Thursday, December 31, 2009

Trying Again in 2010

I guess you could say that is my theme for 2010. I don't really have resolutions for the upcoming year, there is nothing to resolve, but I do have some goals (some would say that's the same thing). I seem to bail out, stop trying or conveniently forget the goals I set for myself each year but maybe since I am actually writing them down it will motivate me more.
1. Daily Bible Reading Now I have tried this one several times & haven't made it through the Bible yet using the One Year Daily Bible Reading Bible, but I am going to give it another try. Even two of the congregations we have attended did it as a group & I still didn't finish. Sadly, I think March was as far as I read & I even tried to double up my readings to catch up but that didn't work either.
2. Losing Weight I know everyone says they are going to lose weight in the new year, but the difference here is I am not going to put a limit or goal on the weight lose. I did set a goal for myself last year of losing all my baby weight & I did that, only now my body isn't shaped quite the same (go figure). Now I am not the exercising type or the dieting type but I do enjoy walking + I have been on Weight Watchers several times so I know how to do it. I just need to get busy. If we had the money I would join WW online again but we don't, so I am on my own for now.
3. Make Money I wish I had a plan already setup for this one, but the truth is I just don't. We do know that we probably will not be able to afford for me to continue to stay home with Emma unless some additional funds are coming in. I was receiving unemployment benefits until Nov. 09 but my benefit year has expired so now I must look elsewhere. I hope to do some kind of work from home, whether its freelance design or some other home business but worst case, I will have to return to the work field (BOO). I did get a book that hopefully will help me Making Work @ Home Work. Oh, if anyone has any suggestions on how to bring the $$$ I am all ears.
4. Get Organized Although I have already started this one by cleaning out my drawers I am not sure what my ultimate goal is except maybe to get rid of all the piles on crap in each room. It seems that the only room that does have a pile of things to sort/organize is Emma's. I have been pretty good about keeping her room in order. Now the office & the storage room are most definitely the worst but the entire house needs a complete overhale. I plan to try to do a little bit each week to get this one accomplished ASAP, the clutter & piles are driving me crazy. We may even have to invest in a storage unit or something since our attic is extremely small. Stay tuned to see how this one turns out.
So that is all for now. It has been probably the happiest & most stressful year of my life & I can't wait to see what 2010 has in store. I do have some wishes, prayers, concerns & hopes for the upcoming year but none of these are things I can control, plan or change so I will leave all of them in the hands of our dear Lord. But I do wish you all a Happy & Safe 2010.

Saturday, December 26, 2009

Christmas 2009

Even Emma is smiling for this one.

My fam at Karen & Bob's house Christmas Day, minus Chris (he's taken the pic).

Emma starting to open her presents.

The babies sharing toys.

Cousin Morgan with her basket of food that goes with her shopping cart.

Emma playing her Bee Bop Drum from Santa.

Emma in her new wagon from Santa & her monkey from Paw Paw.

Emma after opening her Sesame Street CD player from Santa.

Emma reading her monkey book from Grammy & Paw Paw.

Emma's remote control puppy from Grammy & Paw Paw.
We really had a great Christmas this year. Emma got so many great things: from Grammy & Paw Paw - a remote controlled puppy, musical marocas, a large monkey & some books. From Santa she got a wagon, Bee Bop Band, books & stocking stuffers. Then from my family she got a Little People Sounds House, Little People Noah's Ark, See n Say Elmo & some dresses.
Tonight we are going to celebrate Christmas with our cousins (Emma's second & third cousins) at Gram's house. I can't wait to take pics of her with cousin Alex, 2.5, Carson 4.5 months & hopefully some of her other older cousin if they ar able to make it.

Wednesday, December 23, 2009

A Special Christmas Prayer

I come to you tonight with a heavy heart for three families that I don't even know but have still added to my prayers. We didn't become friends with any of the other families while we were there due to the extreme seriousness of most of the cases. Most of the families that were close all stayed together in the Ronald McDonald House & we felt Emma just wasn't sick enough for us to use one of their rooms. There were just too many really sick kids whose parents needed it much more than we did.
As of this week I have heard of three families from MUSC Children's Hopsital PCICU lost their children this since Emma was there. All of these children had the same heart defect HLHS (hypoplastic left heart syndrome) which I am not real familiar with but I do know its pretty serious. I can't imagine the heartache these families are experiences after such a lose & especially during the holidays. If you could say a special prayer for these families, I am sure they would greatly appreciate it.
Hope you all have a great Christmas & Happy New Year.

