Fed Up - Literallly & Figuratively

Olivia made no attempt to hide her disdain for her NG tube, so around 3am this morning during a feeding with Daddy Olivia decided that she was done with it entirely.  The details are sketchy, but Brian and Olivia came down with her bawling her eyes out and him saying "We have a problem".  I tried to salvage the tube but as soon as I touched it the last half inch came out of her nose with no hope of re-inserting it.  At 3am I wasn't about to try to put in a new tube so I figured since we were headed down to Hope for appointments that it could wait until the doctors told us for sure that they wanted the tube back in.

Good thing I waited because the staff was so impressed with her ability to take her meds orally and finish the majority of her bottles that they said she can do without the tube.  They also said that we can now start feeding her on demand like a normal healthy baby so long as we measure her daily intake to make sure she doesn't get overloaded on fluid.  She behaved really well for her Echo and the results were excellent.  We were instructed to discontinue one of her meds entirely and reduce the dosages on another - all of which is great news.  For our first visit to the clinic, things couldn't have gone better.  I'm realistic that not all visits may be as positive as today's was, but it was a huge morale boost for Brian and I that we are on the right path for Olivia to have the best chance of success for her future surgeries.  Olivia is definitely doing her part, she's got a fierce appetite, sleeps fairly well and is moving around all her extremities and head in such a way that she's rapidly catching up with her peers. Such a great day!

8lbs 11oz and Counting

We had another visit from the home nurse today and she has nothing but good things to say about Olivia.  The little missy is now up to 8lbs 11oz and she was just shy of 8lbs last Thursday in the hospital so I would say that the weight is coming on quite nicely.  The weather is supposed to be beautiful tomorrow and I'm hoping that we'll be able to take our first walk outside together.  Not too much else going on, I will definitely make sure to post more after our visit to the heart clinic on Friday.

1st Peds Appointment and 1 Month Old

Happy Birthday Livvy!  You are now one month old!  While I know most of the first month wasn't very pleasant for her, Brian and I really intend on trying to make all the time at home between now and the Glenn as happy as possible for her. 

Besides her one month birthday, today we had our first appointment at the pediatrician's office.  I loved the doctor that we got to see and although it took about 20 minutes to get through all of Olivia's medical history it was well worth the trip as I got a few questions answered and updates on where Olivia is charting against her peers.  First accomplishment she is now weighing in at 8lbs 9oz so she has already surpassed her birth weight which is exciting but only puts her around the 40th percentile of her peers for weight, same goes for head circumference which I think is weird since she looks really proportionate.  As for height...she is 22 1/4" long and now at the 83rd percentile.  This is so exciting since Brian and I come from fairly short families...maybe she did get some tall genes - or it could just be too early to say and she'll stop growing around the age of 5 (just kidding!)

Our other accomplishment today was that she got into her carrier without too much fussing whereas she had a complete meltdown yesterday and Sunday when we tried to put her in.  Hopefully she'll warm up to bath time too, because right now she's taking after Gracie and Wilson (my cats).  Tomorrow brings another home nurse visit and Friday we have our first appointment at the Heart Clinic back at Hope.  Lots of appointments so little time!

What a Weekend

Well our first weekend at home was not without excitement.  Olivia had her grandparents over to welcome her home on Friday night, the home health nurse came by on Saturday and then her Uncle Craig and Aunt Katie were over yesterday and then this morning she had another nurse visit.

The home nurse visit on Saturday could have gone better.  While the nurse was very nice, she wasn't very organized and Olivia was put through more because of the lack of preparation.  Then once Olivia was screaming her head off and on her way toward turning blue the nurse told us that we should really calm her down because she shouldn't be crying like that.  I'm not sure about all the other heart parents out there, but I really take offense to the health care provider that makes my baby cry then instructing me that I'm not doing a good enough job to soothe my baby and keep her heart from getting too stressed.  In fact I'm guessing that after a few more times of getting fed that guilt trip, I'm going to lash out irrationally at someone.

Other than that, now that I'm home with the munchkin and Brian's at work, I need to work on getting into a set schedule that allows me to be productive getting things done that I need to accomplish.  The juggling part comes in making sure meds are filled and given at the correct times and keeping up with nurse visits as well as her weekly visit down at Christ for the Heart Clinic.  Either way, all of the scheduling is still much better than having to deal with the constant badgering that Liv had to endure during her hospital stay.  It is so nice to peek in on her during one of her naps and see her sprawled out in her pack n play or bassinet because she's so relaxed.  Right now seeing her actually enjoy some of the day to day is the most fulfilling thing that Brian and I can witness before we have to take her back in for the Glenn in a few months.

Home Sweet HOME

That's right - we're home!  It was iffy right down to the wire as to whether or not we were going to get the OK from the staff and the blood test that everything hinged on was a disaster.  Olivia has been stuck so much over the past four weeks that right now her veins aren't really giving up any blood in reasonable quantities to be used for testing purposes.  Finally the doctor threw in the towel and said everything else looked good enough to let us go home.  After all, we will have to come in weekly for follow ups between now and the Glenn surgery so it's not like she will be neglected.  In fact, tomorrow is the first visit we'll have from the home health nurse to make sure that Brian and I are following meds and feeding appropriately. 

