The doctors came in on Friday and gave me another dose of that lung medicine. It didn’t really work all that well. My blood just couldn’t get enough oxygen in it. The doctor said my body was very smart, and that my blood would automatically send my little brain all the oxygen it needed so that I could stay smart. The problem was that they couldn’t get enough oxygen in my body so that enough of it could be sent to all the other little places that needed it. They kept trying to lower that pumping ventilator, but every time they did, I just couldn’t breathe that well even though the nurses said I was really trying hard. The nurses and doctors tried a different kind of ventilator—one that wouldn’t be so hard on my little body—but that didn’t work either. The nurses and the doctors were working very hard to keep my little lungs and heart working so that I could stay with my mommy and daddy and my sisters and the rest of my family.

Finally, the doctor had to tell my mommy and daddy that they had done everything they could to keep me with them, and that there was nothing else left to do. He told my mommy and daddy that they could give me another dose of that medicine, but because the other dose didn’t work that well, they knew the next dose wouldn’t work either. The doctor told my mommy and daddy that he did not know why I had gotten so sick. No one could understand why I was so sick. The doctors and nurses really didn’t know or understand, and my mommy and daddy and the rest of my family didn’t know or understand either. My belly thing was something that could be fixed, and that is what my whole family believed would happen. The doctor told my mommy and daddy that he had done every test imaginable to try to figure out why my body was in such a “crisis,” but every test had come back negative.

My mommy and daddy had to make a very tough decision. I know it was tough, because I already knew how much they loved me and wanted me to be with them. My mommy and daddy were so heartbroken to see me so sick, and they just didn’t want me to have any more pain. They prayed really hard to make the right decision, and they prayed really hard for the strength they needed to make the right decision. My mommy and daddy already knew that I was in God’s arms, and, no matter what happened, I would always be in His arms. So my mommy and daddy decided to stop all of the pumping and poking and prodding. My mommy and daddy decided to let me go home to be with our heavenly Father because they knew my little earthly lungs just couldn’t do what they were supposed to do. My mommy and daddy knew that when they let me go home to be with Jesus I wouldn’t have to be all full of tubes and stuff, and that I wouldn’t have to work so hard to keep my little body going.

Because my mommy and daddy had decided to let me go home to be with Jesus, the doctors and nurses let my mommy change my diaper and dress me up for the first time. My mommy dressed me in a little pink and yellow footie-sleeper with little lady bugs, bees and flowers all over, and with little smiley-bee faces on the feeties. My mommy put a little pink hat on me that had “sweetie” written across the top, and then my mommy bundled me in a little pink and green polka-dot blankie that she had gotten for me herself. When my mommy had me all dressed up, she and my daddy got to hold me for the very first time, and they got to finally smother me with the kisses they kept promising me from the day I was born.

My mommy and daddy let my big sister, Alyssa, hold me, and then they let my Grandma Karen and my Meema Mary hold me. Everyone was sad that they could not take me home to be with them, but they all knew that was going home to be with Jesus, and they were just so happy to be able to finally hold me and caress me and kiss me without the nurses getting all mad at them. They all said I was absolutely beautiful, and my Grandma Karen said not to worry about the puffiness cuz all of us girls get that way sometimes. My Uncle Luke and my Aunt Rebecah were there to say good-bye to me, my Grandpa Scott came in to say good-bye to me, my cousin Sally came in to say good-bye, and Pastor Mary Lynn was there with all of us too. My mommy wanted Pastor Mary Lynn to tell me about where I was going and who I was going to be with. Pastor Mary Lynn told me I was going to a place where there was only the purest love, goodness and kindness.

After everyone said good-bye to me, they left me in my hospital room with just my precious mommy and daddy, and they both held me close to them until I went home.

I have now been in this hospital for 18 whole days. I was doing pretty well for the first 13 days, but then I got sick. My mommy says I was just showing off for those first 13 days. She says I was just trying to be a big girl, and that I wasn't letting anyone know how sick I really was. And she is right! I was trying to be a big girl. I had a good day yesterday, but during the night I got even sicker. The doctors want to give me another dose of that lung medicine.

It’s been awhile since I’ve been here, but a lot has happened. First of all, I spent my very first Holy Week and Easter here in this hospital. Secondly, I am now two weeks and three days old! Lastly, I got pretty sick over the weekend.

