God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Friday, July 30, 2010

Anna Grace - June 29

So tomorrow is Saturday and now that we are out of quarantine we are thinking we might attempt to take the family to Mee-mee's lakehouse tomorrow. We've only tried it once b efore and it didn't go too well. Anna Grace was very scared and wouldn't nap at all while we were there. BUt, that was about8 weeks ago so I think we're at least go to go down and give it a try. If she doesn't do well then we'll just pack up and head home and just say we wasted a little gas. Please pray that Anna Grace will travel well and not be scared in the new environment around some new faces. If she does well then maybe Mommy and Daddy can do a little skiing???? It's been a while but I think it will come back to me :)

Wednesday, July 28, 2010

Anna Grace - June 28

Happy Birthday Little Miss Anna Grace....... she is 7 months old today!!!! Our living breathing little miracle. Thank you Jesus :)

By the way... I also want to mention that we are now out of quarantine until October 1 (unless cold & flu season starts early this year). So... you might be seeing us out and about a little bit - although Anna Grace has some serious stranger anxiety so we're going to be starting off small with her at first... just trying to get her used to being out of the house and around people. But... Zachary is going to be able to go to Church again and he is SOOOO excited. I think that taking Anna Grace to Church might be a little overwhelming to her as we attend a pretty large church so we might wait on taking her for a while still. But - we can g out amongst people again - YEAH, YEAH, YEAH :)

Tuesday, July 27, 2010

Anna Grace - June 27 - Update # 2

So we just got home from Anna Grace's appointment. Overall the doctor was pleased with how she looked. She weighs 16 pounds 3 ounces now and is in the 30th precentile in height & weight. Her O2 sats today were 85, which is awesome! She had her chest x-ray which still showed some fluid around her lung, but he said it looked the same as last time, so not any worse which is good.

The only hiccup today was that I mentioned to him that she has had some puffyness under her eyes in the morning - it's pretty signicant. It decreases as the day goes on though. He said that it could be the result of an issue with her kidneys. During her last appointment with Dr. Y we had her urine & blood checked and she had high levels of protein in her urine. Anyway.... he said that he wants to follow up in a couple months with some more tests to be sure that her kidneys are OK and to just watch the puffyness. If it continues and is persistent to let him know & to bring her in for some testing. So, please be praying that if there is a problem with her kidneys that the Lord would just heal that and that it wouldn't be an issue for her. We'll keep you posted.

As for the whole sleeping thing... I of course mentioned it to him in case there was some remedy that I wasn't aware of to help my baby sleep. No such luck..... he said that she has just been through a lot in her 6 months of life and that if she was a healthy baby he would tell me to put her in her crib and let her cry. He said that he thinks she really needs to be a couple months post-op before we can even talk about doing that. So... for now we will just continue doing what we're doing and pray that the Lord will help her rest and relax.

Anna Grace - June 27

Anna Grace has a pediatrican appointment this morning. This is a scheduled visit - it's her 6 month well baby appointment (although she will be 7 months old tomorrow)! She won't be having any vaccinations today since they want her to be 6 weeks post-op before she has them - so other than a chest x-ray it should be a pretty laid back appointment. Although, with Anna Grace's LOVE of doctors I'm sure we'll both be pretty tired when it's all said and done :)

Zachary is going to his FAVORITE Mrs. L's house while Anna Grace and I are at the doctor. He's been driving me crazy about going since he got out of bed this morning... he is so looking forward to going he was dressed and ready to walk out the door at 7:30 today. I'm glad that he likes going there so much :) Will I be able to get him to come home is the question?????

Just to update you on the new house... I didn't paint on Saturday as we discovered the ceilings needed some work done to them first. So, we have someone who is going to come fix the ceilings and THEN we will get started on the walls. Hopefully it will just be a minor delay and we can get started on the painting soon.

So as for Anna Grace's sleeping... we had a rough time getting her to go to sleep last night. Brian took her for another drive but it didn't work and she cried the whole time. I am just praying that once she stops taking the antibiotic and she gets off the Portagen that she will feel better and full and be able to rest and relax a little bit more. I tell you, it's hard to know what to do with her.

I'll update you after her doctor appointment today. Thanks for continuing to pray for Anna Grace :)

Monday, July 26, 2010

Anna Grace - July 26

Yesterday was a pretty bad day for Anna Grace. She had a really hard time sleeping (specifically napping) yesterday. By the time bedtime rolled around (7:30 pm) she had only napped about a total of one hour yesterday. Needless to say she was SOOOOOOO tired that she couldn't fall asleep and CRANKY. Brian ended up putting her in the car about 8:00 last night & driving her around until she fell asleep. We've never done that before and it was one of those things BEFORE I had kids that I said I would NEVER do. It's funny all the many words I have eaten since becoming a Mom :) Thankfully the driving around did the trick and after they got home we put her in the crib and she did pretty well last night for sleeping. I woke her up at 11:00 pm to feed her and then she slept until 5:00 am. I fed her at 5:00 and then put her back to bed and then she slept on until about 7:00 am. For us... that's a pretty awesome night. So.... I say all that because right now... at this moment (2:46 pm) on Monday, July 26 I have BOTH kids napping at the same time. Why is that such a big deal????? Becuase I think it has only happened for me ONCE the last seven months. Hence the blogging in the middle of the afternoon :) Anyway... I better get off the computer now and do some real work... like laundry.... and cleaning.... and picking up the toys strewn around my living room. I am thankful to be a Stay-at-Home Mom and to have these two pretty great kids of mine.

