Quick Update from Home

We're on our 2nd full day at home now and Landon is doing well! He hasn't gotten down good patterns for eating and sleeping quite yet (he was up 4 times last night between 10:30 and 7am- maybe that's normal for a baby but it's a little much for mommy!) but he seems to be taking steps towards 60 ml every 3 hours, which is where they want him.

The home health nurse came yesterday and did an assessment and weighed him (his weight was up, but it's also a different scale than he's been on before, so have to take that into account) and she'll be coming by twice a week for at least a few weeks. He has doctor's appts tomorrow and Friday, so it will be my first time venturing out with him! (Should be interesting)

I'm still getting in a rhythm too of all of his basic needs plus giving him meds (which he hates), checking his SATs a few times a day with our rented pulse ox, and eating and sleeping for me too! Thank goodness my mom (Grandma Harris) has been here to help us get settled. She leaves tomorrow morning early so it will just be me and Landon for a few days and then Gary's mom comes in this weekend for a week.

Today it's snowing here and it was really windy yesterday so I haven't even been able to take him on a walk yet! Hopefully the weather gets better before it gets worse (this is Colorado after all, it could be 75 tomorrow) so we can have some time outside!

As tiring as it is and will continue to be to have Landon's care 100% on us now that we're home, it is such a joy to have our son home! And just in time for his 1 month birthday yesterday!

We Made It!

Landon is home!  It's going to be a busy night and week, but we are so grateful to be back home and to have our son with us!

Thank you for your prayers!  We'll continue to post pics and more about how he's doing in the coming weeks.

Here we go!

We're heading out now! It was a long afternoon of trying to pack up, get last meds, feeding, etc. Landon and I are just waiting for Gary to pick up prescriptions at walgreens and we'll head out the door!
Of course we're heading out into denver traffic right at 5 pm, but isn't that what you would expect? Who cares, we're going home!

All systems are go

We're still planning to leave the hospital today (yay!). We're working on getting prescriptions and all the final steps to get this kiddo out of here! There are apparently a lot of other discharges today from the cpcu but we're hoping to get everything squared away so we can leave in a few hours. We'll have so many appointments this week that Landon will hardly know we're at home but mommy and daddy will surely know it!

Praise God for carrying our son through and for having a plan for every day of his life!

Right on Track

Landon is still doing really well and now meeting his daily goals for eating!

Ready for a math lesson? They want him at about 100-120 kcals per kilo per day. He is now 3.50 kg (they use kilos in the hospital, which is very confusing. That equals 7lb 11 oz, up 1lb 2 oz from birth) so he should be taking 350-420 calories per day. He is on breastmilk that is fortified to 26 calories per ounce so he has to take 13.36-16.15 ounces per day to be considered at his "goal". Since he eats so little at a time, we measure it in mL instead of ounces and there are 30 mL in an ounce, so his daily goal in mL is 404-484. Yesterday he ate 406 not including the few minutes that he nursed so he is just within his goal range.

He does tend to "snack" quite a bit so he is often taking small quantities since he runs out of steam while feeding. They are ok with him doing this for now, but in a week or so when we come back for a clinic visit, they'll want him to be moving more towards feeding in larger amounts every 3 hours. He did gain some wait from yesterday to today so that is great news and he is scheduled to discharge tomorrow! He'll have another carseat challenge this afternoon since it has to be within 3 days of discharge and the last one was over a week ago. This will be his 3rd one and I'm hoping he sleeps right through it just like he has before!

Last night all 3 of us (Gary, my mom and I) got a chance to go out to dinner with Gary and I's friends from Colorado Springs, Danielle and Jared. They met us at D Bar closer to downtown Denver and we had a great time. It was so nice to get away from the hospital for a few hours (when you're here day and night, being gone for 3 hours feels like forever!) and have a nice meal and be able to take your time a little bit. We are so grateful that we've had some friends drive up to see us from the Springs! It takes away the feeling of seclusion and we are so eager to get back home and introduce Landon to many of our friends! After we get home it is certainly going to be a hectic week! Gary will be trying to work most of the week and we'll have appointments with the pediatrician, cardiologist and one back up in Denver. Still it will be nice to get away from the chaos of the hospital and establish a routine!

