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...

1.18.10 - G-tube Surgery day

We are here at Medical City awaiting check in. The surgery is scheduled for 11:30 and should only take about 30 minutes. He will have some labs done before. The anesthesiologist called us last night to talk about how things will go from her standpoint. Liam will be fully asleep under general anesthesia and will also be intubated (on a ventalator,which I was not aware of until last night...). She said it was more a precautionary measure. The surgery will take about thirty minutes and then we'll stay at the hospital a couple days. I'll keep posting as the day goes on...

1.16.10 - Quiet before the storm...

We are enjoying a nice quiet leisurely Saturday (watching football of course - Liam loves football...who knew?) before Liam's tube surgery on Monday.  His cardiologist appointment Wednesday went really well, he is 12 lbs. 14 oz., 23 1/2 inches long and his oxygen still sits in the 80's at 82 which is really good.  Dr.Verma is still anticipating his next heart surgery for when Liam is around 6-7 months old.  That would put it sometime in April or May. 

Dr. Verma did say Liam had slowed down his weight gain since last month, but is still doing well for growth. That makes sense, over Christmas we dropped off his nightime feeding because he was sleeping so well at night (I like to think the Lord is honoring us and giving us a child who sleeps through the night in lieu of his other difficulties.  It is heaven.)  Anyways, the G-tube will be easier to manage his feedings since Liam needs to have a certain number of calories everyday to compensate for the extra calories his heart burns. We should be able to do a continous feed all night long, to make up for what he doesn't get during the day.  With a tube, it is hard to tell how full they are getting, etc.  We were up to 120 ml per feeding, but Liam was not handling that very well (i.e. spitting up after he ate and getting uncomfortable towards the end of his feedings), so we had to drop him back down to 110 ml, since that seemed the most he could comfortably handle all at once.

I am really hoping the tube surgery goes as expected.  I've had this fear that it is going to open up a big can of worms....hopefully other issues won't pop up because of this.  One day at a time...stay tuned.

 

 

1.10.09 - Fun times...

I am at Mimi and Grandpa's house right now. My dad has been out of town since last Wednesday, which meant I got to spend all week with Liam. It was a lot of fun, but I'm exhausted! He's a lot of work! LOL. It was really great getting to spend a good chunk of time with him, other than weekends and after work. He has really grown up so much and is maturing everyday.

Speaking of, Liam loves watching TV now. My little discovery during our days together last week. I know, I'll probably get flack for it, but I let him watch just a little bit here and there. I first noticed he was watching it Wednesday morning while I had the news on. He stared at the tv while I was feeding him for a good 10 minutes or so. So I decided to test that to see if he was really watching tv or if it was just a fluke. So, I put him in his bouncy seat and turned on PBS. Just so happened Clifford was on. I was thinking a big red dog should get his attention (and hopefully keep it for 15 minutes or so so I can pack things up ready to go to Medical City for his GI test). Liam sat quietly watching Clifford the entire episode. It was heaven...So TV's not so bad after all...right? Honestly, we didn't watch too much TV. Only an occasional PBS clip or two and maybe some football - He had to see his Cowboys win ya know.

I am amazed at how he is progressing. He continues to gain weight, at over 13 lbs now, is sitting up more and supporting his own head, and just discovered his hands! He is really doing great.

We scheduled his tube surgery for Monday, January 18th at Medical City, so a week from tomorrow. He has a cardiologist appointment this Wednesday so they can check him out beforehand. He is expected to be in the hospital a couple days, but hopefully not in the ICU this time. It will be strange having him in the hospital again. I wonder if we will have any nurses that we know...I think this time I will stay the night with him. I just can't see leaving him there by himself this time around.

The other night I got overwhelmed again (I am really trying hard not to read support forums on feeding tube issues...they are really depressing sometimes...but it's hard not to). Are we making the right decision? Are we doing everything we can to help him to be able to eat from his mouth again? I know sometimes I feel like this surgery is the easy way out, like we should be working harder to keep him from having to go through things like this...It is a strange feeling...that feeling of responsibility. Like somehow we are the reason he is suffering or the reason he needs to have a tube put in. I think any parent feels this way at some point when their child is not developing normally...but it's hard to deal with sometimes. The Lord reminded me (I am so thankful He reminds us!!) again that He is sovereign...whether it be over our feelings of inadequecy or over physical measures that have to be taken, He is in control whether or not we believe Him or aknowledge Him. He has prepared this path for us and will shine His light on it too....Will I follow Him and trust Him to lead me? I pray that I can...each and everyday.

1.7.10 - Tube decisions...

I am sitting here with Liam tonight feeding him thinking how nice it will be to have that tube off of his face.  And of course for him to have that freedom of not being uncomfortable and having to sport little mittens on his hands 24/7. We met with the GI surgeon today to discuss the surgery invloved for getting a G-Tube.  Basically it is a pretty simple and quick surgery lasting about 30 minutes that involves putting a button-like valve directly into the stomach using what is called a MIC-Key G-Tube (they call it a "Mickey button"...I thought maybe Disney had gone into medical devices until I learned the actual spelling of the term!)...Ok, I just tried to look up a picture to have a link to and couldn't find a good one of what they look like, but basically the MIC-Key looks like a plug on a beach ball.  We can still use the same pump and everything too.  Liam will be hospitalized for about 2 days following surgery and most likely will not have to stay in the ICU unless he has complications.  All I have to do is call the surgeon's office tomorrow to schedule it and we are on our way.

