My 365

Sunday, April 21, 2013

Baby Story Part Duex (Lily's Story)

So as mentioned in the previous baby story post.  During my pregnancy we found a problem with Lily.  She was retaining too much fluid in her sac, which could be result of several different issues, but as advanced as medical technology is, it still has limitations and we didn't know for sure.  The answer we were given at first was "sometimes it just happens".  After a few more ultrasounds the doctors discovered that the cause of the additional fluid was due to her intestine being blocked because it was narrowed and underdeveloped, officially called a jujenal atresia.  What this meant was she would require surgery as soon as she was born.  All the doctors up to this point were very careful not to alarm us and said that it should be a relatively easy fix.  We consulted with the maternal fetal doctor, the NICU doctor and finally we went to consult with the pediatric surgeon who would be actually performing the surgery.  He said all the same things, walked us through the prep and time after delivery.  Then he started talking about the possibilities of complications they could encounter.  The one risk he said was very rare but also a possibility so he was obligated to share it with us.  He said that they could get in there to repair the blockage and find that there were no intestines past that point and then there would be nothing they could do.  And there it was.  The thing I had not allowed myself to think about, the thing all the other doctors were very careful not to mention, but now there it is, staring me in the face as hard as I was staring at a glass apple sitting on the table of a small conference room in a nondescript doctors office.  Mike told me on the way home that I looked like I had been punched in the stomach.  It felt like it.  I didn't know what to do with this information.  He said it was unlikely but still there, lurking in the back of my mind.  What if I had lost her before I even got a chance to have her?  How could I live with that?  How could I survive to be a mother to the other children who needed me, including her twin?  I took this information and did what I do best and I worried.  I internalized it, pretended to happy and felt a sick dread with every passing minute.  I prayed for her, I asked my grandmother to hold her and watch over her and protect her.  I knew, deep down, that everything was going to be ok, but until it was over I was never going to be completely sure.

So fast forward to the delivery.  She was born and she and Rosie were perfect.  I got to say hello to them and then they were whisked away to the NICU.  Because she couldn't eat Lily was immediately hooked up to and IV giving her vitamins and nutrition.  So it was a few hours before I was able to go back and see them.  They wheeled me back to the NICU and they had the girls in two separate rooms.  We saw Lily first.  She was still messy from the birth, had her leg splinted with the IV and a tube down her throat.  I have never wanted an image out of my head so badly, until later that it is, when I saw her after surgery. They let me hold her.  It took several minutes and a nurse to move all the lines and tubes before I could hold my baby.  I couldn't just pick her up. I talked to her for a second, then hummed to her, then just held her and kissed her head.  Then is was time to go see Rosie and I was pretty worn out at this point so they wheeled me back to the room.  The next day (Friday) they were taking her to Children's Hospital at Scottish Rite for her surgery on Saturday. Mike had spent some of the night in the NICU with the girls and they took me back in there to see her that morning before they prepped her to go.  This time I fought back tears, and I quietly sang to her.  I sang the song from Three Men and a Baby, "goodnight sweetheart, well, it's time to go, I hate to leave you but I really can't stay, goodnight sweetheart, goodnight." They brought her in one more time before she was going to be transported.  She was all bundled up and riding around in a high tech crib.  I said goodbye and she was on her way.  At this point I have held her once. Once. Mike was already at the hospital waiting for her to get there, so I was left by myself with my worry.  Later that day they decided Rosie was doing well enough that she could be brought into my room with me.  I think they were partially doing this so I wouldn't focus on Lily and the worry so much.  So I gave Rosie all the cuddles I had for Lily and her and waited to hear from Mike, from the doctor, for something.  Mike was going back and forth from Children's, to the hospital I was in and to the house to check on the kids.  He was on zero sleep for three days straight.  But since I couldn't be with Lily I was happy he was.  I didn't want her to be alone.  The night before her surgery he held her for 2 hours, the entire time they would allow him to be with her, he held her, just in case that was the only time.  So morning came, the surgery started and they told me it was only supposed to take two hours, which came and went, and I was beginning to worry but finally Mike called and said everything was fine.  Sigh of relief. Huge sigh.

