Wednesday, November 30, 2011

We hit the 8 pound mark!

So,  everyday we weigh and hope she has gained something. Even the smallest amount is great. Well today they weighed her and she is 8 pounds 1. 6 ounces. Yeah!!!  The chunkier she gets the better off she is


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Visiting with pops

Olivia got to meet her Pops for the first time this morning and as you can see, she was quite content. Waiting for doctors to round this morning and decide a plan of action.


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Tuesday, November 29, 2011

my sweet angels are on their way home

So today after spending some much needed time together, my family flew home. It is always so difficult to watch them go. What made it worse was when I got back to the hospital, the doctor mentioned staying up here until her next surgery. The financial burden hit me and all I could think about was missing yet another holiday. Flying them all here adds up after a while. I just wish this whole nightmare would end soon. My family and I need to return to our lives where holidays are a reason to celebrate and not cringe.


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Lovenox

This morning hematology came by to see us and ask about clotting problems in our history. They think she developed a clot around where she had her ra, central, lines from surgery. They don't know why the clot is getting bigger and not shrinking. They are going to suggest to cardiology that she by started on lovenox while they do the blood work up on her. She will need lots of blood follow up to make sure all of her levels are perfect. She will be watched even closer now and if she has to have any kind of line in the future. We will see.


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Monday, November 28, 2011

back in the hospital

We thought everything was on schedule but yesterday she slept most of the day and a few times she was eating less than normal. Then today she looked more blue, with raccoon eyes according to Melanie.  Her oxygen sat's were also in the low 70s upper 60s.  First they thought she might be getting sick but now they think she is losing the  iron in her blood from the transfusions after surgery.  She is getting anemic and supposedly a transfusion will get her back on track.  They still haven't reviewed the echo but said preliminarily things look good with her heart.  We will see what happens.  Hopefully anemia is all it is and she gets to go home again.


I was really looking forward to our first saints game together  cuddling on the couch at the Ronald McDonald  house before I head back to New Orleans tomorrow.  Instead Melanie is going to take the kids to the movies and spend a little bit of time with them before they leave and I'm going to stay with my little girl in the hospital for my last night here.  It is painful that this will be our last moment together before she comes home in the middle of December.  Olivia and I will make the best of our last day feeding, changing and loving on her before I leave at 2pm tomorrow.  I wish I could stay and cancel the flight but the kids really need one of us back at home with them. 


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Saturday, November 26, 2011

Lazy Saturday

Our Saturday has been very laid back.  While man's,  daddy, Nathan, and delilah went to lunch with Brett uncles,  we have slept.  Olivia doesn't know what to do with all of the peace and quiet.


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Friday, November 25, 2011

first pediatricians visit

She looked great today. Still watching weight gain. She was enjoying some tummy time in the office but wasn't quite a fan.


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Thursday, November 24, 2011

thanksgiving activity

We each got to make a gingerbread house while we wait for lunch. 


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turkey lurkey

Happy turkey day from our little turkey


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Happy Thanksgiving

We would like to wish everyone a very happy thanksgiving.  We have a great deal to be thankful for this year.  Not only our beautiful daughter but all of our wonderful friends and family who have supported us through it all.  We miss everyone greatly and will really miss the veggies and doberge a great thanksgiving tradition. 


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Tuesday, November 22, 2011

going home

Well we were finally discharged.  Now we are headed to the rmh. Olivia in her first car seat ride.


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Monday, November 21, 2011

sleepy girl in recovery

They did her cath and all went remarkably smooth. The doctor met with us and informed us that all they had to do was go through her vein.  This is great news because it cuts down her chance of major clotting.  We have not heard about the mri yet. I don't want to know those results because to me it doesn't matter.  In the cath,  they saw one area of narrowing in her aortic arch but it does not effect flow so they will just watch it.  There is also an expected area of narrowing where they stitched the shunt into her pulmonary artery.  The shunt itself looks great and they won't need to do another on until after her stage 2 and before stage 3. We are now sitting and waiting for them to bring her back to ccu.


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everything appears to be fine

The cath doctor told us that everything  appears to be fine.  There are no complications with the surgery, the shunt looks great and there is  no narrowing of any arteries.  Melanie will give you a more medical update later.   Right now she is extubated and in recovery.  Luckily she is sleeping pretty good so she is finally getting her hearing test, another checkbox leading to her discharge. 


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Just dropped her off with anesthesia

Melanie and I carried Olivia to the anesthesia area so she could have her MRI and then catheterization.  The MRI is a part of a research study and the cath  is to ensure everything is fine with the sanno shunt and the aortic arch is still large enough.  They also ensure nothing is clotting.  It's like a checkup, we are very worried.  You can have clots form from this procedure that could go to her brain or just ruin the femoral artery for future cath procedures.  We are waiting to speak to the cath doctor.  In the meantime enjoy the picture of sweet Olivia we took this morning.