Getting that sick was sure scary—especially for my mommy and daddy and the rest of my family. The doctors didn’t know exactly why I got so sick. At first they thought I got a virus in my lungs, but then they decided it was because my lungs just weren’t working right. The doctors said that while I was in my protective uterine coating, my tummy thing was like a basketball pressing against my chest. There I was: folded in the regular fetal position with this giant tummy thing pressing against my lungs. While the tummy thing was pressing against my lungs, my lungs didn’t do what they were supposed to do while they were being developed, so when I was born and started breathing on my own, my lungs became “hyper-inflated.”

Ever since I was born it’s been hard for me to breathe. It is the condition of my lungs along with the tummy thing that caused me to get really sick. I started getting really puffy, and I didn’t have enough air in my blood. Since I didn’t have enough air in my blood, the doctors decided to give me more blood. When that didn’t work the way they wanted it to, they put me on a different kind of ventilator. Unfortunately, the only kind of ventilator that would work for me at that time was a “pumping” kind of ventilator, and while it “pumped,” my little lungs started putting a lot of pressure on my heart. Since there was pressure on my little heart, my heart couldn’t pump the blood to the rest of my little body—including my kidneys. And since my kidneys weren’t getting the blood flow they needed, they weren’t filtering the waste out of my blood like they should have. The doctors and nurses were doing everything they possibly could to make me feel better. While the doctors and nurses were doing everything they could to make me feel better, my mommy and daddy, the rest of my family and many, many friends were praying for me.

Finally, when it looked like nothing else was working to make me feel better, the doctors decided to put a strong kind of medicine into my lungs. The doctor told my mommy and daddy that the drug would either be beneficial for me, or that I could have “an extremely adverse reaction” to the drug. The doctor told my mommy and daddy that they could either let them use the drug, or they could take all the tubes and stuff out of my little body and hold me until I went home to be with Jesus. Since it didn’t look like anything else was working, my mommy and daddy told the doctor to give me the drug because even though they knew that I would be going home to Jesus, they wanted to have me with them for as long as possible.

Before the doctors gave me that medicine, Pastor Mary Lynn baptized me with my mommy and daddy and both my grandmas standing around my incubator. My mommy and daddy know that I didn’t need to be baptized to go home to be with Jesus, but they decided that they would just like me to have that special blessing.

While my mommy and daddy, my Grandma Karen, my Meema Mary and Pastor Mary Lynn were in the room with me, the doctors and nurses gave me the medicine. Everyone in the room with me was very afraid of what would happen to me, and everyone was praying for me. About a half hour after I got the medicine, I started feeling just a little better. My lungs started to feel better so the nurses turned down the ventilator so that my heart could pump my blood where it needed to be. And I started to pee! I didn’t know peeing was so important! Everyone was so relieved.

The surgeons talked to my mommy yesterday and told her that they may let me go home without surgery! I still have to have the surgery, but they have decided they want me to get really strong before they operate. They will teach my mommy and daddy how to take care of my tummy thing. My Grandma Mary is a nurse so she will be able to help them. First they have to get me completely weaned off of the ventilator, and then make sure I can feed through a bottle or through my mommy. My mommy, my daddy, and my whole family are very excited. Mommy says I can just wear loose dresses and stuff. Now my Grandma Karen thinks she really should make those fancy fanny packs (supportive and cushioned) so that my tummy will be completely protected until the doctors fix it.

The nurses hardly gave me any pain medication yesterday, so I actually had my eyes open for a pretty long time. My mommy took a video and she will try to get it posted. I will have to explain a few things once the video is posted. It feels so good to be able to keep my eyes open for longer than 30 seconds and to actually look around.

The pastor from my mommy and daddy's church came to see me today and she prayed for me. I know a lot of people have been praying for me. The pastor says I am looking very good!

My Uncle Luke and my Uncle Colin came in to see me this morning. Uncle Luke says I look "just like a baby," but my Uncle Colin says I am very cute. They couldn't stay very long because they were going to a Penguins game today. Maybe one day I will be able to go to a Penguins game. First I will have to learn what these "Penguins" are and what kind of games they play. Everyone around here seems to get very excited about these "Penguins!"

My mommy and my grandma Karen came in to see me today. I tried so hard to open my eyes so I could see who was talking to me, but the medicine they give me makes me so tired. Maybe when I finally get off the ventilator they won't have to give me that pain medication. It would be nice to become a part of the world for the first time in my life. Just laying here all the time just isn't very fun. Really.

