Monday, November 30, 2009

Waiting in Charleston

Emma had her sedated echo this morning & she did great. Unfortunately we found out that Emma has lost 7 ounces in the last week, that makes 1.5 lbs that she has lost since her surgery.
We didn't get to talk to the surgeon until this evening & he still isn't sure what would be the best way to approach Emma's remaining VSDs. He has been in surgery all day & hasn't had a chance to discuss her case with some of the other doctors on staff & he plans to do that tomorrow morning since he has no surgeries scheduled. He did tell us that opening her up again is the most likely option but he may want to have a heart cathe done first to get more pictures of her heart. He also told us the echo she had today gave them the best pictures he has seen yet of her heart but he may still want more. There is also a possiblity that we may have to go back home & wait a while before the does surgery. He told us he usually likes to wait 6 weeks before he operates again, but he also said that is only 1.5 weeks away & that probably wouldn't make much difference.
So who know what will really happen tomorrow. We are hoping surgery will be planned soon & we don't have to take Emma back home with her losing weight + not eating very well.

Friday, November 27, 2009

My Black Friday

It actually started at 11:15pm last night with Emma waking up but I got her to go back to sleep, to only wake up again at 11:45. I ended up giving her a bottle & then noticed she was really warm. I was really afraid to check her temp but when I did it was 101 & I just started to cry. We had tried so hard to keep her from getting sick & now she has a fever. (This would probably explain why she was so fussy on yesterday & not eating very well.) So I gave her some tylenol, read her some books, rocked her & laid her back down at 1am. To my surprise she went to sleep & stayed a sleep.
Since I was up, I decided to try to purchase a wagon I saw in the Toys R Us sale paper for Emma online but no luck. Their website wouldn't let me buy it online for the sales price + I had a $5 off coupon I was going to use too. So I went to bed unhappy I couldn't purchase the wagon & wondering what I would do in the morning since Chris was going to work & Emma wasn't feeling well.
I actually woke up before Emma this morning & ate breakfast thinking I would either call Chris & ask him to run to Toys R Us or take Emma out if she was feeling better. Well much to my surprise, she wasn't running a fever when she got up & she was in a much better mood than yesterday, although she didn't drink much formula but she did eat 1/2 her breakfast. So I decided to give Dr. O a call & make sure her mysterious fever wasn't heart related & he said she should be fine since it wasn't a continueous fever.
Once I spoke with Dr. O I bundled up Emma & we headed to Toys R Us in search of the wagon. The parking lot of course was packed & the store was trashed with many empty shelves, so I thought for sure all the wagons would be gone especially since its was 10:30 am & they had been open since midnight. I headed to the back where the wagon were kept & the shelf was empty but there was a couple there with one in their cart & they were hoping to find another one. They asked a sales rep to look in the back & they asked me if I wanted one too & of course I said yes. Just as I expected there were no more, so headed on my way.
I stood in the isle & called Chris to see if he could run to the store near his office & then the lady with the wagon in her cart asked me if I wanted hers. I was extemely surprised & of course made sure she didn't really want to keep it but she wanted either 2 or a bigger one. So with much appreciation & thanks I took her wagon from her buggie & told Chris nevermind.
Then I proceeded to the checkout line, only to relize how am I going to do this. Emma was in her stroller (poor planning on my part) & the wagon was in a huge box. The same lady aske me if I needed help & I was a bit embarrassed to say yes & she flagged the same sales resp to help me to the front. Then we found a cart & he pushed it while I pushed Emma. Then I stood the long line with the cart in front of me in one hand & Emma behind me in the other hand.
We finally check out many minutes later & I am pushing the cart & dragging Emma in the stroller, relizing again this was not a well thought out plan. Then 2 ladies behind me in line asked if they could help me & again I was embarrassed to say yes. They offered to push the cart & said they wouldn't touch "the baby." I told them I couldn't believe it didn't consider getting a cart & putting Emma in it & she was shocked I would ever consider it. "You don't want to put her in these dirty carts, especially with H1N1 out there." A bit drastic, but I had no comment to that. I mean I do take her to the grocery store, Target & Walmart with a cart seat cover of course, but we do go out.
Anyway, I thanked the lovely lady, loaded the wagon in my car & we were on our way. Emma fell asleep on the way home, not having her usual morning nap & ended up sleeping for 3 hours with no fever reoccurring, although I am not feeling very well. My throat hurts, chest is tight & congested & I am running a low grade fever. I think the lack of sleeping of me worrying about Emma & getting up with her at night may be taking a toll on me. I am heading to get some drugs to hopefully catch this before it gets too bad & so I don't pass anything to Chris or more importantly Emma.

