...preserving the beauty of everyday moments...

Thursday, March 24, 2011

Three weeks out...

"...Every blessing You pour out, I'll turn back to praise..." this song came on as I was driving today and could not have expressed my heart more perfectly. We had Landon's three week post-surgery follow up with the cardiologist today. I am just so thankful and blessed.

I am thrilled to say our little miracle man is doing excellently. Dr Pliska was very happy with the repair that the surgeon's were able to do. There are no longer any holes in the center of his heart. One valve has very minimal leakage and the other is slightly smaller than normal but neither one is anything to be concerned about. All the chambers of his heart are normal size and there is absolutely no fluid surrounding his heart- so things drained properly after surgery. His echo shows that everything from surgery has continued to heal as they repaired it. His growth charts had showed a plateau or even a slight decline in his weight gain before surgery. He now has a huge jump and they are expecting him to keep climbing based on his progress so far. His incision is healing beautifully- we have had no signs of infection whatsoever. Normally, they would have had us go in two weeks from today for another check up with the cardiologist but since he is doing so well- they bumped it to three. We have the follow up with our surgeon this coming Monday and I am sure we will just be hearing more good things.

I have to say the whole ordeal has actually been easier than what I thought it was going to be. His recovery has been amazing. He is a different baby. He is STARVING all the time- so different to get used to- a wonderful different though! He used to go up to 5 hours between feedings and never complain about being hungry... and now- it is consistently every 2-3 hours and the 1 1/2 minutes it takes to warm a bottle makes him MAD because he is staaaaarrrrrvvvving! Plus we no longer have the tummy troubles we were having the first three months of his life and I have almost switched him over to completely formula. I am so happy to be about done with pumping- it is such a pain! As a friend of mine says, "I am a slave to the pump" I am down to just twice a day and the time it free's up is amazing- no more being chained to the chair for 20 minutes while the two year old gets into trouble every two hours...plus I don't have wash and sterilize all that stuff too. We made it to the surgery (and through flu season) on breastmilk- which was my goal. He is eating almost double of what he was eating before surgery in about half the time. We came home 6 days after surgery and within a few days- he started trying to roll over. He is soooo active and wiggly now. and HAPPY. Our little man is soooo very happy- he coos, blows bubbles, chews his little fists, drools like crazy, "talks" and smiles anytime anyone looks at him. If he thinks we haven't given him enough attention, he'll start to complain and as soon as you come over to him he just starts smiling and talking to you. He loves his big sister and will smile and talk to her the whole time she is near him. The more she bumps him around- the bigger the smile- sorta like he's thinking, "isn't my big sister so much fun?"

The adjustment of Nathan deploying has gone pretty smoothly. Of course, we miss him terribly, but life has settled into a predictable routine. I probably miss him the most when Ariana asks for him and I have to explain that he is "at work" and will be gone a long time, but we get to talk to him on the computer. She has loved webcam. We use yahoo messenger and you can also call through it so she is able to talk to her hearts content and tell her Daddy all about her little life- potty triumphs, Mona, shopping, what she did, who is the favorite stuffed animal of the day, etc. She brought him books to read to her the other day. She seems to have adjusted pretty well and I haven't really seen any acting out other than the normal two year old stuff we have already been dealing with. I know we will have yet another adjustment when Mom goes home but I don't think it is going to be too difficult. Mostly the lack of adult companionship but hopefully by two weeks from now, we will be able to get out more if cold/flu season proves to be over.

Thank you all so much for your love, support, help and continued prayers. We still have weeks of healing left but things are looking soooo good and his care is not much different than what it would be for a normal baby- more doc appointments and different ways to hold and burp because of his chest...but other than that we just get to lavish our love on him and watch him grow.

Friday, March 4, 2011

Boring is good...

Today has been a bit of a boring day...but that is exactly what Landon's doctors ordered. Not a whole lot of changes but a lot of rest and healing. Our little man has had a few more things taken out- he finally has a hand free which makes him so happy! He has been waving it around like he is conducting an orchestra all day and he has his favorite "chew toy" back! He also has gotten his smile back and is becoming QUITE the ladies man! All the nurses are charmed by this sweet bundle of preciousness. We even have nurses from other rooms popping in to talk to him, just to get a smile from him...it makes our day too.

He is pretty much strictly on oral meds now, which also means he is back to his old tricks of slyly spitting them out the minute you think he swallowed them. He has been eating pretty good a few nice big bottles and then some smaller ones as well. Seems like the morphine causes him to be snacky but if it has been awhile since his last dose of that he is HUNGRY!

