Saturday, October 31, 2009

10.31.09 - Happy Halloween!

Thought I would just post some new pictures today - Liam's Mimi had fun dressing him up and taking some pictures while we were out car shopping.  Happy Halloween!!


Friday, October 30, 2009

10.30.09 - Good Report

We had a follow-up appointment today with our cardiologist, Dr. Verma, that went really well.  Liam had an EKG, and echo-cardiogram and his oxygen saturations checked. Dr. Verma said that everything looked really good and the shunt is working just fine.  Liam weighed in today at 8 lbs. 3 oz., up 7.5 oz from Tuesday!  He is growing so fast! 

Liam has been awake more and more lately...Like right now as I type this, he usually would be asleep, but is wide awake.  Although I think part of this is the diet he is on - formula fortified breastmilk makes his tummy very bubbly and I think it bothers him a lot, but he has to have the higher calorie in order for him to gain weight.  Dr. Verma said since his heart is using more calories than normal babies, we have to compensate for that.  I have already changed the formula once, and may be looking to change again if he doesn't seem to tolerate it any better.  Poor little guy, I know he is uncomfortable.

This has been a long week of adjusting to home life.  It is so good to be home, but honestly I had a couple breakdowns this week as I realized the tremendous amount of responsibility Dustin and I have in caring for Liam.  I am frustrated and terrified at times because I feel so unprepared and inadequate.  Thankfully the Lord gave me opportunities to build my faith and encourage me.  The Lord keeps reminding me that he appointed me for this job and he will equip me with whatever I need to carry it out, I just need to trust Him.

On another note, the accident Dustin was in couple weeks ago ended up totaling out our car...SO, we get to go car shopping tomorrow.  My parents are coming over to watch Liam and I know my mom is so excited to play dress up with him.  Liam has a couple of cute halloween outfits she is anxiously awaiting to deck him out in.  I'm leaving her the camera, so we'll see what happens!

Tuesday, October 27, 2009

10.27.09 - Growing boy!

We are so glad to be home. We finally have down a routine with feeding and all the normal baby stuff, so it feels really good to do our own thing with Liam. It is still a learning experience with him (as I'm sure it will be for the rest of his life!), but we are doing the best we can and I think it's working well. It is still a little overwhelming and scary at times to know the entirety of what we are responsible for, this little life of his is in our hands! It is a faith walk everyday for the Lord to calm my spirit and give me peace and strength to do the job He appointed me to do. But the Lord has blessed us with a wonderful little boy, as he sleeps a lot, fusses very little and I would guess he would sleep through the night as I have always had to wake him to do his feeda at night and he is as content as can be. I don't think we could ask for anything more right now!

We visited the pediatrician today for the first time. It was our first official little outing with him. My dad came up to help out since Dustin is now back at work. The appointment went really well, I think Dr. Bain is going to be a great fit for Liam and his needs. She says she deals with a lot of special care kids, and she feels completely comfortable caring for Liam. She already increased his feeding amount and just told us he needs to grow a bit more, but all around he is looking very good! I am just happy we got out of there without him peeing on someone or something as he had to have his diaper removed a couple times!

I also learned today that it takes me longer to get Liam ready to go somewhere than it does myself! And for those who know me well, that's a good chunk of time! I knew from much advice to always pack lots of changes of clothes and plenty of diapers and wipes so that's all I really went with! Thankfully that is all he needed for today's excursion!

Saturday, October 24, 2009

10.24.09 - Home at last!

We are finally home!!  YEA!!  We were released yesterday about 2:00 pm after an evening with Liam all to ourselves.  It was great to all be together as a family, but it was a sleepless night for me.  Dustin and I traded off setting up Liam's feeds and diaper duty.  It is a long process, his feeding time, as his amount is given over an hour time period, meanwhile I get up to pump when he is fed.  We are holding him each feeding and giving him a pacifier to simulate an actual feed so he can associate the sucking with a full tummy. 

Liam has been great.  It is taking some getting used to at night to hear his ooohs, awws and growls he does.  He is a good sleeper though and definately sleeps better at night than during the day, which is nice.  I have been having to wake him for all the night feedings, while he usually wakes up about 30 minutes prior to the daytime ones.  But he does sleep a lot.  I guess his little body is dealing with a lot right now, so it's a good thing.

We will have a slew of follow up appointments in the next couple weeks.  I finally take him to go see our pediatrician on Tuesday and I am excited for that.  Her name is Dr. Deborah Bain in Frisco and I have heard really great things about her and am anxious to hear how she will be managing all of Liam's needs.

I just wanted to take the time again to thank everyone for all your thoughts and prayers and for those of you who went out of your way to care for us during this time.  The love and support we have received from everyone is unimaginable and we feel humbled and blessed!!  Liam will always need our prayers, and it is wonderful to have such caring friends and family by our side along his journey.  Blessings to everyone - You are all loved and appreciated more than you can know!

Thursday, October 22, 2009

10.22.09 - Roomies at last!

We are all finally together for our first night alone as a family!  Well, there are still nurses around and we are still at the hospital, but reality is slowly starting to take over.  And of course, I am not taking everyones advice of sleeping when the baby is sleeping (Liam is sound asleep right now, and so is Dustin not to mention!)...I think I am too anxious to sleep. 