He has still been tachypneic (breathing at a high rate) which I don't think is a major concern but they've done a few xrays to make sure he doesn't have fluid in his lungs or anything and those have all come back normal- except the one from this morning which I haven't heard back about yet. Everything else is looking good and we are just praying for no more complications so we can go home tomorrow.

On a Roll!

Landon is keeping up pace with eating and doing great! We're basically offering him food whenever he's acting hungry- hopefully one day we'll be able to establish a little more of a "schedule" (for mommy and daddy's sanity!) but for now we're happy to let him eat as much as he wants!

As of today they are projecting a discharge date of Monday. I had hoped they might send us home over the weekend but they said they don't like to do that with babies who have a serious heart condition since there is limited support over the weekend if we call them with an issue. And if we had something come up we'd end up having to bring him back in for that reason. So Monday it is- hopefully this discharge date sticks! We've done as much as we can so far in terms of our "duties" in getting him discharged- patient education and all that stuff. Pretty soon we'll be making appointments with the pediatrician and cardiologist in the springs and get some times set up with the home health people that will be coming by for assessments (so he won't get totally out of being poked and prodded).

They pulled him off his IV fluids since he's eating enough now to maintain good hydration (yay!). His weight was actually down this morning from yesterday but they also increased one of his meds that is a diuretic (pulls off excess fluid in his body) so that and taking off the IV fluids could play a part in that. Hopefully he'll prove himself weight-wise of the weekend. The other great news is that he's looking like he'll be able to go home without an NG tube! I am SO excited at this possibility and I'd be happy to call the company that dropped off the rental for that and tell them to come back and get it!

Thanks for your continued prayers. We had no idea we'd be in the hospital for 4 weeks when all of this started but I'm starting to see an end in sight, and it involves finally being able to put him in cute baby clothes at home!

He's Heating up, He's on fire!

Landon has done fantastic over about the last 18 hours. He has slept very well, continued to wake up on his own to feed (not quite every 3 hours like they want, but getting closer!) and is taking increasingly larger quantities. For the last few days now he has looked much more comfortable while feeding and isn't showing signs of pain which we think means the acid reflux meds are finally working well. Hopefully before we leave the hospital he'll be down to one of those, but one step at a time!

It is such a relief to see him actually look content while he eats and to know that he's finally starting to get closer to consuming the amount of calories he needs! Thank you so much for your prayers- God has been so good through this whole process. We know that He is control, even in situations that may be difficult, and it has been amazing to see Him provide encouragement for us just when we needed it. On Tuesday I told Gary when he got to the hospital after work that I didn't think I could do another day like that. It was just so hectic with nonstop hospital staff coming to see me for a million different reasons and with phone calls to set up things like home health care, etc. And that was all on top of the fact that he was seeming to be in pain and eating terribly with no signs of improvement- not to mention me being exhausted in so many ways. Then yesterday was just a totally different day- things were a lot calmer with visitors coming to do "business" and he started to show an interest in eating again. And as little sleep as I've gotten, I felt so refreshed in knowing that things were starting to change for the better.

Knowing from the beginning that this would be a tough journey, I feel like we have tried to take very little for granted, but after the last few weeks I am SO happy to see him eating well and improving almost hourly. No exact word on when he will go home- he's still got to prove himself for a little bit longer with his quantities and his weight gain, but we're hoping it will be very soon and that it will be without an NG tube (feeding tube)!

Turning a corner! (we hope)

So just an update. Over the last 3 hours Landon has eaten pretty good amounts twice already and still seemed hungry so Gary is feeding him again now!  It seems like maybe some of the meds he's on are finally helping with reflux.  I don't want him to get overfull but right now we're letting him eat as much as he wants because he needs it so bad!