He is scooching around like crazy, we have to keep postioning him so he doesn't scooch right out of bed. It's almost like a puppy- when you talk to it the dog is so excited that their whole body wiggles...that's Landon- we talk to him and those little arms and legs start going like crazy. He has been pretty comfy all day- didn't need as much morphine as yesterday.

Hopefully tomorrow the chest drains can come out- they were still draining a little bit today so we had to wait. It looks like sometime early next week, we should be headed home- which is scary and thrilling at the same time. Most of his care will be the same but of course, we have to pick him up differently and be careful of his chest. The incision site is looking good- healing very nicely. I have been given the ok for diaper changes- so I am now back on "poop patrol" (coulda lived a few more days without that!) but it is nice to be doing his normal care. I get to feed and change him and have learned how to burp him.

So all in all, its been a pretty quiet day here but we're just following doctor's orders. :)

Thursday, March 3, 2011

Today has been another good day here at the PICU. It is so delightful to come in each morning and find yet another advancement in Landon's recovery. He has been taken off the "pacer" so his little heart is doing its own thing now. He had his dressings changed and one of the leads to his heart taken out. He has also been weaned off of all of his medication "drips" and is down to tyelenol and morphine for pain. And he has been much more alert- even attempting to smile and talk to me. Quite a bit of his swelling has gone down, so he is starting to look a little more like his normal, handsome self. He did get pretty mad at one point today- I think it was probably pain related- which caused his blood pressure to skyrocket. They still want that to stay pretty low but broadened the range of what is acceptable. He has been staying on the low end of that scale- which is marvelous. His surgeon and cardiologist have been delighted with the progress he has been making. He is eating again- more "snacky" which is expected. He hasn't had a bowel movement yet and his poor tummy looks like he definitely needs to! Hopefully, that will happen some and relieve some of the extra discomfort he is feeling.

It looks like tomorrow may hold removing the two chest drainage tubes, weaning off of oxyegen, and getting rid of a few other lines/tubes...Before we know it we'll be moving out of ICU to a more intermediate care (if there is a room available- otherwise we get to stay here).

Nathan and I ran out to Target to pick up a few things today and have just spent the day chilling out here in Landon's room. It's been nice to get this extra time with him. He did get a text message telling him to be ready to fly out the 15th, so I am especially grateful for this one on one time with him.

Thank you all for continuing to keep us in your prayers- we still have a long road ahead of us and we will be having alot of adjustments in our near future. God's peace and joy have been very present with us and I know that is a direct result of prayer. Thank you!

Wednesday, March 2, 2011

And so starts the recovery road...

Landon had a very good night! :) We were told to expect some up and down throughout the night- a sort of balancing act of increasing/decreasing medications and such to keep him calm and comfortable. Ronald, our night nurse, only had to adjust things twice! So Landon did excellent and was pretty quiet through out the night.

Nathan and I had a pretty decent nights sleep considering everything that had gone on yesterday and how exhausted we were. I did wake up a few times during the night, but thankfully, I was able to drop right back off. We got up around 8 this morning and we were out the door in about 15 minutes to come see our little man. As we drove around the parking lot, I get this happy feeling inside the closer we get to the entrance for the PICU- I'm gonna see my little boy soon! It is amazing how completely they steal your heart and how empty it feels when they are apart from you. It kills me to be apart from my little girlie right now but I know that this is where I need to be and she is in very good hands. (thanks Grammy!)

When we got here this morning, they had already started weaning him off the "vent" and decreasing some of his medications. We are waiting for him to wake up so they can take the breathing tube out. He keeps wiggling around his bed, especially when we touch or talk to him and he is trying sooo hard to get those eyes open. He has always been a very active, little guy- inside and out of me! He is a bit more swollen (fluid retention) this morning but really not too bad- you only really see it around his eyes. They are starting him on a dieuretic to flush some of that extra fluid from his system before they actually take out the breathing tube. His oxyegen levels have been very good- it is so comforting to hear the nurses report stats to each other and then hear them say, "beautiful"

He is doing excellently and we just praise God for all He has done for us. His hand has been so evident in our little one's life. "Then they will know that your power has done this; they will know that you have done it Lord...I will thank the Lord very much; I will praise Him in front of many people." Psalm 109:27,30 It is so comforting to know the One who created this marvelou,s little person is still holding him and working in his little body.