We just finished his feed not too long ago and I think we did ok.  The equipment we will use at home is not like the equipment the nurses use here, so that took a little adjusting to figure out how its all going to work.  At 11:30 the nurse is going to come back to show me how to do a sponge bath around his scars, since the bath was the only thing I never saw the nurses do because they do it late at night.  We also have to practice putting his tube down again...They make you do it twice.  I think it's only fair that Dustin do it this time!

It's a weird feeling to know that tomorrow we will be leaving the hospital and closing the chapter on this part of our life.  This place has literally been our home for the past 3 weeks, and as excited as I am to finally be going home, a part of me will miss it here.  We had a lot of memories in this place, a lot of pain, but also huge triumphs.  I caught myself a couple times already glancing upwards towards the monitor that is no longer there and reaching for the cords that are no longer attached.  I feel a little uneasy to leave the comfort of hospital care, of the peace and reassurance the people here can provide.  But the Lord needs to be that for us...and I know He will be.

Well, I may try to take a little cat nap before the routine starts over again soon.  May the Lord watch over us and give us peace for tonight!

Wednesday, October 21, 2009

10.21.09 - What lies ahead...

Today was a busy day - getting ready for tomorrow night when we will room in with Liam and finally go home Friday!  YEA!!

Liam had his circumscision today.  Glad we got that out of the way.  Poor thing, luckily he took it very well and was not even really fussy afterwards.  We also received the home equipment that we will be using to feed him with.  I got a mini crash course in how to use it.  Thankfully, tomorrow I will have some feedings to practice with while the nurse is there.  SO much information to remember!  I hope I can do this!

The rooming in should be interesting.  We basically stay in a hospital room with one twin bed and a chair and Liam's crib.  We are assigned a nurse who is there to answer questions (or if a problem arises) and I think she checks on us every four hours or so.  But we are responsible for caring for him like we would do at home.  Liam will be fed every 3 hours on the dot.  We have to maintain the same schedule that the doctors have him on.  I am curious to see how this all pans out....With me having to pump and feed him (his feedings are given over an hour time period), I think my days of sleep are over...but I guess that is normal for any new mom come to think of it!  Dustin and I will start our stay at around 8 pm tomorrow night and then go until they discharge us on Friday, assuming all goes well.  I can't believe it is so close!!  God is good!

Today while driving to the hospital, I had a sweet moment in the car with the Lord.  I was listening to my usual Power FM and I truly felt God was in the car with me!  He was reminding me of how far he had brought me in my life, how He had led me to the exact place in time that I stand in right now...this whole time preparing me and encouraging me for what lie ahead.  He reminded me He is always with me.  He spoke to me about feeling anxious for the future with Liam and He told me "I am the same today as I was yesterday and will be not worry!  I will be there for you like I have always been in the past, for my love for you, my child, is unconditional and unchanging".  Thank you Lord, for reminding me of how far I have come, and how far I can go with You by my side!

Tuesday, October 20, 2009

10.20.09 - Organization is the key

Liam is doing great today - a little more awake and verbal than he has been in the past, but doing great. My day here basically consists of changing diapers, getting his feeding ready, holding him while he eats, going to fetch his next meal (i.e. pumping =)) and trying to get things taken care of and down a bite to eat in between. Whew....I am starting to get a little anxious about going home. Lots to do and organizing a routine and game plan is going to be the key to my sanity...hopefully!

Dustin and I and my parents are all taking a CPR class tonight. Definately a must have course especially now our little one has a good chance of possibly needing it some day. Going to make it a long night here though...and I am already exhausted.

Everything still looks good to go home this week. I am going to run some errands tomorrow morning and indulge a little and get my hair done before Liam comes home. I am sooo excited that we are days away from starting our new family life together at our home!! Should be a WONDERFUL weekend!!

Monday, October 19, 2009

10.19.09 - Learning to be a mom

Today was a non-eventful day - and I am really starting to like days like today!  Liam was as much a normal baby as the next, crying when his diaper needed changing or just to be held.  It's nice that I think I am finally learning who my child is - I did pretty well distinguishing what he needed today.

Being a first-time mom, and despite the circumstances, it has been interesting to "learn" to be a mom in a hospital environment.  You have a check and double-check for everything you do.  They have him under a microscope, and not to mention probably have me under one to as far as what I do with him.  And those monitors he is on....boy am I gonna miss those things when we go home.  I tried hard today to just look at Liam to see how he was breathing and what sounds and gurgles were "normal" according to the monitors.  Over the past few days, I actually found an interesting trend related to his behavior and the oxygen saturation level on the monitor.  Whenever he makes his litttle bear "grrr" noises and sighs, his oxygen level actually increases quite significantly for about 30 seconds to a minute.  I started really appreciating those little noises, because for me, they now represent an indicator I can use to listen for him at home. 

I also got to insert a new feeding tube today.  It was more scary for me than I think it was for Liam.  God bless our nurse - she was so calm and encouraging -she walked me through the whole experience (yes, it was an experience, one that I hope to not have to "experience" again though!).  I feel pretty confident that I know how to check the placement and in the event it comes out, put it back in.  Thankfully they are ordering us some of that extra sticky hospital grade tape for his face, so hopefully we can make this tube stay in as long as it can!

