Saturday, December 31, 2011

New Years Eve 2011

Happy new year!  This was the deck, Martin, booth, Williams gathering. Olivia missed this year but we know she will enjoy the next one.


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Thursday, December 29, 2011

home finally

We made it. Finally!!!!!!


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Dinner of camps and travelers

We just stopped for McDonald's in picayune. 50 miles to nola


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Visitors wanted but wary

We wanted to let everyone know just how much we want them to meet Olivia but we also have to be cautious. We haven't done all of this for her to get sick and end up in the hospital. So, we have come up with some guidelines to not hurt anyone's feelings. Here goes:

1. If u or someone close to u is sick please don't come visit.

2. Please call first before just stopping by. If Olivias having a bad day we don't want to waste anyone's time.

3. We really only want to expose her to one new group of people a day. So, if someone else has already visited that day we may need to plan for another day.

4. Come prepared to use lots of hand sanitizer.

5. Please don't get upset if she doesn't come to parties or functions until April. As many of us will cone as we can, she mat just have to see pictures later.

We are very excited for her to experience all of the love everyone has for her. Thanks for understanding where we are coming from.


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2 and a half hours left

We just passes laurel, ms and according to the gps we have 2 hours and 34 minutes left.


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Getting closer

We are about 70 miles from meridian. Missihippi, as delilah says, here we come.


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Central time

We have switched over to central time. It has been quite a while since I have been in central time. Now to adjust Olivias feeding schedule so er don't mrsa her up too much.


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I-59

We have made it to I -59. We still have 140 miles to Birmingham but getting closer. Along the way the kids have said some funny things.... here are just a few.

"Mommy, why does the road never end? "- delilah

"Why do those people stink? " Nathan asking about two people standing in line at subway.

"I don't like riding in-between mountains. "-Nathan. When asked why...he said I just know the men who check them might miss a spot and a big rock will come tumbling down on us.

"Am I going to my bed now? "-delilah

"Qqaaawaaaa "- Olivia


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Lunch outside of chattanooga

We stopped for lunch at a subway. It was nice to all get out and stretch. Now we drive on.


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Passing Gatlinburg

We have officially driven past Gatlinburg. I included a picture of her sats to reassure all worried followers out there that little miss Olivia is tolerating the trip beautifully.


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In the car again

We are off again. We ran into some ice on the car and had to borrow someones ice scraper. So now we have restocked with dry ice and are eating the breakfast of champions in the car.


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Wednesday, December 28, 2011

Our night in bristol, va

Our first day of driving went well but is thankfully done. We only had to stop for gas once and we timed all of our stops with Olivia for either food or potty breaks. As you can see, all of the kids are pooped. We did have some minor hiccups along the way but we treked on. Our cooler leaked all over the front seat with the dvd player and video camera next to it and I was told off by a stranger for pumping in a bathroom stall at wendys where we ate lunch. Yet, we made it 8+ hours.  We ate dinner at Logans roadhouse and are staying at a Holiday Inn in Bristol, VA with all of a AAU tournament teams. We have to find more dry ice in the morning to keep the breastmilk frozen but all in all today was a success.


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rest stop number 1

Virginia rest stop and run


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We are New Orleans bound!

Last night we got the official all clear from her group of doctors for us to start the trek home. It is definitely going to be a trek too. Olivia can only spend a max of three hours in the car seat at any one time. So for every three hours, we have to stop for an hour and rest, stretch, and take her out. The kids like this because that means more opportunities for junk food which they won't stop begging for. We piled everything in the car and said our goodbyes early only after shipping two huge boxes home yesterday because it wouldn't all fit. I didn't think I would get all weepy this morning but as we crossed the Ben Franklin bridge one last time... I started to cry. I had always kept myself from thinking this day would come. Today is an awesome day.


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Tuesday, December 27, 2011

"You can go.... but"

Today Olivia went to her last cardiology appointment for now in Philadelphia. We had wanted to surprise everyone and head home before the new year, but when we discussed it with the doctor, she wanted us to stay just a few mote days to get everything lined up. She had plans to call our cardiologist at home today to discuss her care plan. She also wants to keep her on lovenox for the full three months because the clot was still there but not as prominent. We are also having to increase her prilosec a little to help with her spitting up.


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Monday, December 26, 2011

Tomorrow is a big day

Tomorrow Olivia has her last scheduled cardiology appt and echo. My nerves are so bad. I'm not really sure why because she has been doing so good. I will update everyone as soon as I can.