Thursday, December 17, 2009

Follow ups

Emma has had 2 follow up appointments this week, one with her pedi & the other with her cardiologist. Her pedi, Dr. K, thought Emma looked great & sounded great. Emma only has a very slight murmur if any, which is much much different than before. Emma is also eating as much as she was before her surgery in Oct & she has been since we got home from Charleston last week. She got her RSV shot while we were there & we are going to switch her to Pediasure as her milk. Right now she is still getting formula in her bottle but we are giving her Pediasure in a cup at meal or snack time, which isn't going very well. Emma just isn't interested in drinking from her cup at all & when she does its only a few sips. Our main goal right now is to get Emma to gain some weight & how we do it (bottle or cup) isn't as important.
On Wednesday we saw, Dr. O, her cardiologist & he was very pleased with Emma. The notes her received from MUSC said they patched all the holes except 2 very tiny ones & those didn't show up on the post surgery echo. Dr. O did his own echo & he didn't see any holes or blood flowing across the heart. He showed me wear the very large hole in the apex was, its gone, where all the other holes were, there gone. He told me that Emma's case was a very hard one since she had so many holes everywhere & he was very impressed that Dr. B was able to fix them (we all know WHO is really in charge & who assisted Dr. B in his craftmanship). Dr. O also decreased Emma's Lasix to once a day & said he wants to see her again in one month, then he said if all is good he wouldn't have to do another follow up for six months.
Is it possible that our baby girl's heart is normal or at least as close to normal as it can be. You better believe it. We have prayed, cried, wished & hoped the day would come when someone would tell us she is really going to be okay & Dr. O says we are almost there. All we have to do is hold on for one more month to make sure no infection sets in & this will all be behind us. Could we ask for a better Christmas present? Not at all. GOOD IS SO GOOD!!!

Tuesday, December 15, 2009

New Words

Our little one is now saying more words & some of them we may wish she had not learned quite so soon. The first one we noticed was while we were at the hospital she would tell the nurses "No". She also has been saying it when we try to feed her when she doesn't want anymore & she said it several times to the therapist on Monday when she didn't want to work anymore. Now as of right now she is saying it in a sweet & pitiful little voice but I am afraid it may change.
She is also saying "more" & its usually when we are reading books. This little girls loves her books & could sit all day long while you read, especially if you sit in the floor with her. We also think we have heard her say "Uh-Oh" several times. We are trying to teach her what Santa says, Ho Ho Ho, but it sounds more her monkey noise than it does Santa.
Now I have saved the best one for last. Last night she said "Dada" several times & man was Chris excited, she made his night. It is so much fun watching her learn & hearing her start to talk. What a sweet little voice she has, except right now its still hoarse.

Thursday, December 10, 2009

Home Sweet Home

Yes we are home from MUSC Children's Hospital & I am not sure who is the happiest, Emma, Chris, myself or our cats (we haven't picked up Spencer yet from the in-laws). Regardless, we are all looking forward to sleeping in our own beds & not being woken up every 3 hours by someone needing to take Emma's vitals. Emma got to the point that every time the door opened in her room she would cry, regardless who was on the other side, poor baby.
The word on Emma's heart is that there are no residual VSD's & they didn't hear a murmur anymore. Her last echo on Tuesday showed no VSD's which means that either they were too small to register or the two that were left have already closed. Either way it doesn't really matter because there was no blood flowing across the heart which is a good thing. Her feedings should now start to pick up & her weight should start to climb.
The only issue with Emma right now is the vent apparently damaged her larynx & it may take 4-6 weeks for it to completely heal. She is really hoarse & is coughing a lot but there isn't really anything that can be done for it. If they give her steroids it will only delay the healing process of her heart & incision. They also told us that Emma may have had a narrow airway, which is very common in babies but you sometimes don't find out until something like this happens. She is to have a follow-up appointment with the ENT in 6-8.
Emma also has a follow-up appointment with her local cardiologist next week + she will need to get her next RSV shot. She will also start back on her physical therapy which has really helped her out a lot. Before we left for Charleston she was pulling up & cruising on the furniture in the living room. Emma's therapist is going to be so glad when she hears. She has already tried pulling up yesterday & today but she isn't quite strong enough yet, which makes her mad. Poor thing, she doesn't understand but she will return to herself very soon.