The Upper Gi he had done on Wednesday went well too.  They said his stomach and intestines looked normal and were functioning correctly.  YAY!...but I had a feeling since Liam is continuing to gain weight really well and is already past 13 lbs!  He is even, should I say, getting that baby pudginess in places?....Especially his little cheeks!

I can't say I am really worried or nervous about his tube surgery, however, this will be the first time we go back to the hospital to stay for a few days.  There is always risk of infection and complications, so it will still be stressful nonetheless.  However, I was visiting with my sister in law tonight and I was telling her that I am thankful Liam is not to the awareness stage yet, still young and doesn't know what is going on.  The surgery that I think will be the hardest is the one, (besides his next heart surgery which will be in about 3-5 mos) after this one, when he outgrows his first valve at about 4-5 years old.  I don't even want to think about how hard that will be to explain to him what he will have to go through and see his little face respond to what is happening....Thankfully the Lord has a few years to work on my courage and strength for that one!

  "If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast."    Psalm 139:9-10

1.1.10 - Happy New Year!

Our New Year started off with a bang for sure.  Dustin, Liam and I all stayed over at my parents house last night.  It was Liam's first night away from home (besides the hospital of course).  Dustin packed up all 20 of our bags - or what seemed like endless amounts of "baby stuff" and made the trip down to Bedford.  My dad had already taken a load of stuff earlier from our house with Liam.  We made it with mostly everything we needed, mainly the pack in play and his feeding equipment.  I have not stayed over at my parents house in quite awhile, so having Dustin and Liam with me would be quite interesting.  We had a full house.  Let the fun begin!

So, the evening went well.  We seemed to have everything we needed.  Liam did great, even slept the whole night.  That's when the story gets exciting.


I woke around 5:45 to start to get his bottle ready.  Had to get up a little earlier because I was without my coveted bottle warmer (1 minute for a warm bottle definately spoiled me!).  As I groggily started getting things ready, a little voice told me "Go check on Liam...".  This wasn't an unusual request, as frequently Liam will start getting squirmy when I get up in the mornings, but give him his binkie and he goes right back to sleep.  So, that was the plan.  As I went and peeked over his crib, I saw an interesting sight.  Liam had slid down to the end of the pack n play (we put blankets underneath, so he could sleep on a little incline for his reflux) and his arms were waving around GLOVELESS.  I started getting a little panicky, as the gloves are a very important part of his attire.  Since it was dark in the room still, I couldn't see the details of his face, but immediately started rubbing my hands over his cheek to find the one thing I had a funny feeling I wouldn't find....His TUBE.  Yes, that's right, our little Liam had had a great time during the night and had ripped his tube out of his nose, tape and all.  I immediately turned the light on and as he squinted and squirmed, he had a peculiar little smile on his face...FREE AT LAST!  I knew what he was thinking....I couldn't help but stand there in awe of the mischevious little booger that was my son...


I found the tube laying behind his head with the tape still attached.  His little cheek was as red as can be.  I was perplexed as I never heard him ever utter a sound during the night...As he always cries loudly whenever I dare to touch his tape and change it out.  No sounds, not even a peep.  I had NO idea what he was up to right next to me.  Ugghhhh...here we go again.  Couldn't he had just waited?  We are hopefully getting that tummy tube put in SOON.  Not soon enough I guess...


By this time, I have already woke Dustin up off the couch.  I asked him to call the Urgent Care Center to see when they open.  I figured I pay the $20 copay to have someone have to deal with putting a new tube in.  Man...New Years day...great timing on this one, don't open til 8.  It is 6.  Liam hasn't eaten since 9 the previous night....don't think that's gonna cut it.  Dustin and I look at eachother and realize, we are gonna have to do this...again.


Luckily, I had thrown a new tube in the feeding bag as a "just in case".  I am queen of "just in case" packing.  I think this was the first time I have ever used my "just in case" item come to think of it though.  So, Dustin got the job of putting the tube back down.  In less than 10 seconds, Liam was all fixed up, and without more than a few fusses. We check it and it's good, no coughing, no fussing.  Easy as pie.  Let the New Year begin....

Needless to say, our decision to have a more permanent feeding tube put in has been a fairly easy one.  It obviously wasn't out first choice two months ago, but at this point it just makes sense.  I had an appointment yesterday with a Gastrointestinal Specialist and she confirmed our decision.  She also recommended we get an Upper GI series done to make sure his gastro track was working properly first and then schedule a consult with the surgeon to go over the surgery.  The GI series will be next Wednesday and then we will meet with the surgeon on Thursday...hopefully, we can then schedule the surgery ASAP.  Then Liam will really be free at last...and for good.

My prayer for this year is for us to keep growing strong and have a healthy boy.  His next surgery will be quickly approaching, and the new year will have a lot of untraveled, uphill roads for us to travel.  I chose the song to the slideshow after hearing it on a Christian radio station on TV one day while home on maternity leave.  I thought the words were perfectly fitting for any parent, knowing that their child will eventually face the real, raw world.  But, we are always safe in God's arms.  He is always holding us...we just need to remember to cling tightly to Him too.