Thursday, August 23, 2012

Lily Grace- surgery, scares, and more

Things have been busy, exhausting, extreme highs & lows, and very emotional since our sweet baby has been born.  I've been meaning to update everyone so here is Lily's story in a nutshell (so far):

She was born on Saturday, August 11th in the late morning.  She had apgar scores of 9/9, Ricky & I held her very briefly, and then she was immediately taken to the NICU.  She stayed there until Wednesday, August 15th until she was taken to her first open heart surgery at 7:30 am.  She had trouble with her lactic acid levels in the NICU so they had to work on balancing this through oxygen hoods or what we called oxygen tents so this led them to do surgery sooner rather than later because her heart was just so sick.  Saying goodbye to Lily before they took her behind those double doors for surgery was very, very heart wrenching for everyone.  

Then we saw her again around 7:50 that night once her Norwood surgery was done and she was settled.  Her surgery went well all day but then they had trouble with bleeding so that worried everyone.  They thought they would have to put her on ecmo (heart & lung machine) but she ended up being okay.  

You can try to mentally prepare yourself to see your child after a surgery like this but I don't think you can really be ready for what you will see.  I knew her chest would be open so you could see her heart beating, that there would be tubes in her everywhere, that machines would be around her, but for some reason I wasn't ready for the color that her skin would be.  She had almost normal coloring prior to surgery and she was white & chalky after surgery.  I had trouble walking into her room.. It was physically hard to walk past the doorway because I could see her from the door.. it was really hard.  I made it past the door and eventually you just don't see all the tubes, machines, hear the beeping noises, etc.  

Lily did okay but her lactic acid levels stayed at 20 for a long time when a normal lactic acid is below 2.  Around 5 am on Wednesday morning they decided to put her on ecmo do they did and she is still on it.  Thursday afternoon we were told that head ultrasounds showed two grade 2 brain bleeds and they would do another ultrasound on Friday to see if it remained the same or got worse.  If it got worse then we were told they would have to take her off the machines.  If they took her off the machines then she would not survive.  It was so heart breaking, devastating, and the worse news that we could receive about Lily.  So we just had to wait until Friday to get the results.  (Also, her lactic acids were hanging between 10-12 and her blood pressure was not good either so this along with the brain bleed was really bad). 

So Friday morning about 20 minutes before the doctors rounded in Lily's room I received a call from Ricky that our sweet pug Jasmine was unresponsive.  She started getting sick after Friday night when I went into labor and when our lives got out of routine.  Ricky and my friend Emily rushed her to an animal hospital where they didn't know if she would make it.  She stayed there until the following Wednesday when the vet decided that going home might pep her up because this seemed to be related to dehydration and stress.  

On Friday we found out that her brain bleeds remained the grade two (which was the best news possible), her blood pressure improved the night before, and her lactic acid went to normal ranges.  So they started weaning her from ecmo and things were going very well.  As the nurses and doctors said.. "we were progressing in the right direction".  By Sunday they were ready to completely disconnect her from ecmo (staged process) and remove her ecmo tubes (canulas) from her chest.  Things were great but then she suddenly crashed when I walked in the room to see her after the tubes were removed.  

I started hearing things like "chest compressions, get the board, stat, get the surgeon here, etc.". About two minutes later I was told that her vitals improved and maybe two minutes later she really crashed.  We didn't know if she would make it.  They did 20 minutes of chest compressions until the surgeon arrived to hook her back up to ecmo.  They even sent a chaplain to our waiting area.. Not what you want to see.  It was horrible, awful, a night mare...  She made it thanks to her wonderful nurses and doctors.  Now the concern was why did this happen and if her brain bleed got worse after what she just went through.  I can't even explain with words the emotional experience this was.. to be so close to losing your child and to see them like that.  

So we had to wait for a head ultrasound the next day.  This is such a waiting game but the worse game of your life.  On Monday, August 20th we received the best news that her bleed remained stable.  So here we are again on Thursday, August 23rd as they start the process of removing ecmo from her again.  It is the worst roller coaster ride ever!!  I sit here now as I think they are going to put her back on ecmo because her blood pressure dropped ... Oh no she's crashing..

