Sweet Baby

No this time I am not referring to Emma but 8 month old baby Josiah who went to be with Jesus. He is a baby that was in the PCICU while Emma with there & he lost his battle with HLHS. Although we didn't know Josiah or his family personally we followed their story & our hearts ache for them right now. Please keep the Wilson family in your prayers as they deal with this great loss. You can read more of his story "The Wilson Heart".

14 months old

Actually I am a bit behind in posting so she's 14.5 months now. I have been a bit busy getting caught up on things around her & trying to take some pics of Emma.

Emma is doing great. She is very active, not walking yet but pulling up & cruising around on everything. She seems to pick up a new word every day or so. The new words from this past week were: puppy, out, green beans, Spencer (or some variation of his name) & she is saying please & thank you pretty good too, sometimes without us reminding her. We also discovered over the weekend she is cutting another tooth on the top left in the front.

Emma still isn't eating as much solids as we would like but she is slowly getting there. She loves green beans & I mean real ones but she will eat the baby food ones too. She still has a lot of issues with textures of most table foods but at least she will try most anything she just doesn't want to eat. Luckily that Pediasure if filling in those gaps.

She really loves all her riding toys & wagon. She asks Chris every night when he gets home to pull her around the house in the wagon or to be pushed on in her car or now her new Elmo Flying Plane (from Grammy & PawPaw). He has created a little monster but I think he enjoys it too. She still loves her books, shape sorters, Little People playsets & stuffed animals (she wrestles with them, not real sure where she learned that but its pretty funny).

Emma with Little People, Noah.

Emma on her new Elmo Flying Plane & a messy living room filled with toys.

Look at my chapped mouth from all the drooling & paci sucking from cutting my new teeth. Its all better now, thanks to Vaseline.

YAY Jamma time!!!

A wagon ride with cousin Morgan

EENT

Today Emma had a follow up visit with our local eent & it turns out she has reflux & laryngomalacia (soft layrnx) . At first when he heard Emma's symptoms, he thought it was probably vocal paralysis (he says that is very common after cardio surgery, something about a nerve that gets hit during surgery that can cause paralysis) & I told him that sounded familiar but the drs at MUSC quickly ruled that one out. So after discussing things a little further, he decided to scope her so he could see for himself & he found reflux & larynogmalacia. Her larynx & vocal cords are 3 times the size they should be which is odd for a child of her age (it usually goes away no later than 12 months) & he isn't sure either why she never showed any signs of it before her surgery in Dec.

So he prescribed Prevacid & took her off the Zantac. He says Prevacid works much better. I of course told him how much she hated Prevacid from past usage & he gave her dissolvable flavored tablets. He says kids love them & say they taste like candy or a sweet treat. I of course haven't given her any yet so we will see tomorrow how it goes.

Hand Surgery

Emma's hand surgery has been scheduled for Feb 8 @ 8am at a local hospital. I think she will be his first one of the day, especially since she needs to be there at 6am. We of course were not expecting it to be scheduled so soon, Dr. G thought it would be mid-late Feb but this date is fine with us too. The sooner she has this surgery to sooner we can all move on & hopefully stay out of the OR. We have definitely had our share of surgeries with Emma.

Follow-ups

Emma had several of them this week & they went great. Monday she was back in therapy after having two weeks off due to her therapist being out of the office & boy did we have a lot to show Leslie. Emma was pulling up on everything, standing & playing + cruising on all the furniture. Leslie even got Emma to crawl all the way down the hall & back + walk behind the push toy several times. Emma also is transitioning from one piece of furniture to another so it will not be long before our little one is walking. Emma has been trying for several weeks to stand up on her own in the middle of the floor but she hasn't quite figured out how to do it yet.

Wednesday she went to the pedi for some shots she was behind on & she weighs 18 lbs, 7 oz which we were just thrilled about. That means she has gained 1.5 lbs since she left the hospital, Dec 10, amazing. I guess that Pediasure & her fixed heart are really making a huge difference for Emma. Speaking of Pediasure, she is completely off bottles now & is only drinking from her cup now. I have been weening her off since we got home the hospital & offering her Pediasure in her cup at mealtime which worked like a charm. She had her last bottle Thursday morning & there is no turning back. She doesn't seem to miss them at all (she really started to love them after all this time) & just enhales her Pediasure. Its higher in calories than the formula we were mixing & it will help her put on the pounds faster than whole milk. Plus Emma still isn't eating as much solids as she should so Pediasure also fills in those nutritional gaps. MUSC was the ones who originally suggested it to us before we left & Emma's pedi, Dr. K thought it was a good idea too.