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Sunday, November 20, 2011

A busy Monday planned

Tomorrow is looking like it is going to be a busy day. At 6am, Olivia will have pre-cath lab work drawn to check her electrolytes, blood count, clotting factors and parathyroid hormone. She will then go to her post-op mri at 9:30am where anes will intubate her again and give her anes to prepare her for her cath and to keep her still so they can get the images they need to from the mri. Then at 10:30am, she will be off to her cath to take some images and pressures they will need to know about prior to her next surgery. Depending on how she handles the anes will depend on if she recovers in the cicu or the cpru. They like to extubate shortly after but it will depend on how quickly she wakes up. The whole time we have been preparing for this cath and we know in reality it is a very minor procedure in comparison to her surgery, but I can't help but feel the same panicked feeling I did the morning of her surgery. The thought of intubation, anes, extubation and recovery all over again makes me cringe. I sure hope all goes well.

Olivia, Brett and I would all like to wish Tyler a wonderful 1st birthday party today. We unfortunately are missing out on all the fun, but we know it will be a huge success. It is hard to believe that just 1 year ago yesterday, I was staying up all night anxiously awaiting his arrival. As his aunt and godmother, I feel like I am missing a huge milestone. I do look forward to attending every other party though and I can't wait to see all the pictures.

Friday, November 18, 2011

fortification

So today the nutrition consultant came to talk to us about adding calories to her breast milk so she will gain and not lose weight.  This is frustrating for me because I thought the whole point of pumping was to prevent all of that.  For those who know me well...  I should have stuck to my plan from the beginning.  Formula would have been a lot easier at this point.


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Thursday, November 17, 2011

daddy and me

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hanging out in the ccu.... waiting

We are in the ccu,  not a private room but it is a pod.  A very large pod just one door down from our cicu pod.  I think it's just going to be a waiting game for the cath.  If it's scheduled For Friday then we might get discharged Tuesday.  If it's Monday then discharge might not be until Thursday or Friday.  If the cath results are not good then we'll still get discharged but we probably will keep her up here until her next surgery.  So let's all hope for good cath results.


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Holding pattern

So this morning we found out that her heart cath and MRI are on hold until they can fit her in next week. They moved us to the ccu, cardiac care stepdown unit, and we are just waiting. It does give us time to just sit, stare, and take more pictures of her. I have also introduced her to the missed episodes of x-factor that I am catching up on while we feed every three hours.

Wednesday, November 16, 2011

No more tubes!!!!

 No more tubes!!! We finally made it this far.

Olivia update: So today they were able to completely wean her off of the nitric and O2. They removed her nasal cannula and she is holding her own with her sats. When it came to feeding, we were a little concerned because she would get so mad in the middle of her bottle and would spit out a ton of milk as she ate. Today, they switched her to a Dr. Brown's bottle with a preemie nipple and she ate like a champ. Keep the fingers crossed... we may sneak out with no reflux. The plan for the next couple of days is to schedule her for her heart catheter, which all babies get prior to discharge and a follow up MRI to finish off a research study we are participating in. Then it is on to ccu or the step-down area to make sure we can care for her and feed her so she will grow. They started talking discharge today with what classes we need to take and who will be her doctors at home. The nerves have kicked in but I know we have done well with Nathan and Delilah, so we will just have to be a little extra cautious with Olivia.

Melanie update: So I finally am starting to get back to some semblance of feeling normal again. My feet have finally stopped swelling and my belly although still black and blue doesn't hurt as much as it did a week ago. I am still weepy here and there, and I am very tired of always seeing poor sick kids everywhere. It really is a bummer to always see their little eyes with so much pain already experienced. The most frustrating thing for me so far is the lack of sleep. I know when she is discharged this will just get worse which is why I think it aggravates me that Brett can sleep all night while I have to wake up every 4 to 5 hours to be tortured with pumping. For those of you who have experienced the torture of pumping around the clock, I know you feel my pain. Also a disclaimer... I completely and 100% know Olivia is much better off receiving breastmilk, but couldn't it be the man's job to provide it? As a woman, you carry the child, give birth, console, warm, worry, and on top of that... produce breastmilk.... really? Shouldn't he have to participate at least some? Anyway... enough rambling.
It is very hard to leave her every night because we want to hold and love on her as much as possible. She loves being cuddled or sitting in her swing. It is also hard during the day when a new baby arrives or another one comes back from surgery, because we get kicked out of the room. We patiently sit and wait and hurry back to her side as soon as we can. It seems though that in the past two days, every time we leave they decide to round on her or make huge changes. It is maddening. The other times major things happen is when I am away pumping... another thing that makes pumping even worse. This leaves us with major questions unanswered that we have to wait until the nurse has time to get to. It isn't like Brett and I are going anywhere either. We have spent everyday, all day there since her surgery. The people, we can trust to find us, are the researchers.... they are like vultures. They come from everywhere. There are several studies going on right now to improve care for hlhs and chd kids and we are happy to help. Well, word has gotten out so we are approached all the time in all hallways asking for us to do this or do that. It gets kinda tiring, but according to Brett if it prevents someone else from experiencing this awful journey, we are pleased to help.

