Discharge Day!

Ethan had a good night, got lots of sleep, despite having to be back on oxygen all night (started at .5L and went down to .3L around 4am). He woke up full of energy and ready to play at 6am, which is early for him. I, on the other hand, tossed and turned all night and never really got any real sleep. We played and watched Disney channel and ate breakfast together then he went down for a nap at 8:30 (usually the time he'd just be getting up) and I'm just going to let him sleep as long as he can since his schedule's so off right now.

Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!

Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.

Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.

We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!

Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!

Another update on Mimi

So much has happened since my last update. Ethan, Dan and I went over Friday night to spend time with my grandma and take her some dinner. Mimi (my mom) didn't get discharged until lunch time on Sunday. She's doing a little better now that she's back home, but still has a drainage tube that she should be having removed tomorrow (Thursday). My grandma left yesterday (Tuesday) and is now back home in Chattanooga, TN. Thank you to everyone who has been lifting my mom up in prayers. With her mono and then this appendectomy - her recovery is slower than normal but we're praying that this surgery will help her body to be able to allow her body to heal faster from the mono now.

Update on Mimi

Thank you to anyone out there that read my last post about my mom (Mimi). She's still hospitalized and having to work on getting up and walking around before her doc will let her leave. We were hoping and praying for a Friday discharge (today) but now they're saying it will probably be tomorrow. So please, everyone, be praying that the docs will either change their mind and let her go today or else let her go home tomorrow at the latest. Anyone who's ever stayed in a hospital knows that it's hard to get any decent amount of sleep and also the longer you're there, the more chance you have of catching some kind of illness going around the hospital.

Urgent Prayer Request for Mimi

Ethan's doing well right now, but his Mimi (Julie's mom) is not. Mimi (real name Rhonda) had sharp stomach pains all day yesterday so last night around 5pm Pop-Pop (real name Mike/Julie's dad) took her to one of the nearby satellite hospitals. They did a cat scan and determined her appendix was about to rupture. So they rushed her in an ambulance, across town to the main hospital campus (WakeMed - same campus we take Ethan for his cardiology appointments for those of you out of town folks). Around 3am they did an appendectomy surgery and during the surgery her appendix did rupture but everything was successfully removed.

Please pray for Mimi to get lots of rest today and to be able to come home by the weekend since she's got her mom (Julie's grandma/Ethan's great-grandma) in town until Tuesday from Chattanooga, TN. Also pray for Pop-Pop as he is sleep deprived today from the overnight surgery. He went home to get a short nap and change of clothes and get some work done and now he's headed back to the hospital for the day.

Oh, and in other news - Ethan's going to have another little cousin! Aunt Jessica and Uncle Brandon found out on Monday that they're having a girl! So we're super excited for them!

Baby Gracie update

Thank you to everyone who has been praying for baby Gracie after hearing about it on my site (or theirs). It is with a heavy heart to post that Gracie went home to be with the Lord at 8:08 this morning. She was a strong little fighter for the 7 months here on Earth and God finally decided to call her home to heal her heart for eternity. Please continue to lift up her parents, Todd & Amanda, as well as her 3 year old brother, Haddon at this time.

Update on Baby Gracie

Baby Gracie came through her Glenn surgery and is in recovery in the PICU at Duke. The first 24-48 hours are always the most critical for heart patients so please continue to keep Gracie and her parents, Todd & Amanda in your prayers. Even though the 2nd heart surgery is now behind them, they still have quite an upward hill to climb before she's completely stable and out of the woods. Nothing ever seems to be easy or by the books for the heart babies I've found. Keep checking their blog (www.caringbridge.org/visit/graciejeanlockyer) for more detailed updates.