Thursday, July 22, 2010

Copied from Another BLOG

So I am about to copy & paste a post from another heart Mom's BLOG. I thought it was so interesting and encouraging that I HAD to share. I hope you will find it informative as well. Although this boy's diagnosis is HLHS (Anna Grace's is HRHS) it is very similar. So... here goes....

___________________________

I'm sure several of you watched the ABC show BostonMed a few weeks ago when the episode featured a family expecting a baby with HLHS, right? I watched it. And honestly I was disappointed that it didn't provide any time lapse information so viewers had at least a little clue as to how long the Peerless family was in the hospital with their son, Sam. In my opinion, it went from birth, to an emergency surgery to discharge and then suddenly showed video from their home. It never once indicated how long the family was in the hospital, the fact that the baby had a second scheduled heart surgery (the Norwood) and didn't show any obstacles or struggles with feeding or any other area of the baby's recovery. I was disappointed to say the least. Again, in my opinion, ABC (through their wonderful editing) made the HLHS journey come across like a walk in the park.

I spent some time reading through the various comments on the Peerless family's patient page on the BostonMed website and honestly it seems apparently I'm the only one who felt the way I did about how ABC represented this family's journey. I know they had a very rough time, obviously any family in this position would have a scary and uncertain future ahead of them and I know first-hand (as do several of you) how difficult it truly is. So again, let me emphasize that I'm disappointed with how ABC represented the story and in no way have any ill feelings toward the Peerless family. I am ecstatic their journey with little Sam has turned out so well and am so pleased that their family is together (i.e. her husband is no longer deployed).

Anyway, I say all of this to tell you that while reading through the comments, I came across a comment from a 20-year-old HLHS college student named Tom. He provided his email address in his comment to the Peerless family, so I decided to email him, hoping he wouldn't mind my "stealing" his contact info from ABC. :)

I was pleasantly surprised, overwhelmed and utterly encouraged by the response I received from Tom. I asked for his permission to share his thoughts/comments and answers to my questions here on the blog, and he was so very nice enough to oblige. Thank you again, Tom, for your generosity!

Here we go!

Here is Tom's story, in his words:
"I was born (first child to my parents) in 1990 in the San Fransisco Bay Area and diagnosed within hours with HLHS. I am not sure what the hospital was called but I was transported to UCSF where I underwent my first step of surgeries. I had the norwood and glenn at UCSF with Dr. Haas which was supposed to be 2 surgeries but because of complications was actually 4. My last open heart surgery was done at CHOP (Philadelphia) which was the Fontan with Dr. Spray. I am not sure how many catherizations i have actually had but I actually have one this thursday at phoenix childrens hospital. All of my caths have been done for mainly 2 reasons. 1. To get images, data, and information about what is going on in my heart that is difficult to get other ways and 2. to perform small procedures as in placing a stent or a balloon in the heart.

I am currently on 3 medications; coumadin as a blood thinner, digoxin for my heart rhythm ( i have been known to have heart flutters) and enalapril for the blood pressure in the aorta.

So thats the logistical stuff....as for me, I feel great ! I have lived nearly a normal life with just more restrictions on certain things...less caffeine, less athletics, sports, etc. I played sports until i was about 10 though....just recreationally and with friends and still play some sports with my friends. I just have to make sure I know my limits and my friends respect that which makes it alot easier. I am a college student entering my junior year this august. I am a physiology major hoping to enter medical school soon ! my cath this thursday is simply a checkup on my heart to see whats going on since they have had a difficult time getting images via MRI because of the metal coils in my heart."

After sharing his story, Tom was nice enough to answer my questions:

I'm curious if you have any older or younger siblings, and if any of them have any heart issues?
I am actually the oldest of 4 and my sisters and brother have not had ANY other issues; heart or anything.


Did you have a similar series of surgeries like they're doing today? Norwood, Glenn, Fontan?
I have had 5 open heart surgeries as of now....the norwood was 3 for me because of complications, the glenn, and fontan! exactly the same but probably go more smoothly now haha


How much of your early experiences/surgeries do you remember?
I do not remember anything from my open heart surgeries...its been about 13ish years I think since my last open heart surgery but I do remember some from my catherizations since I have had a few the past few years and one this thursday...its not traumatizing or anything but I do get scared before I go under anesthesia a little. but being the future doctor that I wanna be, I know that medicine and my doctors willl do the absolute best for me so I don’t worry too much.


What was the hardest thing for you as a child growing up with HLHS?
I will say that junior high was by far the toughest....boys being boys and being that age is tough because people are sooo critical of each other. I was always embarassed of my scar which I now know is not at all a big deal, in fact, girls dig scars lol.....I also LOVED sports so having to let go of them around the age of 10 because of how competitive they became was also difficult. I had to get over the kids teasing me and stuff in PE class but honestly, after junior high, it was easy because people understood.


If you have siblings, did you feel you were treated the same as they were? Would you have wanted to be treated differently?
I have been treated the exact same as them...I mean obviously after a surgery or something ill get special care but other than that, everything was the same which I really appreciate because as HLHS children, we just wanna be as normal as possible.


Did you get sick often as a child, or did you stay relatively healthy when it comes to colds, flus, etc.? If you did get sick, how serious was it?
I actually have had a great immune system and hardly ever get sick....when I was a child my parents did everything they could to keep me from getting sick so it never really happened but when I do get sick, its nothing worse than a normal flu or cold.