Nathan and Delilah update:
The kids are back at school this week after spending a week here with us. There are times they both get sad and want to talk which is fine with us. We have made arrangements for them to come up for the Thanksgiving holidays so we can all spend some quality time with little Olivia. The holidays this year have been nothing like they normally would be, so instead of a big turkey dinner, we may go see a kids movie to take our minds off of what we are missing.

We truly miss all of our friends, relatives and co-workers. We have a lot to be grateful for this Thanksgiving.
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Chillin in a swing

Chilling in my swing.  They took off the nitric, have her on pain meds by mouth and zantac. She loves being held. Will wean her o2 today.  Possibly starting to.have.reflux issues the jury is still out on that waiting  for rounds


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Tuesday, November 15, 2011

Boring video

With everything going good our latest problem is her heart rate being too low but her sats being normal .  We will report back later on it.  They think it maybe a parathyroid issue slowing her heart


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Doing amazing in her own clothes

Our littlest princess did great overnight and got her pacer, pacemaker, wires out.  They also removed her central ra lines that went straight to her heart amd they also removed her arterial line.  She finally has both of her hands free  we both got to hold her, and melanie even got to feed her.  She is eating like a champ amd mommy got to dress her up all cute.  This is a great day.  Lets hope it continues


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Monday, November 14, 2011

Great extubation!

.  Her extubation went well.  Once they took her off the vent her sats and everything looked better.  Her blood gases came back at 44 which was thr highest so far.  After it came out she looked so at peace.  A few minutes after she was opening her eyes and enjoying out baby talk with her.  She is waking up a few times now, not to cry but to lool around and have us oogle over her.  A little later she'll get a bottle and hopefully she will keep progressing.


In the first 12 hours you would see heart failure issues and she'd need to go get a cath. After 24 hours you'd see problems with the lungs.  So we have to make it past these first 30 hours. 


Soon other stuff will start coming out like her arterial line.  Olivia is waiting with baited breath for that to come out so she can have both of her little hands free to hold close to her face.  Well update you later but in the meantime this is her best picture yet!!!!!!


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This is Olivias bed, with a cool Olivia sign one of the nurses made for her. She is on a vent with a suction tube and a ng tube for feeding her 1ml of breastmilk an hour. She has 1 central line going right into.her chest. Leads for an external.pace maker are also coming out of her chest. She has a few ekg leads and the heart is her temperature sensor. She has an arterial line on her left hand and a regular iv on her foot. With a pulse ox on her right hand. Finally a blood pressure cuff on her right leg.



Sher bas 10 pumps pumping the central, arterial, and peripherial iv lines. Starting at the top right are 3 continuous flushes to keep her central line open plus they all have a little heparin in them to also keep them open. Next is the milrinone which helps with the hearts contractility, which helps the heart squeeze better. Next is fentanyl which is for pain. Then 2 manual flushes, then a double pump with lipids, fats, and tpn, like gatorade.

To the left is 3 ps and several bags of stuff. At the top pump was blood infusion to prepare her to be extubated then they switched it woith lasix to take off the extta fluid like a diuretic. Then a steroid to.help keep her airway from getting too swollen. Finally my favorite med, midazolam, it's a versed which calms her down and it really works great. It sounded like bedazzler to me its a funny name but awesome med.

Above the pumps is her monitor. The top green is her heart rate. The red is her real time blood pressure, the white is her ra line which measures the pressures in her heart. Next is yellow which measures her respirations. Then is another white for blood pressure from the cuff. Finally is the last is blue for her spo2 oxygen saturations. We want it above 75 and right now it is in the 80s.


This is all of her oxygen equipment. On the right is the ventilator. We watch the light grey waves to see her breathing over the vent. Then the Ppeak number to see how high the peaks of her breaths are. The first time they extubated her breaths were weak 10 to 14. This time they were 18 to 20. Everything else on the vent is a mystery to me. They lower the numbers on the bottom. I like the peep.

To the left of that is her nitrous machine. It helps increase blood flow in the lungs. She used to be on 40parts per million, now it's 10 next it'll be 5. Supposedlt its tough to ween the last 5 of nitrous. We shall see.



Thats the full tour. Slowly things will get taken away. I cant take a picture of it but there are 3 other beds in pod 3. Its a cozy pod and hopefully we won't move for awhile except to the step down ccu unit.

Extubation at 2pm

Everything continues to go well for her oxygenation sats and her blood gases.  The doctor was going to wait until tuesday but she said Olivia gets a gold star for this weekend.  She then moved up the extubation to today.  Cross your fingers this goes well.  I'll update after 2pm


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Pictures from yesterday

Later today I'm going to take you guys on a tour of Olivia's hospital room, Pod 3 Bed 1. In the meantime our beautiful girl opened her eyes yesterday, finally, and we got to look back into her eyes and show her mommy and daddy smiles and funny faces. This weekend has been a good healing weekend for her. Everything is looking better.



