3.25.10 - Answered Prayer!!!

Liam's swallow study was great! God came through big time for us and we can start feeding Liam baby food by mouth - Praise God! He still is unable to do liquids, but at least we can start something by mouth now. Thank you all for all your prayers!! And thank God for being awesome!! I'll post more details tonight, gotta get back to work!

3.23.10 - Much to do about everything!

Ok, so I can not watch our slideshows without crying...I think I've seen them both about a hundred times and my eyes are never dry...Dustin does a great job at putting them together!

So lots has gone on since my last post (seeing that it was two weeks ago!). Let's start with last weekend! My aunt Lori, cousin Lindsey and her son Lukas came in town last weekend and we had a great time! Lukas is exactly 3 months older than Liam, so almost 9 months and what a cutie he is - It is so nice to get a preview of what's in store for us with Liam! Friday was so nice here, 75 and sunny, so we took the kids out to the Botanical Gardens in Ft. Worth. We had a great time, although it was a little difficult feeding Liam on the go like that, and interesting enough to fix up his feeding machine in the trunk of my car...but it worked out just fine and Liam got to munch while we walked around and enjoyed the beautiful weather. Saturday was much different weather-wise, with a freak snowstorm hitting Texas in the middle of March, so we stayed inside, rested and had the fam over for dinner. They had to go home Sunday and thank God for Dustin driving them to the airport, otherwise I don't think they would have made it! Someone spun out on the icy bridge in front of them and Dustin drove them through safely. And I am glad I was at home with Liam because he threw up his whole feeding on me....Don't know what Dustin or I would have done if our roles had been reversed that morning!

Monday it was back to work and my dad took Liam to get his monthly Synagis shot for protection against RSV. They took his oxygen sats and they were still kinda low, steady at 68, with a high reading of 72. This was a little concerning for me because he should be at around 75-80. But this is what is expected to happen before his next surgery as well. I called the cardiologist to let them know his sats and also about the feeding issue with Liam throwing up (he did twice on Sunday - his whole feedings). Dr. Verma didn't sound too concerned, but more to the point that this is what is expected as it gets closer to surgery time and Liam is possibly growing out of his shunt. He said he would talk to the surgeon, Dr. Mendloff, to see what he thinks about Liam's progress and get back to me.

So today Dr. Verma called me back and said that Dr. Mendeloff is really pleased with Liam's growth and weight gain that he thinks he is ready for surgery soon. We are going to schedule the heart cath and possibly the surgery for most likely next month. This is great news, but also a little scary as I was hoping we had a little more time on our side. But, I also want to get it over and done with and have Liam's heart mended! I am not sure what this procedure or surgery is called...but as soon as I find out, I'll post more info about it on here.

Whew...this is all happening faster than I thought, but I'm glad to get it going sooner than later.

Oh yes, and we have another swallow study scheduled for this Thursday at 10:00 am. Liam has not had one since the end of December, so I am really praying this time they will tell us he can start eating by mouth. I know many of our friends and family have been continually praying for Liam and we are so very thankful. I would like to ask that we pray a bold prayer for this area specifically - for his feeding deficiencies to be totally healed and for God to move this mountain out of our way! I know God and I know He can do this for us...I'm believing Him for it!!

“In My Arms” Updated

With the Texas weather being 36’ today in the middle of March i decided to make good use of my time rather than cleaning i created an updated slideshow. I just want to say we really appreciate the support we have been getting from our friends and family. Enjoy the video!

 

3.10.10 - Hard to believe...

Oh what a LONG week it has been so far! I forget when it comes to babies, too much stimulation can be a bad thing. I think I overdid it yesterday with Liam with his back to back appointments. Everything, thankfully, went really well, we were both just exhausted by days end!

Monday, we had his appointment with the ENT to re-check his right vocal chord. Not a good report, it is still not moving and the ENT thinks it is permanently paralyzed. He said by this point he would expect some kind of movement if it were just a temporary injury. My motherly instincts prepared me for it though, as I had a feeling we were going to get that report. We knew before his surgery that vocal chord damage was a very common risk associated with heart surgery. The ENT did say though that most times, children with this issue are able to at least eat solid foods by mouth, even if he has to take liquids for awhile by tube. I guess we won’t really know how extensively this will affect him until he starts hitting milestones related to eating and vocal use. I am planning on scheduling another swallow study for the end of March, and I am hopeful that they can at least tell us that we can start feeding Liam solid food…but we shall see.

