2.21.10 - Night Out

Last night, Dustin and I enjoyed a wonderful evening out while my parents kept Liam overnight.  We went shopping for a little while, then went to dinner at Del Frisco's - so yummy!  After dinner, we stayed at A Loft in Frisco to get some much needed rest and relaxation.  We had a great brunch this morning at Blue Mesa before we came home to see our little man.  We really missed him!  He did great for my parents, thank goodness.  This was the second time since Liam's birth that we have been able to get away for a night and I'm hoping we can keep up the tradition every couple of months.  I think it really helps Dustin and I reconnect and get that time for just the two of us - something that seems to get lost in the daily shuffle of life.  Although, I did wake up at 3 am, worrying like I do.  I had a dream that my parents had forgotten to give Liam his medications ...of course that was not the case, as I called my mom early in the a.m. to ease my worries.  She quickly told me, "stop worrying and go back to sleep! He's fine." I know...I KNOW! 

It was harder this time to leave Liam overnight.  He is getting to be so much fun now, responding to us, laughing all the time and really showing a wonderful personality.  I miss him more and more when I am away from him, even when I am at work.  But I must say it was nice to get out of the house for a night.

Liam is continuing to do well with his feedings through the G-Tube.  He is gaining weight right on track, weighing in at 14 lbs. 14 oz this past Thursday at his Synagis shot appointment.  He has surpassed doubling his birth weight, so I am so grateful!  I really think that the G-Tube has been a blessing...I know it sounds weird to think that it would be a good thing, but honestly, it has worked well to keep him growing and it is less stressful on us to not have to worry if he is eating enough.

This past Tuesday we went to our first Amazing Little Hearts support group meeting at Medical City.  It is a group formed by parents of heart babies to offer encouragement, support and raise awareness for CHD's.  We got to see Liam's old roomie, Tucker, and his parents Dena and Trent.  We also met some really great new friends.  It was really nice to feel like a normal family...everyone there knew exactly what we were going through, had some great advice, and shared stories about their experiences.  We took Liam with us too, which I was a little hesitant about, but am glad we did.  I don't think he had ever been around a group of people that big!  (And it was only about 20 people or so!)  It was also a new experience of feeding him in the car on the way in rush hour traffic...luckily he slept and the feeding machine alarm did NOT go off. That took some planning time to figure out!

Wanted to mention one last thing before I post some pictures and call it a night.  DUstin and I watched a movie called "Something the Lord Made" this afternoon.  It is a movie about a true story of the three doctors who developed the "BT" shunt, which saved Liam's life.  It is a great movie, depicting in one scene, almost the exact scenario Dustin and I faced with Liam ...brought me to tears.  If you get a chance to rent it or catch it on HBO, it is worth watching.

 

  

  

  

  

  

  

  

  

 

2.16.10 - KU vs. MU

Funny story to share from this weekend, about an EXCEPTIONAL item I found while out bargain shopping with my mom Saturday. To give a little background info, let me start off by saying that my dad and his brother (my uncle) both went to Mizzou and are HUGE Tigers fans. I grew up with the latest Tiger attire plus an amazing assortment of stuffed Tigers, tiger blankets, you name it. Well, I’m not big into sports since my dad and brother took care of that for me growing up, but anyone who knows sports knows about the huge rivalry between Mizzou and the Kansas Jayhawks. In fact, some of my dad’s cousins went to KU, so there has always been a sort of personal rivalry among them. Two of those cousins, Sue and Randy, just happen to be visiting my parents this weekend… Let the fun begin!

So my mom and I stopped by our favorite Goodwill store (Yes, I’m thrifty and am not ashamed!) and while thumbing through the baby clothes, I happen to stumble upon a one of a kind item for around these parts….

Yes, that’s right folks, an official KU Jayhawk baby jacket…and what size was it? A perfect 6 month size for Liam. Seriously?!? What are the odds of finding such a thing?….I’m no practical joker by any means, but this was too good. As many of you know my dad keeps Liam everyday while Dustin and I are at work. Needless to say this practical joke may end up costing me my full time child care….yes, I’m serious….this was serious business. My mom even told me I’d have to deal with the consequences and she vowed not to have any part of it…if you’ve ever met Mizzou fans you’d understand….I was about to tread on scared ground here.

So of course I bought it and started scheming on how I should go about this. My dad’s cousins were coming to meet them to go out to dinner, so I stuck around until everyone was there. My plan was to have my dad get Liam ready to go home and hand him the jacket to put on him. It didn’t work out exactly as planned because they decided to leave while I was still feeding Liam, but it was still pretty funny. I simply asked my dad to hand me my purse because I wanted to show him something I got for Liam…I handed it over to him and in total dismay he actually uttered my full name for the first time since I was a kid…. I don’t think he thought it was funny….I thought it was hysterical. You might be thinking, "Where are the pictures of Liam in the jacket?"...I may be crazy, but I wasn't gonna risk it! 