I cannot say how wonderful it is to be home.  I made a promise to Olivia before she was even born that if since she had to fight so hard to survive that I wouldn't come home that whole time so we could finally do it together when she was well.  It's only right as her mother that I stick by her side just the way that my mom has done for me throughout the whole ordeal.  My mom was willing to drop whatever she was doing to come to the hospital, Ronald McDonald House or wherever I needed her to be at any time so how could I offer any less to Olivia? We are sitting here together tonight updating the blog while Daddy is hard at work on the last of his school projects before graduation.

As uncertain as the last few weeks have been, that's how great the next few should be for us as a family.  Olivia is home one day short of being four weeks old, Brian will graduate with his MBA, Aunt Linda will be coming home from Paris to officially graduate from UPenn and warm weather should allow for Olivia to actually see some of the outside world.  Thank you to all our friends and family for your continued support - we love you all.

So Blessed

So Brian and I are sitting here tonight in Olivia's room down on the general patient floor looking at our beautiful baby in absolute amazement at all that she has been through in the past three and a half weeks.  To look at her hanging out in Daddy's arms, you would never know that she only has half a heart or has undergone massive heart surgery in recent weeks.  She's now a proud member of the "Zipper Club". 

She is completely on room air, taking some of her feedings by bottle, and sleeping much better than she did the first night we were on the floor.  To say that we have overcome all our obstacles after this first surgery would be very premature as she was having issues maitaining her potassium levels so they discontinued her BP medication, but now her BP has been slightly more elevated than they would like so now we're going to be watching that as well. 

Still our plan is that we are going to go home tomorrow if the potassium levels are at an acceptable number.  While on one hand I feel like I've been here forever (four weeks tonight); I can't believe that we're talking about taking Olivia home in just three and a half short weeks after her surgery.  In spite of her ups and downs that we have had thus far, it doesn't compare to some of the struggles that her fellow heart babies have had while we've been here.  Today we were reminded of how fragile these babies can be when another family from the Ronald McDonald House experienced their baby coding on the same floor as us.  The baby has been in the hospital most of her entire first year of life dealing with setbacks and operations pertaining to her defect and her parents have been with her throughout all the ups and downs. 

I watched that mom stand in the hallway crying and helpless as surgeons and doctors rushed to bring her baby back to life and hoped that I would never experience that range of emotions for myself.  At the same time, I wanted to draw the curtain to our room to save her from looking in at our happy gurgling baby as hers struggled to come back from literally the brink of death.  It's in these moments that I am reminded again of how blessed we have been thus far, yes Olivia has definitely had setbacks and struggles so far but we are note at a point where we need to worry about her health on a minute by minute basis like some of these other parents have to with their children.  Life is such a fragile thing and it can be gone in a fleeting instant, but one of the best things about Olivia's condition is that Brian and I are more conscious of this than ever and that itself is one of the greatests gifts she could have given us. 

On a complete side note those of you that are interested in more information on the Ronald McDonald House, here's a link for the Chicago/Northwest Indiana Houses : http://www.rmhccni.org/

Less Drama from the Mama

Oh what a difference a few hours of sleep can make.  This morning I was on the border of despair thinking that my baby had been posessed by a Linda Blair sort.  Around 6:30am Olivia finally passed out from exhaustion and my mom came to my rescue shortly thereafter which gave me some time to get in a couple of hours of sleep to save my sanity. 

Morning rounds came and went; the doctors decided to restart her feedings upping them to 50cc every 3 hours and it couldn't have come any faster for my poor starving baby.  I think it's part of the reason she slept so nicely all morning.  Later Olivia had OT and we were given some exercises to improve the strength in her neck since her head is still pretty floppy from being in a crib for virtually the first two and a half weeks of her life.  Speech therapy also came to visit and evaluate the munch to see how well she could take a bottle.  On her first try she took around 35cc in 10 minutes which I'm told is pretty impressive. 

Everything with Olivia is slow and steady.  She was on room air up until tonight and if she continues to maintain her saturations at an acceptable level then the pesky cannula will be out tomorrow.  Feeds tonight will all be given via the pump but I may be able to give her a bottle feeding in the morning.  It would seem that most of the rest of the work to getting Olivia discharged relies on Brian and I learning how to do certain things like adminstering meds, placing an NG tube successfully and other miscellaneous things that pertain to daily monitoring of her vitals.

Overall today was a much better day than last night but I'm going to reserve my excitement as I don't know what tonight will bring.  I do know that it can't get much worse so we really only have better nights to look towards.  That brings certainly brings some comfort.  It's a good sign in my mind that she's at least sleeping comfortably right now and by this time yesterday she had already turned to the dark side.  Knock on wood of course... 