We are praying that Thursday will be the day we take him home.  Doctor said today that if things go well today and tomorrow, we can room in with him Wednesday night and go home Thursday - my actual due date!  I can not wait!!  It will be so great to finally start our normal family life together...whatever that will resemble!

Sunday, October 18, 2009

10.18.09 - Family Time

Today was a good Sunday...peaceful and relaxing.  We had family come and visit us at the hospital and we had a good time just being with Liam.

Dustin and I decided to go with the NG tube for Liam when we go home.  And to clarify, it is not something we have to take in and out every time we feed, thank goodness.  They put in a tube at the hospital before we leave, and we will only have to re-insert it if it comes out.  The neo-natologist said we could probably go home by the end of the week as long as Liam is consistently gaining weight - He weighs 6 lbs. 13 oz. right now and has to gain at least 1/2 to 1 oz. per day.  I am so excited that going home is finally on the horizon! 

Saturday, October 17, 2009

10.17.09 - Bittersweet

We got the news we didn’t want to hear today.  Liam will have to be on complete tube feedings for awhile, as he is still aspirating the thickened feeds.  His vocal chord will have to heal and resume some movement before we can try to bottle feed him again and there is no telling how long that will take.  We have to decide if we can handle feeding him with an NG tube or if we want a more permanent feeding tube placed in his stomach.  Dustin and I both feel like the NG tube is the best choice for us and the doctor is confident that we can handle it.  However it is more risky, as improper placement can be very dangerous.  The more permanent feeding tube would require another surgery and we just don't think we want to put Liam through anything else right now. 

The good news is, once they teach us how to do his feedings we can go home.  We will have to room-in with him one night at the hospital first, to make sure we can handle giving him all his medications and feedings on our own.  Hopefully, this next week we can finally go home!

I am honestly a little scared of what is to come bringing Liam home.  As some of you know, I can be a little bit of a hypochondriac, so having a sick child that requires extra care and worry will be quite a test for me.  I am often reminded over and over again by friends and family that the Lord will not give you more than you can handle.  I know this to be true, for it is His strength that is perfected in our weakness.  I have often wondered what is in store for our little boy - why God chose him to be so special.  I know that enormous blessings await him and even though I am scared and worried for him, I am also excited to see what the future holds for his life.

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
2 Corinthians 12:9

Friday, October 16, 2009

10.16.09 - Everything in reverse...

Today was a rough day for all of us. Liam's oxygen level has been low after his bottle feedings, and last night and today his oxygen level did not rebound back enough and remained low. The did an x-ray of his lungs to check to see if he might still be aspirating some and there was a small amount of fluid present. Therefore, they suspended his bottle feedings until they can figure out if that is affecting his oxygen saturation. They also had to put him back on oxygen and put sensors back on his head and abdomen to monitor saturation levels. They ran another echo-cardio-gram and did some bloodwork to rule out any other possibilities for why his levels are low. When we left tonight, his levels had seemed to recover some, so hopefully overnight they will remain strong.

I am not sure how today will set us back, if at all, with the possibility of coming home early next week. Hopefully, it will just be a blip on the radar. One day at a time...

It also didn't help an already stressful day that Dustin was in a minor car accident this morning on his way to work. He was not hurt at all, but our car will probably be in the shop for awhile. The other driver was at fault. Thankfully, he was able to take care of everything today and get us squared away with a rental.

So that was our Friday. I think I am becoming a little numb to everything. I was pretty emotionless today - I think I am getting exhausted with all the what-ifs and what-could-be's. It seems everytime we make progress, we have twice as many setbacks or obstacles to overcome put in our way. The Lord must sustain me...I'm losing steam here! But press on we will...for our strength comes from a bottomless source! Thanks be to God!

Thursday, October 15, 2009

10.15.09 - Pictures!

Liam is doing great today.  He continues to eat about 2/3 of his feedings on his own.  Latest news on going home is hopefully middle of next week!  The nurses have begun to call Liam "little bear"  I have a feeling it's because he sleeps so much and groans and sighs a lot and its sounds like a bear Grrr... =)  So cute!

Wednesday, October 14, 2009

10.14.09 - Apart for the day...

Liam is two weeks old today. My prayer is to get him home on or before my actual due date with him, which is next Thursday, October 22. How cool would that be if we could bring him home that day?

With the flu season at hand and the swine flu rampant in our area, the hospital has really buckled down on visitors and strongly encouraging people who may be sick to stay home. I got to see Liam breifly this morning and then went to a parent support meeting where I realized I was not feeling well. I decided better to be safe and go home for the afternoon to rest, hoping that it was just something I had eaten. I am feeling much better now (and I think I was overly exhausted), so I thankfully I do not think I am sick. Plus, Liam is dealing with a little diaper rash problem right now and is going constantly. They had to take him off my breastmilk for the next 24 hours and are giving him special formula to help his digestion ease up a bit. Liam is continuing to eat well though, as he is eating at least half of all his bottle feedings on his own.