Cost of jacket = $1.99, look on dad’s face = priceless.

2.11.09 - SNOW Day!!

Let it SNOW!!  We have about 4-6" of snow on the ground right now and it's not over yet.  It is so beautiful outside....I wish Liam were a bit older so he could remember this day...But, we did get some good pictures of our little bug all bundled up...(Thanks to my aunt and uncle in good ole NJ for Liam's adorable pea coat and hat!  Couldn't find anything like that in Texas...)

 

  

  

  

  

Liam continues to be doing really well on the new feeding tube.  He should be getting his button placed in about 3 weeks, beginning of March.  They decided to wait 6 weeks after surgery, instead of the 4 weeks they had originally told us.  We are up to feeding him just about 5 ounces, 6 times a day, which is right were he needs to be for his calorie intake.  

Everyday, Liam gets more and more active and responsive to everything around him.  He is a lot of fun and a really happy baby...we are SOO blessed!

2.2.10 - Follow up

Today Liam had his follow up appointment with the cardiologist to check and make sure things were rolling right along with the new tube and Liam was eating well.  Liam weighed in at just over 14 lbs. (they measure him in kilograms, and sometimes they forget to convert it for me, so I have to do it myself....not sure on the ounces) and is 2 feet tall already!  The cardiologist is still projecting at least another two months before the next surgery.  The tube is working out great and we are slowly trying to build up his calories and feedings.  Right now we do 6 feedings a day, every 3 hours from 5 am to 8 pm.   He is getting 130 ml (a little over 4 ounces) each feed right now, but we need to work up to 150 ml.  The more we can get him growing right now the better, so the larger he is for surgery.  He is growing up so fast....

Speaking of fast, the past week just whizzed by me...so much for my lofty goal of blogging twice per week.  Tomorrow we go visit a new pediatrician.  The pedi we go to right now does not specialize is Liam's type of condition, so it just wasn't the right fit for us.  Hopefully, this new pediatric group will be familiar with CHD's and will be better equipped to give us the guidance we are looking for. 

Other than these two appointments back to back this week, February looks pretty quiet on the schedule...thankfully.  We are still being paranoid parents and really do not take Liam out of the house unless it is to doctors appointments or for a visit to Mimi and Grandpas.  The flu/cold season is really rough this year, so we are trying to protect our little one as much as possible.  We did however, get to venture to church this past Sunday (leaving Liam with my parents).  It was so great to actually get out of the house and go somewhere besides work.  We so miss our church family and the "God fill up" we get when we go to church.  I have been struggling a lot lately with getting back on track spiritually becuase it looks so different now than it used to...No longer do I have hours a week to devote to a bible study or going to a women's group study.  I have fleeting minutes and moments during the day that I am offering up quick prayers and "Lord, help me" 's.  I am definately on a new path with God, and I really need to let him be the leader, because I'm just not figuring out which way I need to go...I desire and long to spend quality time with Him, but wondering where I am going to steal the time from...I know He is always there, no matter where I am though and I love Him for that. 

One last note, I bought Liam a "Nap Nanny", seen in the pictures below.  If you don't know what it is, you definately need to google it and tell your mommy friends.  It works like a charm and is definately a piece of baby furniture every mommy needs.  Love it!

1.26.10 - M.O.N.day Monday

So last night, I realized Liam is growing up…he is now fully aware of everything that is going on around him (and I am now aware that he is aware!) ….he had his first “attachment” tantrum.  Let me start by saying I have designated Monday’s as my M.O.N.day…(Mom’s Off Night), so after work I go work out and then go to bible study.  Dustin and I agreed we each need a night off once a week to do our own thing while the other watches Liam.  Well, last night was my first official night off.  We got Liam all set up for his 5 pm feeding, Dustin got fed as well, kissed them both goodbye and I was off.  Liam was a little fussy as I was walking out the door, but I just thought he was a little gassy…Well, I called to check on them on the way to bible study and I could hear Liam in a screaming fit in the background…poor Dustin.  Our conversation went something like this…

“How’s Liam doing?”

“I think you can hear that….”(Liam screaming and crying in background)

“Well, did you try…”

“YES, I tried everything you told me to do and nothing worked.  I put him down and I’m just going to let him cry it out.”

“Well why don’t you…”

“I’ve tried everything you told me to do” 

Silence (besides the screaming in background)…..

“Do you need me to come home? I can turn around”

more silence…..

“Hello?”

more silence…..

“I think you’re doing great, you can handle it.”

And finally….“What time will you be home?”

long sigh….

We hung up and I quickly called my mommy friends if they had experienced this so early in their children.  Oh yes, my friend, totally normal they told me.  Huh…Who knew?