Worst Night Ever

Well our wishes partially came true when Olivia took the little red wagon ride from the PSHU to the 2nd floor.  She slept through the entire momentous occasion and hung out all afternoon.  Later Brian swung by to see how she was doing and got to hold her to his heart's desire.  By around 8 things started to get dicey when the amount of her crying started to pick up.  It seemed that she only wanted to be held. 

Then during a diaper change I spotted a tiny spot of blood so I let the nurses know which subsequently led to a stop in all her feedings and a stomach xray.  Brian had Olivia all nice and cozy in bed when the xray tech came and woke her up and there was no hope after that.  Between her tummy growling and the fact that she was tired, it was just a disaster.  Brian left around 10 thinking he had her calmed down again and she essentially cried from the minute that he was in the elevator until around 630 this morning.

I think I almost lost my mind.  I'm aggravated with the nurses, the doctors and pretty much anyone in general including Miss Olivia.  I love her dearly and there's nothing I wouldn't do for her but she about maxxed out my patience in the last 12 or so hours.  I feel bad for Olivia too though as she's starving, had to get stuck twice for additional bloodwork and just keeps getting bounced around between assessments, etc - so much for even trying to get rest.  As I'm typing this, she has been woken up once more and is screaming her little head off again and I'd like to find a nice place to stick my head and hide.  I do however think that some good punishment for prisoners would be to pump a crying baby into their cells over a loudspeaker, it may really cut down on the crime rate!

Still Trying to Count Sheep

Brian refrained from running over to the hospital last night to check on the munchkin and my 2:30am phone call had nothing but happy reports of peaceful sleep for the little one, so I was able to sleep peacefully throughout the night. 

Today brought on more bright eyed alertness from the little missy.  Eventually though, it caught up to her and she started to get fussy all over again.  The nurses solution is to first try to deal with the babies' irritability by giving them Tylenol.  I don't know why this has been effective for them, but I've seen it work with Olivia so I was willing to let them try it.  This time, it did aboslutely nothing for Olivia.  She fussed, tossed, turned and cried throughout the afternoon in between 15-20 minute cat naps.  Nothing of enough substance to really get her much needed rest.  Eventually her nurse gave her an oral sedative and she conked out around 5. 

I'm not a fan of medicating just for the sake of medicating, and in this particular case I really want to know what's at the root for all this newfound crankiness.  Moreover, sedatives will not be available to us once Olivia is moved down to the regular patient floor nor will Brian and I have access to it once we're at home so I'd like to try to be able to get her to sleep without the meds.  Our night nurse was a little more helpful.  She threw out a few different possibilities:

1. Most babies get their food through bottles, which we're currently giving to Olivia via an NasoGastric tube aka NG tube.  She's not expending any energy for her food while normal babies get tired after a bottle and drift off to sleep from the effort that was required to suck it down
2. Olivia doesn't have much visual or audio stimulation in her day to day for right now.  She's been in the same crib in the same room for almost three weeks and that gets old even to babies.  At home she would be getting moved from room to room and from crib, to swing, to bouncey seat, etc - another reason why babies tend to recover faster at home
3. The worst of the causes would be that she either has some residual pain from surgeries or an IV that is causing her pain or discomfort or she is experiencing a withdrawl from her long use of sedatives/pain meds following intubation and surgery

In total we are so lucky that the step down unit is in our forseeable future and as much as it pains me to see her so irritable these last few days...I know from just the other families on our floor that things could be so much worse.  We are still making forward strides and that is all that matters. 

The Good, the Bad, the CRANKY

Today started out really well, Brian and I got some much needed sleep and woke up fresh as daisies.  We went across to see the munchkin and found her sleeping away as well as receiving a good night report from her nurse. 

Later on, Grandma and Grandpa Donnelly came by to see her and were pleasantly surprised to see her wide eyed in her daddy's arms.  Brian loved being able to hold Livvy while she was wide awake just content to look around her room and hang out.  Once the guys took off to get Brian's flat fixed (yes I know, if he didn't have bad luck - he'd have no luck at all); I got to hold Liv and she was still wide awake.  Rookie parent mistake, we should have put her back in her crib after she was awake for over an hour instead of taking advantage of her good nature. 

The payback we got tonight for taking advantage of her good nature earlier in the day hardly made it seem worth it looking back.  She cried for over an hour and yes, while we're aware that babies cry sometimes regardless of a clean diaper, full tummy, etc - our baby can't cry for prolonged periods of time without causing herself stress and potentially hurting her vitals.  I'm a firm believer of the addage of letting a baby cry it out sometimes, but Olivia and heart babies in general can't deal with that same philosophy.  Letting her scream it out for a few minutes tonight raised her BP by over 10 points and her O2 sats started to drop off, both of which are big No Nos.  Eventually Brian and I had to give in and ask the nurse to give her a mild sedative so she could get some much needed rest. 