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Sunday, December 25, 2011

Christmas day 2011

Our wonderful Christmas. It started early with lots of presents and has continued with crafts, movies and more.


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Saturday, December 24, 2011

Christmas eve 2011

Christmas eve is different but still full of fun.


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Thursday, December 22, 2011

Mirrors

During this whole process I have been shown many things that I might not have been privy to otherwise. The biggest one is peoples true colors. I have realized there are several different types of ways people handle stress and dealing with situations along with different types of people. There isn't a wrong or right way... just a learning curve that can be hard at times to endure.  Please read on below.

1. There are those that say they care but really don't so they just sit back and criticize. These are the friends u thought were there but high tail it when things get tough.

2. There are those that care but don't want to impose or make u feel worse so they don't say anything but are silently supportive and if push comes to shove will help if no one else will.

3. There are those that you  never knew even knew u existed and are there to support u when u need an impartial party.

4. And then there are the people you have always loved and u call family. Some are better than others but u love the all the same.

My eyes have been opened to the fakers, liars, appeasers, and such... but also to the great family I have who I love very much.


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Immunizations

Olivia got her second hepatitis b injection and her second Synagis today. She cried so hard she was worn out. She also got a new eye prescription because her eye cultures came back a regular old staph and not some horrid mrsa. I am happy I can stop doing the ointment because it is really irritating her skin. We are both looking forward to Brett and the kids coming up tomorrow. Now, I have to go tidy up before they get here.


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Monday, December 19, 2011

SOOOO Angry!

To say that I am SOOOO Angry is an understatement. It all started when we first came to the Ronald McDonald House. You see, there is this waiting list. Once you put your name on the list you have to call everyday to see if you get a spot. So, after a week of waiting we were lucky enough to have the lovely Dora room... as you have all seen. After spending 10 glorious weeks in that room, Friday I was asked if I would want to change out of my room, which is handicapped accessible to go to another one. I thought about it, but after 10 weeks in one room....I had a ton of stuff. So, I said no thanks. My mom left Saturday and I was relieved I wouldn't have to give up my fridge or move anything prior to leaving here. Well, after seeing the house managers several times yesterday, they called at 7pm and told me...."surprise, tomorrow you're moving whether you like it or not." I was super pissed off. Now, I had to pack all of my stuff when I was by myself with Olivia. I did it and this morning when I went to get the key to my new room, I found out the new room wasn't even clean yet!!!! So to make matters worse, Olivia woke up this morning with her eyes swollen and completely crusted shut. She was so angry that she couldn't open them that when she cried....just more green pus came out. I called the pediatrician we have seen up here to get fit into her schedule. I was relieved to hear 2:45pm we would see someone. As the day progressed though, I noticed she was eating less and sleeping more. I started to think worst case scenario, but luckily when we got to the office she was wide eyed and feeling much better. They gave me a prescription for eye ointment and sent me on my way. Much to my dismay though..... after I got to the car I noticed that I had gotten a ticket for an expired parking meter. The reason it expired was because I was stuck in the room while a baby coded in the room next to me and they had to wait for ems before I could get past all of the medical personnel standing to watch what was going on. Now, I owe the lovely state of Pennsylvania $36.
Tonight, should be interesting. It is the first night in our new room, with no fridge, where I will either have to pump every four hours or walk downstairs with a screaming baby to heat a bottle. Sleep...may be unheard of.

Saturday, December 17, 2011

Sleep!?!?... who needs that?

Olivia decided she wanted to express exactly how upset she was the Emme was going home this morning and did not sleep last night. She has taken naps on and off but no real sleep. I am barely functioning at this point. This picture is of Olivia in the same 1st Christmas outfit the other two wore too. It is in honor of bbs ugly sweater party tonight.


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Friday, December 16, 2011

Phineaus and Ferb Live

Tonight, while I sit in Philly and bond with Olivia, Brett and the kids are enjoying Phineaus and ferb live at the UNO arena. It was an outing that we had all planned on attending. Yet, plans change and so do circumstances. So, I hope my angels in NOLA are having a blast and really enjoying the change of pace. This weekend will be a busy one for them because they have Aunt BB's Christmas Party tomorrow and a dinner and present exchange on Sunday; Busy, busy little people.

Tonight, I am also amazed at a group of heart moms that rallied together to have a heart baby transferred from Indiana to Boston where they can perform his live saving surgeries. The moms all networked on facebook to raise money for the fuel to fly him to Boston. The story is on ccn.com and on Anderson tonight. It is truly inspiring to know people, even strangers, do care. Without the care and kindness of others, we would not be here with our beautiful Olivia. So to all those who helped us and reached out with even just a smile, Thank you.

