11.27.09 - Turkey Time

What a great Thanksgiving! We had family over all day yesterday for Thanksgiving.  Dustin's sister and her husband had a wonderful turkey dinner planned and prepared for us.  Liam got to meet and enjoy the whole family all day long....And boy was he exhausted - He has been sleeping great this week at night, so I'm praying that continues! 

We finally finished the nursery today.  I saw the idea for the numbers paintings online a while back and thought it would be great to have the whole family paint one number each.  So yesterday evening we had a family painting session and everyone really liked it and the paintings all turned out so great!  Honestly I was a little worried at what the end result would be and thought I would have to touch up a lot, but everyone did a great job and all the numbers look great together up on the wall.  I thought Liam would like to have a little piece of everyone's creativity in his room.  We all signed the back of the paintings with little notes too. It was a lot of fun!

As far as Liam's milestones go, he is holding his head up more and more and is very strong in his arms and legs.  I'm so proud of him!  He is awake a lot longer too, so we actually get "playtime" now.  In fact, Liam smiled as a reaction today, instead of just by accident, at me for the first time today! He is really getting to know my voice and is trying to mimick my facial expressions and making little coos and noises.  And he loves Dustin too - he could stare at him for hours and hours.

Our next doctor appointment is this coming Monday for the pediatrician.  We have a lot of questions for her, as the tube feedings seem to be getting a little more complicated since he is growing and requiring more food.  Since we feed him a set amount of food every three hours, we can't really feed him when he is hungry or stop when he is full like normal babies do.  It is hard to tell how much to give him other than what the cardiologist ok's for us.  He is getting fussy at almost every feeding now, thankfully the fussiness doesn't last very long, but it is still a lot to handle at times.  He is also refluxing more now and has spit up occassionally, which could be a problem if he is still aspirating.  I am really hoping his vocal chord is healed enough to compensate now.  I am going to schedule that appointment soon, so we can have that checked out.  Liam's cry is strong now, so I think it is healed some if not entirely.

I go back to work on Monday.  It is bittersweet, as I am looking forward to getting back to a normal routine, but will definately miss seeing Liam all day and not getting to be there for him during the day.  My dad has graciously offered to take care of him for us at least until his next surgery so we don't have to put him in daycare and risk getting him sick.  We are so fortunate to have him help us.  But I know he loves Liam so much and he really enjoys taking care of him, he wouldn't have it any other way.


This Thanksgiving was definately our best ever.  We have so much to thank God for...I truly am counting my blessings!

 

11.24.09 - Family Time

Today I took Liam to get his Synagis shot for RSV prevention.  RSV is a upper respiratory infection that is easily spread and is common in children and can be dangerous for premies and high risk infants.  We have to get Liam a shot every 28-30 days until April or May, whenever the season winds down.  I have a feeling his vocal chord is starting to function properly again!  Poor thing, he was soo good, but did have an outburst when the nurse gave him the shot in his thigh.  It's weird that I like to hear him cry like that sometimes...it gives me hope that he is healing!

Dustin's family is in town for Thanksgiving and it has been so nice to spend time with them and have them meet Liam.  We are being a little paranoid about the germs, but hopefully everyone will stay healthy.  Liam unforunately has been very colicky in the evening, so  it's been nice to have someone to pass him too when things get a little rough for mom...I am going to up his feedings again to 100 ml and possibly try to feed him a little closer together in the evening to see if maybe he is just getting hungry, which is what my mom instinct is telling me is the case.  We will see how it goes...I praying for no spitting up for overdoing it since he can't tell me when he is full! 

Otherwise, Liam is doing great.  Hopefully his little evening attitudes are just a sign that he is growing, which is something to be thankful for!

11.20.09 - TGIF!

It's Friday!  Liam had his second appointment with the Cardiologist this morning.  He got a great report.  Liam now weighs 9 lbs 14 oz., gaining about an ounce a day - right on track - we are SO blessed!  At each of his cardiologist appointments he gets an EKG and an Echocardiogram, as well as his oxygen levels checked.  Everything was right on target for where he needs to be.  I also upped his feeding this week to 90 ml per feeding and will probably be going up again next week - as I can tell he is getting hungrier now.  We meet with the pediatrician for his 2 month appointment a week from Monday - I can't beleive he is almost 8 weeks old already!

The feeding tube is going good...and after I posted last, that very next day, I was getting Liam ready to start feeding and was carrying him, I looked down and his tube was out!  He had pulled it out in a second's time....Ahhh!  I was just about to re-tape it as I noticed earlier he could easily slide a finger in the loop and catch it...and low and behold he figured that one out real quick!  I immediately called Dustin at work and he came home so we could put it back in (Unfortunately, it is a two man job...who would think with such a tiny baby??).  Thankfully, we re-inserted it easily and got a good check test to make sure it was in right....There goes our nice trip to the ER. 