As for our family, Dan just left town for work and won't be back until Friday night so I just hope to not go too stir-crazy being home alone with Ethan and the dog all day. Fortunately, I got to spend most of the day out of the house with meetings at church so my mom got to watch Ethan this morning and Dan's mom watched him tonight. Tomorrow is a slow day with not much planned but our neighbor's little boy across the street just got a drum set and he spent all afternoon (the 3+ hours I was actually home today) playing with his new drums and driving the dog crazy so we may have to get out just to escape the noise tomorrow if the drum practice continues! LOL

As always, thanks for checking in on us and for lifting little Gracie up in prayer!

Urgent Prayer Request

Remember Baby Gracie that I mentioned a few days ago? Well, her blog was just update last night after I went to bed, saying that since she's doing pretty well right now and the OR's available, they feel that she'd have a better chance of survival from her Glenn surgery (same surgery Ethan had back in January) if they go ahead and do it at 6:30 this morning! Please join me in prayer for her and her family as they await the outcome of the surgery, which most likely won't be over until at least noon. I've linked to her blog on the side of this page, along with all the other heart babies I've found so you can follow along, or you can just visit the site directly from this link: www.caringbridge.org/visit/graciejeanlockyer.

Special prayer request

This is a somewhat urgent special prayer request for another HLHS baby I recently learned about. Her name is Gracie Jean Lockyer. She is 6 months old and awaiting her 2nd heart surgery - the Glenn. She's had a lot of complications so far in her little life and after her parents met with her doctors today, they said that in her current condition, she only has a 10% chance of surviving from the surgery. To put that in perspective, we were told with Ethan that he had a 75-85% survival rate with his Glenn surgery because he was in optimal health at the time. The Glenn surgery has been scheduled for next Thursday, Oct. 2. Given all this news, please pray for her parents, Todd & Amanda as they are faced with the bleak reality that if God chooses not to work a miracle (which we all know He can do and has already done multiple times in Gracie's life after having coded multiple times now) this time around, they may only have 8 days left with their little girl. Please join me and invite everyone you know to join in praying for this sweet little heart baby! To learn more, please visit their blog at http://www.caringbridge.org/visit/graciejeanlockyer

1 year checkup

Dan and I took Ethan for his 1 year checkup on Monday morning (yes, I know he'll be 13 months tomorrow but that was the only appointment they had when I called the week of his birthday last month). Everything looked good! They said he passed his developmental milestones (which is encouraging since not all heart babies are on track developmentally due to their condition plus extended time spent cooped up in a hospital bed). He weighed in at 21 lb. 12 3/4 oz. He is in the 50% range for head circumference and weight and in the 90% range for length! What a tall boy we've got!

Ethan had his finger pricked to test his blood for lead levels and also anemia (standard 12mo. checkup test - nothing related to his heart defect). All those levels came back normal! Then he had to get 4 vaccines, one of which (MMR) the doc said could cause a fever spike of 103 in about 10 days so we'll be watching out for that. So far he seems to be doing fine from the shots, although he did wak up about 3 hours early yesterday morning (around 5am) whining and crying a little so I gave him some extended cuddle time and a little Tylenol and he was able to settle back down and nap from 7-9am, until it was time for us to leave to go to church for MOPS.
Speaking of MOPS (Mothers Of Preschoolers), I'm excited about getting together bi-monthly with other moms of young kids (really birth-kindergarten age) and build some new friendships and let Ethan get a chance to socialize in the nursery. Hopefully I'll be able to attend all fall/winter without having to keep him out of the nursery too much.

I really debated about whether or not to get involved since we're getting ready to hit cold/flu/RSV season in a few months. Even though Ethan's been staying so healthy and doesn't have his final surgery for a few more years, we still have to be extra cautious during the cold/flu and especially RSV season. Ethan's pediatrician wants us to get the RSV antibody shots again this year but we just don't think we're going to be able to afford it. Based on our most recent medical bills from Ethan's hospital for his 2nd surgery and the bills for the RSV shots, Ethan's surgery and hospital stay was a lot cheaper than the shots - INSANE! I don't like to talk about finances on here much (although it is a real part of life and we do help teach a finance course at our church) so I won't say anything else about this issue. Just please pray for wisdom for us as we decide what to do. The pediatrician said that he was even surprised at our out of pocket costs (even with the help of insurance) and said that they'd talk to their insurance rep to make sure that everythings getting filed properly so hopefully it won't cost as much this time. But even if we took insurance out of the picture, the cost of the RSV shots was still much higher than the surgery/hospital stay!