Please pray that he continues to let us know when he's hungry and that he continues to actually eat!  Right now I'm trying not to think about how he'll do tonight and tomorrow but celebrate the fact that he's finally eating voluntarily!

Hoping we're headed uphill from here!

Sorry I haven't posted much the past few days. It has been a pretty frustrating and overwhelming week for all of us, especially me (Allison). Seeing Landon eat less and less and fall asleep during feed after feed when I know he must be hungry has been really hard. There has been a constant stream of people and activity and I joke that if I try to pump, go to the bathroom or take a quick nap (5 minutes, 10 minutes, anything!) someone will inevitably come in to talk to me.

It's such a struggle because a hospital is a terrible environment to try to establish any kind of schedule and get quality uninterrupted sleep because of the constant stream of activity. Tests, vitals, monitors alarming, people coming in and out- it doesn't exactly make for a relaxing atmosphere. However, in order for Landon to heal enough to get home, he has to sleep really well so he has the energy to feed and gain weight. It feels like a catch 22 and a neverending cycle. This morning he ate a little bit more than he did all night (after 30 minutes of coaxing him with an occupational therapist by my side) and then he got upset after eating when I was giving him all his medications (6 of them now) and he threw up everything he had eaten and all his meds. Of course this happened during "rounds" when there were like 8 people in the room listening to his heart and stuff. He hasn't ever really thrown up significant quantities like this so I'm hoping and praying that it was a one time situation. It's pretty common for babies with heart surgery to have problems learning to eat again, so it's not a rare or particularly alarming situation, just challenging (even for the docs) to figure out what is going to work to get him back on track.

This afternoon he ate a little bit more too and seemed to not be in as much pain while eating due to the reflux- hopefully some of the meds he's on for that are finally starting to make a difference. He's no where near the "goals" they have set for him but I'm hoping he's on an upswing and that he'll really start to get this rhythm down of eating and sleeping enough! No word on any estimated discharge date as of right now. I'm pretty sure they'll at least keep him a few more days even if he does rev up and start eating great. Going home with a feeding tube is still a possibility if he doesn't get up to the volume and calories they want him to be getting in thr next few days. I'm not thrilled about taking him home on one, but we will do whatever we can to get him home now and I think just getting home in a little more relaxing environment will help us figure out the best schedule for him. They're saying that they're going to let him eat "on demand" all day today so instead of waking him up every 3 hours or so to eat (which often doesn't work anyway since he's so sleepy that he can't stay awake to eat), we'll let him sleep as long as he wants to and then wake up when he's ready to eat.

Please continue to pray for Landon and also Gary, my mom and I. It has been a physically, mentally and emotionally draining week for all of us and I know we could all use some encouragement.

Holding Tight

Landon had a good day today, but we're still at least a few days away from going home.  He's eating more than the last few days but is still not taking my mouth what he needs to be. They are making up the difference in the feeding tube at each feeding from what they want him to eat and what he takes. His milk is also being fortified to an even higher calorie count to help him gain weight, which he has not done over the last several days.  He did get to nurse a few times today too which went well and he did a great job of getting the hang of it. We'll have to alternate between the bottle and nursing so he can get the fortified milk, but we're glad he's tried and gotten used to both.

We got the pulse oximeter delivered today that we'll take home and were instructed how to use it so we're a step closer to heading home in that sense.  Gary was able to go to work today, which also did a few days last week to try and stay caught up and conserve days off for future surgery, etc. His work has been so great to let him take so much time to be with his son in the hospital.

Right now we're just hanging tight for Landon to gain some weight and pick up his eating.  We know he'll get there soon!

Feeding Tube

Landon continued to not eat too well overnight, even with feeding every 2 hours instead of 3. He seems to hit a wall after eating pretty well for a few minutes and then seems to be uncomfortable or in pain and just won't take anymore. We've stayed overnight the last few nights to try and help with feedings so it's been good to be so close by but hard to see him get upset at pretty much every feeding. They've added another acid reflux med and tylenol to his med schedule (so he's up to 5 now) so we're hoping that once these have some time in his system they will help with any discomfort from acid reflux and residual pain from surgery and all his incisions and such.