Wednesday, December 9, 2009

Still in Charleston

The doctors just made rounds & they told us they would like Emma to stay at least until Thursday or maybe Friday. They are a little concerned about her potassium levels which were really low while she was in PCICU but they seem to be coming back up. They also want her feeding & urine output to increase + she had some blood in her poop yesterday that they want to watch for too.
She still has a cough from an inflamed throat from the vent & is running a low grade fever. She is having a hard time staying awake today so she may not feel good. Thankfully the nurses are real good about staying on top of her pain meds so her pain is being managed a well as it can be.
We are hoping Emma will be up for either a trip to the Child Life Atrium (playroom) or a quick walk outside, its suppose to be in the high 70s today but its raining too. She hasn't been very interested in playing with her toys that we brought only wants to read books, be held or sleep. Poor baby, I know she has to be bored & can't wait to go home.

Tuesday, December 8, 2009

Moving, Gifts, Congestion

Emma is doing really well since her sugery on Thursday. Yesterday the pulled her RA line (measure heart pressure), central line & her blood pressure line. Then she was moved out of PCICU & into a room around 7pm on 7C.
Not long after moving up to 7C a friend of a friend, Kim Kirby brought us a big Christmas surprise. Her & her husband Greg brought Emma a mini Christmas tree & gifts from the Summerville CofC. I had spoke with Kim a few days ago & she told me they wanted to bring us something but I had no idea it would be this grand. A special thanks to the Summerville congregation, your Christian light really is shining in more ways than one. I hope we get a chance to meet all of you some day, your expression of kindness was overwhelming.
Our first night in the room with Emma is pretty tough. Her throat is really sore from the vent, which is normal & expected but she seems is very congested too. Several doctors came to take a look at her last night & this morning & they all agree her lungs sound fine, which is a good thing but she may have picked up something while she has been here. They are continuing to watch her carefully & may give her steriods if necessary.
They also pulled her drain & pace maker wire about an hour ago so now Emma is napping. She is also scheduled to have a chest xray & an echo which are routine after pulling the drain & wires. Sometimes complications can arise after these are removed so they make sure they take a look. Dr. Baker said while doing rounds this morning that she MAY be able to go home but he isn't sure.
All in all, Emma is doing great & we can't thank you guys enough for all the thoughts & prayers that have been on Emma's behalf. She is a precious little baby & we thank God for bringing her to us everyday & granting us the priveledge of being her parents.

Friday, December 4, 2009

Please Remain Calm

is what the docs & nurses keep trying to tell Emma. The recovery for this surgery is much different than the last 2 she has had. They are still keeping her medicated so she will remain calm, still & as little aggetated as possible. If she gets too upset or moves to much she could tear the patches they placed yesterday so they want her to remain as quiet & calm as possible. They are trying to not give her as much morphin but if we can't settle her down they will give her some & she just got a dose before we left at 10:30.
Her temp has come down & her blood pressure came down right before we left but her heart pressure level are still a little high. They may take out one of her drain tubes tomorrow depending on her pressure levels. I also noticed tonight her o2 started had dropped to the low 90s which is okay as long as they don't get into the 80s. I tried to feed her a bottle of formula before we left tonight but she was totally not interested & her nurse said that was fine. She is going to try & offer her one later but its fine if she doesn't take it yet & she probably won't.
The nurse told us all the beds on 7C are taken & she doesn't forsee Emma moving this weekend which is just fine with us. The doctors has orignally told us her recovery wouldn't be any longer than last time but I am already noticing a big difference but of course this surgery was more extensive than I think they had planned. Regarless she is still doing very well considering what she went through yesterday & they are very pleased with her progress, as are we.

Very Pleased

that is the exact word from the surgeon yesterday when we spoke with him after Emma's surgery. He was just beaming with excitement & pleasure that the surgery was so successful. After the last surgery in Oct. he wasn't happy at all & now he couldn't be any happier.
He actually went inside the heart & attached some of the muscles together to cover up some the VSD's + he replaced one of the patches from last time & added an additional one. Although she was in surgery for over 8 eight hours & it was a very long day for us all, she is doing great. Her blood pressure, temp & respirations are on the high side but we just spoke to the cardiologist & he said that isn't surprising with the amount of work they did on her yesterday. They are taking out her breathing tube right now to see how she does & she will most likely come off the vent completely this afternoon.