Tuesday, December 13, 2011

Bummed

As many of you know, tomorrow is my birthday. Usually, I would be looking forward to a great dinner with family or a night out with the hubby. This year, it will be spent in my lovely Dora room at the Ronald McDonald House. Don't get me wrong.... I know I am very blessed and things could be a whole lot worse yet it just seems a little hard to get excited this year. From November 20th to right after Mardi Gras is the time of year I live for. The crisp cool air, my birthday, the christmas lights, the excitement in the kids faces with the thoughts of presents from Santa... who doesn't love this time of year. Yet this year, I haven't felt the same level of cheer or excitement. Sad thing is I have actually put together a top 10 things list of things I will miss the most this year. I know many of you may be thinking.... "if only she realized how lucky she is!" or "stop whining and move on". For those of you who are thinking that.... I want you to stop this holiday season for just a moment. Take a second while you are celebrating whatever holiday it is you celebrate and look around you. Who is there? I have realized that the holidays are not about what you get or making sure every gift is nicely wrapped, but who you spend them with and how you express your love and gratitude. It is the small moments with the ones you love that make the memories you live with forever. This year, my small family of five will be together and for that I am blessed. Yet, there is a huge part of my family that will not be here. My parents, siblings, in-laws, co-workers and friends will be back home and greatly missed. So while I am very fortunate this holiday season.... I can't help but feel bummed too.

Happy holidays to everyone! Enjoy what really matters this year.

Surgery number 2

Today the appointment went great. Her bloodflow across the shunt is good and her function is remarkable. Her weight and oxygen sats are just what they want them. At the end of the appointment, Dr.  Natarajan approached the topic of scheduling her next surgery. The goal is to get them as big as possible fat wise but not too big. They usually do the second surgery with a sano shunt at 4 to 4.5 months. Dr.  Spray and her cardiologist will both be out of town in the beginning of march at a conference so they will want to do it in the middle of February. My heart totally sank. Olivia is gaining 150 to 200 grams each week. If you do the math, she will be the perfect weight at that time, but I'm not ready. To think she will undergo all of the pain, general anes, possible complications and the whole process all over again. I was just getting used to her being ok. It seems also that Olivia is determined to hinder me celebrating all of my favorite holidays . Mardi gras may be spent in philly too.


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echo

She is all ready for her echo this morning


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Early morning appointment

This morning, we started off at 5 am in order to make it to Olivias 7 am ECHO and cardiology appointment. I want to climb into the stroller with her and fall back asleep. Great news is that Olivia is gaining weight like a champ and could now be considered a Chunky monkey at 9 pounds. It is hard to believe she entered this world exactly 6 weeks ago. She has had quite a journey so far, but she had handled every step better than I could have imagined. Keeping the fingers crossed for good results today.


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Monday, December 12, 2011

Today adventure

I had to get out today, so after sleeping late, Olivia and I went to the outlet mall. It was so exciting for her she slept the whole time. I loved getting out and window shopping. Seeing other adults was great and I didn't have to hurry like most of the other patrons. I did however get shocked by my phone on the way here and I am currently sitting in traffic to get back but oh well. The outing was a nice chilly distraction.


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Saturday, December 10, 2011

Visit from the North Pole

Olivia took her first pictures with Santa today. As you can see, she was not very impressed. I am working on keeping her up during the day because her night and days are all messed up and at least one of us has to function so adjustments must be made.


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Friday, December 9, 2011

our first home health visit

Today was the first home health visit. No surprises and Olivia and I had a boring afternoon out of the cold. We did finish our Xmas shopping online and the internet that has been out for two weeks was fixed today. Not much else to say... no news is good news.


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Wednesday, December 7, 2011

Too much lasix

Last night after weighing and feeding Olivia, I noticed that the top of her head by her soft spot had sunken in. It was so sunken that you could see and feel the edges of her skull. I knew it is a major sign of dehydration in babies so I called the fellow to notify them. They had me hold her morning dose and they notified her cardiologist. They called me back today and just want me to give it to her once a day now. I am so worried I am going to miss seeing some change in her or her behavior. I had no clue how fragile and how quickly it all changes.


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Olivia WWL TV update today

Correction: it airs at 10pm not 5pm today Meg Farris who did a story on Melanie and Olivia in September is doing an update tonight. I've sent her a few good pictures of Olivia, gory and healthy. Hopefully they'll show her in her New Dat shirt. As soon as it comes on and we can get some video online we will post it.

