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..

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 | www.nzaPhotography.com

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!

Thanks everyone...

I just wanted to say thank you to everyone who has contacted me in some form or fashion and then I would like to apologize to so many of you that I have not responded too.  Please know that I have the best of intentions.  I read what you write (email, facebook, comments on here, phone calls, etc) and I mean to get back soon but things never slow down I guess so it just doesn't happen like I want.  So I just wanted each and everyone of you to know that I do read what you send over and I appreciate all kindness, thoughts, and prayers.  

I will be 35-1/2 weeks pregnant tomorrow and she will be here very soon..  If she is not here by 39 weeks then they will induce me.  My last two children were here around 38 weeks so the countdown begins.  We had a cardiologist appointment and high risk appointment (with ultrasound) this week plus my three youngest had a dental cleaning.  I just get worn out so easily now and this heat doesn't help.  

The pediatric cardiologist said that her heart is still functioning and appears the same as each time before (which is as good as we can ask).  There is no leakage, her heart is growing with her body, and it is functioning the best that it can given the hypoplastic left heart and chromosome concerns.  The ultrasound still shows nothing new but they always remind me that ultrasounds are not 100% accurate (and some things are too hard to see until they are born).  They are doing weekly biophysical ultrasounds to check for her breathing, check her heart, and they do movement counts.  She may get her measurements and weight checked this upcoming week at 36 weeks pregnant (or it may be the following week at 37 weeks pregnant).    

I guess that is all for now.  Things are good in the sense that nothing new is good because I was getting hit with something new all of the time in the prior weeks.  She still has her diagnosis that we will face and the three open heart surgeries plus the unknowns of her chromosome concerns.  I won't stop having hope, faith, and love that she will survive and have a happy, functional life.  Thanks for reading!!  Thanks for everything!  

The Swan, the Snake... our kids...

Kids night at Chick-Fil-A:  Blake & Makayla got the coolest face paintings.  I present to you a swan and a snake.  Ethan did not want one and Sarah was not with us but she would have never gotten one anyways.  :)  

Now I hope you enjoy a video of Blake's new favorite song:  We Are Young - Blake is singing with Makayla caught singing parts of it too.  For those of you who don't really know my daughter Makayla, she is super shy so it is a miracle that she let me get video of her doing this.  :)  I had to use a shortened version of the video so Ethan is not in this one (but he asked that he not be in it anyways).  So here is the Swan and Snake's first music video :).. ha ha:

**IT WON'T WORK**.. SORRY!!  It is really cute.  I will continue to work on it and I hope it will work soon.

I will also tell you that Ethan is doing well and having a great summer for a 10 year old.  He still enjoys the summer even when the weather is 105 degrees.. crazy kiddo.  :)  He will be a 5th grader next year which is crazy.  Blake will be in 2nd grade and Makayla will be in first grade- it is all too crazy to think about!  :)

I want to brag on Sarah for a minute- she is 16-1/2 (right Sarah) and she will be in the 11th grade at my alumni high school.  She got 4 A's and 2 B's this past school year and today we found out that she got a "3" on an AP end of year exam which means she can get college credit for her World History class.  We are so proud of all of them!  We have some great kids!

Now if I can just get that video to work.. hmmm....

Neonatologist Appointment

So after our high risk appointment (almost 2 weeks ago), Ricky and I went over to the NICU to meet with one of the Neonatologist who will be taking care of our baby girl after she is born.  Her name was Dr. Lia Gravari and she was so nice, detailed, caring, and wonderful!  She was also pregnant and due August 1st.  I loved her so much but there is a chance will won't see her again because she may be on maternity leave when we have our baby.  :)  We didn't know what to expect because we did not know if we would just be introduced or what our meeting would be like.  She actually took us into a private room and detailed what to expect starting at labor so she spent at least 1 hour explaining everything to us.  Here is an overview of what she said:

When I go into labor there will be 2 Neonatologist (one experienced and one gaining their specialty as a Neonatologist) plus they will have two of their nurses there.  I will also have my high risk Dr and nurses there too.  So it will be a full house and this room is not very big.  :)  She let us know that babies with heart conditions may have a saturation as low as 75% when ours is 100% (think of our breathing/oxygen and a pulse oximeter reading).  She said that they will not give a heart baby oxygen if their range is in their normal range of about 75-80% because if they do they will flood their lungs.  She said you don't want to give them to much oxygen because their heart doesn't function like ours so above 80% is starting to get too high for heart babies.  They will have a pulse oximeter to read her oxygen levels on her wrist.

