When you love what you have, you have everything you need.

Lena's Story

I found out I was pregnant with a little baby girl at our 20 week ultrasound.  We were so thrilled to get to see her moving around!  She was a bit "camera" shy and had her face pressed against the side of the uterus.  But with a couple glimpses we had, we saw her beauty right away!  We were so excited that we were going to have another beautiful, healthy baby girl!  A couple days later, my OB called and gave me some devestating news:  they spotted an abnormality with Lena's feet.  She would be born with bilateral clubfoot.  Since many times, clubfoot can be a sign of something more serious, I was referred to Fetal/Maternal Medicine for more in depth ultrasounds.  I was upset, but kept telling myself "It could be worse, this can be treated, it isn't for her lifetime!"  That was the only thing that kept me calm.  I did a ton of research and found the best doctor to treat her when she was born.
During the course of my pregnancy, I had so many ultrasounds!  The doctors always took all her measurements and never found any other problems.  I also was on weekly non-stress tests/ultrasounds after week 32, just to make sure!  The doctors I had were so great and took wonderful care of me and my little bean!

I was in labor all Monday and didn't know it.  The more painful contractions started around 7 pm and we decided to head to the hospital around 10.  It was snowing and all I thought the whole way was, "please get me to the hospital, I don't want to have this baby in the car!"  Lena was born on Tuesday, Feb. 22, 2011 at 7:51 am.  After a pretty quick delivery, we were blessed with a beautiful 6 lb 14 oz girl.  We were so thrilled.  When she was placed on my belly, I was in love from that moment.  I knew then that I would do anything for this little angel.  Ten fingers, ten toes, and cute as a button.  After we were in recovery, I unwrapped my baby and examined her feet.  They were turned in, but not as severe as I had seen online.  Her legs were so skinny, almost skin and bones, and she had absolutely no butt.  I was concerned, but she was so cute and pink and cuddly!  After our guests left, I just sat in bed and held her!  I could have held her forever.  I tried to feed her, but she wanted nothing to do with it.  When she fell back asleep, I put her in the basinet and pulled it as close as possible to my bed.  She started to cry and I tried to feed her again.  This time, I noticed that she kept gagging on the bottle and wasn't actually drinking very much.  She fell asleep within 5 minutes of "drinking".  Once again, I laid her down.  I tried to get some sleep, but I soon woke up to her gagging and spitting up.  I woke Justin, and asked him to look at her.  He agreed that it didn't look normal, but maybe she just needed some more time to adjust.  We both tried to sleep (it was so late).  I would wake up whenever she cried and would try to feed her, the same thing would happen. Finally, I called the nurse in and told her my concern.  She told me to rest, she would take Lena to the nursery and give her the next bottle.  I was hesitant, but so tired and knew that was best.  I woke up around 8 and called the nurse in, asking for my baby.  Our pediatrician was coming for Lena's first check-up, so the nurse said that it would be a little bit.  Thinking nothing of it, I ate my breakfast, took a shower and watched a bit of T.V.  My husband went out to get a bite to eat.  When Justin came back, I realized that it was 10 and hadn't heard anything!  My heart started beating and I could feel something wasn't right.  I called the nurse again and she said the doctor would come see us in a few minutes.  Twenty long minutes later, our wonderful pediatrician came in and told us Lena was not breathing properly and he had her admitted to the NICU.  I was devestated!  We were told that as soon as she was stabilized, we would be able to see her.  At 2, the nurse came to get us.  We went through that doorway, the one I saw and never paid attention to when we had taken the tour!  We scrubbed and put on gowns and went through another doorway to the very back of the special nursery.  There was our baby, naked and crying, and hooked up to so many machines!  Two nurses were with her and trying to soothe her.  I started crying too, I wanted to pick her up and walk out of there with my baby!  I don't remember much of what the nurses said at this point.  I remember them being so nice and calm about everything, even when the machines were going off!  The most painful moment was when I asked when she would be released, I was going to be discharge the next day!  I will never forget that poor nurses expression when she said "I'm sorry, she won't be leaving with you.  She may be here for awhile."  It was more than I could take, I was a mess.  Justin put his arm around me and I could hear him wipe away tears too (he'll probably be mad at me for saying that, but who wouldn't cry at this point?).  I don't remember leaving, I just remember laying in bed sobbing for a long time.  Justin was great and sat and rubbed my back.

Through the next day, we had visitors, and were able to stay in the hospital room since it wasn't needed.  We were told Lena was having apnea episodes, but they couldn't figure out why.  She was jaundice, so she was put under the bili lights for three days.  We could only touch her through the holes in the incubator.  We would take turns being with her.  She had a feeding tube and was constantly monitored.  After the MRI, the neonatal doctor came to my room to talk to us.  He asked if we wanted the good news or bad news first.  The good news was that Lena's apnea had stabilized.  They thought it was being caused by seizures and she was given phenobarbital.  Then the bad news.  He had to write the diagnosis down on a napkin, he couldn't say it "SCHIZENCEPHALY."  He drew a picture of what it was, cleft in the brain.  I heard: my baby is missing part of her brain!  After I cried, I got out the netbook and googled the word.  What I found was not what I wanted to know, this couldn't be happening to my baby!  She was too cute, too beautiful, too perfect, this wasn't possible!

I was discarged after 4 days in the hospital.  We were lucky that a room in the hospital "hotel" opened and we were able to stay one floor down from Lena!  On the way down the elevator, Justin said "The room isn't that nice, please don't cry!  It's a place to sleep."  I cried anyway, it was the most depressing room I had ever been in.  We were there for 6 more days.  During that time, so many things happened.  Lena made progress the whole time, fighting her little heart out.  When they said she may need a feeding tube, I told her she could do it.  She started drinking from the bottle!  Granted only a little at a time, but she was getting there!  We had only 30 minutes before they wanted to tube feed, but she did it!  I was so thrilled when she ate 20 ml!  It was amazing!  She gained weight, passed the car seat test, we took a class for her apnea monitor and at 10 days old she was ready to come home!!!!

And our journey began......

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