Lucy says

  Mike and I are planners.  We have always been that way.  We knew having a child would change that but Lucy is really testing us and it started before she even arrived.

After we transferred care to Advocate Christ we began conversations about when to deliver.  We wanted to get as close to forty weeks to give Lucy time to grow.
Lucy says:  no way, I'm ready now.  Three pounds is big enough.  
                     And we delivered three weeks early.

Upon arrival, we got all settled in the NICU.  As an a typical hypoplast baby, she was calm keeping her stats very steady.  Surgery was scheduled about three weeks out, March 3rd.
Lucy says:  It's March 1st, I'm ready now.  
                     And for the first time we had to give her morphine to settle her

Recovery went well and she was progressing.  She was off most of her medication and off oxygen.  We started talking about sending her back to the NICU to grow some more.
Lucy says:  I like my PSHU nurses.  I like my private room.  Try it, I dare you.
                     And she coded during a routine thoracic line removal.

 Her recovery from the code was quick and we learned that she would not come home between the Hybrid and the Norwood.  Once stable we were targeting three weeks out....you know, more time to grow.
Lucy says:  You guys are nuts, I'm not wasting time in the hospital to grow.
                      And she cried herself into a code, pushing her Norwood 
                      surgery up two weeks.

Flash forward to this week.  We are finishing up our fifth week at home and everything has been going well.  However, little things just changed a bit.  Her sleeping patterns at night changed.  She seems a little more fussy during the day.  She was easy to calm, but would quickly cry again.  These bouts lasted longer than in the previous weeks.  So Friday morning we waited for Grandpa and headed down for our appointment, not really thinking about the small changes we were seeing.  While we were getting her stats, she got fussy again.  She also got really hot and clammy.  Angela asked about it and I said the hot/clammy skin had happened more this week than in the past, but Lucy settled and even fell asleep during her echo.  After the echo Dr. Ross and Angela came in and said,  "We're going to admit Lucy".  This is mostly a precaution but the clammy skin and increase in fussiness may be a sign that the Glenn is closer than we planned.  They also saw in her echo that the squeeze of her right ventricle had decreased mildly. We had been targeting a weight of 4.5 kilograms for her heart cath.  Aiming to schedule it at the end of July and surgery for August.
Lucy says:  I'm 4.2 kilos, that's big enough.  Let's get this show on the road.
                     And a Friday morning appointment turned into a weekend stay
                     at the hospital.

Friday afternoon we walked up to many familiar faces.  Although Mike and I had not planned this, if there is a concern we want her to be in the safest place possible.  Once settled into her room, she got an IV and they started Milrinone to help with her pumping.  Her heart cath is now scheduled for Tuesday.  After the results are reviewed, we'll start talking about dates for the next surgery.  I think the hardest part about this stint in the hospital is that it was unplanned.  It was so so hard to leave her.  But maybe this will help us plan for the next stay, we'll now get a feeling of what it's like to return and hopefully be somewhat prepared for surgery.

All along Lucy has been telling us, I got this.  Now we just have to trust that God's got her back.  We have been asking for specific prayers, but after Friday I think prayers for peace around the entire process and some strength for the unexpected and unplanned would be most helpful as we venture down the road to the next surgery.


Our supergirl!!

Milestones

  It's hard to believe another week has passed, but we hit a few milestones in the last seven days.  The first and probably biggest for Mike and I is this was the first week we have not had to go to the hospital since January.  Yes, it was in January that we transferred our care to Advocate Christ Hospital and started seeing the Maternal Fetal OB's where we met with them weekly until we delivered.  You sure can pack a lot of ups and downs into six months.  Knowing that Lucy's second surgery will happen this year means that the next six months are sure to be exciting to say the least.

Enough babble, we all know you are reading this for Lucy updates, so I'll just move along.  Lucy turned four months on Friday and although it was Friday the 13th, nothing freaky happened.  That morning she weighed in at 3.73 kilograms....the same size I was when I was born.  What a chubaroo....me I mean!  This morning we hit the second milestone, four kilograms.  For those wondering, that comes to eight pounds fourteen ounces.  We are that much closer to scheduling her heart cath (Doctors are waiting until she hits 4.2 kilos).   The procedure is done in the cath lab where they go in through her groin to take pictures of her heart.  It is a same day procedure, but they keep the kids overnight to monitor.  It will tell us if Lucy is ready for her second surgery, The Glenn.  If we are lucky she will hit 4.2 kilos by Friday and we can have it scheduled!