We are really looking forward to this weekend and next week.  Dustin's sister and brother-in-law are coming to stay with us and we will have his family and my parents together at our house for Thanksgiving dinner.  I love the holidays...and we have SOOOO much to be thankful for...this Thanksgiving is truly giving thanks to our Lord for ALL His blessings!

11.15.09 - The Tube...

So tonight we had our first experience inserting the tube all on our own.  Since the tube is only good for 30 days, we decided to go ahead and change it out since Liam will haveto have one in another 6 weeks.   It took three tries, but we finally got it down.  I tried the first two times and couldn't get it - the first time the tube was coming back out of his mouth (scary...but the nurses told me it could happen and it was no big deal, just to try again if it happened) and the second time, I could not get the thing to go any further than his nasal passage.  Dustin tried the third time and got it to go down.  But, being the first time we had done this and me still being a little unsure about a lot of things to do with Liam, we went to the ER to get an x-ray to make sure it was placed right.  We had a couple reasons why we wanted to double check though (if not just for pure sanity reasons and peace of mind).  Liam was coughing a lot as we inserted the tube and it says on the instructions that coughing could mean it went down his trachea into his lungs.  We also tried to aspirate a syringe to pull back fluid from his stomach, which we did not get anything out of at first.  Normally when we pulled back the syringe before, we also got a couple cc's of fluid from his tummy.  We were just feeling a little uncertain and decided we should just get it checked to be sure.  So we took him over to Children's Hospital in Plano (our second trip there I should add - never did a post on that one...another "peace of mind" trip though) to the ER to have them do an x-ray.  Thankfully we were successful and the x-ray showed the tube was in a good spot. Whew...we just got home a little while ago...we will have to plan that better next time!

Dustin and I are getting a lot of opportunities to work together and grow as a couple through this journey with Liam.  I was thinking tonight that this experience has magnified some of the areas we need to work on and also the areas where we are strong in our marriage.  It is interesting to be learning how we both cope with difficult times and challenges that arise.  It is something I had never thought about much before, but is so important to know about the other person.  I want to be sensitive to how Dustin responds and reacts as I know he tries to be for me.  I truly beleive our faith is what binds us together and is our foundation for being able to recognize these things about eachother.  Our faith in the Lord as King in our life is also what teaches us to trust one another and love unconditionally.  Needless to say, Dustin and I are growing closer and closer every day and I truly could not do this without him.

Praise God too for my mom being able to watch Liam this morning so we could go to church for the first time in a couple months.  It was so good to be back in our "home" around the people we love and consider to be part of our family.  Our church has been a major support in our life, especially now.  And today's message was about Radical Faith...how perfect is that!

11.13.09 - Friday the 13th!

So I am sitting here, just realizing it is Friday, and the 13th at that.  Gosh, my days have been so strewn together since we have been home.  Kind of nice that we sort of have a routine down now though.  I was thinking how our a year ago, even 6 weeks ago, was SO very different...But I do think the Lord's plan for our life has been flawless thus far - even though some days are better than others!

Dustin is out getting us Chinese and sushi for dinner right now meanwhile Liam is asleep in my Moby on my chest...so sweet - I love him in it!!  He just falls right to sleep every time!  He has been more and more awake everyday which is fun but can be exhausting.  We go from toy to toy while he is awake, but he loves just being held, so I try to hold him as much as I can. 

He is sleeping longer at night, about 4 hours instead of 3 which is great because more sleep for me!  I have my alarm set at night, but I have been trying to let him wake up before I feed him.  Hopefully the sleeping at night will get better, especially before I go back to work.  It's just hard with the machine because you have to have some sort of routine based on the clock instead of when he wants to eat.  Thankfully Liam seems to be gaining weight very well, which can sometimes be a big problem in heart babies because their heart is working extra hard all the time and requires a lot more calories.  We just weighed him on our scale tonight and it looks like he is already up to 10 lbs!

11.11.09 - 6 weeks down, 6 weeks to go...

Liam is 6 weeks old today!  I can't believe how the time has already flown by...

We had our repeat barium swallow test done today and it wasn't good news.  Liam is still aspirating a small amount on even the thickest formula...his swallowing is just not strong enough to clear away the small amount of residual remaining.  We will have to keep him on complete tube feedings for at least another 6 weeks, when we will go back to have the test done again.  I broke down today while the nurse was explaining everything today...I just really wasn't prepared for him to have to be on this tube for much longer.  It is especially hard on us at night because he gets really hungry and colicky.  I keep thinking the bottle would soothe him and let him know we are meeting his needs and feeding him when he is telling us he is hungry.  We also have to decide whether we are going to keep him on the NG tube he has now or if we will have to have a more permanent gastro tube surgically implaced.  Hopefully our pediatrician will allow us the option to keep the NG tube like we have now...but I am not sure the ramifications of keeping this temporary solution for too much longer.