Sunday, November 13, 2011

The apple doesn't fall far from the tree

So during this journey, I have learned many things. The first and foremeost is that the apple doesn't fall far from the tree. When you find out your pregnant the first thing everyone wonders is... "what will the baby look like?" That has never really been an issue for Brett and I. One look at the ultrasounds and we knew all three of our angels would look exactly alike. We were spot on too. It is easy to look at a baby and say, "aww she has my nose or his eyes", yet it takes a while to figure out their personalities. For Olivia, this weekend, we have seen her personality loud and clear. She does NOT like to be fooled with. She enjoys her mellow times with very few interruptions. Although, when you do get her angry she has quite a temper. I wonder who she got that from????

The next thing I learned is that without my loving husband who knows me way too well, I would be a complete mess. Like I had mentioned in an earlier post, I thought I was mentally and emotionally prepared for all of this. I am in the medical field for god's sake and I see babies way worse than she is. Yet, when it is your flesh laying their being tortured for an iv stick or aggravated by being suctioned, you can't help but feel helpless. That feeling is something I would never wish even on my worse enemy.

Another lesson I have learned is that in the grand scheme of things it is what you do everyday to make a difference and the memories you from them. Today, while at Walmart grocery shopping, I was returning to the car when a couple was screaming and cursing at a man crossing the street. Apparently, he was in their way and was not moving fast enough. Mind you, he was also about 80 and had a walker. It made me realize that life is too short to worry about the small things. Eventually, you will get where you are going. Life may not always go exactly how you planned it, yet the laughs and great times you encounter along the way are what matters. This weekend Nathan and Delilah both danced at the fair. This is something I have always cherished  watching. No rhythm and all of the kids running into each other is priceless. This year we missed it. We were very lucky that many of our family members were able to go to film though. So sitting in the waiting room, Brett and I watched them sing and dance and lose a hat and were able to applaud their great efforts. While I may have not been there in person, I was still able to experience a great moment for each of them and that is what it is all about.

Lastly, I have learned that when things do get really tough I really am a lot stronger than I ever really give myself credit for. No one asks for their child to be sick. No one asks to be in a strange city dependent on the kindness of others. But for some reason, I have been given these challenges. I must embrace them and with the help of prayer, a great family and a fabulous set of friends... I must move on. We have made the best decisions for Olivia and she is in the best, most capable hands possible. It is all up to her now.

For all of those who would like to know how her weekend went.... it was relatively uneventful. YEA!!!! She looks much better today. She is less swollen, yellow and spent even a couple of hours with her eyes open. She wore her Saints hat today and brought the team some much needed luck. They were able to wean her off of the ventilator some and were able to take some of the nitric oxide off too. Her chest x-ray looks so much better and her gases are holding steady. They will discuss with the surgeon tomorrow if he still wants to bring her to the cath lab early, but we will see. They may even try to remove the breathing tube again on Tuesday depending on how well she does tomorrow. Onward, we march.

Saturday, November 12, 2011

update

Got here and she had very little changes over night.  She is resting well with the breathing tube still in.  Doctors haven't rounded yet.  Did have to restart a new iv in her foot.  May talk about an ng tube depending on how long she will stay intubated.  She looks less swollen today which is a plus


No more calcium iv she is riding the low end of the normal rate


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Sorry! Move back 4 spaces

You read all of these blogs about other amazing HLHS kids, you read their stories and get involved in their progress and secretly you say my HLHS'er will do better than that. My HLHS'er will beat all the odds and not go through all of those forward and backward steps. We probably haven't gotten to the lowest point yet, but my optimism and high hopes for being the miracle baby are a little disheveled at the moment.

Seeing her paralyzed again, and re-intubated (even though we were warned) is heart breaking. I know she needed it, she can't spend her recovery with her sats in the 70's. I made the mistake of looking at this picture yesterday to the right.

After several days sleeping in the hospital getting little to no sleep Melanie and I crashed. Yesterday we had to get out of the hospital and we spent the night at the ronald mcdonald house. We called a few times and she has been comfortable all night. I am already missing this sweet little smile. She didn't open her eyes yesterday at all.

I'll get the good news out of the way first, we booked flights for the kids to come up Nov 23 to Nov 29 for Thanksgiving. I'm imagining brighter Olivia days by then, maybe even being discharged. Even when I'm down I never lose my optimistim, but it was tough.

Firstly, she is burning through Calcium like it is nothing. Her blood gases (they take every hour to make sure she is getting enough oxygen and other nutrients) show a low Calcium all the time. As a result, they tested her parathyroid and it came back very elevated. She has some hypocalcimia problem. They are seeing if it is genetic but the amnio melanie had said it was negative. This test will take a few weeks. This is the completely out in left field problem Olivia is having, not typical to HLHS'ers at all.

Dr. Spray told us she is going to get over all of this, she just has to get past the lung disease. He feels the Sano shunt is fine and there is no clotting over it. Olivia continues to have haziness in her chest x-rays but her lungs haven't collapsed yet.

She is on some serious antibiotics and will hopefully get rid of any infection she is seeing right now. Last night they began the process of weaning her ventilator settings so she can be extubated again today at some point.

Now we are rushing to get out of here so we can make rounds and hear what the plan is today. Yesterday Olivia didn't reach the goals they had for her, hopefully today she will.