Whenever I can't be with Liam at the hospital, I struggle with feeling guilty for leaving him and I miss him so much. I am trying really hard to not worry and not be anxious about him when I am not there, but it's like leaving your newborn with a different person all the time. Even though they are nurses, they are all different and have different ways of caring for babies. I know I need to take care of myself so that I can care for him when he comes home. I just have to keep reminding myself that God put those people in authority over Liam at that hospital, so God is still in control, even when I am not there to see it.

Tomorrow is a new day...hopefully Liam and I will both feel better so we can be together for some sweet bonding time!

Tuesday, October 13, 2009

10.13.09 - Little victories

Liam had his barium swallow test at 9:30 this morning.  I got to go with him and watch the test and it was very interesting and I am glad I got to see what the doctors were seeing.  They fed him several different consistencies of barium to see which one he can handle without aspirating.  They x-rayed him while he was drinking so we could see the flow of the milk go down his throat.  Unfortunately, he ws aspirating quite a bit of the normal milk consistency; over half of what they fed him went down his trachea.    The said he has a good strong sucking motion, but his swallow is very weak and delayed.  The doctors confirmed that they need to add thickener to his milk.  The thickener will help the milk go down the right tube plus also help strengthen his swallow muscles.  However, it takes more energy for him to eat now because he has to work harder to get his food down.

The hopeful news is that the neo-natologist seems to think that Liam’s feeding issues will only take time to overcome and are not permanent, but eventually she thinks within weeks or maybe a couple months, he should resume normal feeding.  She did say there is a good possibility we will go home with a feeding tube but it should only be a temporary thing and it will only be for whatever he cannot get down on his own. She was optimistic to start him on the thickened feeds to see how he progresses and said possibly maybe go home by the middle of next week if he progresses well. This was very encouraging news, but I am still going to take it one day at a time and try to celebrate the small steps.

For now, they are bottle feeding him every other feeding and tube feeding in between so he can get rest in between feedings to try to get as much down with the bottle as possible. His first bottle feed today he only got down 6 ml, out of 60 total. But, just now I called to see how his 9:00 pm feeding went and the nurse said he took 20 ml! Yea!! Small steps, but huge progress.

This is such a roller coaster...emotionally and physically. I am just grateful there are ups for all the downs. I am also so thankful for the little things right now, like getting to hold Liam and change his poopey diapers (and he peed and pooped on me twice today!)...I never thought in a million years I'd be thankful for that! Thank you Lord for our little victories...keep em' coming! =)

Monday, October 12, 2009

10.12.09 - Not an easy road...

Well, we got some difficult news today.  They found that Liam's vocal cords have been damaged during the surgery, which is affecting the way he is eating.  We were aware that this was a possibility, and even a very likely risk of heart surgery, but it was still hard to grasp.  Liam's cry has been weak and hoarse according to the doctors and he is still having trouble feeding, so they ordered that he be checked to see if his vocal cords were damaged in order to make sure he is not aspirating milk into his lungs when he feeds.  The ENT specialist did a fiber-optic laryngoscopy on him today that showed his right vocal chord was not moving at all.  The ENT is not sure the extent of the nerve damage, whether it is completely severed, bruised or just temporarily paralyzed, and only time will tell how serious the damage is.  The neo-natologist ordered a barium swallow test for tomorrow that will show us if Liam is indeed aspirating because of his vocal cord damage or not.  If he is aspirating, they will begin using a thickener in his milk to help keep it going down the right tube.  The test will also show us how much thickener is needed.  Meanwhile, Liam has to be fed all his feedings through the feeding tube until the test tomorrow.

I think it is finally sinking in with me today that our life will be changed forever.  Not in a bad way, just entirely different than anything we have ever experienced.  I grieved today...I think it helped me to really let all my feelings spill out to God and know that it's going to be OK no matter what, the Lord WILL take care of it for us - He has to and I know my Lord is faithful.  Liam is still our precious little boy and how much more thankful I am for all the normal things he CAN do and how he is healing from the surgery. 

Dustin and I are both in agreement today that we are willing to accept the road the Lord takes us on in this journey and to surrender to it.  It's hard, becuase our babies life and well-being are in the hands of doctors, nurses and surgeons and like today, it can be frustrating at times when you feel like you have no control.  But God is in control and our focus right now is to just get Liam home, healthy and thriving. 

10.12.09 - Back in the NICU

Yesterday was moving day again. Liam moved back down to the NICU from the Cardio Unit upstairs. This is a good thing, as now all we are waiting on to go home if for him to eat. He is still having some trouble getting all that food down at once. They only give him 30 minutes to eat whatever he can and then it's down the feeding tube for the rest. And on top of that they bumped up his feeds again to 60 ml....

It's a little frustrating not having him at home. I feel like sometimes this place is stressful on him, and if he were at home he would be doing fine, and like normal babies, be able to feed on his schedule and get enough nutrition that way. But I know that they just want him in the best shape possible before he goes home too, so it's just been kinda hard.

I did try to breastfeed him the first time went ok, but not sure how that's gonna work. I have a lactation consultant coming in today to help, but right now my only focus is to get him eating well enough on the nurses books to let him go home....I think however we can keep him eating, the better.