So when I arrived home an hour and ½ later, Liam is STILL crying.  Uh oh. Dustin didn’t have a very warm welcome for me, as one can imagine.  I came in, scooped Liam up, bounced him for a minute or so and he was out like a light….Hmmmm.  I think he missed me….Honestly, it made me feel REALLY good as a mom, however I feel bad Dustin had to suffer.  Someday it will be the other way around I’m sure. 

I never realized how young babies can first become aware of their surroundings so intently.  I thought we had a least another couple months before Liam had this kind of reaction. 

Other than the attachment issues (LOL) Liam is doing great.  His new tube is working out just fine, but I can’t wait to get the button put on.  Right now, the long rubber tube projecting out of him is a little intimidating at times, especially when he gets active and starts grabbing and pulling at everything in sight!  Another 3 weeks…we can do it.

As far as his next surgery goes, no date has been set yet.  The cardiologist thinks it will be when Liam is about 7 months old, depending on a number of different factors.  Liam will be 4 months old next week!  We have two appointments next week, Tuesday at the cardiologist and then Wednesday will be his 4 month well check with a new pediatrician we are trying out.  His next check on the vocal chords won’t be until the first of March, and from there we will decide when we will do another swallow study.  Whew, lots going on with him. 

P.S.  My New Year’s resolution is to do at least 3 blog post a week, so PLEASE hold me accountable!!  If you see I haven’t posted in awhile, give me a shout tpjohnson80@hotmail.com =)  We love all of you friends and family and want to thank you for you love, support and prayers!  We are ALWAYS in need of them!

1.20.10 - Home Sweet Home!

We are finally home! Another night at the hospital went really well. Liam slept the whole night through so thankfully I was able to get a couple hours of sleep in myself. The new tube is working out great - no problems so far. The doc came in about 7:30 this morning and told us we could go, so we were home by about 9:00 am. Liam is a little champ - He seems so much happier with this tube than the NG tube. It is a little more difficult to use at first, but in 4 weeks he will get the button on and that should make things a little smoother.

This morning I was thinking about the Lord's provision. I used to think of it mainly in terms of financial provision, because that seemed to be what we always needed...However, thinking over the last few days I have realized that, of course, God is bigger than that. His provision goes far beyond what you or I ever thought it could mean. For us, it has been the wonderful doctors and surgeons that the Lord has placed on our path. It has been the supportive friends, family and workplaces that we have around us. It is all the things that the Lord brings together for our benefit and to make good out of our situation...The Lord's provision means ALL the blessings in every form he has provided us. He never stops providing...He has a limitless and unending supply for our needs, joyfully and faithfully meeting them daily...and will for any of yours too! Thank you Lord, for your endless supply!

1.19.10 - Pictures!

Liam handled his feeding great. We will feed him again at around 12:30 for his second feeding. He seems so much happier even right now without the NG tube. He has been awake a lot today - but its hard to keep him occupied when you can't move him around a lot still. He is very tender and moving him a lot makes him mad. So I requested to have a mobile put up in his crib so at least he could have something to look at. I've also been reading him books and we've been having photo shoots all morning, which he actually seems to enjoy now =)

Here are some more pictures from today of our little Liam...

 

 

1.19.10 - A New Day...

Liam had a pretty good night. He slept most of the time and only woke up a few times crying but the sugar water on the pacifier really did it's job and he would go right back to sleep. We are already beginning to feed him through his new tube at the same amount he was getting before. The GI said if he can tolerate 3 to 4 feedings we can go home! Hopefully tonight...

We are able to use all our equipment we already have which is great. The new tube seems to be a lot better and Liam looks like a totally different baby without the tube on his face. I'll try to post some pictures later on.

1.18.10 - Recovering nicely...

Liam is out of surgery and is recovering well in our room here. The surgery went well and even fixed a hernia that we were unaware he had. He is sleeping well right now and only gets fussy when you move him. The tube looks good and we will get the actual button one in about 4 weeks (right now he just has a longer tube sticking out).

This surgery is harder than I thought. Liam is more aware and I can tell when his cries mean he is in pain. However, the hospital is a humbling place and really is a reminder we have MUCH to be thankful for. I will be staying the night here with Liam while he's here. I'll post more soon....thanks for everyones prayers.

1.18.10 - In progress...

Liam just went back to the OR. The surgeon did make some changes and instead of doing the surgery labroscopically (sp?) he will be making a small incision and will place a different type of tube initially. This is to keep his shunt working properly, because the labroscopic approach causes a lot of pressure in his chest cavity and the surgeon said this could cause a backflow in his shunt. The surgery shouldn't take any longer though so hopefully he'll be out soon. Liam was so good this morning, very smiley and happy. We'll keep everyone posted when he gets out...