Tuesday, August 14, 2012

Pray for baby Lily

Please pray for baby Lily as her first open heart surgery is tomorrow morning at 7:30 am.  She has hypoplastic left heart syndrome and this first surgery is called the Norwood.  It is very serious and we really need your prayers.  Ricky and I may be able to hold her again (first time right after delivery) before she goes into surgery.  I really, really pray that happens.  We just love her so much and tomorrow (plus the days to follow) will be really scary.  Thanks for reading, praying, and keeping us in your thoughts!  Love, Amy

Part 1.. Beautiful Baby Lillian Grace "Lily" is here..

Hello.  I'm writing you completely exhausted yet completely overjoyed as I am a new Mom again to a beautiful baby girl- Lillian Grace.  We call her Lily.  She was born Saturday, 8/11/12, at 11:08 am weighing in at 6 lbs 8 oz & 19-1/2 inches long.  

She has a lot of hair, she cried a lot when born, and she received apgar scores of 9 after birth (out of 10).  She's doing as well as I can ask for at this point.  Her Hypoplastic Left Heart Syndrome was confirmed by cardiologists on Saturday and her first open heart surgery is scheduled for this Wednesday morning starting at 7:30 am.  The surgery may last until 1:30-3 pm and we will get to see her sometime in the early evening after surgery once she is settled in her PICU room.  

She is precious, beautiful, and sweet.  I did get to hold her for maybe 1-2 minutes after delivery and Ricky held her briefly after me.  We haven't been able to hold her again but they are trying to let me hold her before surgery Wednesday morning.  

Lily had a hood over her which is more like an oxygen tent over the top half of her body.  She has an tube in her nose, monitors on her head/chest/kidneys/ feet/ etc, and IV's in her hand and belly button.  I can touch her foot & sometimes her hand.  Sunday night around midnight her nurse let me change her diaper, take her temp under her arm, and put a headband on (that the nurse made).  It meant the world to me and I thought I was dreaming this morning when I woke up.  ;).   

Lastly, we are still waiting for the geneticist to see Lily for the first time & it will be several days before we get any genetics testing back.  They won't be taking the chromosome 17 diagnosis away but rather checking to make sure nothing was missed.  

©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge |

Wednesday, August 8, 2012

Hello from the hospital ;)

Hello everyone! So we had another ultrasound last Wednesday and they estimate her weight to be 6 lbs 1 oz at 37 weeks pregnant (and 27th percentile).  Four weeks earlier on July 5th they estimated her weight/ growth to be 4 lb 15 oz and 50th percentile.  Our Dr said not to worry about the percentile  change.  He said heart babies generally slow their growth toward the end.

So fast forward to this Monday August 6th and I started to feel bad at work.  I had some increase in swelling throughout the day, increase in back/ side tightness and pain along with other symptoms.  So I gave in and called the Dr late Monday and they had me come to the hospital to be checked out.  My blood pressure was high along with all my symptoms do they decided to admit me overnight.  They said that it could be the start of pre-eclampsia or toxemia so they wanted to monitor me.

We started with an IV, blood work, baby monitoring (which she's doing great), and a 24 hour urine check.  By 8 am the next morning I started to have ankles again, bloodwork looks good, blood pressure going back down, and baby monitoring still good.  They ordered an ultrasound to check the baby and she looked good too.  I was confused by the weight and measurements but I'm assured that everything was good.  Her weight was now estimated to be 6 lbs 14 oz with an overall percentile of 40th.  Those measurements come just six days since the last reported weight/ percentile check.  Sr said it's okay though and he's wonderful.. So it's ok.  (I worried because last week her leg bone measured 9th percentile and her head was 3rd percentile but he doesn't see microcephalous (sp?) on her so, which is a chromosome characteristic, so that's good).

Well I'm still here Wednesday morning but the plan is to discharge me today and have me come back Tuesday 8/14 @ 39 weeks for a scheduled induction.  I hate to cut this short but I'm hooked up to an IV and my right hand is swollen (I'm right handed) plus I'm doing this post from my cell phone.. So between me setting IV alarms off from bending my elbow so much and trying to type this on a small phone with swollen fat fingers.. I better stop for now.  Stay tuned.  Thanks for reading and checking on us!