If you could change anything about your experiences over the past 20 years, what would you want to happen differently?
I would not change a thing honestly. and if somehow I could take HLHS away, I wouldn’t because it has made me a MUCH stronger person and I would not be the person I am without it. it has taught me a lot about life and has really opened my eyes to life in general. and my interest in medicine has become a result of HLHS.


What prognosis has your cardiologist provided for your future?
I have not really spent the time talking to my doctors about my future that far down the road. The problem and reason that this is the reason is because I am one of the oldest children with HLHS still living....I think the absolute oldest is mid 20s. as bad as it sounds, my "generation" of hlhs patients are like the guinea pigs that are almost like the test material that they learn from....this is why I still see a pediatric cardiologist, because cardiologists don’t know much about our diagnoses and futures. but, as my generation continues to grow older, we will learn more and see how long term effects our hearts.


Just curious... how did your parents handle your diagnosis and surgeries?
my parents handle it well actually....I don’t have memories of my open heart surgeries but as for catherizations they act normally leading up to the day but when I get taken back and stuff for the anesthesia, my parents do shed some tears and get nervous....kinda like I do too though. but they handle it well.....probably better than when I left for college lol

hopefully i gave some good information for you...i know just how hard it must be for you and how much you worry about your child but trust me, medicine is so great right now....i mean, i was born in 1990 and i have been amazing! nearly normal life....just a few bumps along the road.
What an amazing blessing and encouragement Tom has been to my family and I with his open and informative response! I hope and pray he can be a blessing to you, too!

Hello Zachary

After watching his sister's video clip online Zachary decided that he wanted a video clip online too. Here is Zachary making his onscreen debut.... enjoy!
video

Wednesday, July 21, 2010

Hello Anna Grace

videoHere is a little video clip that I shot of Anna Grace today. As you can see, when we are home with just the family she is a happy little girl :)

HRHS - July 21

If you get a chance, check out this BLOG and this song which was written about a little boy with HLHS.... VERY similar to Anna Grace's diagnosis. I guess I need to get this CD....

www.juliannesjourney.blogspot.com

Tuesday, July 20, 2010

Anna Grace - July 20 - Update # 2

Just wanted to let you know that I had to take Anna Grace into the cardiologist today to have him look at her incision. Basically he thinks that some of the stiches (that are supposed to be dissovable) are working their way out of the skin and making it red and irritated and causing it to abcess. He felt like the best thing to do was to start her on Keflex which is an antibiotic. She has to take it twice a day for 10 days. She had her first does today and her tummy didn't like it very much. I am hoping that it was just a fluke and tomorrow will be better. Please join me in praying that she can tolerate this medicine. Her doctor said to just keep a close eye on her incision and if it doesn't seem to be getting any better to bring her back in. Healing takes time.... it can't be rushed.

Our next scheduled doctor appointment is a week from today... hopefully we won't have to go back in until our scheduled appointment.

On a completley unrelated note...... I have a dear friend driving here from NC on Saturday to help me paint the very dated wood paneling in the family room of our new home. In a perfect world of unlimited budgets I would tear out the paneling and put sheetrock up in the family room.... but paint is a lot cheaper and we can do it ourselves. So.... my sweet girlfriend is coming to sand, prime & paint with me. I am so excited... not so much about the painting but about hanging with my girlfriend! Please pray for Brian on Saturday as he will be keeping both kiddos by himself all day while I'm painting! Seriously... pray for him... AG is a handful on the best of days.

Anna Grace - July 20

So yesterday Anna Grace's incision started looking a little red to me, just at the top of the incision basically right under her chin. She's not running a fever, but I called the pediatrician yesterday to let him know. He said that I could bring her in if I wanted him to look at it, but that as long as it's not "oozing" and she is not running fever then it should be OK. I also talked with her cardiologist who basically said the same thing, but that he might start her on Keflex (sp?) if he thought it was getting infected. Basically I've just decided to watch it for the next day or so to see what happens before I take her in. If it starts looking worse then I'll take her in to have it looked at. Please join me in praying that this it just a little irritated from drooling and that a bib will solve the problem. I hate to take her in unless I HAVE to because it is so traumatic for her to go to the doctor (understandably so).

I also haven't mentioned the whole sleeping through the night thing in a while because why beat a dead horse...... she was just waking once during the night (usually about 4:00 am to eat) but for the last two nights she has been waking at midnight AND 4:00 to eat. I suspect it is because she is on a fat-free diet so her food is just not filling her up for very long, but Mommy is tired..... it has been almost 7 months now and I could really use a whole night sleep. I am hoping that once we make the switch from Portagen (on AUGUST 10) that her fat filled diet will do the trick and we can all get some much needed sleep. Chylothorax stinks!

I will leave you today with an article my Mother-in-Law e-mailed to me yesterday about some reserarch that is being conducted regarding Congenital Heart Defects (CHD's). It is exciting seeing research being conducted and although it will probably not help Anna Grace, it may help someone else's baby 50 years from now. Once things settle for us I am definatley planning on spending some time raising money toward CHD research.



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They’re not much to look at - squishy little blobs, 5 or 6 inches long and transparent, lying inert at the bottom of an aquarium in a research lab.

But for Winthrop University biology professor Heather Evans-Anderson, these simple organisms are the subject of some pretty complex study - research that just earned her more than $419,000 in funding from the National Institutes of Health.