Thursday, November 26, 2009

Being Thankful

I have seen a few people list 50 things they were thankful for & I thought I would try to do that myself this year, but I want to see if I can list at least 75. I have been thinking about doing this for some time, so there is no time like the present. These will of course will be in random order as they come across my scattered brain.
1. My loving husband
2. Our precious Emma
3. Being a stay at home mom
4. Our home
5. Our church family
6. Our families living locally
7. Growing up in a Christian home
8. The Bible
9. God's mercy
10. God's grace
11. The promise of salvation
12. Power of Prayer
13. MUSC Children's Hospital
14. PCICU
15. Emma's heart surgeon, Dr. B
16. Medical Technology
17. Emma's cardiologist, Dr. O
18. Emma's pedi, Dr. K
19. Nurses at MUSC
20. Ultra sound tech at Dr. O's office
21. Cardiologists at MUSC
22. My mom
23. The time I had with daddy
24. My sisters
25. My brother
26. My neices
27. In-laws
28. Chris' job
29. Unemployment benefits (although my just expired)
30. Emma's quick recovery
31. My new car
32. my friends
33. my education
34. Faulkner Univ
35. religious freedom
36. holidays spent with family
37. the food we have to eat
38. my marriage
39. REACH
40. Lifetime
41. Dr. C
42. fertility treatments
43. Dr. S
44. MFM
45. adoption
46. Emma's hand surgeon, Dr. G
47. Dr. B's medical team
48. Jesus' sacrifice
49. God's patience
50. God
51. Jesus
52. The Church of Christ
53. The sunshine today
54. The changing of the seasons
55. The right to vote
56. Being able to experience pregnancy
57. My eye sight
58. My health
59. Chris' health
60. God's wisdom
61. God's strength
62. God's guidance
63. Emma's strength
64. Emma's willpower
65. Emma's smile
66. Emma's blue eyes
67. Emma's tentative upcoming heart procedure
68. Emma maintaing her weight
69. That Emma has a great Dad
70. Emma will grow up in a Christian home
71. Emma loves books
72. Emma has no idea she has VSD's
73. Emma will not remember going to MUSC multiple times
74. Our elders
75. Our deacons
I made it to 75 but I still feel like I have forgotten a lot so I may add to this list in the future.

Wednesday, November 25, 2009

Going Back to Charleston

Yes, we are going back, again. We knew it was possible that Emma would have to go back to Charleston for another procedure within the next year but we never thought it would be this soon. Since Emma was showing signs of her body working too hard again, Dr. O contacted Dr. B (the surgeon) at MUSC & he agreed there needed to be an intervention with Emma. Dr. B called me himself (vary rare) on Friday & asked us to come on Monday, Nov. 30 for a 3D echo & maybe a diagnositic heart cathe. He said once he & his team took a look at the images then he would be able to decide the best way to approach the remaining VSD's. He also told me to come packed & prepared to stay, so we will be there until Emma's procedure is scheduled, completed & she is discharged.
We kind of have mixed feeling about heading to Charleston again. On one hand we know she needs another intervention but on the other hand she is back to her old self. She is pulling up again, playing by herself & sleeping through the night (although she was teething too & that could be part of it). If Emma does have to have surgery it will probably set her back again but thankfully she is a very strong little girl + her PT has helped a lot.
Please continue to keep us all in your prayers as well as the medical staff at MUSC Children's Hospital Heart Center. We are so blessed to have as many friends, family members & friends of friends who are keeping Emma in their prayers. We can truely feel the warmth around us, thanks so much. God Is Good!!!

1st yr old B-day party

I know this post is a bit late, but we have been a little busy around here which I will post about later.
We had Emma's party a week after her actual birthday to give her more time to recover after her surgery & she had a really good time, except at the beginning. She was a bit overwhelmed when everyone started showing up at the house & cried. All she really wanted was myself or Chris but we were still trying to get the decorations up & start grilling. Thankfully aunt Karen took her outside & she finally calmed down.
As you will see in the pictures below she didn't get very messy at all. She really wasn't digging the cake or ice cream unless we would feed it to her & then she only took a couple bites. She doesn't like to get her hands dirty, so I was pretty sure she wouldn't dive into the cake & she didn't.
When it came time for presents, I wasn't real sure what she would do, but she was great. She was intently exploring each one as we opened them & had a great time.
The pictures are out of order, sorry.

Emma's non-messy face after eating birthday cake.

Taking a taste.

Elmo cake

Look cousin Morgan I got a Sesame Street Pop-up Pals toy from Gram.

Emma excitement, not sure what's up with my facial expression.
Cousin Morgan reading a book.

Emma's laptop from Grammy & Paw Paw

Emma's kitty cat, which she loves & sleeps with often.