Rookie parent lesson learned.  We need to get the little Missy on a schedule and start following it to avoid nighttimes like tonight.  As wonderful as it is to have her awake and interacting with us, it's not worth it to see her miserable at the end of the day.  It's also a helpless feeling for us that we had to rely on a medicine to put our baby to sleep instead of being able to soothe her ourselves.  Chances are I'll wake up at some point tonight to find that Brian has snuck out of bed to go check on her.  I'll have to keep everyone posted on that tomorrow.  :)

Here's to a peaceful night of sleep for Olivia!

G'night

In the Mood for Food

Well after her crisis yesterday, Olivia still managed to right her little ship overnight so that she could get some food in her today.  The first test for any of these babies with milk or formula is 3 ml per hour, as of tonight Liv was getting 15 ml per hour with no sign of reflux or digestion issues.  With the re-start on milk, the munchkin was in a much better mood today.  I held her for over an hour this morning and there was absolutely no crying involved - it was great.  She's swollen today from all the extra fluids they had to give her yesterday, but hopefully it'll be gone soon enough. 

On the medicine front, we only have one pump left and hopefully that will be gone by morning.  Everything else is now going orally through her NG tube which is very nice.  When we left tonight her O2 was set at 25% and Nitric was down to 10 parts.  Once she is weaned down to room air and off the Nitric entirely, the next hurdle will be going from the pressurized nasal cannula to the regular flow cannula. I can't make any estimates as to when all these changes will take place because clearly Olivia moves at her own speed.  It was just very nice to see her so relaxed and snoozing away the day today after her crazy day yesterday where it was plainly evident that she was displeased and uncomfortable.  Happy Olivia = happy Mommy

Two Steps Forward & One Step Back

I started out this morning with my typical visit to the munchkin and all looked well except that she was still a little fussy.  They had turned off another one of her heart meds and completely weaned her off the sedatives, so two more pumps were happily leaving us.  Her feeds were looking good and her nurse had planned to remove her last drainage tube this morning and then increase her feeds to actually be small meal size instead of a constant little drip.  I hung around for a couple of hours and felt comfortable meeting up with my parents before going to visit her again.

By the time I got back to her room around 1, there were literally no less than 12 people in her room.  In case any of you are in unfamiliar territory - that's never a good sign for any of these babies unless the doctors are doing rounds; which in this case they were not.  Apparently not long before I showed up she had her drainage tube removed followed by a nice round of deep suctioning.  My little missy decided that was all too much action for her and decided to completely de-sat - meaning that her Oxygen levels fell to the low 30's as opposed to the nice 70/80ish range that they had been in consistently.  This creates panic for the doctors and nurses when they really don't have a good indication why it happened. 

All that we can figure is that she was so displeased with the deep suctioning that her pulmonary vessels clamped down and deprived her extremities of oxygenated blood flow.  This made her gray and overall not very healthy looking.  With a little extra meds here and there, everything is back on track tonight.  I left her sleeping comfy, but she has been much more irritable this afternoon since there's been no more food since her latest episode.  Again, can't say that I blame her, but I wish she understood this vicious little cycle that she's got herself on.  As with my last few entries, I'm just hoping tomorrow brings her some food, because now that she's had the feeling of a full tummy she definitely isn't loving this empty tummy business. 

To Have and To Hold

Typically these words are used in wedding vows as most of you know, but they definitely represent a huge part of Brian and my emotions as of late.  First, we are so thrilled to have Olivia here with us after her first major surgery and as of today, we're absolutely ecstatic that we were able to HOLD her!!!

Of course, in typical Olivia fashion she spent the entire time I held her crying or staring me down with dirty looks.  Then this afternoon when "Daddy" got to hold her, she slept the entire time and was absolutely at peace for him.  Obviously Mommy is a second class citizen to Miss Olivia. 

Tonight, they were lowering her oxygen levels hopefully low enough that she will be able to start getting some food again really shortly.  At this point it's almost been 48 hours since the last time she had anything in her tummy.  I feel for her since I went almost 72 hours waiting to eat or drink during the entire induction and recovery process.  Her vocal cords have already gotten stronger since yesterday and she lets her displeasure be known to anyone who's within earshot.  I say I can't wait to hear her cry fully but I might regret that statement later as she's already pretty loud today. 

Here's to hoping for a food filled day for Miss Olivia!

Off the Vent

Well that's our big news for today.  Olivia is off the ventilator and on a pressurized cannula to help give her oxygen.  This is a big step in her recovery process, but also a scary one since she hasn't really been adapting well to changes after the surgery.  When I first saw her this morning she was sort of pasty white/gray looking and her breathing was really labored which didn't make me feel very comfortable with the situation.  By this afternoon, her color was nice and pink and her breathing wasn't nearly as labored as this morning. 