I have so much to be thankful for right now, so it's hard when things get a little discouraging. But Liam is a little champ, everything with the surgery turned out textbook and he is healing great. We are down to the last stretch here, so pray for Liam to EAT!

Saturday, October 10, 2009

10.10.09 - Perfect Ten

Liam is 10 days old today!  I can't believe it has been that long...or that short in reference to his recovery time.  He is doing great today again.  They bumped up his feeding amount AGAIN to 50 ml.  He is still having a hard time getting all that food down, but he is taking more and more each time.  The nurse said every 3 feedings he takes the whole amount.  But they are pleased with how he is taking the food he is getting - no reflux or spitups really to speak of, which is great because usually heart babies have a hard time with that.

We get to hold him whenever we want now too - which is SOO cool! He has a few monitors still attached and that's it.  They told us he is going to be moving back down to the NICU tomorrow - which is definately a downgrade, so that is good.  From there, they will work with us on breastfeeding and teach us what we need to know so we can finally go home!  They haven't given us a date we will go home yet, but we're hopeful we won't be here much longer =)

It amazes me how God created these little babies to be so resilient...Less than a week ago, our baby had heart surgery, and here he is today, not even needing pain medication!!  Unbelievable....God is sooo GOOD and he is faithful!

"Because of the LORD's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness."  

Lamentations 3:22-23

Friday, October 9, 2009

10.09.09 - Sunshine on a cloudy day

Liam is my sunshine on this cloudy day! He had his chest lines removed early this afternoon and he has been doing wonderfully all day long. They are letting me hold him now for feeding! It is so great to be able to hold him again. However, mom is not an expert by any means on feeding him...He did not eat very well for me for his first feeding this morning. His second feeding was not any better, so the nurse stepped in and helped me out - He ate his WHOLE bottle with her help!! I was so proud of him!! I am determined not to go home with a feeding tube, so today was a huge milestone for us.

It is great to be a part of his routine again. Slowly the nurses are letting me do more with him now that IV's and things are slowly coming off. He is even down to one fluid through the IV now (he started with 12 different fluids!) I am more excited to get here every morning to see how he is progressing, and every late night phone call to the nurse just gets me even more pumped at the progress he is making. Despite our little feeding setback, I think we are on our way now.

Thursday, October 8, 2009

10.08.09 - Two steps forward, one step back...

Had a small hiccup in Liam's progress today...He had to have a feeding tube put in so he could finish his afternoon feeding and to make sure he can get it all down now. He was trying so hard to suck all his food down, and the nurse (bless her for her patience!) was trying to wait it out as long as she could, feeding 1/2 the amount at once and 1/2 a little later so he could rest in between. But the surgeon came by this afternoon and ordered for him to have the tube....Sad news, poor little guy.

Luckily, they will still bottle feed him what he is willing to take and then feed him the rest through the tube. His tummy is just really small right now, so hopefully a few more feedings will help stretch it to where he will be hungry enough to bottle feed the whole amount soon.

The forward steps made today was the nurse finally got an IV line in, which means they can take out the IV wire lines that are in his chest going to his heart and possibly take out the arterial line (BIG IV in his forearm) soon after that. They also were able to turn off his little incubator heater since he has been maintaining his body temperature on his own. The more stuff that can come off him, the better!

Every day is getting better, I often think of how our life will be after the hospital and I get so excited. We are slowly, but surely, making progress for that to finally be a reality=)

10.08.09 - Time to Eat!

Liam is doing so good this morning...He is really being a little champ. The surgeon and nurses all met this morning for a little meeting right when I got here, so I got to overhear his progress from a medical standpoint...which means I didn't really understand a lot, but the reaction of the surgeon sounded very positive. The biggest news is he is still bottle feeding, which is GREAT - no feeding tube yet. YEA!! They said he has to eat at least 40 cc each feeding or the remainder of it has to be fed by tube. So far so good this morning, he just finished his 40 for the 8 am feed. Now he is sound asleep...

Speaking of eating, I just ordered my breakfast from the hospital. Up in the cardio unit they put me on the meal plan where I get 3 meals a day here for free. It is really great and definately helps out. They deliver it right to the room, so I don't have to be away very long. It's been nice not having to plan meals and the food is actually quite good!

Today is my first day here by myself. Dustin had to go back to work today - I am trying to text him all the little milestones when I can =) It must be hard for him to not be here...we were getting used to coming here together everyday. He is going to be here on his lunch break and then after work, so at least he can spend some time with Liam everyday. Liam just adores him...and so do I!

Wednesday, October 7, 2009

10.07.09 - Understanding the Pain

Liam is still doing great this afternoon...what an amazing and brave little man we have!  He is now eating from a bottle very well so far, so they took him off his IV "food".  Hopefully if he stays eating well, he will not have to experience a feeding tube. 

It was sad today because he got a vaccine shot for RSV and they also were trying to find another IV entry point on his little body (he has probably had a total of 5 or 6 IV's all in different spots so far), so he was being poked and prodded for a little while this afternoon.  He was soo good, but did cry at one point while they were trying to put an IV in his little foot...That was hard for me to hear.  But I kept telling myself, babies cry - that's just what they do.  I guess I have never heard him cry for a normal baby reason, so my heart is tender for him when he does....They never did get a good line for him, so they said they would have to try again later...Poor little guy.