The Lord has even today shown me how this trial will grow Dustin and I as parents and also benefit Liam.   I really thought that the act of giving Liam a bottle would soothe him in his colic at night, and it may have.  But I found another way to soothe him...the Moby wrap!  I wanted to order a sling to carry Liam around with me and be able to be hands free.  He is so calm and happy when I am holding him, so it just made perfect sense to get a sling to carry him to keep him, and me, happy and stress free.  So I did some research and found the Moby wrap.  There is definately a learning curve on how you put it on, as it is just a really LONG piece of sturdy knit fabric and you wrap it around you and the baby so it holds the baby on to you.  It worked GREAT tonight...I wrapped Liam up in it kangaroo style when he was getting really fussy and he went instantly asleep...really, instantly.  He stayed that way while I cleaned up the kitchen, got his bottles ready for the evening and did some laundry....awesome.   Plus, the booklet that came with instructions had a lot of great tips and things to do to help your baby sleep better, relax, calm and thrive.  Baby massage was one of the suggestions, so Dustin said he is going to do this with Liam every night.

Even though today was another setback, I remembered again how everything we have gone through has been very purposeful - both for Liam's healing and our faith walk.  I choose to believe that this is yet another trial that will be overcome both physically and spiritually.  

 

 

11.08.09 - Great weekend

We are at Mimi's and Grandpa's house right now, just finishing up a family dinner.  This was a great weekend.  Yesterday my dad came up to watch Liam while Dustin and I went and did some shopping and went to dinner.  It's funny, Liam and I are both in-between sizes right now...I am too small for maternity clothes, but still have a few pounds to lose before I can wear my regular clothes and Liam is between a newborn size and 3 month size, so we went clothes shopping for the both of us!  It felt so nice to get ready, fix my hair and do my makeup - I have been living in pajamas and sweats for a couple weeks now.  Dustin and I got to enjoy a lovely dinner at Maguires by ourselves, thanks to Liam's Gigi Ehrlich. 

Today we took a trip to Bedford to my parents house, Mimi and Grandpa, for a family dinner.  We tried out the portable feeding system and it seemed to work fine.  We also tried out a new take-along swing, that I, yes me, put together all by myself!  It is the only piece of baby equipment I can say I put together, but that's why I married Dustin - he's a genius at stuff like that.  I just want to say too, thank the Lord for my wonderful parents - they have really been our support system through everything.  We could not have gotten through this without them and we are so thankful for everything they continue to do for us. 

Well I can't say I got a lot of sleep this weekend, as Liam is getting a little colicky towards his midnight feeding, it was nice to get away for a day and spend time with the family.  I am getting really excited for Thanksgiving though, as Dustin's family will be in town and we will be having a big dinner at our house.  Only a few weeks away! 

 

 

11.5.09 - A Day in the Life

Our time at home so far has been really great. Liam is doing really well, and is for the most part a normal and healthy baby! Being a mom is the most wonderful job in the world and I am loving every moment of it!

I have slowly been introducing Liam to some new daily activities that we are going to start doing together. Yesterday, we did some tummy time on a special tummy mat (I just LOVE to finally be able to use all the cool and fun gifts that people have given us!) and Liam did great. I think it was the first time that he has ever been on his stomach...I am not sure it's his favorite activity yet, as he kinda gave me a look like, "Ok, what kind of procedure are you going to do on me now?" but I think he'll get used to it. I was amazed at how he was able to manuever his little head around though. Although, he seemed to tire pretty quickly, so needless to say tummy time didn't last very long.

Today I took Liam for his first outside adventure...ok, so it was just a walk around the neighborhood, but it was very refreshing. Probably more so for me, as I have not set foot outside in I can't remember how long. But it was SO nice outside I couldn't resist. My dad was here, so the three of us took a nice little walk around the block. Liam slept the whole time, so he missed all the scenery, but it's nice to know I have options for making him go to sleep!

It's hard sometimes because I just want to tote him along everywhere I want to go, but he is still so fragile. His immune system is very vulnerable and the doctors say if he even gets a cold or runny nose, it could land us back in the hospital. But keeping him safe and healthy are top priorities, at whatever the cost.

Our next appointment is next Wednesday and Liam will have a repeat Barium swallow study done to see if he can start bottle feeding. Please be praying for us! This is the last step to really being a normal baby and a huge indicator of progress that he is making in his overall strength and growth too. Pray that his vocal chord is moving and that his strength is enough to compensate so he can bottle feed. We are anxiously awaiting the day to say good-bye to that feeding tube!