Happy new year! This was the deck, Martin, booth, Williams gathering. Olivia missed this year but we know she will enjoy the next one.
Saturday, December 31, 2011
Thursday, December 29, 2011
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.
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
Wednesday, December 28, 2011
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.
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.
Tuesday, December 27, 2011
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.
Monday, December 26, 2011
Sunday, December 25, 2011
Saturday, December 24, 2011
Thursday, December 22, 2011
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.
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.
Monday, December 19, 2011
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
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.
Friday, December 16, 2011
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
Happy holidays to everyone! Enjoy what really matters this year.
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.
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.
Monday, December 12, 2011
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.
Saturday, December 10, 2011
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.
Friday, December 9, 2011
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.
Wednesday, December 7, 2011
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.
In the meantime i've been putting this together for awhile. It's been a long month.
Tuesday, December 6, 2011
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.
Monday, December 5, 2011
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.
Sunday, December 4, 2011
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.
Saturday, December 3, 2011
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.
Friday, December 2, 2011
Thursday, December 1, 2011
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.
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!