To all the HLHS moms posting their wonderful thoughts and prayers: I keep reading your comments and reminding Melanie and myself we'll have our little Zoe, Hope, Cameron, Bodie, or Xavier running around eventually. Thank you all for your posts you are not only reassuring us but our family mentions your kids to us and they are reassured by it. Thank you for your time and professional thoughts and opinions at this very tough time. You all must know I needed it somehow ha ha =)

All the medical stuff I type is basically reguritated from Melanie or the doctors. Stuff will be mispelled or incorrectly explained. When this is all over and our blog is back to boring cute pictures of a sweet little princess I'll finally have my license to explain medical things lol.

Even though it was short lived here is a picture of Olivia on the CPAP, with her dressing off of her incision. Yes she is turning a little yellow with her bilirubin's up to 12. We are expecting a billi light at her bedside when we get there. If so, we'll post a cute picture of her sunbathing. Just like Nathan and Delilah did with their cases of jaundice. Jaundice is a cakewalk.


Thanks for reading my dissertations. I'll update more today, i promise.

Friday, November 11, 2011

Continuous cpap and possible reintubation

Her sats are 68 even worse then last night. we are really concerned and hopefully they will round soon and make a decision. My concern is brain damage at this low of a saturation. Shes basically been below 72 for the past 8 hours almost  and shes at 66 right now.  They think she might have an infection so maybe that will fix it.  We'll see after they round and make a plan for today

Extubated and crossing fingers

Good morning everyone. I was up with Olivia from midnight until 5am calming her down, sitting back helpless, standing up helpless, pacing around helpless. The finally got all of her settings to a point where they could extubate. Finally around 1:30am the maverick attending (our nickname for her) whipped out the ng-tube and the vent and Olivia got to breathe on her own. She got a nasal cannula and was still on nitrous through that. She got pretty mad and had to get a little too much petibarb (pain med). This made for a long night of blood pressures being too low and her oxygenation saturations (o2 sats) dipping to the 67, 68, 69 range for several minutes. The normal range for these patients is above 75. Respiratory came over and did some CPAP treatment, which opens up the little oxygen receptor in the lungs, and put this huge breathing face mask on her. Her sats got better close to 74. They were going to do manual CPAP for a few minutes every hour as long as her sats stayed above 70. They were also going to do chest PT (they bang on her chest with a little pink circle to loosen up mucus) and suction her throat. She supposedly has fluid in her lungs which is why they are getting a lot when they suction.

I haven't gone to see her yet this morning so best case she is doing great from all the manual CPAP. probably she is on a continuous CPAP machine right now, worst case she is re-intubated.

The reason I did this post first was so I and all of you can see our sweet Olivia extubated and beautiful. I held on to that image for all 4 hours of sleep I had on this springy sleep room mattress

One last awesome thing, I heard her first raspy hoarse cry and it was so great to hear it. Plus crying acts like a CPAP. Everyone cross their fingers as I make that short trek to the CICU, Daddy needs a sweet little girl with no new machines!!!!

Thursday, November 10, 2011

Silent cries

I saw the worst thing so far today and I call it silent crying. When she is intubated and the pain medicine isnt cutting it she gets really agitated. Today she was getting so agitated her head was turning purple and her breathing stopped and her mouth is as wide as it can get. Just lile a healthy baby does when they are so mad holding there breath crying. In Olivias case she has a ventilator pushing so hard against her trying not to breathe it looks so horrible. Finally I got in there soothing talk rubbing her head singing quietly. I was able to calm her down for 30minutes and then it was finally time for a new pain med. It had me tearing up it is awful.
The reason we are going through this is because as amazing stacey lihn has said they like to rush extibation Dr. Spray wants all his norwood patients off the vent 1 day post op. He feels like it helps them get better quicker. Zoe, stacey lihn's daughter had to be reintubated and it is a likely option for olivia. If we are lucky the breathing she has been doing over the vent will pick up and she'll do awesome. This is why shes in pain, they have to wean her pain meds to the point she can breathe on her own.In 2 hours or so it might happen. I'm staying here in a sleep room tonight so we'll see and I'll update you guys.
Today and tomorrow are Olivia t-shirt days at nathan and delilah's school St. Clement. Over 200 kids probably will have their shirts on today. We cant thank everyone enough you help us make it through these tough days

Picture of the day



Look 'ma no chest tube

Tough night but chest tube drain out

I blame everything that happened last night on the fact that they moved her bed to a different pod in the middle of the night.  She was doing so amazing and once they moved her she got so upset and was under a lot of stress.  Everyone says it is just a coincidence but I think not. 

The update without my opinion:  The move went smoothly at 11pm.  At 11:15pm she started to exhibit greater and longer arrhythmia episodes.  They called it ectopic something EAT was the acronymn.  9 people swarmed the area and stayed for.a long time.  They were worried about her low stats, blood pressures were very low and arrythmia episodes continued until 2am.  They had to suction her breathing tube almost every 4 minutes to get her to come out of it.  The digoxin didnt immediately help so they gave her a.beta blocker called esmalol.  That helped and so I hit the sack on the springy 4inch thick sleep room mattress.