Surgery Day

First of all, I want to thank all of you who have kept us close to your hearts today and lifted us in prayer. While this has been a traumatic thing to go through and yes, our nerves were a wreck, we have felt God's presence and peace with us. As I read my Bible in the waiting room, I came across this verse- "Let them give thanks to the Lord for His love and for the miracles He does for people." Psalm 107:8 I can say that our hearts are filled with thanksgiving to our wonderful Lord- thankful that each step of Landon's surgery went smoothly with no complications, thankful for the AMAZING team of doctors and nurses he has, thankful to be with our little man here in his room, thankful for how well he is doing, thankful that Nathan is here with me and that Mom and Ariana are doing well at home...thankful that this surgery is now behind us. God's goodness is abundantly evident in our lives right now and I can only rejoice at the outcome of this day.

Last night was hard. I did not feel strong enough to go through this. I laid on the bed with my baby and sobbed my heart out- wishing that I could clutch him close to me and just run away from it all. Denial does not work...which totally sucks. Nathan and I both slept really well- right through the alarm this morning. :) We reported here to the hospital at 0600 and we woke up at 0540- it was a mad dash to get dressed and out the door. Thankfully, the Ronald McDonald house is right here at the hospital so we were able to walk here this morning. About 0700, they called us back and started the process, getting his vitals, meeting nurses, etc...They took him from us just before 0800. One of the hardest things I have ever done was let them take my baby- knowing what they were going to do and all the risks that are involved. I couldn't even handle thinking about the "what if's" I had Nathan sign the consent forms and read over the risks- I figured, I would deal with it if I had to, but I didn't need to give my mind any more fuel for worry.

They kept us informed and busy during the surgery so the morning actually passed more quickly than what I thought it would. We met his nurse- yup, our little man has his own private nurse- no sharing here! Got a tour of his room here in the ICU and everything was explained of what to expect to see on him when he got here. He is in the Nemo room :) The hardest part of the whole wait might have been after they told us everything was done and that we would be able to see him as they wheeled him from the OR to his room. Every door opening/closing, footsteps in the hall, etc. had us peering out the doorway...it was soooo disappointing to have it be just a janitor's cart but FINALLY, our little man did come. He was still sedated(and still is) and has a "jillion" wires, tubes and monitors but we were able to kiss the top of his head and whisper our love before they got him settled into his room. We met with the surgeons at that point. Surgery went well- no complications or bad surprises. He did need a bit of blood but other than that nothing major. He is currently on some medication to keep his blood pressure down- basically, his heart is pumping faster so not as much is filling his heart at a time, so that keeps the stretching to a minimum and all the stitches in place. He is on a respirator, which hopefully, he will be weaned off of tomorrow. He isn't too swollen but they say he might swell some overnight and tomorrow. He is doing exactly what he should be at this point.

His room is Grand Central Station right now- lots of nurses and doctors popping in and out but everything looks good. The goal tonight is to keep him sedated and quiet- to let his body rest and for initial healing to start taking place. At this point, if everything stays as it is now and heals- he should not need surgery again down the road. So that is our prayer, but we know that we will have the strength to face it if we have to at a later date.

Nathan and I are pretty emotionally and physically drained. (He is sleepig on the couch in here as I write) We will probably sleep at the Ronald McDonald house tonight since we really need some good sleep. He is sedated and there will be lots of in and out here, so I think we will all fare the best if we sleep there. But I know I will be so anxious to run over here first thing after I wake up!

So here we are towards the end of a very dreaded day...we are battle weary but rejoicing. Thank you for all the support you are. Your prayers and comments have touched, encouraged, comforted and strengthened our hearts. We are so blessed to have had you all here at our side through this!


About Our Family...

My photo
We are a family who was birthed through God's incredible goodness- joining our hearts and lives in a way we call miraculous. Nathan and I were married April 11,2009, which just happened to be one of the most perfect days in our lives. Ariana is our beautiful, two year old daughter, that we thank God for every day. She brings so much joy to our lives and delight to our hearts. Landon joined us six months ago. He was born with a heart defect and had open heart surgery at three months of age. We are so grateful for his speedy healing and this happy, healthy baby boy! We are an Army family- this is Nathans' thirteenth year serving our country. We recently moved across the country and are loving the life God has blessed us with. Our life is simple, but its beautiful to us and I pray that you are blessed by the beauty that we find in it.