The nurses have had her sitting up a little bit to help break up some of the mucus left in her from weeks on the ventilator and are rotating her from side to side about every 45 minutes to keep breaking up any additional fluid that could be in her lungs.  I was able to hear her cry a little bit, right now it sounds kind of wimpy (Brian said picture Simba in the Lion King trying to learn how to roar) and she's starting to toy around with the idea of taking a pacifier.  The doctors and nurses are going to watch her very closely over the next 24-48 hours to make sure she's not getting too tired or stressed out from this latest milestone. 

Hopefully she's more stable tomorrow so that we'll be able to hold her. I hear the weather is going to be beautiful tomorrow and I've already forewarned the nurses that the baby in bed 1 might go missing now that a ventilator isn't needed for her care.  I just want to pack her up and be on the run!  In all seriousness, I am just hoping for stability so we can move on to the next step of getting her to take feeds of substantial portions.  This morning's weigh in showed that so far Livvy has lost 1lb 4oz during her stay here.  We've definitely got our work cut out for us in terms of getting her to pack back on some weight before the Glenn in a few months.  I know I've got a few pounds I could spare to her cause.  :)

Lazy Sunday

I should have known that Olivia was going to take after me today when I really had to drag myself out of bed this morning.  By the time Brian and I got over to the hospital, her chest tubes that were draining fluid off her lungs had been pulled which is good progress but she was having a fit.  Once the nurses got her settled down for the day she slept the entire day away with the exception of a few times where her O2 sats dropped pretty substantially. 

The reson for the drops?  Just the medical team going about their daily routine of either changing her positions, suctioning her or just maintaining her lines.  She was so fed up with medical intervention after the tube removal this morning that she just didn't want to be bothered.  Apparently while we were out to brunch, she took an opportunity to get so mad that she turned herself blue.  I'm sort of glad that I missed that particular episode.  Her cardiologist isn't really concerned about the de-sats at this point, but it has changed the plan for the vent removal for tomorrow.  That's definitely on hold until Tuesday at the earliest.  This is just another indication that we move at Olivia's pace and that can vary greatly from one day to the next.  I for one am starting to get a little impatient, not that I want to rush her progress by any means, but it is frustrating for me to sit by and watch her on this cycle.

Olivia clearly wants to stop being messed with by the doctors and nurses on an hourly basis, but we can't get there unless she makes some benchmarks which require the intervention of the medical staff.  Each time she gets upset, she's putting herself a little further back in the timeline.  It's not like I can sit there and explain it all rationally to her, it's just something that we have to play the "wait and see" game.  My hopes for tonight are that she sleeps soundly and continues to get the rest that she needs to get ready for removal from the vent, bigger feedings and maybe some more medication removals! 

1st Hand Experience

Typically my day starts off around 7am with the changing of the nurse staff, the new day nurse always does her assessments and it normally wakes me up.  They check my vitals, normally do a routine suction (which I hate), and then make sure all my drips and medications are as they should be.  Now that they've been turning down my pain and sedation medications, I've been much more awake.  Mommy and/or Daddy come and visit me to get their days started off right, but sometimes I'm still so mad from the nurses messing with me, that they find me crying.  Today, I was in a fairly good mood so I just hung out and looked around my room while both of them hung out talking to me. 

Dr. VanBergen (my cardiologist) has been pretty pleased with my progress within the last few days so he has been lowering all my ventilator and medication settings to get me prepared to start breathing on my own.  Just yesterday they started feeding me some real food, but sadly they're going to withold them the day that they take me off the ventilator just as a safety precaution.  Worse yet, I won't be able to eat for another 24 hours after that!  Mommy is a little nervous that I'll be really cranky once I have an empty tummy. 

I had all sorts of visitors today too: Grandma & Grandpa Donnelly, Uncle Craig & Aunt Katie, and Tia Licha and Uncle Clarence all came by to see me.  I tried to be good and have my eyes open for everyone, but it gets tiring trying to see all my guests so some of them just saw me napping away the day.  Later on tonight Mommy and Daddy were back and I was cranky.  The nurse took away my blanket because she said I was a little warm and I flipped out.  Finally, she gave in and let me have a dose of Tylenol so that I could calm down and have my blanket back.  Eventually I drifted off to sleep and then Mommy and Daddy left me for the night. 

Right now Mommy, Daddy and the Doctors all say that I'm doing exactly what I should be doing to go home soon.  I can't wait to get home so I can get some real peace and quiet!

Fabulous Friday

It seemed as if my first Friday back in the office would never end. Sure the routine was much the same, arrive at 6:30am get some coffee in me, wait for the bagels to arrive, do some work, read Olivia's email and look at my daily picture, reply to Olivia's email, go to lunch, some more work, and then go home. Except today, going home meant going to where my family was. I left work a little early and besides the usual Chicago traffic on 88 and 294 I made some pretty good time today, which is good because Lisa sounded so excited when I spoke with her that I needed to get out to them ASAP. Some reasons why she was excited:

1. No more epinepherine! Yay, one medicine completely gone.
2. They started to feed Olivia today. Slowly but surely.
3. The lasix dosage has been upped a little bit to help drain the remainder of the fluids.
4. There is talk of them pulling the remaining chest tube tomorrow.
5. They are lowering her vent settings and rumor has it that Olivia will be off the ventilator by Monday which means Lisa and I will get to hold her for the first time in all of her glory.