It sounds so trite, but the poor guy gets hiccups constantly it seems, especially when he is mad and then the hiccups just make him more angry. I guess frequent hiccups are common for infants but it's so sad to watch because they shake his whole body and probably hurt more because of his surgical incision.

This morning they decided to put a feeding tube in that feeds through his nose and straight down to his stomach. That way even if he gets tired during a feeding he can still get the nutrition and calories he needs. They have upped his fortification so he doesn't have to take as much quantity to get a good calorie intake. They'll continue to let him eat every 2-3 hours and then supplement what he eats through the feeding tube, likely during the night hours so he can basically sleep through his feedings and get some good rest but still get the food he needs.

The tube was just put in a little while ago and he hated that process- it's so hard to watch your infant be in pain or frustration and not be able to do anything to help. Luckily he usually calms a little bit when he is held, so that is one "go to" that we have but no other comfort measures are guaranteed. He does like his pacifier quite a bit, so we've thrown the "no pacifier for the first month" rule out the window (we didn't have much choice since he got it in the NICU on day 1) and just let him have whatever soothing methods he can.

They've said that it's possible they would send us home on the feeding tube, but I get the impression that they'll keep him here for a few days and watch his eating and his weight gain (he hasn't gained anything in the last few days). We're still not sure how the feeding tube will affect his apparent acid reflux, but hopefully as those meds start to kick in more it won't be as much of an issue. I imagine we won't go home before Tuesday, but no official confirmation on that.

Please pray for Landon's comfort with the feeding tube now that he hasn't had any tubes for a while and that it won't deter him eating on his own. Also for patience and strength for Mom and Dad since we are starting to get worn down from having to see him in so much pain and discomfort and just wanting to take our son home!

Not Quite Yet

Well after Landon started out feeding really well yesterday he kind of took a downturn and started not eating as well later in the day. He's continued to have a really hard time settling down to sleep at times and then he doesn't get as long of a nap as he should which gives him less energy to eat later. It's a vicious cycle!

It sounds his slowdown in eating could be a combination of him just tiring quickly during feeding (which is common for heart defect babies) and possibly some acid reflux (also common for babies in general). So they want to keep him a few more days to see how he continues to eat and see him gain some weight. We may have to try and feed him small amounts more frequently but his sleeping patterns make it difficult to move his feedings closer together. We're just having to learn what schedule will work best for him and adapt to it. During the later part of yesterday we realized we probably would not be heading home today so we were prepared for it, but we are still eager to take him home soon! Hopefully it will be Monday if we can get him back on track with eating over the weekend. Thanks for your continued prayers!

Carseat Test #2!

Landon is in his car seat right now for the "challenge" they make him do before he can go home. He has to be in his car seat for an hour and a half hooked up to all his monitors and stuff to make sure none of his stats will go crazy from him being in the car seat. We did this in colorado springs too but when they transferred him it became a moot point. (Or a moo point, like a cow's opinion). He's doing well so far and sleeping so we hope he stays that way all the way through it! This is one of the many things we have to do before discharge. We're trying to do all of our video watching, pamphlet reading, etc to be ready for whenever they want to send us home!

We could go home as early as tomorrow, or it could be Monday, depending on what they think in the morning about his eating and weight change and if we can get the equipment we'll need to take home with us. He's eaten well so far today, 53ml and 42ml and they want him to be at least 40 so he's just got to maintain the pace! They are going to start fortifying his milk today so he gets more "bang for the buck" in his eating. It sounds like we'll go home with him on 3 meds that we'll have to give him by mouth through a syringe and a pulse oximeter which measures the oxygen saturation level in his blood. It's pretty cool, it just have to be strapped to his hand or foot, don't have to draw any blood. From what I understand we'll just have to take his sats daily, he won't have to be continuously hooked up to it like he is now.