Winthrop Prof. Heather Evans-Anderson just received a National Institutes of Health grant for over $400,000 to study sea squirts, sea invertibrates with genes that allow them to repair damaged tissue in their hearts. Her research is focused on studying how this process might translate to humans.

They’re called sea squirts - or Ciona intestinalis - and what makes these sea-dwelling invertebrates interesting is their ability to repair damaged muscle cells in their hearts through the regeneration of cardiac myocytes, or heart muscle cells.

This is the process Evans-Anderson and her assistants will continue to study with funding from the NIH grant, which will pay researchers and a lab technician while covering costs of supplies and facility and equipment rental for the next three years.

“We’re trying to understand the basic questions about the biology of how the genes work using a simple model,” Evans-Anderson said.

Congenital heart defects are the most common birth defect in humans, according to the American Heart Association. Cardiovascular disease is another threat, Evans-Anderson added.

Research like Evans-Anderson’s is important because it could lead to changes in our understanding of the human heart and - years from now - provide the foundation for medical advancements.

Sea squirts get their names from how they behave in the wild, attaching themselves to things like wharfs, boats and reefs, where they live out their lives - sucking in water, filtering out the microalgae to eat and squirting water back out.

Sea squirts are hermaphrodites, meaning their reproductive organ produces both sperm and eggs. They reproduce by squirting out eggs and sperm in the water to mix with that of other sea squirts.

Other than that, their lives seem mundane. But what goes on inside their hearts is extraordinary.

During development, Evans-Anderson said, when a sea squirt’s heart is forming, the cells are proliferating - “growing to build the heart.”

The same process is going on in a human heart as the embryo develops.

But unlike the sea squirt, whose cells continue to multiply throughout life, allowing damaged heart tissue to heal itself, the cells of a human heart no longer proliferate, or regenerate, in a meaningful way after birth.

“If we can see why regeneration happens” in a sea squirt’s heart, she said, “we can then see what’s different” in human heart development.

The answers lie in genetic research.

Evans-Anderson and research assistants James Tucker and John Samies, both senior biology majors, are studying the development of sea squirt hearts - from fertilization to adulthood - by studying the genes that direct heart development and the processes that repair cells.

Running tests, looking through microscopes, and playing with petri dishes might seem a little slow, but Tucker and Samies are energized by it.

Samies plans to study orthopedics in medical school, but since he started working in research, he might see a different track ahead.

“I’m starting to get pulled toward research,” he said. “Going through tissue samples, extracting RNA and making DNA from it - that’s fascinating.”

Tucker already knows he wants to be a research scientist, maybe focusing on microbiology.

“A lot of the things we learn in here we haven’t learned in class,” he said.

And, as Evans-Anderson pointed out, turning down the grinding rock coming from her computer, “We are also big fans of Rage Against the Machine.”

Over the next three years, their work will involve isolating the sea squirts’ heart-development genes, removing them and then watching how the organism develops without the gene. That will tell them something about how the missing gene functions and how it interacts with other genes.

It’s like working on a car, Tucker said. Take something out, disconnect a wire, remove a part and watch to see what no longer happens.


Except with a sea squirt, it’s a gene they’re taking out.

It’s a complicated process made easier by the fact that the sea squirt’s genome is so much more simple than a human’s.

Unlike the human genome, which has multiple copies of certain genes, the sea squirt’s genome doesn’t have as many copies to sort through, making it easier to identify genes, isolate them, and see how they function together.

This simplicity makes the sea squirt an ideal model.

If scientists can isolate the genes in a sea squirt that allow its heart cells to regenerate, Evans-Anderson said, they might be able to figure out which human genes could do the same thing and somehow “turn them on.”

Read more: http://www.thestate.com/2010/07/19/1382309/sea-squirt-may-hold-answer-to.html#ixzz0u8iuhJnG

Sunday, July 18, 2010

Anna Grace - What Would I Do?

I saw this post on another Heat Mom's BLOG and it relly got me to thinking... what would I do? What will I do???? Because it will inveitabley happen to us. How can I handle this situation in the best possible way for Anna Grace's self esteem? How can I handle this situation in the best way to bring Glory to God? Hmmmmm......

Just thought I'd share... I welcome your input....




It's not polite to stare....

A few weeks ago I read on another heart mom's facebook post about an incident she had at her local pool. I was surprised by what had happened to her since we have never had any issues like that. We have visited several pools in our area and even outside our area with no issues. Everyone is polite and respectful.

However I suppose I jinxed myself by commenting on her post stating it has yet to happen to us because just my luck......the other day it did.

I completely understand now why the other mom was so deeply disturbed by what she saw. I didn't like it either and I never thought that it would bother me so much.....but it did.

A group of women that I often refer to as the mom squad at our local pool were all congregated in their normal spot right where Logan passes by several times. It is right next to the kiddie slide that he loves to go down. Maybe they have never noticed Logan before or possibly since the pool was unusually quiet that day they became bored and found something new to gawk at. Whatever it was they apparently forgot their manners that it's not polite to stare. This wasn't the normal oh wow look at that little boy's chest, poor thing kind of stare. This was more like the look at the son of Frankenstein in the pool kind of stare. The part that disturbed me the most was that they all stared for quite some time like it had been a group discussion that we weren't included in followed up by one mom who continued to stare for several minutes afterward.