Thursday Emma had a follow up with her cardiologist & that visit went great too. Dr. O said he could tell Emma had gained weight as soon as he saw her without even looking at her chart to see how much she had gained. He of course was thrilled. He took her off her Lasix & she doesn't have to go back for 6 months, can you believe that. YAY!!!

The last follow-up appointment was on Friday with the hand surgeon. Many of you may not know but Emma also has a congential hand defect. On her left hand, she actually has 5 fingers, instead of four fingers & a thumb. It sits up higher & is thin like a finger & it has 3 joints instead of just two. Now she currently using it just like a thumb & doesn't seem to bother her too much except when she trys to pick up larger objects or balls with her left hand. I have been teaching her for a long time if she seems to be struggling to "use both hands" & she knows what that means & will do just that. Now that her heart is fixed we can take care of her hand & she will no longer have to do that.

So Dr. G is going to spin the finger around to move it into position more like a thumb, add additional skin to her hand so she can spread it like a thumb then take a tendon from one of her middle fingers & move it to the thumb so it can be aposable. It sounds like a lot but Dr. G says it a very common surgery & should only take 1-2 hours total. He said it may take longer to actually get her prepped, sleep & to put her cast on at the end then to do the surgery. She will only have to wear the cast for 3 weeks & then that should be all the surgeries for Emma, or at least that is all we know about. We hate to put her through another one but at least its out-patient & he really wants to do it before she turns 2 so we will probably schedule it for mid to late Feb.

Sharing My Husbands Thoughts

So last night Chris told me about this belated New Years email he sent out to some friends & he got several responses saying it made them cry (women of course). So I was a bit intriged & wanted to read it too. It is most likely a side of Chris that his friends have not seen or even known of, thats to bad for them. Here is the words from my lovely husband, unedited.

For those of you that truly know me, you know that I never make New Year’s resolutions. But I had an insightful event with Emma a few days ago that helped me arrive at an idea/concept that I want to run with this year. Let’s call it a “ Mission ” rather than a resolution!!

A few nights ago, Emma starting crying pretty loudly around 1:30am. It was Angie’s night to take care of Emma but I decided to take care of her this time since I knew Angie was physically exhausted. For those of you that have (or have had) babies you know that there are only a handful of things that could be wrong at 1:30 in the morning. They’re pretty much limited to a dirty diaper, lost pacifier, hunger, or simply needing attention. So I walk down the hallway to her room, open her door, and find her standing up in her crib holding the rail with one hand and reaching for me with the other. I changed her diaper first to make sure the obvious was taken care of. Then I decided to take her downstairs and give her a bottle to scratch another one off the list.
For all accounts, it was pitch black downstairs when I was feeding her except for the miniscule amount of light that was sneaking in through the blinds. It was enough light though to let me see her smiling from ear to ear after she nearly finished the entire bottle!! Not a word was said or sound was made but her smile told me everything I needed to know. Despite all that she has been through this past year….at this particular moment, this small ripple of time, her world was right! She had clean garments, a full belly, and the warm arms of someone who loved her more than anything in the world wrapped tightly around her.

And that’s where I got the idea for my 2010 Mission ……to live in the present. The past describes you, the future predicts you, but the present defines you. Or said another way, the past is unchangeable, the future is unstoppable, but the present is moldable, it’s flexible, it’s transformable. You can choose what you do next and how you react to it RIGHT NOW. Does this mean I’m going to just “wing it” this year?? Of course not! I’m going to plan where it makes sense to plan and forgive (or forget) the past where it makes sense to forgive (or forget). But the bulk of my effort and energy this year needs to be focused on living in the present.

I don’t know what the future holds for Emma but I do know that right now her world is right. Her heart is looking great, her feedings are fantastic, she is developing exactly as she should be, and her parents arms are never more than a few feet or few cries away.

So for 2010, I wish you and yours a healthy and prosperous New Year! May your garments be clean. May your bellies be full. May you have the arms of someone who loves you wrapped tightly around you or yours around them!

A Sad Beginning

I just saw on one of the blogs I follow that another heart baby lost his battle with HLHS & it just breaks my heart. Of course I don't even know this family or the precious baby boy Gabe but I still feel the pain for his dear family. They will be starting 2010 without their 4 month old baby boy & are in need of some strength from God & our prayers.