That's all for now- everything else continues to look good- I think they are ordering an x-ray later today to check and make sure all his insides are doing well with the resumed feedings. If all continues to go like it is now we should be headed home soon!

Gearing up for the real deal!

Landon is continuing to do well with eating. They have upped his amount a few times over the last 24 hours so he's now eating 24 ml every 3 hours (which still is not very much) and still eating it pretty quickly! We fed him a few hours ago and he didn't eat quite as fast but they still have him on the TPN & lipids by IV so when they cut that off later tonight, he will get much more hungry and hopefully rise to the occasion of having "all you can eat" feedings tomorrow!

If all continues to go well (his gut reacts well to the food we've been giving him and he doesn't have any other complications come up) we could go home this weekend! Like I said before, we're excited for the possibility but not holding our breath!

It's Chow Time!

I didn't post anything yesterday because there wasn't much new to report. Gary went back to work Monday and Tuesday to get a few days in before Landon's feeding frenzy and Landon continued to be hungry and hard to console. He has progressively taken longer and longer to settle down over the last several days after getting worked up but we're hoping getting back to feeding will help!

He ate for the first time since before surgery (9 days ago!) this morning. They are keeping him on TPN & lipids (his IV nutrition) while he's eating small amounts to make sure his "gut" will tolerate the food ok. We fed him 9 ml this morning (basically the amount in the bottom of a drink that you and I don't bother finishing) and every 3 hours or so he'll continue to get that same amount. If he does well, they'll double that later this evening and continue to increase his amount if he does well over the next few days. As a point of reference, he had eaten up to 90 ml before surgery when he was actually eating so this amount is quite small. He seemed very happy to finally get something to eat and took well to it (not all babies take back to feeding right away after surgery) but he was obviously not full. So it will still be a long hard day because he won't be able to eat until he's satisfied, but at least now he knows that we're not going to starve him forever! Hopefully as we continue to feed him and increase the amounts he will get more and more comfortable!

Some More Pics

Allison's first time holding Landon after surgery

Grandma Walenga's first time holding her grandson

Papa Harris's first time holding his grandson

Dad with his son

All of Landon's gear post surgery

Walenga family photo

Mom with her son

Holding Steady

Landon has continued to do well the last few days and we haven't had any more surprises (yay!). He's been sleeping really well although sometimes it takes him a while to calm down from some of the not fun parts- diaper changes, administering meds, x rays, changing the dress on his central line, etc. There are lots of things to hate, so I don't blame him! He's just so cute when he's peaceful that you can't help but hate it for him when he's upset- I guess that probably goes with any kid/parent.

Yesterday was Gary's birthday and it was pretty low key- we didn't do much yesterday but Saturday some of our friends from Co Springs came up to surprise him and we went out to dinner. Since things got so hectic while we were in the hospital in Co Springs and then we came up here, we haven't seen most of our friends in a few weeks. It was great to spend a few hours away from the hospital and enjoy hanging out with them. It makes me excited to get back home to our community and bring our boy with us!

I may have already mentioned this, but once Landon starts eating again, how he does with that will basically be his ticket out of here as long as everything else stays the same. If he picks up where he left off as far as eating goes, then he should have no trouble going right back to it and getting out of here soon, which means we could be going home by the end of the week. We're hopeful, but we know how quickly things can change! Right now we are just so grateful that God has sustained him and helped him heal so quickly! I'm in awe that he had open heart surgery just a week ago and the only pain killer he's on right now is Tylenol! Landon continues to be a trooper and God continues to be good!

Hey People- I'm HUNGRY!

Today has been relatively uneventful except for Landon continuing to be unhappy that we won't feed him (man I wish we could). He was fussy most of the morning and feel asleep at 1 and has been sleeping solid ever since (About 4 hours).