I told my husband what had happened and of course his solution to the problem involved me waving around my giant stick and teaching them a valuable lesson about staring at our small child. While that approach may have gotten some results, not to mention cause a pretty big scene, it wasn't one that I felt was appropriate for our children to be witness to.

Granted Logan is still little and didn't really notice their gawking. However I did and I know that someday he will feel those stares. There may come a day when I can't be there to wave my giant stick around to protect him from those that want to judge him. The scar that runs down his chest is not like the typical surgery scar. It is not the very faint line that most are used to seeing on someone who has underwent heart surgery. Most people you can't even tell unless you are fairly close to them. Following Logan's second heart surgery he had carried around a pretty ugly scar. His developed keloids that make his scar look like a giant pink worm has attached itself to his chest. It is itchy and causes him some discomfort if we don't moisturize it following his bath. Logan's wonderful surgeon, God bless his heart, wanted so badly to fix that scar in January following Logan's third surgery. He and several others spent a lot of time in the operating room after they closed him up trying to make the scar look better. It didn't pan out and he still has the same scar. One cardiologist told us prior to Logan's most recent surgery that they can't fix that scar. Someday if Logan chooses to he will have to see a plastic surgeon to have that corrected and possibly endure painful cortizone injections. Of course with each surgery he has the keloids can come back and most likely will.

To me his scar is beautiful. It is a reminder of all that he has endured and fought hard to overcome. I don't see it as some freakish scar that he should be ashamed of and I most certainly don't want anyone to ever make him feel that way. I shouldn't have to cover his chest to keep prying eyes away because to me that will only feed into his own self esteem issues later in life if I am constantly telling him he has to keep his shirt on.

Someday he will ask me about his scar. He will ask me why he has one and other kids don't. I am sure there may come a time when he will not like parts of this journey and will feel discouraged that others may treat him differently. My hope is that the lessons he will learn along the way will continue to mold him into the young man that I believe he can be.

I hope that those who may read this post will see it as a learning opportunity.

It's not polite to stare even at small children. There is nothing wrong with them if they appear different from your own. They play and act like all normal children do. They want to be loved and accepted so please have a little respect. You might not get so lucky to meet me as their mom. Instead you may cross paths with the one who pulls out her giant stick and starts waving it around like a crazy person.

Friday, July 16, 2010

Bentley Misc....

So today has been a pretty quiet day compared to yesterday. The kids and I have been hanging around the house trying to keep ourselves occupied. Brian has been working at his job AND working at the new house. House Project #1.... putting up a fence along the back of our property line. The yard has a chain link fence already, but our neighbors directly behind us have a great big rotweiller type dog that could easily jump our measley 4 foot chain link fence and eat our kids for dinner... so a 6 foot wood fence is going up. Brian and his Step-Dad have been working hard to get it up. It's about half way completed and they are both wore out. I am hoping they can get it done this weekend and then get some rest before starting on the next project..... cutting down some trees.

What a joy it is to BLOG about non-health related things :)

Thursday, July 15, 2010

Anna Grace - July 15

So, as I mentioned in my post yesterday Anna Grace was looking a little blue. Today she was still looking blue so I called her cardiologist to mention it to him. I'd considered just waiting until our next cardiologist appointment, but so soon after surgery I figured I'd better play it safe and just call. So, after speaking on the phone with the cardiologist he said he wanted to see her TODAY. So... we drove to Greenville today to see him pretty much as soon as we got off the phone. Many of you saw Brian's facebook update and we SINCERELY thank you all for praying for Anna Grace. Her O2 sats were 85... which is stellar. Her hands and feet are blue though.... Dr. R said that crying (which Anna Grace does A LOT of) will cause her O2 sats to drop significantly and cause her to turn blue. Anna Grace's hands and feet have stayed blue though and he said that it's "acceptable blue"... he said next time to look at her tongue and if her tongue is blue then be concerned. OK... so now I know. Since I am still learning about being a heart Mom to a "Hypoplast" (as the docs call them) I am still learning what's "acceptable blue" and "not acceptable blue". By the time I get it all down it will be time for her "fontan completion" and then I will have to learn new stuff all over again. Anyway... it was a little scare for me, but turned out to be just fine. I am thankful to be home with my kids and NOT on my way to the hospital. What a blessing - thank you Lord for your favor today!

Wednesday, July 14, 2010

Anna Grace - July 14

So I think we are starting to get settled in finally and Anna Grace appears to be feeling a little better. Although, she looked a little more blue to me today, something I will be sure to mention when we see the doctor again. Other than that things are pretty normal. Anna Grace has almost mastered sitting up by herself. I do have to hang close to her though because the moment I step away she falls over. When she does fall over it doesn't seem to hurt her - she doesn't cry and she's prefectly happy for me to sit her back on her bottom for more playtime with toys. It's really quite cute and she seems to like it better than laying on her back - of course NOTHING compares to hanging out on Mom's hip, but let's face it... she's almost 16 pounds so she can't hang out on my hip all day.

Before her second surgery she was flipping from back to tummy and tummy to back but she has not yet attempted to roll over since she's had her surgery. I'm guessing her chest is still too sore to try it. Hopefully she'll be feeling up to it very soon.

