Today 1 got to see Kennedy twice. My mom took me down this morning to get my staples out. The doctor went over the pathology report for my placenta with me and got a little more in depth this time. He called it plactenal insufficiency and said I need to remember it in case I get pregnant again. He said there is a good chance the same thing would happen and I would have to be monitored very closely, but honestly right now I can't see myself ever trying for another baby. When Kennedy is home safe I will be completely happy with my one miracle baby. I can imagine having to go through this ever again. Maybe a few years down the road I might change my mind, but right now there is no way. He said my placenta was prematurely aged and that parts looked like 32 weeks and parts looked 37 weeks and some parts were already dead. When I asked him about the rash I developed the day after I came home he told me it was PUPPS which he found very interesting because that is something unique to the very end of pregnancy. He said it looked like my whole body thought it was time for my pregnancy to be over even though I was only 30 weeks when I delivered.
After they took the staples out my mom and I went up to NICU and she got to meet Kennedy for the first time. She couldn't get over how tiny she is. The second visit with just me and Shawn was a little harder. Shawn has been my pillar of strength since the Friday the ultrasound came back as abnormal and our drama began. He has been there for me constantly, he has comforted me, held me and told me everything will be ok, but today it was my turn to be strong. He had a hard day while we were there and is still having a hard time. The reality of the situation starts to bare down on you and the stress gets to be too much and he hasn't had a chance to have a breakdown yet. It's hard for me to see him hurt this way. I wish I could take it all away. I wish I could make our daughter better so she didn't have to go through all this and he didn't have to see her go through it.
Kennedy's daily report was good. She is up to 799grams which is just over 1 pound 12 ounces. The decided not to go an upper GI with barium and are going to do another barium enima tomorrow. He blood sugar is still under control and she is still on a low level of oxygen. The nurse said I might be able to hold her in the next couple of days.
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I ran across your blog through the Preemie forum. Kennedy is beautiful. I think she looks really, really good for her gestational age...such good color.
My twins, Natalie and Abigail, were born at 26.1 weeks. They weighted 604g and 840g. They celebrated their 1st birthday May 15th. The are perfectly healthy and happy. In fact, we had developmental testing done today, and although their Adj.age is about 9 months, they tested at 10 months across the board. Our only concern has been that they don't eat enough - they are still only 14.2 and 15lbs. Otherwise though, they are perfect. We certainly have one of the lucky stories, but miracles can and do happen.
My advice to you: 1: Continue your blog. It will be a source of catharsis for you as you travel the "roller coaster" of the NICU. It will also help you keep up with everything that happens. In a few weeks you won't remember what day she came off the vent or when she hit 2 lbs. It is also fantastic for keeping people informed. It will save you countless hours on the phone or email trying to let everyone know. I still blog for my girls. I hope to print it out one day and give it to them and they can read the details of their journeys. 2: Take LOTS of pictures. If you don't have a digital - get one. Get a little stuffed animal that you can take pictures with to compare her growing size. Or, cut a small blanket that will cover her from head to toe right now. Take pictures with it covering her. When you look back at them and at the size of the blanket you will be amazed. Take picture of your wedding rings on her arms, etc. It also really helps people comprehend her size, which frankly, is impossible in pictures. I tried to take pictures on every week birthday. My girls were born on a Tuesday, so every Tuesday I took pictures. I eventually moved to every month, and still do. When you look you'll see this amazing jump from tiny, strange creature to a real miniature baby. It's beautiful. I'll add to take videos too. Get that preemie baby cry that sounds like a baby kitten and the little sounds she makes sucking her paci. 3: Stay positive. I've been accused of living in denial. I've decided it's an art form. You should definately be aware that bad things can happen - there are still many scary weeks and months ahead for little Kennedy. But, focusing on them, living in the worry and fear and what ifing everything doesn't do anyone any good. You certainly need days to cry, and you should take them, but try not to live there. There's a fine line between healthy denial and positivity and delusional hope. Find the line and straddle it.
I will put you on my "baby blog" list and keep up with Kennedy. I wish you all the best.
Johelen
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