I thought I would share a poem I found while I was looking at some websites related to Congenital Heart Defects.  I think it explains very well how one feels in our situation...

"When Time Stands Still"
by Debbie Hilton-Kamm 
It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

found on

I can honestly say it does get very depressing at times, more often than I would like.  But this poem resonated with me the truth about the raw emotion that comes with this type of event.  Every time I start to feel angry, upset, depressed, God (and also my wonderful husband) tells me it's ok to feel that way...for He created our feelings and He is more than willing to help us cope with them and act on our behalf as we ask for strength and courage.

I pray that no mother has to experience this...and for those of you that have, I pray that God honor you in a special way, whether it be to give you an awesome birth experience with future children or to allow your children to grow strong and healthy and be a living testament to what the Lord can do.

10.07.09 - One week ago...

Hard to believe it has already been one week since Liam was born.  Time has sometimes flown by and sometime stood perfectly still, but the Lord has done mighty works in this short period of time.

Liam is doing really well this morning.  His chest tube came out last night and the nurse bottle fed him for this first time this morning!  Huge praise!!  She said he ate about 38 ml, which is 3 times the amount he was getting before surgery - She said he sucked it down in 15 minutes!  This is not looking good for our grocery bill later on in life!!

He is sleeping peacefully right now.  His little angelic face is truly the joy of my life....I cannot WAIT to take him home so he can be all mine!!

Tuesday, October 6, 2009

10.06.09 - Good Night my Little One...

Liam has had a really great day today.  He was awake for a while this afternoon, but content and happy.  He even had a few bouts of the hiccups which is a good sign =)  It was so great to hear his little sounds again.  I really miss his little noises and whimpers.

They started him on a "food"  IV this afternoon to get him more nutrition than just the saline/sugar drip he had been receiving.  They even said by tomorrow morning they expect to maybe be able to start bottle feeding - so exciting!  He is also getting his chest drain removed hopefully tomorrow as well. 

I was thinking earlier today about Liam's scar on his chest and how blessed I am to have had a little boy.  How awesome it will be for him to show off that brave scar he has!!  I know at the beginning of my pregnancy, I was convinced I was having a girl.  But just as God always does, He gives us what was purposed and what He knew we needed, even when we had no idea what lie ahead. 

It is going to be a GOOD night =)  Thanks be to GOD in the Highest!!

10.06.09 - God Shines His Light on Us

It may be gloomy and rainy outside today, but inside the Lord is shining His light and glory all over our room with little Liam!  The first 24 hours after his surgery have gone extremely well and he is well on his way to being healthy again.

He had several IV's removed already and the biggest news is as of 11:00 am this morning he is off the ventilator!! PRAISE GOD!! I truly believe the breath of God is breathing into Liam's lungs to make them strong - What a mighty little warrior for Jesus he will be with the breath of God in him!

Needless to say, today is good! We have been blessed and God is moving mightily in our little one!  As I sit here watching the rain come down outside, the Holy Spirit is filling me with a sense of purpose in all of this.  I have since recalled several "miracle moments" that God had purposed so that Liam would be safe and in His hands:

The biggest miracle of all is defiinately the time of his birth - Liam was born ONE day premature....This was the ONLY reason the NICU staff was standing by to check him out after he was born.  Had Liam not come when he did, his heart defect probably would have not been discovered until much later, if at all.  The artery they kept open for him closes in most newborns after 72 hours of life...Which he would have been home by then on a normal circumstance and could have gone into cardiac arrest at home with us...Praise God for His perfect timing!

Liam's size and weight were very healthy for being early, which increased his chance of having a good surgery.

Liam was able to start feeding from a bottle once he arrived here at Medical City.  The nurses were telling us usually babies with heart conditions have to be tube fed and do not get to be bottle fed before surgery...causing them a more diffcult time feeding afterwards.  The nurses said he should have no problem being breatsfed because he has already had time to learn the suck, swallow motion right away.

There are many more things that fell into place just right, that other people might just consider to be coincidence, but I know the Lord orchestrated in our life to be where we are today with him. 

Monday, October 5, 2009

10.05.09 - All Settled In

Liam is in recovery now in the PICU Cardio Unit here at Medical City. We have our own room and a one-on-one nurse 24/7 here. Liam will probably be in this unit for at least a week before he can move back down to the NICU. I was suprised how short they said the recovery hospital stay time for his surgery was only about 10-14 days.

The afternoon has been an emotional one for me. No one can prepare you for what happens after surgery - the way he looks and all the machines on his tiny little body was very hard for me to deal with. I tried so hard to prepare myself and visualize what I thought I would see and how I would cope with it, but no amount of preparation was enough for what we experienced. I know many good friends and family have maybe experienced this helpless feeling before, but it was a lot harder than what I had anticipated...

But Liam is really doing very well. Both the cardiologist and surgeon stopped by to see him just a little while ago and said everything went as smoothly as possible during the surgery and that they were both very pleased with how he is doing so far in recovery. Dustin and I have been sitting with Liam for a few hours now and are learning a LOT of medical information...It's a little overwhelming, but I am grateful for the such wonderful nurses and staff who are caring for our little guy.

