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Saturday, March 27, 2010

3.27.10 - Feeding time!!

We just fed Liam his first meal about an hour ago...It was SO exciting! I think I was more excited about it than he was, but he did GREAT and ate about 2 tbsp. worth of sweet potatoes! Here is the video...


video


Pretty funny - he would scrunch his nose every time he took a bite, but then would open his mouth for the spoon when I went for him, so I thought that was a good sign =) It feels so good to feed my baby!!

So needless to say the swallow study went great the other day. Liam still aspirated on the thinner liquids, but the honey consistency formula and the marshmellow barium paste they fed him he did great on - no aspiration! From what I can understand, Liam's only problem was coordinating his swallow when food/liquids pass down his throat. His swallowing seemed stronger and able to do the job, but the thinner liquids went down too quickly and he didn't have a chance to swallow to guide it down the right tube, hence some of it went down his trachea. With the more solid, thicker formulas and food, he has time to swallow it because it doesn't go down as quickly. The OT did say he could tolerate a honey consistency formula, but that it really wasn't going to do anything since he wasn't strong enough to suck a lot of it out of the bottle since it is SO thick. He would just waste too much energy trying to get it out of the bottle. Plus, she said he is at a good age where we can start teaching him swallowing reflexes with solid foods and this should get his coordination better to handle liquids in the future. Looks like we are on our way to slowly eating normal - I am thrilled!!

We also now have a date scheduled for his next surgery. The heart cath will be performed on Wednesday, April 28 and the surgery will follow the next day, Thursday, April 29th. She said that Dr. Mendeloff will have a meeting with us after the cath to go over exactly what they will be doing in surgery. As we understand from our meeting with him before Liam's first surgery, this surgery will involve replacing his pulmonary valve and closing his septal defect (hole) between his left and right ventricles.

I am just overjoyed and in awe of how God is working in Liam to heal him. Dustin and I know and trust in the Lord's timing for everything we have been through and God has been faithful. I never doubted He would be! Even though I have many moments (ok, sometimes days at a time) where I am freaking out in anxiety on the inside, I really do have confidence that the Lord has placed us in the right surgeons hands and above all else, in HIS hands. This will be a LONG month for us/ME...the anticipation has already begun to sink in. Now that we have an actual date it is also becoming more real. It seems like just yesterday we were bringing Liam home for the first time and now its time to go back and do it all over again. I am scared, in all honesty, of going through this again...I have never walked a journey like this with the Lord and I am scared. I know He knows this secret about me and I know He knows how I feel, and truly understands...I find it fitting that Easter is just around the corner.....


Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.
2 Cor 1:3-5

Thursday, March 25, 2010

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!

Tuesday, March 23, 2010

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!!

Saturday, March 20, 2010

“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!



 

video

Wednesday, March 10, 2010

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.

Tuesday, March 2, 2010

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.