At 6:30am I woke up and found a crowd in awe.of Olivias beauty.  It turned out the esmalol brought her blood pressures too low so they took her off.  She was on 40% oxygen when I went to bed and this morning.she is on.70% oxygen and they started her on nictric oxide in addition to the oxygen.

Im sure what I saw had nothing to do with the changing out of the bed around.6am and all the stress involved with that.  The bed broke during the move.

Basically the nurse told her relief that everything that could have.happened.did.  She was pretty tired she went nonstop all night.  The attending physician joked with his relief by happily pretending to throw his on call phone at her.  It was a rough night for everyone and with her stable now everything is all good.  I am grateful for how on top of olivias care everyone is and while the next day will be tough everyone is working real hard for olivia.

On a positive note she had her chest tube drain pulled and her xray looked a lot better.

Today: they will try to get her blood pressures up and get the fluid out of her lungs and hopefully keep her lungs from collapsing.  Hence the use of nitrous.  Hopefully she reaches the goals her docs have for her today. 

Wednesday, November 9, 2011

Up and down

They say she is doing good but there was some recent activity  chest x ray an instant blood gas test.  They are trying to get the ventilator calibrated and get her at a good setting.  Nurses seems to think they moved oxygen settings too quick.  I have no idea but we'll see what happens.  An update is an update

We are waiting to see if we can get a aleep room on the cicu floor so we can be close tonight.  The kids flights all seemd to be on time and hopefully they'll settle in well tonight with there grandmother.

Out of surgery amd finally got to see her

Surgery is over and she is doing great, and her chest is closed

The concern over sano vs bt wasn't a concern. Dr. Spray is well versed in both shunts and can make a decision on the spot whether to do BT or Sano shunt to control flow of blood to the lungs. In her case the artery was too small and the Sano shunt was required. The best news is that the chest is closed which means there wasn't much bleeding. There is a chance for bleeding in the chest but the chances are smaller. They usually never open them back up, and if they do bleed they put in a smaller drain.

She is getting stitched up and will move on to recovery. We are still waiting for the nurse to come out and talk to us to get some more specifics I'll update when we know more.

Meanwhile there is a pump room that moms sign up for times at, and some lady just stole Melanie's pump time. Anyways this news is amazing only 3 hours in surgery as Dr. Spray said. He is great and we can't thank him enough.

The rest is in Olivia's hands to fight and recover and eat and get bigger for her next surgery. I'm about to bring grandpa george and the kids to the airport for their flight and will hopefully make it back to see Olivia when she gets out of recovery.

Chose the sanno shunt and surgery is as planned mostly

Instead of a bt.shunt they chose the sanno shunt to control the flow of blood to the lungs.  Mel is worried that the sano shunt means she'll come out with her chest still open.  We shall see, but the nurse said they are getting close to the end of the surgery and everything is going good. 

She is being warmed and placed back on bypass and they are done fileting her aorta

Intubated and hypothermed

She is now on bypass and they are starting to cool her to induce hypothermia at about 75degrees.  They will then take her off bypass so the surgery and turn on bypass again. Next update will be in 45 minutes or so

Cute video of Olivia

Watch "Olivia chillin like a villain" on YouTube

Heres another video to watch as you wait for the update

Surgery starting any minute

We met with Dr. Spray and he was calm and collected and ready to .roll.  The surgery and prep should be starting any minute.  The nurse said our first update will be at 10am

Olivia is heading to anethesia

We woke up at 4:30 this morning to get to CHOP bright and early to spend as much time as possible cuddling and kissing on our littlest princess. A few minutes ago Melanie and I had to give our last kisses and the surgeons anesthesiologist with her "hot pink lipstick" (melanie mentioned) took her off on a huge stretcher. She was so little on it and didn't cry. I bet she is crying her eyes out right now but she'll be under general anesthesia soon.

After that she will have an MRI research study done on her for an hour.
8am we will go meet with the surgeon Dr. Spray
And then shortly after he will start the surgery
Then we'll just wait and wait and wait. We will supposedly get updates every 45 minutes to an hour. If you want the latest update they will be here for everyone to read.

Apparantly several thousand people are praying and hoping for Olivia's safe surgery. We have been told our surgeon, Dr. Spray's, morbidity rate for this surgery is higher than 95%. This is why we came to CHOP. I am fully expecting Olivia to do great during the surgery. After the surgery is when the real fight will begin. The first week is very critical and everyone needs to pray and think positive thoughts towards a closed chest, little to no bloody drainage, breathing on her own, no too much pain, Oxygenation in the very high 70's, and sucking down her mommy's bottled milk by tomorrow with no problems and little reflux. All of these things will equal a quick recovery and Olivia getting home in early December.

Thank you everyone for everything as we have journeyed on this long path. With your strength we are able to stomach the in depth open heart surgery our little Olivia will go through. In just a an hour and a half Olivia's little walnut heart will be fileted, stitched, "frankensteined", and contorted into a miracle that will allow her to live.