It's been a long day here, so I will try to post more tomorrow. And upon strong recommendation from the PICU Cardio nurses, we will be going home tonight to try to get some sleep. Thanks again for all the love, prayers and support from everyone. It really means a lot for Dustin and I, and Liam of course =)

10.05.09 - PRAISE Report!

Liam is out of surgery! Yea!! The surgeon said everything went perfectly, and they did everything as planned, with no suprises - Hallelujah!! We are so excited that everything went well.

The next 48 hours are critical for him so please keep praying for him to recover. Dustin and I are waiting to go up to see him, hopefully we can within the hour.

Sunday, October 4, 2009

10.05.09 - Sweet Time with Liam

This morning has been really hard for Dustin and I. Liam is doing really well right now, we just said our goodbyes and he is on his way to surgery. God is so good, this morning we arrived here about 5:00 am and we got to hold Liam until 7:00 am...What a HUGE blessing that have sweet time with our little guy before the surgery. I really cherished that moment with him. The Lord is soo good....The nurses all respected our time and it was so peaceful and quiet, we got to pray over him a few times before we had to walk him down to the O.R.

The surgery is supposed to take anywhere from 4 to 5 hours. There may be some other issues the surgeon has to fix besides just the stunt once he goes in. We were prepared for that, but praying that the surgery goes as planned and they won't have to go to Plan B.

We will keep everyone posted on his progress. Again, thank you SOOO much for everyone's love and support. Dustin and I appreciate all the messages and visitors we receive. God bless little Liam today for a smooth day!!

10.04.09 - Day before the Big Day

Liam's surgery will be tomorrow morning. We spent the whole day up at the hospital, as we have been doing since Friday, and it was a good day today. The nurses let Dustin and I feed him and change diapers when we are around for it, so that is great because it is the closest thing to actually holding him. We get to prop him up in his bed to eat and burp him. I never knew I would actually appreciate getting to change his diaper, but I really do cherish those times with him. Dustin does as well, and Dustin even got a taste of the little boyhood today as Liam pee-painted his shirt today during a diaper change!

Hospital days are long, and I am trying to heal, pump and spend time with my little one and get some type of routine down. Just as we are getting used to being in the NICU, Liam will be moved to the PICU Cardio Unit after surgery tomorrow. He will have his own room.

Well, it is getting late and we have a long day ahead of us. We plan on arriving tomorrow at 5:00 am so we can spend as much time with him as possible before he goes in for surgery. Goodnight my little Liam, may the Lord bless you and keep you, and may his face shine upon you! He is in GOOD hands!!

10.01.09 and 10.02.09 - Settling in at Medical City Dallas

Liam arrived at Medical City around 4:00 am on Thursday morning. Dustin rode in the ambulance with him from Baylor to make sure he arrived safely and to see where he would be staying.

Dustin and my dad made trips back in forth between Medical City and Baylor, between me and Liam. Lord bless Dustin for having to take care of two of us. I can not imagine how hard that would be to have the two people closest to you in two separate places, me trying to recover and Liam being prodded and poked and hooked up to machines. But it only reminded me of why I married him and I love him more today than I ever thought possible.

I arrived at Medical City at about 11:00 am Friday morning. My beautiful baby boy looked so normal and so healthy, it was hard to imagine he had anything wrong with him. We share a room with another baby heart patient who recently just had surgery. It was such a blessing, as they have the same cardiologist and heart surgeon as we do, so they have plenty of NICU experience and great wisdom to share with us.

Right now the Doctors are keeping Liam alive by giving him a drug called Prostin that keeps his PDA temporarily open until they have a plan for surgery.

We met with the surgeon, Dr. Eric Mendeloff, at 3:00 that afternoon, and he described Liam’s condition and explained there will be two surgeries. The first surgery which will be Monday, October 5th at 7:30 am. His procedure first involves opening up his chest and putting in a BT Shunt so that they can take him off the medication that he is taking to keep the PDA open. This will then allow the PDA artery to close.

The second surgery will be done later next year when Liam is between 9 to 12 months old and has had time to grow and get stronger, so that his heart is ready for the larger surgery which will build the valve in his right ventricle that feeds his lungs and patch the hole between his left and right ventricle.

10.01.09 - All Alone

Without my new son in the room, the hospital felt like more of a prison than a joyful place to celebrate a new life. Despite the wonderful friends and family we had to come and pass the time and pray with us while visiting (Sincerely thank you to ALL of you who kept us in your thoughts and prayers, we are BLESSED to have you in our life), the comfort they could provide lasted only for a short while before my emotional roller coaster began again. You never expect to be a new mom and not be with your baby. That was by far the hardest part for me to bear. I prayed continuously for Liam. Dustin and I had to encourage one another and keep reminding each other that this is “all in God’s hands.” I had always said at the beginning of my pregnancy that this is truly the Lord’s baby, and not my own. He simply blessed Dustin and I and chose us to be his parents. And if that were true, he is still in the Lord’s hands, forever and always.