Yesterday was a marathon of a day at Medical City. His first appointment at 1:00 was to get his tube changed out to the MIC-Key button. We had to go to the Children’s Hospital at Medical City to meet the surgeon to have him change it out. It was a fairly quick procedure – 15 minutes, even though the doctor didn’t arrive until 2:00. Liam was really good and only cried for a little while during the change out….It looked VERY painful…I was surprised at how quickly Liam bounced back and was smiling and happy again about 10 minutes later. Then it was on to a quick hook up to feed him before his Cardiologist appointment at 3:00…

Dr. Verma said Liam is doing great – gaining weight really well, at 15 lbs. 12 oz. - even though this is slightly lower than he weighed in at his appointment last week, it was still a good month overall for weight gain.  His oxygen saturations were lower this time, at 72 instead of 82 a month ago, Dr. Verma said his shunt sounded good and looked good on the Echo. We talked a little more about his next surgery – Liam is 5 months right now, so possibly the beginning of May we will start coordinating with the surgeon to see when the optimal time is for surgery. They will need to perform a Heart cath procedure when Liam is 7 months and then possibly schedule surgery right afterwards or possibly wait a bit longer if everything looks fine with the shunt. I can’t believe it is only a couple months away…I need to start some serious prayer time!

Speaking of prayer, God reminded me today to not forget to pray about what seems to be our reality…You know, the doctor-says kinda stuff that you just accept and move on from. I have a tendency to accept things the way they are and pray for resources to get through it – the “walk around or over the mountain” prayers. While this is good, God wanted to remind me that I can pray for the mountain to be moved! Awhile back I did a bible study that talked about just such a thing. It’s by my favorite author, Beth Moore, in her Believing God series. It talks about really believing God, especially in prayer, and knowing and believing that God is who He says He is and He can do what He says He can do. God is bigger than the doctor’s word, His miracles and healing can and DO happen. I need to remember that God’s word needs to be the source of our HOPE for Liam and not the doctor’s diagnosis. I need to pray EXPECTING and BELIEVING God to work and do big things in our life.

3.2.10 - Growing up fast!

So...haven't posted in awhile.  My apologies.  I knew I shouldn't have put it in writing to blog three times a week...how time flys!

Liam is getting really BIG...PRAISE God!!  He already weighs more than 16 lbs by now - he weighed in at 15 lb. 15 oz. last Thursday - up a whole pound from the week before!  I only thought weight gain like that happened in pregnant women!  It is such a huge answer to prayer that he is gaining weight so well, as the bigger we can get him for surgery time, the better!

We have a big week next week as far as doctor appointments go.  We FINALLY get to go get his MIC-Key button for his g-tube put in.  YAY!  It has now become Liam's favorite toy, the tube, so I'll be glad to see it be gone for the most part and only have to deal with it during feeding time.  We also take a visit to the ENT next Monday to check his vocal chord and then to the cardiologist and button appointment back to back on Tuesday.  We may find out when the surgery will be scheduled for at the cardiologist appointment.

As Liam grows bigger everyday, I have been feeling a little more anxious and nervous I guess about what the future holds for us.  As his next surgery is quickly approaching, I'm reminded of our previous time at the hospital and how hard it was on us as a family.  Needless to say, I am not looking forward to the emotional roller coaster that lies ahead.  Honestly...and I'm going to be very candid for a minute here, I know God has it under control, no matter what happens, He knows what we will go through, the struggle and I KNOW He hurts with us and is completely by our side, but it's hard not to think how long do we have with Liam?  I have never experienced a type of surrendering like this before, and it's hard sometimes not to think about it...But I know what I know about my God, and that's what I'm clinging too!  The Lord is faithful, loving, and caring - He will see us through. 

This journey also continues to expose and allow Dustin and I to talk about our faith like we never have before.  We are both learning about ourselves and also what eachother's strengths and weaknesses are in light of our faith.  Just last night, I realized that though I tend to see God more often in the little events and things in life and am comfortable trusting in many small areas, Dustin is opposite and tends to trust more in the big picture events.   Dustin's huge confidence in faith with the upcoming surgery helps get me grounded again when my mind starts to "What if..", while my daily confidence in parenting and care for Liam in the short term helps get us through the daily struggles.  It's interesting to see how God truly matched up our strengths and weaknesses purposefully in our marriage...little did we know at the time the roles we would play!

Our friends and old roomates at the hospital, the Hamilton family, will soon be going to surgery #2 with their son in a couple weeks.  If you could say a prayer or two for them, we would greatly appreciate it and I know they would too.  My prayer for them and us is for the Lord to prepare our hearts and offer us encouragement and peace in this fragile and unknown path we'll be on.  I am so thankful we never walk alone in Him.

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!