Stay tuned

Tuesday, November 8, 2011

The emotional rollercoaster

So, this being my first post since Olivia has made her way into the world, I will try to keep it to the main points. My induction for Olivia went off without a hitch. Many of the things I dreaded and worried about being a L&D nurse, never came to light and she tolerated labor way better than I ever expected. I think to an extent, the doctor's were a little surprised too. Everything was fine until the morning I was supposed to be discharged. Unexpectedly, I was overcome with pain and urgently taken to the operating room to fix the problem and remove some adhesions. I know Brett went into way more details, so I will spare you from that again. I spent two more nights in the hospital while I slowly tolerated food. I was finally discharged and very excited to spend time with Nathan and Delilah and enjoy those lovely tempurpedic matresses which are not nice on a recovering belly.

Since,I have been discharged, my time has been spent mainly sitting at Olivia's bedside and being shuttled back and forth from the ronald mcdonald house. It is extremely hard to leave one of the most important things in the world in someone else's capable hands and fully trust that they too have her best interest at heart. The excruciating thing is that she looks and smells and even sounds like a 100% normal baby. If it weren't for her insides, many would be fooled. She resembles Nathan and Delilah so very much and every time I hold her it reminds me of how fast time flies by. The kids are totally in love with her and light up every time we mention her name. The big moment yesterday was they both got to give her a bottle. We have been very blessed that her surgery was scheduled as it has been because so many of these babies are rushed into surgery and no one really gets bonding time. Yet, the bonding time is what makes leaving her every evening so much harder.

I thought the whole time we were at home holding the fundraiser and making arrangements that I was also mentally preparing myself for what it would be like to be here today. Man was I wrong. I, to some, may seem like an emotional wreck. I cry sometimes at just the thought of her suffering. I know it is not in my hands, and God has her surrounded by his lovely angels. I also know that without all of his grace and mercy she would not be here today. She is a beautiful gift that has allowed our family to grow in so many ways.

The hardest part of today was signing the surgical consents. To hear exactly how they will "fillet" this and "open" that, I could have done without. Even being medical, when it comes to someone you love emotions take over. Lastly, we had Olivia baptized. Which again, I warn you I cried throughout. A baptism is such a special moment for a family and a child and I felt as if it was being overshadowed by the thought of tomorrow. We will do our best to keep everyone updated tomorrow while we anxiously wait and hope for the best case scenario. Your thoughts, prayers and loving support can not ever be repaid and we know Olivia has a job to do. Until tomorrow....


Olivia's Baptism at CHOP


Nathan and Delilah feeding Olivia

Smile for the camera. Brett said he missed an even bigger smile by a second. This is our littlest princess.
I got a picture of Grandpa holding Nathan with this exact smile. I need to find it. We can see how old Grandpa has gotten, ha ha ha.

You can really see her ruptured blood vessel she got from delivery in this picture

Sunday, November 6, 2011

Melanie is discharged and olivia's first bad thing

We are all very excited to announce Melanie is back in the Ronald McDonald house with us. She was discharged from HUP today!!!

Melanie is pumping out lots of milk and Olivia is tearing it up. She is almost to 2 oz each feeding. I am hoping all this eating will hep make recovery even faster from the surgery. She isn't gaining weight however. It takes a lot of food to maintain that cute baby figure.

First bit of bad news for this perfect little girl is that she is getting close to her surgery. The IV through her belly button that is fed through to close to her heart has been delivering a medicine called prostoglandins that keep her heart from closing up and functioning until her surgery. A side effect is that fluid starts to build up in the lungs causing her breathing rate to skyrocket from the normal 60 breaths a minute to 110. We saw her breathing crazy fast tonight and they informed us she just needs a few doses of lasix. It is a diuretic and gets the fluid out. It works too, after we left they gave it to her and heart breathing was back down to 60. Just a little blip, but it happened and it is on the blog, ha ha ha =).

The kids get so sweet when they see their baby sister. Both of them melt when they see her and all their attitude, badness, and talking back just stops and they are 100% enamored with their little sister. They are good kids, despite a few frustrations with them today ha ha. I really like this picture because I told them both to look up and smile and Nathan just couldn't look away he loves his littlest sis so much.

If you are interested in what Nathan and Delilah are doing: Nathan has found a friend in the Ronald McDonald house who keeps trading Pokemon with him on their Nintendo DS'. The kid keeps giving Nathan really good Pokemon, a lot of one-sided trades in Nathans favor so I hear. Delilah has met 2 or 3 friends who she runs around with and is loving hanging out after dinner with them all. We took them to Independence Park yesterday but it is too crowded on weekends, and there are lines to get into lines and we gave up and just took a horse carriage ride. Delilah and Nathan both got turns driving. Delilah is refusing to eat almost everything except for chicken nuggets, too bad we don't have her requested food every night. She will adapt eventually. They both missed there mommy very much and are happy to have her back with them.

Tonight is the first night we are all in one room. I'm sleeping with my Dad and Melanie is sleeping with her Mom and the kids are sleeping together in the twin bed. My dad is snoring as loud as I do, so we'll see if we can drive the ladies crazy tonight.