Elmo remote which look a lot like our TV remote that she constantly wants to play with

Saturday, November 14, 2009

Dying Vue

My 2003 Saturn Vue seems to be on its last leg. We were really hoping it would last at least 2 more years until Chris' truck was paid off, but no such luck. It has been acting up for several months but yesterday & today it got much worse. I asked Chris to drive it this morning & he ended up taking it straight to Saturn for an estimate. Chris was thinking it was the transmission & he was right. They quoted him $5200+ to fix it which it probably isn't even worth that much & there are other things wrong with it too. I am missing a hubcap (we have been calling it the loser mobile) & today the automatic door locks stay locked even when you turn the car off & its in park (not sure what that is all about).

So now our dilemma is do we get it fixed, buy a new car or a fairly new used car. We are not real sure if we can even afford two car payments with me working & I really don't want to go back to work just to get a car. So Chris is going to drive it until it completely dies & I will be driving his truck. Then once my Vue dies I will probably drive Mama's truck until we get something else. We told Emma she may need to stand on the street corners asking for money since she would most likely get more since she is so cute or she needs to get a job as a baby model to buy Mama a new car.

Now I guess its time to start looking at what is out there & Chris definitely doesn't want another GM vehicle. The main reason we bought my Vue was the 0% financing which saved us a ton of money & hopefully we will be able to find that again since the economy is still in bad shape.

Friday, November 13, 2009

Not Again

Well this morning I took Emma for her 2nd RSV shot & her H1N1 shot & little did I know what the morning would hold for us. The first thing they did for course was weigh her which always makes me hold my breath & with much cause to due so, the number appeared. The scale read 16 lbs, 15 oz. I told the nurse that isn't right, she weighed 18 lbs last Wed, can we please do it again. So we take Emma off (naked & screaming of course), she resets the scale making sure its balanced & the same number appears. My heart just sank & I wanted to cry, not again.

Then Dr. K comes in, a little small talk & then I told her I didn't like Emma's weight & could we please try it one more time on another scale. Well we did just that & you guessed it the number was still the same, 16 lbs, 15 oz. So we discussed some things, her mood, sleeping & eating habits, blah, blah, blah. Then I asked her what she was thinking, is this weight loss fluid from the hospital IV's or real weight loss. She feels its both. She quickly went to call Emma's cardiologist Dr. O & he advised us to up her Lasix to 3 x day + to come in to see him on Tuesday.

Can I tell you how exhausted & stressed out we are dealing with this for the last year. We really thought this would be behind us after the surgery. I knew there would be some post-op stuff to deal with & hopefully that is all this is, but we are very worried about our little girl. We are afraid they may put her in the hospital next week if there is no improvement, of course that was not mentioned at all today but you just never know. We try to prepare ourselves for all situations now so we are not surprised. At the least Emma will probably have to have another echo & maybe a chest x-ray next week, is my guess, so Dr. O can get the full picture of what is going on. So if you could, please say a special prayer for Emma + her Mom & Dad. Thanks-

Monday, November 9, 2009

Favorite Things

As you may have noticed I added a listing of Emma's Favorite Things to the side of my blog over the weekend & now I would like to share a little about her favs.

She has always enjoyed books & that has seemed to increase since we have come back from Charleston. Just about the only thing she wants to do right now is sit with us & read books. We are so tired of reading her those books & I can't wait to give her the new ones I found for her birthday at her party on Saturday. I even found a few more today but I may hold them to Christmas. I love buying books for her & especially when I find them at bargin prices. I sure hope she continues her love for books because her Mama doesn't read very much at all, I just can't stay focused on it long enough.

Her other favs are Elmo & Big Bird & you would think it came from watching Sesame Street on TV but you would be mistaken. I found a book for the summer "Nighty Night" that has some of the Sesame Street characters in it & she would squeal & giggle when we got to the pages with Elmo & Big Bird. Now anytime she sees them she has the same reaction & we do watch them on TV now on occassion.

Now her Glow Seahorse she has had since she was 6 weeks old & she can't sleep without it. She stares at the glowing belly holding on to her fins & falls asleep, its quite precious. I will have to share a picture of it sometime.

She has learned about beads in therapy & Leslie uses them to encourage her, which works most of the time. So before we headed to Charleston I knew we had to get her some to play with while she was stuck in her bead. Thankfully it was a big hit & still is. Now of course this is a toy she can only have with supervision so she doesn't put them around her neck & quite frankly she doesn't even know that is what you are suppose to do with them. She just shakes them & pulls them out of her pumpkin & puts them back in, over & over.

Saturday, November 7, 2009

Happy Birthday Baby!!!

Where has the time gone? Our sweet little Emma, is one & we are just stunned. It has been an amazing year, though sometimes very tough & stressful we made it.

Today we didn't really do much celebrating, we just sang to her several times & went to the park to watch cousin Kaylee play soccer. We also got her a birthday shirt, which you will see below & her Nana got her a birthday bib but we will use it next weekend at her party. We decided to wait another week before we have a party so she can enjoy it more. She has been quite fussy & probably not feeling well just yet since we got home the hospital + she is cutting her third tooth, poor baby (baby can't get a break).