  The best news of the week though is Lucy drank from a bottle.  As most of you know due to being intubated after birth her suck/swallow reflex did not develop and we have been working since after surgery to teach her how to eat.  It started first with getting her to suck on a pacifier.  Then we added dips of breast milk to get her used to liquid.  When she was doing good with that we used a syringe to drip milk onto the pacifier while she was sucking.  And last we introduce the bottle.  When giving her a bottle, Lucy has to be sucking on a dry pacifier first.  Up until this week, she would take two sucks on the bottle then gag and choke.  Since we want to make sure this is a positive experience, we usually stopped after that.  This week, we tried something a little different.  While sucking on the pacifier we used the syringe to drip milk to prepare her, then we switched out the pacifier and put in the bottle.  She took two sucks, closed her eyes, paused and swallowed, then  two more sucks and did the same thing.  She took ten milliliters!  I almost couldn't believe it.  Since then we have been trying two bottles a day.  Sometimes we do really well and other times we throw up down mom's shirt.  We will see the speech therapist at the next appointment and she will evaluate Lucy to see if she is ready for a swallow study.  Passing a swallow study would mean she gets to eat by bottle and we can remove that pesky feeding tube that I am terrified on a daily basis she will pull out.

  The last milestone was she stopped another one of her medications.  Lucy was on captopril for blood pressure.  It is a huge milestone because this medication can lower oxygen saturation.  Right now she has been consistent at around 78 -79%.  We are hoping to see a rise because at our appointment this Friday we will be doing an oxygen test.  This is where they turn off her oxygen, put on the pulse ox and monitor her oxygen levels.  If she can keep her levels above 75 % we will get to do a trial at home over the weekend off oxygen.  If the trials goes well, the doctors will take her off oxygen for good.  That would mean one less tube and removing the cannula that irritates her nose so much.  This would be just an amazing step as it would give us a little more freedom to take her places and be out of the house.

In the coming week we ask specifically for prayers about her oxygen test and bottle feeding.
 - That her oxygen saturation levels can maintain between 75 -85 % without the help of oxygen
 - That she continue to make progress eating out of a bottle.


and for those of you wondering about the outcome of Lucy's four hour Father's Day nap.  It turned into an eleven hour overnight sleep.  That chick was tired!

Just a few shots from this week:

Sometimes she can just barely stay awake.

 Trying out the bumbo...not quite big enough for it

Where's my pot of gold?

Happy Father's Day

Today is extra special as we celebrate our first Father's Day and Lucy is doing great.  Her present was a four hour evening nap, which possibly means a long night.

First time father and he looks like a natural!

And one of Grandpa Joe

We are four weeks home and we are slowing starting to settle in.  The first week back to work went very well.  The grandmas were here the first three days to care for Lucy and they did amazing.  It doesn't hurt that they could talk to Lucy for hours and that's her favorite past time....attention!  She is cooing and smiling all the time.  We are also very lucky to have such an amazing extended family.  My father is still recovering from knee surgery so my aunts volunteered to care for Lucy until he is healthy.  We appreciate it more than you know!

We can hardly believe Lucy is four months old, but as I look back through pictures we can see she has changed a lot.  You can see the pacifier is shrinking.

As of now we are progressing well.  Our biggest changes are we have made the switch to breast milk and we are down to bi-weekly appointments.  The change in food has had a big impact on Lucy's acid reflux, which means more smiling and less crying.  At our last appointment we saw the speech and occupational therapists and they have said Lucy is right where she needs to be at 4 months and we are doing a good job working with her.  Our next big obstacle to tackle is the bottle.  The suck/swallow reflex that develops automatically at birth is hard to teach.  We started out with dips on the pacifier so she can get used to the milk.  Then we graduated to using a syringe to drip milk onto the pacifier while she is sucking.  The last step is the bottle.  We have tried a handful of times and she gags/chokes on the milk.  Today however, we got through four milliliters only choking once!  I think we still have awhile, but we'll take the small steps any day.