Tomorrow we'll be with Olivia for a long time i'll try to post a video or two tomorrow. I'll try to tell you guys about the Ronald McDonald house tomorrow. After that it's going to be all medical and gruesome pictures of our sweet angel healing and getting better.

Friday, November 4, 2011

Another day towards getting better and the surgery

First things first, we finally know Olivia's measurements. She is 19 inches long. Our shortest and biggest baby so far. They scheduled her surgery as well, it will take place on Wednesday November 9th. Her surgeon, Dr. Spray, is a very busy guy and that was his first opening. Apparantly, he'll be coming back from a nice vacation so he should be relaxed and ready to go for Olivia's surgery.

I've been taking care of Melanie at the hospital and have only gotten a few moments to steal away and visit sweet Olivia. Today I got to hold her for an hour. I fed her and burped her and it was great having this time with her because I know after the surgery we won't hold her for weeks. Olivia also has big man burps too, it was pretty funny hearing that little baby burp so loud. She is eating like a horse, taking in over 1 - 1.5 oz of milk every 3-4 hours. Hopefully she can gain a lot of weight.

The nurses at CHOP in the CICU are amazing, and they all seem to love Olivia as much as we do. I have met 5 different nurses who have taken care of Olivia and they all were extremely friendly and took excellent care of Olivia. I know this is the easy, quiet before the storm, but I am impressed so far.

Melanie is improving, and her abdomen is feeling a lot better. It is just very sore from the 3 scope holes. She finally had enough energy to get out of HUP and visit CHOP to see Olivia. It had been 2 days since she last saw Olivia so it was a pretty happy moment. Melanie was in the dumps but after seeing Olivia she's going to fight even harder and hopefully get discharged today or tomorrow.
Olivia loves to get in this position and sprawl out in between her nazi nurses forcing her into different cocoon like positions.

In this picture: Melanie was tickling Olivia's chin and she got a few gas smile, I just missed the best one, oh well.

I am back in the Ronald McDonald house with my Dad who just flew in last night. He took the kids to the zoo today and kept the having fun. I have been a great male nurse for Melanie these past few days, and it will be nice to switch with her Mom tonight and enjoy these hard termpurpedic mattresses in the RonMcD household.

Tomorrow there are 3 things we will definitely do. Kids see Melanie, kids see Olivia, Dad and I watch the LSU game! #1 LSU vs #2 Bama should be a crazy awesome football game. It'd be a major plus if Mel was discharged tomorrow too.

Thank you all for the prayers, and comments we read every comment and everyone is just so amazing. Now I just need to go finish the laundry and get to bed.

Melanie's bad luck

It always seems like we are in the clear and then poor Melanie has something crazy happen to her. Olivia came out fine and Melanie was doing great. Then all of a sudden she was in excruciating pain. Even enough Morphine to kill a horse wasn't touching the pain. Melanie was rushed to surgery at HUP. This was definitely not a part of the plan.

4 years ago Melanie was walking around with a ruptured appendix for a week. It was misdiagnosed, otherwise she would have gotten it taken care of earlier. We had no idea what was wrong with Melanie at that time and when we found out about the appendix it was so bad. After an exploratory surgery Melanie spent over a month in the hospital and another month in bed at home. It was a horrible experience. This is relevant because the surgery was so invasive that there are adhesions and scar tissue all inside Melanie's abdomen.

The HUP doctors originally thought something was wrong with her ovaries but it turned out to be a problem with one of her adhesions that all of a sudden was being pulled real tight inside her body causing excruciating pain. A wonderful doctor was able to do the surgery with a scope and cleaned up a lot of Melanie's adhesions. Now it is just a matter of recovery for Mel.

The plan was deliver Olivia, and have surgery on Olivia. I didn't come here emotionally ready for two surgeries but it is all over now. Hopefully Melanie recovers fully and gets out of the hospital soon.

Wednesday, November 2, 2011

Pictures from our visit today part 1

So far there is no real plan of action. Olivia is such a cutie pie and it is nerve wracking not knowing when her surgery will be. A nurse practioner suggested it might be tomorrow or before the end of the week. Melanie and I spent 8:30 to 12:30pm today sitting around with Olivia waiting for the doctors to do their rounds on her. Even though some crazy stuff was happening around us and they never got around to rounding on Olivia we enjoyed some great time rubbing our cute littlest princess.

We signed up for 2 research studies so far for Olivia. A genetics study on congenital heart defect (CHD's) project and a study on environmental factors creating CHD's. Olivia is the 8th patient on the environmental study. It is important to us that Olivia's CHD can help other babies in the future. The researchers approach you as you are sitting there and try to recruit you for their studies. It is exciting that so much research is going on for this.

Our cardiologist just completed a textbook on HLHS. So you can actually say Olivia's Doctor wrote the textbook on it. CHOP Is very impressive and we feel like Olivia is going to do amazing with the excellent level of care she is going to receive.

Thanks for reading and praying for Olivia. She is going to need it and she is going to amaze all of us.

I can't post enough pictures of this beautiful little girl. I'm going to try and post a picture of all 3 of the kids as babies. I think they all look so much alike. We will see.