Well enough rambling for today. Thanks for checking in on us and continuing to think about and pray for us. We continue to praise God daily for keeping Ethan's heart functioning so well and for all the days He's given us with our sweet little boy. We go back to the cardiologist in about 2 weeks for another checkup and we just pray the docs continue to be amazed at Ethan's good health. Well I hear Ethan screaming in the other room so I better go check on him!

Minor Procedure

Please keep Ethan (and us) in your prayers as we go to UNC tomorrow morning for Ethan's circumcision. Obviously, this was not a priority at the time of his birth and we've just been waiting to get past his 2nd surgery. Now that several months have passed and the pediatric urologist has time in his schedule, we can finally get the procedure done. The appointment's from 8:30am-10:00am but we have to check in at 7am (meaning we have to leave our house at 6am - yuck!) This is certainly a minor thing compared to all he's already been through, but your prayers are still appreciated since any time anesthesia's involved there's always risks associated with it. Assuming all goes well and he wakes up from anesthesia without any problem, we should be headed home shortly after the procedure's over. We'll update again tomorrow night with results. Thanks for checking in on us!

Tricia's Discharge!

Our friend's blog, Nate & Tricia, just posted that Tricia's finally getting discharged today from Duke Hospital! She'll still be an outpatient for a few more weeks for some therapy and treatment. By the time that's over, their sweet little girl, Gwyneth Rose should be about up to an acceptable weight and also be discharged! Please continue to keep this family in your prayers with all the adjustments they'll be going through! Thanks.

First tooth!

Our suspicions were correct, Ethan cut his first tooth on Saturday! I thought I saw it starting to break through but once he grabbed a hold of my finger and jammed it in his mouth and bit down, I felt it and knew for sure! We keep trying to get a good look at it but everytime we try to open his mouth, he sticks out his tongue so we have a hard time seeing it.

In other news, Dan's out of town for work all week. This is his first time to be away since Ethan was born. Fortunately, his company only makes him do overnight travel once a year (for this conference) so this will not be a common occurence. I'm having lots of fun getting Ethan all to my self this week, yet, at the same time trying not to kill our dog (a mini dachsund) since she doesn't have Dan around to play with her at night!

I'm doing my best to stay busy and get out of the house some this week while Dan's gone before I go stir-crazy! Tomorrow, we go over to UNC Hospital to visit one of our heart buddies - Shelby. She's the little girl that we saw a couple of weeks ago for her first birthday party. You can keep her in your prayers as she is over there to get her tear ducts unblocked (eye surgery). I'll give an update when I have one.

Well thanks as always for checking in on us and our crazy life! We are so blessed to have so many people who care about us and are praying for us. God has been so good to us through all your prayers and has kept Ethan as healthy (heart and otherwise) as possible and we continue to praise God daily for his goodness to us. To God be all the Glory!

Tricia's new lungs!

A few weeks ago I posted a message entitled "For Tricia". Tricia is a special lady about my age at Duke that has Cystic Fibrosis (CF) and has been awaiting a double lung transplant for over 3 months, ever since she gave birth very prematurely (24 weeks gestation) to her little girl Gwyneth. Well tonight is the big night that Tricia is going to receive her new set of lungs. What an answer to prayer for this family! It is also her husband's birthday today so that makes today even more special for them all. Please keep this family in your prayers, Tricia went into surgery around 7:30pm and the surgery is expected to last about 7-9 hours. Also be in prayer for the donor family, because they are grieving the loss of their loved one in order or Tricia to get her new set of lungs. For more information on this family, visit their blog: http://www.cfhusband.blogspot.com/.