Oh... I overheard my mommy and grandma talking about my snoring. I snore? Maybe it was the ventilator. Or maybe it's because they have that ventilator thing taped so close to my nose (it feels like it's going right up my nose!) that the air has to work so hard to get in and out? Or maybe they heard me do this.... (my big sister will understand!).

Well... a lot has happened since yesterday...

The nurses fed me for the very first time since I was born! I was absolutely euphoric. My tummy was full for the first time, ever. When my mommy came in to see me, she said I looked so satisfied. I didn't get sick or anything. The nurses started out with 5 cc's, and then they increased the amount to 10 cc's because I was able to tolerate it so well. The nurses gave me just regular formula for my first couple of feedings because they forgot that my mommy has been providing her own milk for me... and that there is already a freezer full of it!

The nurses took the bar thing away today, and they turned off the heat lamps. Now I get to lay on my side instead of flat on my back, and I get to be all cuddled up in blankies. Although I love the blankies the nurses have me bundled up in, my mommy is going to bring in some of my own blankies! Ever since I was born, I've just been laying under those heat lamps without any blankies at all. My nurses are watching my temperature very closely to make sure I can maintain my "own heat." I think I can do that.

I'm still on the ventilator. Evidently they have to wean me from the thing. They can't just take it away and leave me on my own. My lips are chapped from having my mouth open all the time because of the tubes and because of the ventilator, so the nurse put some vaseline on my lips. My lips feel so much better. The chapping was annoying. The ventilator is still breathing for me about 30% of the time, and the rest of the time it's just me doing all the breathing. I almost forgot all about that part of being post-utero. Pretty soon it will just be me doing all of my own breathing. I think I can handle the challenge especially if they keep feeding me real food instead of pumping my little body full of nutrients and stuff. I'll just keep getting stronger and stronger and bigger and bigger. I've already gained at least 5 ounces!

Even though the nurses took away the bar thing, my body is still working to get all of my tummy back into my belly. The doctors don't know if they really want to do the "paint and wait" thing. The reddish medicine they have to put all over me has iodine in it, and the doctors don't really want me to absorb all that stuff. What the doctors want to do with me changes just about every day. One day I think I'm going to have surgery, the next day it's the "paint and wait," and now I just don't know what they want to do. I hope they make up there mind soon because I really do want to go home!

My mommy and daddy went to a Penguins game last night after my mommy spent all day with me. They needed to get out. I love it when they are here, but I do sleep an awful lot so it has to be just a little bit boring.

My mommy is still trying to get more pictures published. I don't know how long that will take!

Hello...

Just a little update for today: I had my eyes open for a long time yesterday cuz the nurses lowered my sedating meds. I was looking around and trying to figure out what kind of world I've found myself in! My mommy has a picture of my room and she will post it later. My room is really wierd. Some kind of medical/industrial/contemporary chic look. Really not my taste. I think I would rather see flowers and butterflies and birds and frogs and kitties and stuff. And pink. Lots of pink.

The nurses closed my incubator yesterday cuz my temperature kept going up and down. They had that heat lamp glaring down on me but with a lot of cross-drafts, so I was hot, then cold, hot and then cold. The downside to this, is that the nurses removed my fashionable foot wear to try to keep my temperature regulated. Also, the nurses keep putting this foam bumper-thing around me to keep me "comforted," but it is a little bit annoying because I prefer to stretch my legs completely out. The nurse came in yesterday and found me with my legs hung over the end of the foam bumer and my arms draped out over the bumper. The nurse told my mommy it looked like I was lounging in an innertube floating around in a pool. I wish... I don't even have a bathing suit yet. And the thought of a bikini right now? I don't even have a belly button yet!

I heard the nurse and doctor talking yesterday and they were talking about taking me off the ventilator! Yahoooo! It's not like I can't breathe on my own for heavens sake! OK... I did need a little help there for awhile, but I have built my strength back up, and I'm all for getting rid of that of that loud whooshing machine that's stuck to my face. Yuk.

Another friend came to visit me with her son, Max. She and my mommy went to school together, and her name is Kristie. It is fun meeting all of these new friends.

Although my mommy and daddy, and the rest of my family, knew that I would have to be in the hospital after I was born, it is still very hard for them. My mommy comes in every day to visit with me and hold my hand, and she cries when she has to go home. That makes me very sad.