April 6, 2005

You are having a good day today Shelby.  I am so glad because this last week has been kind of hard.  You weighed 2lbs 10oz now!  I love when you grow.  They weaned a little bit on your ventilator today.  Michaela is your nurse today.  She is one of my favorites because she takes very good care of you.  I wish I could pick you up and hold you but you wouldn't like that.  I am making you a blanket, so when I am up here I sit by you and sew, read or sing to you when you are awake.  Well I love you so much Shelby. 

April 5, 2005

It is a special day today.  I got to hold you for the very first time!  It was only for about a minute and I didn't get to snuggle you close, but they actually put you in my arms.  You are 3 days away from being 2 months old and this is a moment I have been waiting for a long time.  It's hard to feel like a mom right now.  I don't get to do any of the things that a new mom should be doing.  I don't get to comfort you, be with you, hold you, feed you or even hear you cry.  The only thing I can do for you is pump my breast milk and that is what I will do for you.  I hope you can at least feel my love when I am here.  I hope you know my voice and my touch. I dream of the day you will be home every day.  I know you will get better Shelby.  You are my miracle. 

You are 2lbs 9 oz today.  The Dr's hope that you will be off the ventilator by your due date.  I wish it could be sooner!  Your lungs are so damaged though.  They are deciding on whether or not to do another surgery and remove the dead vein in your arm.  I hope not.  You are a beautiful baby and you know what you want.  You had your eyes open for a while today.  You now eat 17cc of breast milk every 3 hours.  I love you Shelby girl.

April 3rd, 2005

Well Shelby, they  just finished with another surgery on you.  This is your 3rd surgery in your short little life.  They tried to take out your PICC line and it was stuck.  They could not pull to hard or it would go into your heart and they would have to do another surgery.  They made 2 incisions under your right arm and one in the middle of your right arm.  Right now you are sleeping because they gave you a lot of sedation.  I am so sad to see you go through another surgery.  2 steps forward and 3 steps back.  You weighed 1130 grams today, almost 2lbs 8oz! I love you.

March 31, 2005

 

 

(Excerpt from my journal) You are having a pretty good day today.  It certainly has been an up and down battle these last few weeks. Last night you weighed 1100 grams which is almost 2lbs 7oz!  YAY!!  At least you are growing beautiful girl. I love to see you every day.  You were sleeping the whole time that I was here today.  I was able to help with your cares though.  They took out your arterial line which measures your blood pressure and they are increasing your feeds to 14cc every 3 hours of breast milk.  I wish your lungs would get better so that they could take you off the ventilator.  They are teaching me things to do that make you happy.  Like putting gentle pressure on your back.  I love you.

March 4th 2005

The titanium clamp that was on Shelby's pulmonary artery.

(Excerpt from my journal.) You made it through the surgery.  You are a fighter!  I am so very grateful for the miracle that you are! When I first was allowed to see you, you had 14 machines hooked up to you.  I have so much respect for the nurses that work here.  They are so amazing.  Right now you have extreme sensitivity to any light, touch or sound.  They are having a very hard time regulating your blood pressure and any little thing makes you bottom out.  The Dr came and talked to us after surgery and told us how sorry he was and that there is no excuse for the mistake.  We have a long road to go before we are in the clear. 

March 3rd 2005

(Excerpt from my journal.)  Anguish.  Gut-wrenching anguish.  Something awful has happened.  Shelby is in surgery right now for a mistake that the Dr made while preforming a heart surgery on my sweet Shelby.  The Indocin did not work so they decided that on March 1st they would be doing surgery to close the PDA valve in her heart.  I was a nervous wreck but all seemed to go well with the surgery.   I went home that evening feeling good.  They called me later on that night and told me that something seemed weird.  Her oxygen levels were not doing well.  I told them to call me if anything changed.  The next morning I woke up early to get to the hospital.  They had done a scan of her heart but could not figure out what was going on.  You were constantly desaturating and they had to keep bagging you.  I stayed all day while they were figuring it out.  That night after the 3rd scan of your body they realized that the Dr clamped your left pulmonary artery to your lung instead of your PDA.  They said they would have to transfer you to Primary Children's to preform the reversal but that it was a very dangerous procedure.  They use titanium clamps which are incredibly hard to bend and even if they could get it off, the chances of you bleeding out are high.  They gave me a room to be in so that I could process this information.  I leave that night terrified. This morning my mom calls me and tells me to get to the hospital immediately.  Shelby is not well.  I cry the whole way in.  I walk into the NICU and fear overwhelms me.  There are about 6 people surrounding you and working on you. You have 3 chest tubes coming out of your body. Your oxygen saturation's are at 30% and maintaining.  The respiratory therapist is bagging you.  The nurse, Ruby is so overcome with grief that even she is not able to speak. They are trying to transport you but you are too unstable. They close the NICU while they try to figure this out.  I cant lose you Shelby.  They finally decide that it is now or never.  They came to me and told me that I need to say goodbye to you.  I can't.  I pray the hardest that I ever have in my life. I need a miracle.  They think that a medical helicopter is too noisy for your frail body so they decide on an ambulance transfer.  I followed the ambulance up to Primary Children's.  We are in a waiting room now.  Waiting for the call.  Please let it be good news. 

February 28, 2005 The honeymoon phase.

 

This picture makes me sad.  Poor Shelby.

Her itty bitty diaper.

 Shelby had to be on bili lights for a few days.

 The best valentines gift ever! Her hand is the size of a quarter.

One of my favorites

 

(Excerpt from my journal)  Things are going so well for Shelby.  I love her more and more every day and I am so incredibly thankful that I can spend my days here with her.  She has weekly ultrasounds of her head and she has not had 1 brain bleed so far...which is amazing for a 24 weeker!  She is on round 3 of Indocin to try and get the PDA valve in her heart to close.  It hasn't worked the past 2 times so I hope this time works.  If not then they will do surgery.  :(  Shelby is so strong and will push her little booty up off the blankets and try and stretch her legs.  I get to help take your temperature and change your diaper. I adore everything about her.