two appointments that we hear the words "normal". I would love it!

So there are some of the changes in a nutshell. The nice thing about not posting in 6 months? That means there have been no significant changes in anybody's health - that we have been able to live a normal life working full time, managing a household and a marriage, two amazing girls, and me going to school, Life is hectic but fabulous!

It's been awhile...

It has been a while since I have posted on this blog, so I thought I would just do a little journaling, for my own sake. I never posted the girls' letters for the birthdays this year. That makes me feel terrible. Izzy turned 6 and Brooklynn turned 4 - I can't believe they have grown so fast! Izzy is truly amazing. She is bright, funny, caring, loving, athletic, and just plain awesome. She is 6 going on 16 some days, throwing her little attitude around when she doesn't get her way and this drives me CRAZY! However, if she is this way when she is 16, I think I can manage. She always wants to help others, and any time she sees someone sad, she wants to cheer them up with a hug or a story, or just by distracting them with playing. She tells me she loves me all the time and I love that she understand what that means. She tells me everything, and even when it is hard for her, she still knows she can come to me. I hope she always feels that way. I am amazed at how much she has learned, from addition and subtraction, to reading, to science, to the world. She is a sponge and just sucks in all the knowledge and really enjoys finding out new information.

Brooklynn is her amazing self as well. She is resilient, strong, loving, caring, funny (hilarious actually), energetic, interactive, and creative. She has made significant improvements this year by progressing with her interaction skills at school - she has "best friends", she plays, she tells stories, and I love hearing her little voice talk. After years of not being able to explain how she was feeling, or to tell us a story, this milestone truly makes my heart grow! She is a little more timid now than she used to be with things, but this is a good thing - she used to be fearless, now she is starting to understand what limits she should have. Yet she pushes past when she thinks she can't do it any more with encouragement. She is learning her letters, she is writing most of her name, she is starting to understand the concept of numbers. We have decreased the amount of follow up appointments (actually, most specialists have officially cleared us unless something pops up). She is able to finally be a girl who goes to the doctor when she is sick, not just to evaluate what could be. I love that. I can't wait to see how much further she is in another year from now! Even her teacher, when we sat down to go over her IEP, didn't feel like she was the same girl as the year before. This teacher didn't have her last year, and she didn't see her struggles. So it was nice to see that her IEP was no longer pertinent (mostly) and that she has made such significant strides in improvement. I love my girls, and am very grateful for all the things they teach me as the years go on.

We are trying to get into the Cleveland Clinic to meet with Dr. Charis Eng, who is the expert in PTEN. We are really hoping we can go this summer, meet with her and other specialists, and just get an idea as to what to expect. There is also a research study about developmental delays and milestones, so we will be enrolling her (hopefully) in this, and be receiving a full blown developmental evaluation from someone who understand PTEN and the struggles that others with this diagnosis face. The knowledge and expertise will be amazing to hear - not that the doctors here aren't knowledgeable, and some actually see other patients with PTEN. But this is a clinic actually devoted to PTEN! How exciting.

So we will see what this next year brings. I am anxious, excited, nervous, hopeful, and truly grateful for every day.