As for the new house.... the previous owner was a smoker so before we can move in we need to replace the carpet and repaint the house. We are hoping that maybe in a month the house will be ready to move in. I think next week I am going to start trying to sort through all of our "stuff" and get things ready for a yard sale that we will surely need to have. Speaking of yard sale... Zachary told me the other day there was a new toy that he wanted. I told him he could sell some of his toys at the yard sale to make money to buy the new toy he wanted. He said, "I CAN'T sell my toys Mom... I love them all". Hmmmmm..... seems that our yard sale is going to be a teachable moment!

Tuesday, July 13, 2010

Happy Birthday!

Happy Birthday to my awesome husband Brian....... SOOOOOOO proud to be your wife :)

Love you!
Tina

Monday, July 12, 2010

The Bentley's - Home Sweet Home

So.... I have some exciting news to share...... we just bought a new home!!!! Well, it's not NEW, but it's going to be new to us! We are excited as the house where we currently live is on a main road - which was fine when it was just Brian & I, but now with Zachary getting older and also now having Anna Grace we really felt like it was time to move off the main road and into a subdivision. So, we closed on it today. It's an older home, built in the early 80's and has not been renovated at all, it's in good shape, it just needs some updating which we will do little by little as we can. So - we will do some paintintg and such before we move the family in, but it shouldn't be too much longer until we will be in our new home. I am so excited that Zachary is now going to be able to ride his bike in the evenings and that I will be able to take Anna Grace in walks in the stroller. Just being able to go out doors in the evenings will make quarantine so much more enjoyable! I will try to post some pics of our new home up now that it's ours.

We are keeping our existing home and are planning on renting it out.... if you know anyone who is in the market to rent a 4 bedroom 2 bath home let me know!

I'll keep you posted on the moving progress. Moving is always a nice process because it forces you to purge all your old clutter - it's a fresh start and that is exciting!

Friday, July 9, 2010

Anna Grace - July 9

Anna Grace had a great visit at the Cardiologist Office today. Well, great meaning he was pleased with her progress - although Anna Grace cried during most of today's visit. She had to have an echo today, but she was crying so much that Dr. R wasn't able to see everything he wanted to see, but just enough to be satisfied that her heart function looked good. He looked at her chest x-ray from yesterday and was pleased with how it looked as well. Dr. R wants us to repeat the chest x-ray in 2 weeks (at Dr Y's office) to be sure that no fluid is accumulating in or around her lungs. We see Dr. R again on AUGUST 10 - a whole month from now!!!!! We've never been that long between cardiologist visits. At her next visit he wants to do another echo - if she cries and doesn't cooperate during that echo then he said we will have to schedule a "sedated echo". The sedated echo will have to be done at the hospital as an outpatient procedure - I really hope that we don't have to do that, but he has to get a good look at her heart so if that's what has to happen then that's what we'll do. In the mean time, I am just supposed to be on the lookout for any fever which could be that start of a heart infection. These heart infections are very common 2-6 weeks after open heart surgery so part of our daily routine with Anna Grace right now is to monitor her temp. At the first sign of fever then we'll need to take her in for an echo. So, overall a good visit. Thank you friends for praying over this for us :)

Thursday, July 8, 2010

Anna Grace - July 8

Well.... we just got home from a very long and tiring pediatrican's visit - no reflection on her awesome doctor - there was just a lot to do at today's visit.

She had a chest x-ray which looked good - no evidence of fluid accumulation on the lung or surrounding pleural space. Thank you JESUS! Dr. R will look at the chest x-ray tomorrow and give the final verdict, but I am pleased that Dr. Y thought it looked good.

She had a urine culture done which looked good - they will watch her urine specimin for 24 hours to be sure that there is no bacteria growth so we won't have the "offical" all clear for another 24 hours, but I am encouraged by today's results. Thank you JESUS!

She has blood drawn today and her white bllod cell count looked NORMAL which means no active infection anywhere in her body - thank you JESUS!

Whew.... Anna Grace was wore out at the end of the visit and Mommy is too. Poor little thing has been through so much that my heart really ached for her today with all the labs and tests, but I know that this is her journey and the Lord will give her what she needs to endure it - I believe that. I am so thankful that the Lord has blessed Anna Grace with such healing - the doctor today and the nurses were amazed that she had just endured OPEN HEART SURGERY not even two weeks ago. She really looks terrific :) Maybe one day ya'll will actually get to meet her?????

So, tomorrow is her cardiologist appointment and the echo which will tell us about her heart function. I am nervous and exctied about tomorrow's visit. Please join us in praying for a good report from Dr. R tomorrow about Anna Grace's little healing heart.

Thank you friends!

By the way... Zachary left today to go to the lake with his Mee-Mee. He has been cooped up in the house for the last 3 days with me and Anna Grace because it has been to hot to even play in the yard. I think he would have spontaneously combusted if we hadn't let him go to the lake today. He was so excited that at 8:00 this morning he was packing his Spiderman Backpack with clothes and toys and his Mee-Mee couldn't get here soon enough for him. When she got here he was ready to hop in the car. I am glad that he's going to get some good outside play for a few days, he is growing up so fast!

Wednesday, July 7, 2010

Anna Grace - July 7

Anna Grace didn't sleep all that great last night, but overall she acts like she is feeling better. She is suffering right now from a TERRIBLE diaper rash. All the medication she is taking is really upsetting her tummy. I am hoping to try & get it under control today by letter her go diaperless - yes I know I am brave! It promises to be a very messy day for Mommy, but I'm told that room air is the best thing for it.