It was also a new experience for Dustin and I as we are a relatively newly married couple having to cope in a new way, together for the first time for a family, and not just ourselves. It is a whole new dynamic for us, with both of us handling grief and emotions in different ways and trying to be there for each other. It has definitely grown us closer as a couple and also in our walk with God.

Finally, Friday morning I was discharged from Baylor and headed straight to Medical City to see my little Liam. What an anticipation I had, for I really had not seen my new son except for in pictures and video.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

9.30.09 - The News...

Around 10:00 pm, a NICU nurse came to speak with us about Liam's status. I of course thought they were going to tell us they just needed to keep him until the morning, but that everything was still fine. Well we received the shock of a lifetime as the nurse carefully explained that the heart murmur was pretty significant, and they had reason to believe with the testing they had done, they Liam had "multiple" heart defects that would need to be corrected with surgery as soon as possible.

The nurse went on to explain that they would be transfering him to Medical City as soon as the cardiologist arrived from there and reviewed his report for confirmation. The nurse just told us that Liam was not able to produce sufficient oxygen to keep his body alive right now, and they believed the heart defects were to blame. I immediately started panicking in my mind as I knew our whole life's course had just been drastically changed in the matter of seconds. It was amazing to me how God quickly reminded me that despite the plans we have for ourselves, he is in control of everything. It is always been an enormous leap of faith for me to surrender parts of my own life to the Lord, but when I was faced with putting my child’s life in his hands, I can’t even describe the feeling. “I know the Lord has purposed this for His glory…” I kept trying to tell myself, but honestly, I was scared and hurting because all I wanted to do was see and hold my son to comfort him, but I couldn’t.

The nurse told us after the cardiologist arrived, he would review the reports and come discuss what the plan of action was. About 12:30 am, the cardiologist (Dr. Amit Vermer) arrived and came to our room to discuss the defects he saw. His final diagnosis is called Pulmonary Artresia with VSD (ventricular septum defect). The website links show pictures so you can see where Liam’s heart is different from a normal heart.

9.30.09 - Little Johnson is Born!

The morning of September 30, which also happens to be my dad's birthday, was a normal morning juts like any other. My alarm went off at 5:45 am and like normal I laid around in bed until 6:00 when I finally decided I should start getting myself ready for work. I sat at the edge of the bed for a few minutes before getting up and experienced a strange contraction - a lot shorter and little more intense than the Braxton-Hicks I had been having for quite some time. I didn't think too much of it, but when I got up from the bed, I felt a little gush and thought too that was a little odd, but still didn't think too much of it. I stood there for a minute thinking to myself, "Is this it?" "Should I wake Dustin up?" then quickly decided to go eat some breakfast just in case this was the real thing, I wanted to make sure I was well fed! Through breakfast, I kept having regular little contractions which were less than 5 minutes apart. I started timing them, jotting down the times on the back of a random receipt I found on my bedside. I woke Dustin and told him he should probably get up and tsrat getting ready to take me to the hospital to get checked out. I finished getting ready, and we left the house about 7:00 am and arrived at Baylor Frisco at 7:15 am. They took me to labor and delivery and confirmed I had already dialated to 3 1/2 and my water had ruptured. It was for real!! I couldn't beleive it...
I was only 36 weeks and 6 days, scheduled for a doctor's appointment the very next day. Guess we wouldn't have to go to that checkup!

Labor was pretty intense the entire time. I received an epidural as soon as they could get one to me, but I had already dilated to a 5 by that time, roughly around 9:30 am. All the nurses were suprised by how fast I was progressing. The epidural was a great relief, but lasted only about an hour, when Liam finally dropped so low the pelvic pressure was so great I could feel everything again and there was not much the epidural could do for me at that point. They tried stronger pain medication, which helped for a brief time, but quickly wore off as the little one pressed harder down, just wanting to get out! Dustin in the meantime was a great coach, probably not expecting to have to coax me through the pain like he did, but he was SO helpful to get me to focus! I reached 9 by about 1:00 pm, and finally a 10 around 1:30 pm - Finally time to push!

My mom made a comment since he was already so far down, it probably wouldn't take much to get him out of there. Well, two HOURS later and with the help of the vaccuum (SOOO grateful for that little invention), Liam was finally born at 3:51 pm, weighing 7 lbs. 2 oz. and measuring 19 1/2 inches.

Because Liam was born one day premature and the fact the he is a boy (boy' have a harder time developing there lungs than girls do) the NICU was standing by just in case he had problems with breathing. Liam was crying pretty good when he came out, so things were looking pretty good in that department. However, upon observation, the NICU team noticed he was not breathing quite as strong as they wanted so they were needing to take him back to the NICU for more observations and to get him more stable. They let me hold him for about a minute and then had to take him right away.

They finally moved me back to my postpartum room about 6:00 pm. We shortly received an update from the NICU on Liam, telling us that he was on oxygen, he had a small amount of fluid in his lungs and that they also noticed he had a heart murmur. They reassured us that these were all normal things that a lot a babies are born with that just need to be monitored for a bit. I was not too concerned at this point since they seemed to think in his case, this would be nothing more than a blip on the radar and we would soon have him in our room with us.