Now began the recovery, at least two weeks in the hospital.  They had to put what they called a PIC line in her head which is what they used to give her medicine and nutrition and she still had the tube down her throat which was being used to remove all the bile and stuff from her stomach. So finally on Sunday they were going to let me and Rosie come home.  It took FOREVER to get discharged but it happened and we were home by the evening.  So of course first thing Monday morning Mike knew that there would be no stopping me from going to see Lily, so we packed up Rosie and made the 1 hour trek to the children's hospital, the drive that he had been making every day.  Once we got there, Mike tried to find me a wheel chair since I was still recovering, in pain and as you know from my previous post, had no core muscles whatsoever and therefore had a hard time standing up straight and walking.  However there were no wheelchairs to be found to fit a person over the age of 6, so walking it was.  I just wish it hadn't been such a LONG walk, but nothing would have stopped me.  We finally get up there, and only one of us could go in at a time because Rosie wasn't allowed to go into the NICU.  So I had to walk in by myself.  I had to call in to a nurse to open the doors for me.  I had to wash my hands and sanitize.  Then the second set of doors opened and I walked into a large room with beds sectioned off in groups of four in a star pattern.  Almost like cubicles only with little plastic baby beds.  The beeping was constant and annoying.  I couldn't imagine all these tiny babies trying to sleep with that noise.  I walked all the way to the back of the room where she was.  When I saw her I couldn't hold it back any longer and I just started crying, the hard kind of crying, with snot everywhere.  The nurse looked horrified and tried to reassure me she was fine, which technically I knew, but nothing ever prepares you to see your baby laying there peacefully with machines and tubes and wires and the beeping, not being able to hold her, not being able to take it all away.  That's what a mother is supposed to do right? Take away the pain and the fear? The guilt was overwhelming.  I couldn't breathe and it didn't go away for a very long time.  The guilt that I wasn't with her at all times, the guilt of having done this to her (I didn't say it was all logical), the guilt of having to leave every day, the guilt of being able to nurse Rosie but not her.  It went on like this for two weeks.  I saw her almost every day. I held her as much as I could.  I pumped milk for her so she could start eating...and she did!  After a minor set back where she had some bleeding in her stomach and needed a transfusion (another SUPER fun day), she was able to try and start eating.  She hadn't been allowed to eat since she was born and I was terrified she wouldn't be able to get the hang of it.  But she ate her bottles with vigor and she wanted more!  So finally they let me try to nurse her and warned me that it may take time and work, but when we went to do it, she got right to it and nursed like a champ.  That's my girl...we know how to eat!  This was just another step towards her coming home.  She continued to thrive and two weeks on the dot we were able to bring her home.  But the guilt didn't go away.  This time the guilt was for the other babies who couldn't come home.  One family we got to know had a baby who was VERY premature and had a lot of health problems, she had been there for 3 months and were suffering a big setback.  We weren't sure if she was every going to get to come home.  So many babies in there, all for different reasons, but all precious.  My heart goes out to those parents and the ones who are and will be in the same position.  I may have only had to endure it for a little while, but that was enough.  The people at that hospital are amazing and special people who have an unimaginably hard job. I took me a while to get this post up because I was dreading having to relive these feelings.  So now it is done, and it won't stare me in the face anymore.  Now I can look over at her sweet sleeping face with her little bare feet sticking out of the covers and know that I will be able to hold her whenever I want and feed her without inhibition and love her and Rosie unconditionally.  Speaking of, she is beginning to honk at me, must be time for the midnight snack.
Lily hours after she was born

Rosie after she was moved to the room with me

Lily recovering from surgery being held by Mimi
Lily's first night home and their first time seeing each other since birth


  1. I love that you have documented this, as hard as it was to write I'm sure. It was a long few months for you, and I love seeing Lily and Rosie now, and thinking that these days are long past gone, and they are giggling and smiling and blowing out those diapers. Thanks for sharing their story.

  2. I'm so impressed you wrote this all down. And remembered so much! You are so strong and your babies (all of them!) are lucky to have you as their mama!!!
    Thanks for sharing your blog. I'll have to read through when the kids are in bed.