I want to share with you that when I was a little girl I would call my Granny (my Dad's Mom) on the phone and talk with her weekly. She would always tell me about her postman, Mr. Brooks. Her mailbox was at her door and the postman would deliver her mail to her door and she would chat with him for a few minutes each day. She really enjoyed his "visits" each day and would always tell me how Mr. Brooks was doing and even bake him cookies each year fro Christmas. I thought it was silly at the time that she would so look forward to the mailman coming each day. But here I am - in quarantine for what seems like forever. We have a mailbox on our frontdoor and our mailman hand delivers our mail each day too. I find it is a nice distraction each day and see why my Granny looked forward to Mr. Brooks "visits" each day. Our regular mailman is on vacation this week and yesterday a maillady came to deliver our mail. I was on the sunporch with Anna Grace and the maillady said "Oh, you just had a baby. She's so cute. This is the best time of her life." Then she was on her way to finish delivering her mail. I thought about what she said yesterday - is this the best time of Anna Grace's life? Hmmmm...... it has been a trying couple of weeks, but there is no question that the Lord has blessed Anna Grace with a speedy recovery after open heart surgery. Somethign to chew on for sure....

Anyway, Anna Grace has her pediatrican's appointment tomorrow and I am going to ask him to check her urine to see if her UTI has cleared up. She had her last does of antibiotics yesterday. Please continue to pray that the antibiotics killed all the bacteria and that this is no longer an issue for her little body. Also, please pray that her echo on Friday shows good heart function and no complications. Our little one still has some healing to do. Thank you friends!

Monday, July 5, 2010

Anna Grace - July 5

Anna Grace must have been really tired last night because she slept from 11:00 pm until 6:00 am - it was quite miraculous and I have had a great day being so rested! Perhaps we can have a repeat performance tonight???

However, we started our day off with a bottle of Portagen which caused Anna Grace to vomit. I have been "experimenting" throughout the day to help her tolerate the Portagen better. I went back to the "Stage 2" nipples so that she doesn't drink quite so fast and I have taken to feeding her 3 ounces every 3 hours. She does tolerate the smaller portions better. I am also now feeding her a bottle when she is tired and I'm putting her down for a nap - as opposed to feeding her when she wakes up as I have always done. Now.... I KNOW you're not supposed to feed your baby when they're sleepy because it makes them dependant on the bottle to go to sleep, but hey, I'll try anything to help her keep the food down and this seems to help. So, I'm sticking with it - at least while she's on Portagen.

We are still working on getting her to take her medicine - she is still fighting me. I know it tastes terrible, but there really isn't another option - she has to take her medicine.

So, overall a good day and a good night last night. Thank you all for continuing to pray for Anna Grace :)

Sunday, July 4, 2010

Anna Grace - July 4

With all the excitement of open heart surgery I completley forgot that today is a holiday..... I also forgot it was Sunday..... the days all run together when you're in the hospital and I think it will take a little time for me to adjust to the "real" world again.

Anyway.... Brian rigged up Anna Grace's crib with some pillows under her crib mattress which makes her crib incline. We also made a little "nest" with a blanket like they do in the hospital to keep her from sliding down. Hopefully this will help her sleep more comfortably tonight. We'll see.

It is nice to be home, I have the best bed and pillow ever, it feels like complete luxury after sleeping on the hospital couch. We are still working on laundry here at the Bentley house.... I did manage to make it to the grocery store today AND cook dinner for our family. It was only possible because Brian was home with me today, I don't know what I'll do once he returns to work on Tuesday. Can you say... 1-800-PapaJohns?????? Anna Grace just wants to be held constantly, which I can't blame her really, but you can't do anything while holding a baby. We are also not supposed to pick her up under her arms or hold her around her chest for 6 weeks which is tough at this age - it also limits what you can put her in... no bumbo, no exersaucer, no high chair.

Anyway.... our little girl, who used to be SO GOOD about taking her medicine now fights and cries every times she has to take it - which is A LOT. She is still on quite a bit of medication (even for Anna Grace), but we are hoping to drop two of them by the end of the week. I am praying that as she adjusts to being home she will adjust to happily taking her medication like she used to. Please be praying with us about this, it is hard to force her to take her medicine and it is critical that she take it.

I have taken her temp a couple of times today and it has been normal each time, this is a good indication that there is no active infection - THANK YOU LORD!

Anna Grace also got a GOOD bath tonight for the first time since surgery. Well, I can't wash her chest just yet, but her bottom, legs, arms, and head got a good scrubbing. She seemed to enjoy it and she smells a lot better now too :)

As for the Portagen.... she is doing OK on it, although she doesn't really like the taste and it upsets her tummy.... she is drinking a little of it. Since Portagen is a fat free food it doesn't really fill her up so she is eating smaller quantities more often, which means Mommy is up during the night. Only 5 more weeks.... I am seriously counting down the days. Seriously. Just so you know, it says on the side of the can of Portagen "Portagen Powder is not designed for use as an infant formula". Poor Anna Grace :( She is a little trooper though.

So, overall today was a good day - although at one point today I just got overwhelmed with it all and started to cry. It is a big responsibility taking care of a sick baby and I question sometimes if I am up to the task. I asked the Lord today to increase my faith - clearly HE thinks I am up to the task.

Saturday, July 3, 2010

Anna Grace - July 3

We made it home last night about 7:30 pm. It was so good to be home, although our house is a wreck ... we are doing laundry and trying to put things back in order from being away. Anna Grace slept OK last night although I think it is uncomfortable for her to lay flat on her back. We ended up putting her bouncy seat (which she is really too big for) in the crib and she seemed to be more comfortable sleeping in that. I think it's going to take her a week or so to adjust to being back home. It's been a lot of changes for her over the last couple of weeks.