Today was the first day we tried naps in her crib.  We have been doing naps in her swing in the family room due to convenience (feeding and oxygen cords make it hard to move around).  I would call it a success.  Lucy is really tired when she rubs her eyes and pulls at her oxygen cannula.  When we saw her doing this we took her to the bedroom and worked to get her to sleep.   It takes us at least two tries to get her into her crib as being held is her comfort, but I'm hoping as we work on this change it will eventually only take us one try.  She took three naps, the first two were about an hour and the last one (still ongoing at 8:44 pm) is at 4 hours. Maybe by the next update we'll be on some sort of schedule...

Eve of my leave

I go back to work tomorrow, sigh.  It seems like I've been gone for a long time, but not really at home.    Of course like any mom, I'm not sure I'm ready to go back, but I'm also ready for a little distraction.  In the past weeks our parents have been over learning some of her care, her cries and what we have tried to set as a routine.  It is much harder to hand over the reigns of her care than I thought.  But it is really great to have a support team that is willing to do so much for us.

Since the last post we have moved Lucy's bed out of the living room and into our bedroom.   Sleeping on the couch, although comfy, is not great for our backs.  We bought a bouncy chair for the living room so we would have two things to place her in.  She takes her naps in the momaroo and then we have awake time in the chair.  Sometimes when she falls asleep in my lap though it's easier to set her in the chair....see below

Our daytime routine isn't much of a routine.  We wake up between 5:30 and 7 am, then it's pretty much whatever Lucy feels....crying, napping.  We aren't really concerned about a daytime nap schedule because, wait for it, she sleeps through the night.  Although I probably just completely jinxed it.  She will usually crash around eight o'clock in her swing, then we move her to the crib when we are going to bed.  It's a two person job.  One person mans Lucy while the other mans the feeding monitor and oxygen.  We seem to have it down good.

Lucy loves talk time and her mobile.  Some mornings I would turn on her mobile and she would lay in bed watching it smiling.  Other times, we just sit her in the chair and talk to her and she smiles and giggles.  She has started cooing and it is so funny because she gets hiccups every time.  No idea if that is common or not.

 

It is really hard to pack her up to go anywhere and it really takes two people.  Needless to say we haven't been out too much.  We took our first outing to my sisters for a couple of hours and it was a successful trip.  Other than that we have been to the doctor 4 times (for check-ups) and one walk around our condo complex.  She was so excited to be outside she could barely stay awake.

As for medically, she is doing great!  She is now up to 3.57 kilograms (she left the hospital at 2.98) which roughly translates to 7 lbs 11 ounces.  Her cardiologist is pleased with the weight gain.  The only other change we have made since leaving the hospital is her feeds.  We have increased from 16 ML per hour to 21 ML per hour.  She is also almost back to breast milk, yipee!  For three days we are doing half tolerex (fat free formula) and half breast milk.  Then we will switch over to fully breast milk and start fortifying it.  As for her next surgery, the cardiology team looks for three factors before scheduling:

1.  over three months of age (done!  we were there before we left the hospital)

2.  Oxygen saturation's have to be on the decline (target is 75% - 85%).  Lucy's saturation will probably not decline since she is on oxygen.

3.  Weight needs to be between four and four and a half kilograms.

What does this mean....pretty much once she hits the weight mark we will look to schedule the surgery.  Prior to that, she will go in for a cath.  This means they go in through her groin with a camera and take pictures of her heart.  The look at pulmonary arteries and aorta to see if they are able to sustain the next procedure.  Crazy to think that we are already looking to surgery number two.  I spoke with the nurse a week ago and she said with Lucy's weight gain already we could be looking at doing the cath by the end of June.  It is a day procedure, but they keep patients overnight for monitoring.  If results look good, we schedule the bidirectional glenn.

My mom told me that the night before I went to work Lucy would change her patterns (like I did for my mom).  She was right, it took us an extra two hours to get her to bed tonight and as of now I'm a little weary for the rest of the night.  I'll sign off with a peaceful picture of her napping.  I would love to say that nap lasted more than ten minutes but the likelihood of that, slim to none.