Like I said, this is all great news, the only downside is now that I am here at the hospital, I will not be receiving my morning email's from Olivia, apparently those are reserved for when I am at work. I never knew that my 2 week old daughter was so talented (and sarcastic) let alone having the capability of typing on a keyboard. But those emails always make my day. As far as everwything else, we shall see how it goes. Lisa and I have learned to be cautiously optimistic about everything the doctors tell us...especially the timetable of things but it is so hard not to get excited about holding the little munchkin. I mean look at her.... isn't she just so cute?! I think when Lisa finally gets to hold her the doctors are going to give her a sedative in order to make sure her and 2 of the nurses don't run out the door and kidnap her. Its amazing how well you get to know some of the nurses in the PSHU and they are all great. They go out of there way to explain everything to Lisa and I while we are there and always make us feel so comfortable. Although my favorite part of any visit is still when she opens her eyes. Not the opening the eyes to fuss part, but the "I'm curious to see whats out here in the world part". It just cracks me up how she peers through her right eye to see if anything is interesting and if so, the left one will follow suit. But if nothing fun is going on she will open her right eye real big to double check and then slam it shut as if to not be disturbed. Its hilarious the things she does. At this point in time the running tally on the floor is that her eyes are green, although I am not fully convinced

Either way, it is exciting to be back at the Ronald McDonald House with Lisa and be only a 5 minute walk away from Olivia. Knowing that should help me sleep sound as a pound. Don't forget to save your pop top's and turn them into your local RMH. Its amazing what those little pieces of aluminum can do... and build.

Good night - Brian, Lisa & Olivia

(if you guys are lucky maybe I will convince Olivia to post an entry this weekend... no promises though, she gets stage freight sometimes)

Two Weeks Have Come and Gone

Well two weeks ago tonight we checked in for my planned induction.  Since then it's been nothing short of eventful.  Olivia made her appearance at long last, a little worse for wear - but here nevertheless.  She's had her Norwood and did really well, and then this week she had her chest closed and it didn't go as stellar.  But most importantly, she's rallying once more in a forward motion. 

I cannot believe that I have not been home in two weeks, the time is really flying by yet the prospect of being here for more weeks on end has me a bit down.  Every day I ask how she's doing and what sort of changes we're going to make for the day and usually about 75% of the goals are met on a daily basis.  Today ended without her getting real food, which was disappointing but it's on the agenda for tomorrow as well as pulling another chest tube that hasn't been needed for drainage in a few days.  My impatience for progress is starting to get the best of me, but above all else, I just want her to continue to remain stable and if we need to move at a slower pace then I'm just going to have to cool my jets. 

I'm hoping that getting to hold her and actually interact on a more daily basis will be enough to quench me for a while.  To be coming up on her two week birthday and say that I've only held her for a total of 40 minutes in her entire life seems pretty cruel to me.  She needs to be held and I want to hold her.  This could be the beginning of an issue in the future where I have a problem putting her down.  Oh well, if that's the worst thing I do to her as her mother; I'm sure we'll be just fine. 

Ahh Boring - I love it!a

Well today was much more boring than yesterday and I loved it!  Olivia's blood work has been much more stable since last night and they've reduced testing her to every few hours instead of every hour like they were yesterday.  We're playing the wait and pee game again too.  Lasix were started in the middle of the night and by the time I got there, she had already started ramping up the urine output.  So much so, that between my afternoon visit and one right before dinner, she had already visibly shrunk a bit.  The best bit of news is that meds to get her tummy going before a real feeding have been started. 

Other than that, she's still on the paralytic and knocked out so she's not interacting with me or anyone else at all.  While this makes for a one sided visit, her body needs rest so I don't mind.  I have noticed that I need rest too.  My body is really drained around 3 and today was no different.  It felt super luxurious to lay down and sleep - I mean really sleep for 2 hours in the middle of the day.  Hopefully I'll get myself on a schedule soon enough and some sleep will be included in that planning.  Brian made it through another day of work and class without any interuptions from us over here; so hopefully things will level out for him too. 

Here's to hoping for more boring days to come :)

I might have spoken too soon

Well I will start off with the fact that Olivia's chest was closed late last night around 10:30 PM.  Whether we will call it a complete success is another story.  I typically call the PSHU at least once a night to check on the little one and last night was no different.  When I spoke with Olivia's nurse she started off with "I was just about to call you".  Uh oh...no parent wants to hear that from their child's nurse in the middle of the night.  Apparently, Olivia's levels were starting to widely fluctuate from her previous stable numbers as a side effect from the stress of the chest closure.  