Prayer for Annabelle's family

Please be in prayer for Annabelle's family. This morning Annabelle went home to be with the Lord. I can't even begin to imagine what it is like to lose a child and I know they are hurting but are also rejoicing in the fact that they will again one day see their sweet baby girl when they get to Heaven.

Julianne's surgery update

Julianne's surgery is complete and things are looking better for her. The surgeon said that her poor ventricular heart function did not look any worse (that's been her main delay in having this surgery), in fact it might actually look a little better. He also told Julianne's parents that they left a permanent pacing wire in her heart in case they ever need to hook up a pacemaker, this allows them to do so without having to open her chest again!

I know this family appreciates your prayers, and could still use them because the first 24 hours post-op are very critical. Pray that she has minimal swelling, her upper body does well adjusting to the change in pressures with the blood being re-routed, and that the rest of her recovery goes smoothly so their family can get out of the hospital soon and head back home to New Orleans.

Pray for Julianne

Julianne's surgery has been rescheduled for tomorrow, Thursday, 3-13-08. Praise the Lord that the doctors feel that Julianne is finally healthy and stable enough to have this surgery! Pray that all goes well and that the surgery will actually be able to take place this time so that the recovery process can begin and that she and her parents can go back home soon (the surgery's in Boston but they live in New Orleans). Also, of course, pray for the surgeons and everyone involved in the surgery that all will go smoothly and that they will have wisdom and skill and precision as they perform the surgery. I'll update again after surgery or if any changes occur beforehand. You can also visit their blog (see link on right) to see for yourself how she's doing. Thanks for your prayers for this other HLHS family!

"For Tricia"

As I've mentioned before, I've really enjoyed getting to know other families who have also had extended hospital stays with their children. So far, I've only mentioned other "heart baby" families, but another family that I follow daily (well more realistically, several times a day!) is Nate, Tricia & Gwyneth. Tricia has Cystic Fibrosis and is in the hospital awaiting a double-lung transplant after having an emergency c-section 2 months ago to give birth to little Gwyneth at 24 weeks gestation. You can read more details about their story by visiting their website (see link on right). On Nate's website, he has encouraged all the blogging moms to make a list for Tricia about what they may often take for granted with their own kids and what they can't wait for Tricia to get to experience with her daughter Gwyneth once they are all back home together.

So Tricia and Nate, here's my list (my son's only 7 months TODAY so I'm still learning about motherhood!). I try to not take any of these things for granted because of all we've been through but also, knowing that you're going through even more and other heart babies we've known have also been through alot more than we've experienced too.

I can't wait for you to experience...
- feeding her a bottle for the first time
- finally coming home from the hospital (we were in the hospital for 28 days so I can only imagine the long wait you're experiencing)
- her baby dedication at church
- sleeping in the same room, getting woken up at every little peep she makes
- the first time she sleeps through the night (but you don't because you wonder if she's ok because she hasn't woken up at all)
- her first bath and all the water you get to clean up afterwards from all her splashing
- watching the grandparents enjoy spending time with her, making her laugh, get re-acquainted with diaper changes, bottle feeding, etc.
- hearing her laugh for the first time
- playing peek-a-boo
- being there to hug her and comfort her when she cries (especially after getting shots)
- eating baby food for the first time and watching the faces she makes
- having her spill your entire glass of ice cold water on both of you as you're out to eat (happened twice at the same meal last weekend!) then throwing up all over you as you walk to the car - all I could do was laugh - it was almost too crazy to be true, but at least I could be thankful that I had my baby in my life in the first place!
- family snuggle time on the couch (pets included!)
- shopping for bigger sized clothes and diapers because that means your baby is growing!
- watching her be entertained by the dog that's running all around the house
- watching her learn to sit up on her own
- all those toothless grins at you
- having "staring contests" & having her win every time because she can't take her eyes off you!
- having people comment on what a cute baby you have, but then cringing when they touch her hands and she immediately sticks them in her mouth - who knows what germs she just picked up and praying she doesn't get sick from it!
- watching her put EVERYTHING in her mouth and cringing about what germs she must be picking up (after been in the hospital and having to wash hands/use hand sanitizer so frequently, we quickly became germaphobes for the first time in our lives!)
- reading Bible stories and saying prayers together before bedtime