The Neonatologist will be her main doctor and they make the decision on how long she stay in the delivery room with Ricky and I after birth.  This length of time determines if we get to hold her, how long we get to see her, or if they will just rush her out of the room to the NICU.  Dr. Lia told us that she knows how important it is for parents to hold and see their babies so they will do as much as they can in the room with us to allow us as much time with her as possible.  She said the first call after delivery will be to the cardiologist so they can come do the fetal echocardiogram.  They will give her an IV line through her umbilical/ belly button area.  Two tubes (if I am saying that right) will go through her umbilical line because they serve different purposes:  she will get her blood pressure checked, given sugar water, and calcium (because the heart loves calcium she said).

They will also start the prostaglandin for her heart which will help her heart valve stay open until they perform surgery.  This medicine is VERY important for her to survive until surgery but it does have a side effect:  at first it may make the baby not want to breathe so they give her a second medication to help that which is caffeine like you or I would drink.  The caffeine will stimulate the breathing center so it will be very helpful for her.    

They will be doing a head ultrasound, fetal echocardiogram, a lot of blood tests, have the geneticist exam her for abnormalities due to her chromosome issue, they will consult with a hematologist (because I have a blood clotting condition and they need to check her for this before they perform surgery), they want to do other ultrasounds to check her other organs, etc.  She will have so many tests, scans, doctors, specialists, etc visiting her- especially early on.  Feedings for her will start on her 2nd day of life.  She said that babies who eat better before surgery (so the first 5-7 day) typically are better eaters after surgery.

Her first surgery is ideally about 7 days old, it will take about 4-6 hours to complete, they will have a nurse practitioner update us about every hour on how she is doing during the surgery, and they try to not put the baby on ECMO (for this situation the ECMO is used on infants  who are extremely ill due to breathing or heart problems.  The purpose of ECMO is to provide enough oxygen to the baby while allowing time for the lungs and heart to rest or heal).

After her surgery she will go to the PICU and she will have a different set of doctors for this area.  We have not met these doctors and we will not meet them until she is there or right before (I'm guessing).  For the first 24 hours after surgery she will have a Doctor stay with her in her room to really watch her blood, oxygen, blood pressure, magnesium, etc because the first 24 hours are the most critical after surgery.  We can stay in the room as well.

She wanted us to be prepared for something that we will see after her surgery and we weren't really expecting this:  her chest will be left open for the first 2-3 days after surgery so this is a hard thing to see she said plus her chest will be covered but we can still see everything including her heart beating.  Wow!  That will be hard!  Her chest will be open because they need easy access to the heart in case anything happens and she will have a lot of swelling so they don't want to close up her chest until the swelling goes down.  She will also get a PICC line because it is closer to the heart but that seems to be temporary.

So that was the overview of what she told us.  I appreciated her bringing all of it together for us so we know what to expect.  This appointment made everything very real for Ricky so it was hard for him, especially hearing about her chest being open.  Ricky is not good about being in hospitals, around blood, or anything medically related so this whole scenario is very hard on him.

So if you can imagine how mentally exhausted I was after two days of big appointments like this:  NICU/ PICU tour, first meeting with the surgeon, high risk maternal fetal medicine OBGYN with ultrasound, and the Neonatologist meeting.  It was hard.  Sorry for the delay in writing on the blog but I needed the temporary mental break.  :)  I am now 34 weeks pregnant as of today so things are getting closer and closer- she will be here soon and if she is not here by 39 weeks then they will discuss induction.  My last two children came on their own timing at 38 weeks and my first pregnancy with Ethan came at one day shy of his due date- so we will see.  :)  Thanks for reading!  

P.S.  The neonatologist was so nice that she even gave us her cell phone number when we were done and said that she knows this is overwhelming and she wants me to keep in touch or call her with any questions because they are here for us.  She even gave both of us a hug!  She was just so nice and helpful!