Thursday, February 3, 2011

The Beginning

J was born almost 2 1/2 years ago. It was in March of 2008 we found out we were pregnant. We were excited to have a bundle of joy together come November 20. (We both have children from previous relationships.) I had some slight problems with my first pregnancy, but nothing that couldn't be handled. It did mean that a little extra watching would be needed.

At the end of September my doctor was concerned with how small I was measuring and how small J was looking on the sonograms. I had experienced this before & I knew that being small wouldn't be the end of the world, though it does make finding clothes that will fit a preemie sized baby a little difficult. At the beginning of October my doctor informed me that if there weren't some improvements on the sonogram he wanted to do that he would like for me to see a doctor in Ft. Worth. (Our town doesn't house many specialty doctors.) Well, I invited my mother along and sure enough the doctor was still concerned. I was going to have to go to Ft. Worth to get looked at by a doctor there. The only good news was that we were pretty sure we were going to have (yet another) girl. My mom, my husband & I make the first trip to Ft. Worth together. I was nervous as all get out to know what the doctor would have to say about the baby. All I kept hoping for was a healthy little one. Please let her be healthy, please. I felt like I was begging God. As the doctor looked at the sonogram he noted that she was still really small for being about 32 weeks. He also noticed that there was a slight issue with her diastolic blood flow. Apparently the flow in her brain and umbilical cord were backward from what they were supposed to be. Not something to get worked up about, but something that would need some monitoring. He decided that I needed to come back every week, along with seeing my doctor in town 1-2 times a week. I was getting sick of having appointments. So, we continued to go down to Ft. Worth (my husband didn't go every time) and I continued to get full biophysical exams at both doctors’ offices. I watched my darling slowly grow & prayed that everything would be OK once we had her. At the end of October I was told that I could be pregnant for a little longer, but that my doctor (in Ft. Worth) wasn't comfortable with it. He felt the baby would be better served if we went ahead and delivered early. We had already started to prepare for this possibility with the steroid burst given to me through injection to help her lungs develop more fully.

The decision was made and 2 days after celebrating my oldest step-daughters birthday we were headed to Ft. Worth at 6 in the morning to have a baby. (Of course she didn't wait until after Halloween like I was trying to tell her to do.) We got to the hospital and started the preparations for the c-section. This in itself made me anxious, because it was new to me and we were concerned about the baby's health. I kept hoping and praying that she would be healthy and weigh at least 4 pounds. I had both my husband and my mother in the OR with me and the rest of the family that had made the 2 hour drive were waiting anxiously in the waiting room (or my first room I don't quite remember which). I remember being given the spinal even though I was trying so hard to be still while freaking out at the same time (I have a thing against hypodermic needles and tend to have mini-panic attacks) and thinking that the table they were having me lay on was so skinny. It reminded me of the tables you see them use for lethal injection and I am strapped down with my arms spread on skinny pieces of bed just waiting for them to start. We were warned that a team of nurses from the NICU were also waiting to immediately assess our daughter. They started the procedure and I got a quick glimpse of my daughter. She was so tiny, and she wasn't crying. I don't know much about the medical aspect of having babies and terminology, but I do know that a baby is supposed to cry after they are born. Mine wasn't. I was freaking out thinking why isn't she crying. She is supposed to cry, but I don't hear her. Please let everything be OK. Cry baby, just cry. She started to make some noise before the nurses had to put oxygen on her. The doctor and staff finished stitching me up. I think at one point someone was concerned about my blood pressure, but it was pointed out that I was crying. She was taken immediately to the NICU. I got a better look at her as they wheeled me through the part of the NICU where she was (on my new bed) on my way to postpartum. She was so little. Only 4lbs 1 oz. We had made the 4lbs!

My family came to see me in my room in postpartum. The rule in our NICU is only 1 visitor allowed with one of the parents (or guardian, whoever is wearing a bracelet). My husband was taking each of our family members in to see our daughter, one at a time since they all came to see her. The only ones not able to see the baby were my daughter (then almost 5) and my cousin of the same age, because of the time of year nobody under the age of 13 was allowed in the NICU. My daughter wasn't even able to see her new little sister. It was my mom who came back to my room and showed me a picture of J. She had a bubble CPAP on (it hadn't been there when I had seen her), so that upset me. She also informed me that the NICU nurses felt that J would have to be there until at least her due date. Another month! I didn't want her to be there a whole month. I wanted to take her home and take care of her at home. (She ended up spending 5 1/2 weeks in the NICU.) I was heartbroken. What was going on that my little baby needed extra oxygen and wasn't going to be able to go home with me? This isn't what I was thinking when I found out I was pregnant. What happened to a healthy baby? I was upset and in pain (I found out that c-sections hurt A LOT) and just wanted to be close to my family. To make matters worse, my husband wasn't able to stay with me the whole time I was in the hospital or much of the time I spent in Ft. Worth with our daughter because he had to work. We needed money to pay the bills and I wasn't going to be able to work for at least 8 weeks. I spent much of my time missing my husband and daughter, and when I was home so that I could attend class (I had recently started my first semester of graduate school) I was missing J. But being the devoted mom I am, I spent Friday through Tuesday afternoon with J (after the first 2 weeks), and Tuesday night through Friday morning at home. I am lucky that both of my professors were so understanding and I passed both of my classes. I also pumped every 3-4 hours so that J would have the form of food I wanted her to have.

Yes, I am a breastfeeding advocate as well as an advocate for my daughter. I pumped for about 7 months so that J could have breast milk, and then she received milk from the Mother's Milk bank. It really bothered me to hear people say that it was too much to nurse their babies while at home with them. What I wouldn't have given to be able to have J nurse. She wasn't even interested. I tried.

I hope that we never have to spend that much time at a hospital ever again. That's how this all began.

Thursday, January 27, 2011


How do you communicate with a non-verbal 2 year old about what they want for lunch? We ask J everyday and she just looks at us like we are just supposed to know. Of course she doesn't typically complain about what is offered to her for lunch. (1/2 a grilled cheese sandwich and a banana or a toddler tray meal) She has some picutre cards for communication, but we are just getting started with that. At least there isn't much of a fight with her about food. Yet, anyway.

Monday, January 24, 2011

A Start

So I have been turned on to blogging & I thought it might be a good idea to blog about our journey with PWS. Our youngest daughter was born 2 years ago with this genetic disorder and adjusting to life with PWS has been different and we have yet to hit the difficult spots. As this blog continues on and our daughter grows, we will definately be able to see and remember the ups and downs of our journey.