What does that mean?  Well originally I was content to lay back down knowing that it was non-emergent and wait for an update later in the morning, but I couldn't really sleep.  I was only a few minutes away from her, so I figured I would rather get up and check on her myself.  Good thing, because shortly after I got to her room, things continued to decline.  All of her blood work was coming back with large indications that her body was just not tolerating the changes brought on by the closure.  The attending Cardio Fellow was very honest with me and said that she thought that this would mean ECMO for Olivia to recover before making anymore forward progress.  ECMO is a dirty word in the Peds world; it's essentially an external bypass machine that will alleviate strain on your child's heart and lungs - yes it's a good thing to have but you don't want to be in the position that you need such a machine to begin with.  

At that point I had to call Brian.  No one wants to make a call in the middle of the night to family members to give them somewhat bad news.  To his credit he was at the hospital within an hour looking alert but of course concerned by the 10 staff members that were huddled around our baby trying to figure out what in the world was going on.  I love the fact that the doctors were so confident in Olivia's ability to fight that they made the nurses change out every single piece of machinery to make sure it was nothing mechanical causing the issue.  Unfortunately, it was nothing mechanical, her body was just too dehydrated to handle the additional vessel leakage that was going on post closure.  The solution?  Well they had to literally pump her full of fluids for hours on end and adjust her meds on an hourly basis until she stabilized around 7:30 this morning.  

Things are relatively quiet this evening, her vent settings continue to be lowered as do the level of meds.  While we're still not where we were yesterday pre-closure, they are happy with her progress.  I for one am happy that they are happy.  Brian will be staying here tonight to make sure there's no more surprises in the meantime and hopefully we'll get a few good hours of sleep.  Here's to hoping for a boring tomorrow!

Another Milestone

At this very minute while I'm typing this entry, they are literally closing Olivia's chest next door in her room.  Sure we had originally planned on all this happening around 1PM today, but there are other kids in worse situations than Liv that needed the doctors attention first.  Who am I to complain about the additional waiting time on something that's a non-emergency?  Besides, it's an accomplishment that we are already getting her chest closed because it means that her body has purged enough of the retained fluid for the doctors to feel comfortable about the procedure.  Tonight will bring a drugged up baby that will be out of it until tomorrow, but tomorrow brings the start of giving Olivia some real food.  They're going to start her out on 3 ml/hr of breast milk to see how she tolerates the nutrition in her tummy and then we're really going to be moving along.

Once she shows that she can tolerate a continuous drip they're going to stop them to dehydrate her a little bit (particularly in the lungs) in preparation of taking her off the ventilator.  She's already doing well there too since she routinely breathes over the ventilator settings and her vent settings are on room air without any additional oxygen.  Removal of the vent means that Brian and I will be able to hold her.  So I'm hoping, really hoping that they can pull it out this weekend and I can get my hot little hands on her.  When she cries her silent cries it's heartbreaking and just about the only thing that makes it better is rubbing her head to soothe her.  Hopefully she will find it just as soothing to be picked up because at this moment I can't imagine not over-indulging her once she's free of some wires and tubes.

All in all, nothing but good news on this front.  She has her moments where she throws tantrums and has had a few blips with the oxygen saturation dipping down, but most of that is due to her tantrums.  We have been very fortunate up to this point and continue to hope that things move forward so we can get our girl home.  I'll let you all know how she does tomorrow with some real food - I pray that my family's love of food rubs off on her!

Oh to be together

So tonight marks the first night that none of us in our little family are together.  Liv is in the PSHU still recovering, I'm at the Ronald McDonald House (albeit its across the street from the hospital), and Brian is at home getting ready to head back to work tomorrow.  I about wanted to have a full meltdown at the fact that Brian had to leave tonight to get back into the office routine.  My first visit to Livvy's bedside after Brian left was pretty much full of tears - she didn't notice because she was sawing some zzzz's. 

I know that Olivia's in the best place possible for her right now and my job as her mother is to make sure that she's getting the best care and that we're keeping up to date with all the information.  It still doesn't make it any easier, I'm homesick and my best bud is gone.  Thank God for technology, Brian and I were able to Skype tonight so that was kind of cool to chat with the video link while we were both sad for the other.  Going forward, I will hope for Olivia's speedy recovery so her and I can get home soon and be with Brian as a family.  He and I are really really looking forward to those long nights where our baby wakes us up crying and leaves us sleep deprived in the mornings.  That's probably not something that many parents are looking forward to, but then again not many parents are in our situation and that's okay.  Brian and I know that everything as of late is a gift and we're not willing to take it for granted. 

Who is that baby?

This morning Brian and I went into Olivia's room for our first visit of the day and I have to say I was taken aback.  I didn't recognize that little baby in her crib where I had previously left my little chunky monkey last night.  The lasix are doing such a good job, that she's basically been restored to her birth weight.  Given that I didn't see her until almost 24 hours after she was born when she was already on the ventilator, she was already starting to retain fluids, so in my mind, that's was her normal.  This new look on my little girl allows all of her facial features to shine through from her pretty long eyelashes, down to the ball on her little chin.  Even her feet look like wrinkled little prunes now that the excess fluid has left her.  All of this is great news as they're going to close her chest on Monday.  Once that's done, they're going to slowly start her on some breastmilk while simultaneously continuously reducing the settings on the ventilator.  If all goes well she can potentially be off the vent by the end of the week. 