In the meantime i've been putting this together for awhile. It's been a long month.

Tuesday, December 6, 2011

All good at the pediatricians

Today Olivia had another appointment with the pediatrician. She is growing as she should and is getting close to growing out of newborn clothes. This is an exciting step because it means we are making huge steps toward the second surgery.  Yesterday we got a package in the mail and it was just what we needed. Brett sent us French bread, some sweet snacks, magazines and the beloved bills. The best part was two books from the 2nd graders in which they wrote Nathan and Olivia letters of good wishes. There was a lot of sweet thoughts and love in those books. It made us smile and even giggle at times. Thank you to the teachers for thinking of us and putting together something so nice.

I have started the task of Christmas shopping online and getting everyone something special. It doesn't feel just right sending gifts by mail, but I know the gifts will be perfect.


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Monday, December 5, 2011

Emme and Olivia

We had a surprise visit from Emme who was doing business in the area. She got to hold Olivia for the first time. They were both so content.


Olivia is doing fantastic now. She is back at the Ronald McDonald's house and enjoying sleeping uninterrupted. She has hit 8 pounds 8 ounces today. The hardest thing is trying to keep in mind that she is my baby and not a job.  Every morning and night she gets meds, then she gets her weight

and sats checked daily and recorded along with how much she eats, pops and pees. For me it reminds me all too much of my job, which I miss greatly, but takes the fun is her being a baby away. I will take her doing well though no matter how much it feels like a job.


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Sunday, December 4, 2011

Go saints

This is Olivia sporting her bib from her Nanny and cheering for the saints in her new dat gown. Today was a great day. We have a busy week planned with doctors appointments but that beats the hospital anyday.


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Discharged again

We are being discharged again. Yeah!!! They want her to see the pediatrician on Tuesday for labs and next week we have to see cardiology for another echo to follow the clot in her atria. They have increased her lasix due to the increased blood flow from the stent. I'm waiting on the lovenox prescriptions and supplies and then we will be two free women.


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Saturday, December 3, 2011

Will someone listen to me?

This morning I have run into some frustration with it seeming like no one will listen to me.  Last night it started with the night nurse who insisted she knew Olivia better than I did.  When it comes to eating, Olivia has been sucking down 90 ccs every 3 hours. This nurse just knew she wouldn't eat it all so she only gave her 60. That led to a very hungry and angry baby at the end of the bottle. Then since the cath I have been asking about the extra fluid she has on board.  She is very swollen and considering that they gave her fluids and blood... she needs a little help getting rid of it. No one listened to me so now she is breathing like 90 to 100 times a minute and her sats are dropping. The cath doctor just came to see her and NOW they will give her more lasix. So now I wait to see what else I will bring up for no one to pay attention to.


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Friday, December 2, 2011

Finally a pulse

We have a pulse. It is faint but it is there. They are going to do a chest xray, antibiotics, lab work and lovenox tonight. I'm so over drama!


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pulses

She had a stent placed in het shunt. She had Arterial and venous. Now she is giving them hello and they can't get a pedal pulse. Got one behind her knee and good pulse ox but trying to make sure.


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She's out

She is done. Gave her blood. Placed a stent but don't know where because doctor quickly left before I could ask questions. Waiting to see her.


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First update

She is asleep,  they have access and they are just starting to get numbers. No decisions yet about interventions yet or not. Another update at 5pm


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little stinker

Met doth the doctor. He asked about her sats dropping and how we found her low sats. Apparently since she is asleep, her sats are 85. He hopes to get answers but no guarantee.  We shall see.


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off to the cath

They just came and took her now waiting for the doctor to come talk to us.  Will get an update at 4 from the nurse.


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Thursday, December 1, 2011

1 month old

Today marks Olivias 1 month mark. She was very fussy and spent the majority of the day either upset or asleep. Tomorrow she gets her second heart cath to try and figure out why she keeps dropping her oxygen levels. This time, having Brett at home worrying, and me here trying to relay the messages and make decisions is very hard. I have decided that spending the day at the hospital even though I am just sitting and feeding her is more draining than being home taking care of her 24/7. I will try to update as much as I can tomorrow as soon as I know something.


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Oxygen again

She is back on oxygen again. She dropped again this morning so it had to be restarted. They are talking with Dr. spray,  the head of the cath department and her cardiologist to see how to proceed. They want us to stay until surgery number two is behind us. Bummer!


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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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