This list could go on and on but these are just a few of my favorites that I've experienced so far! Praise God for every moment we've had with our little guy and for all the many more we have yet to experience as we watch him grow - children really are a gift from God!

- and one more I just thought of... creating your own list once you have your own experiences!

7 months old!

"They grow up so fast" is the phrase everyone says about kids, and boy is it true! I was even told this phrase yesterday as I was leaving the pediatrician office by a lady leaving the same time as me (no kids with her), she opened the office door for me as I carried Ethan out to the car. It's hard to believe that Ethan is officially 7 months old today! So much has happened, yet it still seems like just yesterday that I first held him in my arms.

Today also makes 7 weeks since Ethan's 2nd heart surgery - the Glenn. One more week and we can pick him up under the arms (not like I'm counting down or anything!). After visiting the pediatrician and hearing Ethan now weighs over 18 pounds, no wonder why I feel like I'm getting a workout by holding him and picking him up so much every day! We still have our home scale that we used to use for weekly weigh-ins but since we don't have to do it anymore, we have boxed it up and it's not worth getting back out so I was curious to see how much weight he'd gained since his 6 month checkup.

By the way, speaking of picking Ethan up so much, Dan hurt his arm/elbow about a week and a half ago from falling off his road bike and hasn't been able to pick him up very much. Dan doesn't think his arm is broken so he hasn't gone to the doctor yet, and it started feeling better towards the end of last week, but now it's hurting pretty bad again so he hopes to see the doctor about it today. You can keep him in your prayers that his arm gets better soon so he can have full use of it again (and get to hold Ethan more - he misses that!)

Update on Julianne

Julianne had her MRI of her head and heart today. I won't go into all the details, you can read that on her blog. But long story short, the doctors have decided it is wisest to postpone surgery once again because the head MRI showed a stroke in her brain sometime in the last 2 weeks. Please continue to keep this family in your prayers. I'll let you know when they decide to reschedule the surgery for her heart.

Please Pray for Julianne

Having never known anyone with a heart defect, I have found "comfort" and friendship in getting to know several other families who also have babies with heart defects, especially Ethan's same heart defect - HLHS.

Tonight, I come to you requesting extra prayer for another HLHS family from New Orleans - Kent & Jessica Caperton and their baby Julianne (see link on the right to their blog). Julianne is about 6 weeks younger than Ethan and was supposed to have her second heart surgery on Feb. 21 in Boston, MA, but when they arrived a few days prior for pre-op and Julianne's heart cath, the doctors learned that she's having some poor heart function. Therefore, they have postponed her surgery until this Thursday, March 6th. I won't go into all the details here, you can read more on their blog, but long story short, this surgery will be more risky than usual because of her poor heart function so they are requesting as many prayers as possible. They have even requested/given permission for everyone reading their blog to pass the word along to be praying and even post a link on your own blog/website if you have one so we can get as many people praying as possible.

Please join me in prayer for Julianne and her family as her surgery quickly approaches. Pray for extra wisdom and skill for her doctors and surgeons and also peace for Jessica & Kent (Julianne's parents) as they await the results of the MRI and surgery. She will be having an MRI of her heart and head tomorrow to learn more about the poor function then surgery will be the next day. This family has already been so much with this little girl and this week seems to have been very difficult for them. They were very thoughtful to post a blog entry about Ethan last month when he had his 2nd surgery so now it's time for us to return the favor for them!