Thursday, December 3, 2009

3rd Times a Charm

or at least that is our prayer, wish & hope. I told Emma this morning as we got her our of the car this morning in the hospital parking deck that this would be the last time, but of course I told her that 5 weeks ago too. Only God truly knows what the future holds but we have prayed that this will be the last heart surgery she will have to endure. We are very thankful to be blessed with such a strong little girl.
We have received 2 updates on Emma so far & she is doing well. I took about 2 hours to get through all the scar tissue from the last surgery 5 weeks ago & she is now on the heart lung bypass machine. They are predicted it will be between 12:00 - 2:00pm before they are done. I also asked one of the cardiologist yesterday if her recovery time would be any longer since she just had surgery 5 weeks ago & he didn't forsee any complications at all. They are estimating she will be here 5-7 days, so hopefully we will be going home by the middle of next week.
I will post more updates as we get them.

Wednesday, December 2, 2009

Flooding

I must this morning was a bit frustrating & at time a little scary for me, also wondering why nobody warned us this might happen. I knew it was going to rain last night & I even heard it in my sleeplessness but I never expected what we found.
As we ate breakfast on the roof of our hotel that overlooks the river we noticed that traffic was at a standstill & the water level looked high. I heard one of the waitresses tell another table that from the looks of it outside that downtown was most likely flooded but I didn't really believe her. Not that it really mattered, we had to go downtown, that is where the hospital is & Emma had her pre-op scheduled for 9am. We got in the car a little later than I had planned but we thought it was just a traffic jam until we started to notice all the water. Normally it only takes 15 minutes tops to drive, park & walk to the hospital but today it took us 1.5 hours.
I couldn't believe what I was seeing & there were no police out directing traffic but they did put up barracades to close roads, unfortunately all the roads we needed were the ones that were closed. I ended up calling the Same Day Observation Lab to tell them we were stuck in traffic & the completely understood & said get there when you can, so Chris dropped off me, Mama & Emma so we could walk while Chris parked the car. Well we didn't make it very far, a few blocks, before I called Chris & said he needed to come pick us back up. We couldn't even get to the hospital by foot without walking thru knee deep water & we were not doing that, even though we saw many rolling up their pants to do just that.
So Chris came back, picked us up & drove us through the water, to the other side & then we got out to walk the rest of the way. In the meantime, Emma is screaming, due to a dirty diaper + a very sore bottom (a rare thing for her). She actually ended up crying herself to sleep in my arms while we walked to the hospital only to be awoken by a staff member offering to help us find out way around since we came in a side/back door. Once we found our way to admissions, she is screaming again, remembering she has a dirty diaper & sore bottom. I handed her off to Mama for her to change her diaper while I check her in & she is screaming "Mama, Mama" as they walk away. That was a first & it just broke my heart.
So we arrived at Same Day around 10:30am & I heard her cry out my name many more times after that. Anytime Chris would take her from my arms, a nurse or doc would need to examine her & each time it still broke my heart. It makes me feel good knowing she needs & wants her Mama but also lets me know she is started to reach the age of getting scared & unsecure. She didn't cry for me 5 weeks ago when we were here, so she has grown up a lot since then.

Tuesday, December 1, 2009

Surgery Scheduled

I just spoke to the surgeon & he has scheduled Emma for her 3rd open heart surgery on Thursday. I must say I have never been so happy to hear that Emma would have surgery until now. We were really concerned after speaking with him last night that he may send us home today to only come back in a couple weeks. He normally only does additional surgeries after 6 weeks post-op & Emma will be 5 weeks tomorrow. I asked him if there was any risks we should be concerned about & he said no. He really would like to wait a few months before going back in but since Emma is losing weight she needs surgery now & we totally agree.
I don't have any details on her surgery as for what time but his secretary is suppose to give me a call later today with all our instructions for pre-op tomorrow & Thursday. He did tell us he is planning on patching as many holes as he can instead of using a open heart cathe device. The echo pictures he got yesterday were some of the best he has seen of Emma yet & he told us there are many holes, more than he knew about so it will be a difficult patching process but its the best route for Emma.
Please keep us all in your prayers as we go through this again. We feel so sorry for Emma having to endure this again so soon after her last surgery but is totally in her best interest so she can thrive & grow. This is all for you baby girl!!!

Beginning to look like Christmas

at least on my blog it is, but not at home. I had a little trouble picking a Christmas theme this time but since Emma is really enjoying seeing Christmas trees & we are trying to teach her what Santa says, "Ho, Ho, Ho", I thought this fit pretty well. I am eager to get home & start decorating for Christmas (although the tree will have to be in the kitchen again, still lacking) but also wondering what it will be like this year with a little one who is crawling, pulling up & starting to cruise on furniture (just started that within the last week). I really hope she doesn't use the tree to pull up on.