On a second note, it was Olivia's one week birthday today.  She has already undergone more medical procedures in this short week than most of us will undergo in a lifetime, yet she weathers through them like a champ.  Since her swelling has gone down, she has been able to open her eyes which has been awesome.  This morning she was awake for almost two hours while Brian and I were visiting.  Most of the time spent with her eyes open is great, while it gets a little dicey when you know she's upset and silently crying.  She also has a habit of sucking on the tubing down her throat mimicking a bottle, which would ordinarily be a good thing except that she then gets hiccups.  If you can imagine how annoying it is when you get hiccups, picture having them while on a ventilator and with an open chest wound.  It looks painful and she is very unhappy when that happens which makes Brian and I feel completely helpless.  Luckily, the nurses are very attentive and can pull the extra air out of her tummy that causes the hiccups and the situation can be put to rest relatively quickly. 

All in all this first week couldn't have gone much better and we hope that Olivia continues to move at her own pace so that we can all go home and enjoy one another. 

What a difference a week makes

So at this very time last week, Bri and I were just settling into the hospital room for the night starting my induction.  We were so excited and had so much energy that it was hard to even try to find the right spot to get some good rest.  Since that last week, I've gone through 40 hours of labor in a failed induction, had a c-section, met our daughter, saw her off to surgery for her Norwood, been discharged from the hospital and moved into the Ronald McDonald house; all the while seeing many family members and making trips to visit Livvy either in the NICU or PSHU.  Whew! 

Tonight I am in a completely different mindframe than I was last Thursday.  Last week was filled with fear and uncertainty about what the future would hold for Olivia and tonight I am filled with so much love, hope and excitement for what lies ahead.  Olivia has the toughest of the three surgeries behind her and she is stable!  The doctors and nurses continue to tell us on a daily basis that she's doing great, but I do not let that put me completely at ease because life can change in a blink of an eye so I will not take it for granted. 

That love part that I mentioned?  I'm gooey with it.  Love for my new beautiful baby girl who I want to breathe in every time I see her, love for my amazing husband who really hasn't left my side in a week and has done so much to make me as comfortable as possible while I've been recovering and is overall my best friend in the whole wide world, and love for our families who have been great to us throughout - and I have to single out my parents because they were the other people that I kept asking for in the recovery room after my c-section.  I felt like I couldn't be totally put at ease until I got to see them and hear them tell me that everything would be all right.  It was like I was a little kid again and they had just kissed a boo-boo after a fall and the world was right again. 

My recovery has been slower than I would like, mornings are hard to get up and get around.  I feel like I'm walking around like a little old biddy, but trying to be patient so that I don't cause myself more harm and further delay the process.  Needless to say I'm like a horse with a carrot.  Olivia is my carrot and the desire to want to see her each morning just gets me going and we try to get to her as soon as we can to start our day.  Brian is no better, in fact I have to laugh because sometimes I think he'd cut me lose just to get to his little girl faster.  His heart practically bursts out of his chest when he talks about her, thinks about it, or sees her; Olivia and I couldn't be any luckier to have him in our lives.  A week ago was truly the beginning of our own little family. 

Post-op Day 2

Hi everyone, sorry for the lack of a "quick update later tonight...." Brian & I have been busy trying to catch up on some much needed sleep, trying to get settled into the Ronald McDonald House, and making time to get in to see our baby as well as visiting with the new Grandparents.

First and foremost the information that you have all been waiting for, Olivia continues to do really well after her surgery.  The doctor's and nursing staff have all attributed this to her size and otherwise good health.  As of today she still looks like a little Michelin Man (we call her m&m for short) but they are starting to give her lasix in hopes of drawing the excess fluid out of her body.  So it's a "wait and pee" game.  This important step needs to happen before they can begin to think about closing up her chest, which will substantially lower her odds of any infection.

It has been nice for Brian & I to see her on at least a little less sedation because she responds to voices and is moving her arms and legs.  I am fond of her left hand while her father spends most of his time down by her right foot playing with her little piggie toes.  We were able to put a bow in her hair and some cute socks on her little feet which brings us comfort given all of her other tubes, lines and medical equipment surrounding her.

Overall at this point we couldn't ask for her to be in a better spot in her recovery.  She continues to be very stable and makes small positive gains throughout the day.  At this point we would expect that she is on the road to coming home within 3-4 weeks but as always we are cautiously optimistic.  It is nice that Brian & I have feelings of excitement to go visit her rather than fear and worry as to what we may find when we get there.  Thank you all for your continued support and concern.

Love,
Lisa, Brian, and Olivia (m&m)