I know that I am so thankful to be home with my whole family under one roof. It is a blessing that I do not take for granted.

Anna Grace has a doctor appointment with the pediatrician on Thursday and one on Friday with her cardiologist to follow up. In the mean time we are just trying to keep her comfortable with Oxycodone.

It was nice not having nurses come in during the night last night for vitals, much needed rest! We are all just being lazy today and hanging out in our PJ's.

Thank you Lord for allowing us to come home after only 1 week in the hospital. We are thankful!

Also, we are thankful for all our prayer warriors out there. Please continue to pray for no heart infection for Anna Grace. The discharge paperwork said that this is common the second week following open heart surgery and that we should be on the look-out for it. Also, please continue to pray that the antibiotics Anna Grace is taking will clear her UTI completley and that we can stay out of the hospital. These next few weeks are still critical.

Friday, July 2, 2010

Anna Grace - July 2- Update #2

They decided to switch to the oral antibiotic and send us HOME today! She has to have one dose of the oral antibiotic to be sure she doesn't have a reaction to it and as long as she doesn't have a reaction then we can go home. Hoping to be home by 8:00 tonight....

Please join us in praying she can tolerate this oral antibiotic and then for traveling mercies.

We'll have our hands full for a while caring for her at home, but I'd much rather be at home doing this than at the hospital!

Anna Grace - July 2

Anna Grace had a great night last night which means that Mommy was able to get a little rest. However, since she is feeling so much better everything to her is a toy and she wants to play with it - including her IV. So this morning as she was getting her morning does if IV antibiotics she pulled her IV out. I think the doctors really wanted her to have another day of IV antibiotics before switching to oral, so I don't know if they'll decide to put another IV in or go ahead and make the switch to oral. They'll make rounds about 11:00 or so and I'll know more then. The great thing about the OV antibiotics is that they don't upset her tummy, the bad thing is that they'll have to put another IV in..... never fun in a baby.

It's sunny here today so I'm going to try to take her for a walk outside in the stroller if they'll let me. I think it will do us both good. I think Brian, Zachary and Miss B are going to try to go to the beach today.

As for the Portagen... she drinks it better at night than during the day - I think just because she's sleepy at night so she doesn't really notice the taste, but during the day I can barely get her to drinnk an ounce of it. It's going to be a long 6 weeks on this nasty stuff.

I will have her 24 hour urine specimin results about 1:00 today and will post what they show. Thank you for continuing to pray about this. This is our biggest obstacle right now.

I'll update you more later today!

Thursday, July 1, 2010

Anna Grace - July 1 - Update #2

Anna Grace's urine culture came back negative for bacteria today. That is encouraging. They will watch her urince specimen for the next 48 hours and see if anything grows. If after 48 hours nothing has grown then they will pronunce her "clean". We can't go home until she has a "clean" 48 hour specimen so this is really critical for us. She is still on the IV antibiotics which she is tolerating OK. The portagen she is still struggling with drinking, but she did gain a little weight today and so the doctors are fine. She has enjoyed her rice cereal, sweet potatoes and green beans more than ever before!

So, I took my much needed shower at the hospital and I am doing the hospital night shift again tonight. A change of plans, but I did have an almost 2 hour nap this afternoon so I am feeling about as refreshed as I can under the circumstances.

Please join us in praying that her urine specimin does not grow any bacteria - this will indicate that the antibiotics are working. Then maybe we can start talking about going home????? Her heart function looks good, the doctors have said the UTI is the only thing keeping us here.

Anna Grace - July 1

Anna Grace had a good night last night. I am so thankful. I think she has turned a corner, she is starting to act like herself again and is even smiling and cooing at me. She is eating the Portagen OK - enough for the doctors to be satisfied. I even unhooked her this morning and took her for a little stroll down the halls for about 15 minutes. She seemed to enjoy just being out of the bed for a little while. There are some pet therapy dogs doing a pet parade here today and we are really excited about seeing them. The doctors have not yet made rounds today, but I know they are planning on taking another urine sample from Anna Grace to be analyzed. This will tell us if the IV antibiotics are killing the bacertia. Please pray that it is working and that we don't have to start fresh on a new antibiotic, Lord willing.

I think Brian is going to spend the night at the hospital tonight and let me go to the townhouse. I need a shower and a good night sleep, in that order :)

So... I just wanted to throw this out there in case you might be looking for a way to minister to kids. There is a baby (about Anna Grace's age) just down the hall from us and her Mom works and can't be up here with her. The nurses are busy and don't really have the time to just sit an hold her, although they do the best they can. There was a volunteer who came up here yesterday and held this little baby for about 2 hours and this normally fussy baby quieted down and just sat in this person's arms, content and quiet and happy just to be held. So.... just so you know there are always babies at the hospital who need to just be held - if you have a couple hours of time to spare to volunteer there are no shortage of babies who want to be rocked and loved on.

So, we are thankful that the LORD has been so gracious and merciful to us. He continues to provide for us and to give us what we need exactly when we need it - from an e-mail to a hug to a scripture verse from HIS WORD - the Holy Spirit is alive and at work all around us. I can see the LORD working so clearly - so tangibly - all PRAISE and GLORY to the LORD!