We will be getting her an Elmo (one of her favorite things) cake, but I am not sure if the decor will be Elmo or not, haven't decided quite yet. It will be a pretty small party, family only & I hope she has a good time. I have already purchased 2 of her gifts & I plan on getting just a few more small things. I am trying real hard not to spend a lot for her on her 1st birthday & to save some things for Christmas, it will be here before you know it.

Emma is saying or at least trying to say several words. She can say "Mama" (her second word), "Bye," (her first word), today she said "paci", & she has been trying this week to say "baby", "ball", "good girl", "all gone" and "all done". We haven't been able to get her to say "Dada" yet, but we are still trying.

This was the best picture we could get. She wouldn't keep her hands out of her mouth. Teething again, poor baby & on her birthday too.

Kissing Big Bird's nose (one of her new tricks)

Kissing Mama

Kissing Daddy, but she ends up biting him, twice. Sorry Daddy.

At this point she has had enough & is about to cry. I tried to get the Elmo balloon in the far left corner in the picture too. Thanks Aunt Karen for the balloon.

Wednesday, November 4, 2009

Follow ups

Today Emma had follow up appointments with her pedi & cardiologist & she did really good considering she just got home from the hospital & being poked at constantly. Dr. O, her cardiologist did his own echo of her & his findings were pretty much the same as Dr. R's at MUSC. Emma still has at least 4 holes that they were not able to patch & 1 which is larger than the other 3 that they are a little concerned about. They plan on monitoring her to see if they will close on their own which they are pretty sure they will but the larger one may not. If they start to cause her problems we will have to go back to MUSC to have another procedure but hopefully not open heart surgery again. They are thinking it can be patched with a device via heart cathe which is much less invassive.
Now as for her not eating well, Dr. O & Dr. K are both hoping that will turn around in the next few days to a week. They both told us to cut back on her Hydrocodone since it can be an appetite suppressor & rely mostly on Tylenol. Nobody told us her pain meds would effect her feedings, so we were a little shocked & plan to only use it at bedtime.
We also found out that our little girl now a whaopping 18 lbs. We were at the hospital the last time they weighed her, which was Saturday, she was 18 lbs, 11 oz & we all laughed. She was still very puffy from all the fluids & we knew that wasn't correct. When she arrived at the hospital she was 17 lbs, 13 oz & I knew she had not gained almost 1 lb is less than a week with very little to eat.
Emma's next appointment with the pedi is in 2 weeks for a weight check, follow up vaccines for RSV, flu & maybe H1N1 (if available) & her 1 year vaccines. Her next appointment with Dr. O will be in one month & he hopes to decrease her Lasix to 1 a day.

Tuesday, November 3, 2009

Home Sweet Home

We left the hospital last night at 6:30pm & we are all very glad to be back. I walked in the house last night carrying Emma she started smiling & waving & when we went up stairs to put on her pjs & a clean diaper she smiled & waved again. It made me so happy to know she was glad to be home. Yesterday was a hard day on Emma with all the tests + one final procedure to remove her pacemaker wires & nothing we did made her happy so we were so glad to get her home to sleep in her own bed.
Today Emma has been very tired but has really enjoyed playing on the floor, chasing the cats & crawling again. She has been trying to pull up but she is having trouble with it. I am not sure if it hurts or if she just doesn't have the strength yet to do it but she will be back on track soon. She will go back to therapy again next Monday & hopefully it won't be too hard on her.
Tomorrow she has follow-up appointments with her pedi & cardiologist & we are eager to hear what they have to say. She isn't eating very well & we are a little concerned about it. Dr. R that discharged her said her feeding could pick up as soon as today & that every child is different. We do remember that in March after her PA band surgery it took 4-6 weeks before her feedings turned around & we are hoping it won't take that long this time.
We would like to thank everyone for all their kind words, thoughts, prayers & cards. It is great to know that so many have thinking of us during this time. Thanks also to the MUSC Children's Hospital Heart Center for taking such good care of Emma once again. God is good!!!

Sunday, November 1, 2009

She's Back

Today we have seen our little Emma being herself again. We saw a few signs of her yesterday but today she looks like herself too. She is smiling, babbling, sitting up playing with toys & she even tried to crawl while we were in the playroom but she has mitt on her right hand protecting her IV pic line which got in her way. We also went outside for a short walk again, it was in the 70s & sunny today.
We should be going home tomorrow after they remove her pacemaker wires from her chest & as long as her echo is good. Dr. R said she didn't even look sick today but he wanted to keep us here as a precaution since we don't live very close. She does have a little bit of fluid on her lungs but he says that is normal after removing the chest tube yesterday & it should clear up soon with Lasix.