It's great when he's asleep because it means he's not awake realizing how hungry he is- it's hard to console him when we can't give him the one thing he wants! Otherwise though, he's been doing good, his stats are staying at good levels and he continues to be a little trooper. He got the last tube out of his nose, which I hope makes him a little more comfortable, and it definitely increases his cuteness factor. It's just going to be a long few days until we can feed him again (again, I feel like I said all of this yesterday).

I can't believe tomorrow my baby is 2 weeks old! And I can't believe that tomorrow my husband is 30 years old! Happy Birthday Gary!

Up to the 9th floor!

Landon had a good day, he got moved up to the CPCU just like we expected and did pretty well the rest of the day, except for being upset for a while this afternoon. He got a private room which is nice cause it's a little quieter than the open space of the CICU. He's starting to act pretty hungry and while the nutrition he's getting through IV will help, he'll still feel hungry which will be hard since we can't feed him for several more days.

So when he wakes up, he seems to do so with a vengance, whether it's due to hunger or pain. Now the only thing he's on for pain is tylenol as needed which is good.  His scar from surgery is looking better each day but it's definitely a reminder that but our 12 day old has been through open heart surgery!  It's also a reminder that God brought him through surgery and continues to heal him.  He's only got one thing on his face now, a tube in his nose, which might come out soon. This is down from 4 (just on his face) so he's starting to look more like our sweet baby again. I'm sure I said that before, but it's so nice to see him get closer and closer to "normal" looking again.

No plans to change anything else that we know of, just trying to get him to sleep as much as possible so he can continue to heal!

A Room with a Different View

Landon had a great day and night yesterday. He got several more lines out, including catheter, 2 of his IV lines, breathing cannula, and several more things. He's down to just a few meds, a tube to draw the acid out of his stomach (since he's not eating right now) and the monitors.

He's been such a trooper through this whole thing and we're happy to see him much less tethered and looking more like our sweet baby again! He's really enjoyed being swaddled and held the last few days and we've enjoyed getting to hold him! The nutrition they are giving him should meet his needs but doesn't fill his tummy so he'll still get hungry until we can feed him again, but we're told not as hungry as he would without the IV nutrition (TPN & Lipids).

We just heard that they are probably going to move him from CICU to CPCU (Cardiac Progressive Care Unit) today. This is a step down in the level of care because they don't feel like he needs intensive care anymore (YAY!) This means he will no longer have a dedicated nurse (They've had him at 1:1 with a nurse since surgery) but it also means he shouldn't need it and that we'll have a private room, which will be nice. Where we are is a pretty open floor that has curtains that separate some of the units so it will be nice to have a barrier to other kids crying and other monitors alarming and stuff.

Some of the grandparents are headed back home today but my (Allison's) mom is staying with us for the time being. It's been so great to have them here and let them meet their grandson! He is the first grandkid in my family and the 2nd (but the first boy) on Gary's side.

We are thrilled with how well he's done these last few days. He's like superman- leaping multiple heart meds and IV lines in a single bound! :-) Really we know that God's hand has been on him and has given him the strength to endure all of the pain and frustration of the last 5 days. We know that the Lord will continue to provide him the strength to handle the recovery and future surgeries. Thanks for all of your love and support- it has meant so much to us that there are literally people all over the world extending their love and praying for our son!

Breathing Tube is Out!

Making some progress today. Landon finally got the breathing tube out this morning. Mom is holding him as we speak. We will post pictures later. Overall he is doing much better but still has a very long way to go. Due to an inflammation in his stomach, which they are treating with antibiotics, they said he won't be bottle feeding for 7 more days! They are giving him lipids and other things through an IV to sustain him until that day comes, but it is going to be real hard to wait that long before I can feed our little guy.

Mom is much happier this morning. Holding him changes everything. We can finally hold him and comfort him some. Plus his cuteness went up again without that big clunky tube shoved down his throat. His right arm is like IV central. He has 3 IVs right now in his right arm.

Please continue to pray for his recovery process and that his saturations and breathing continues on an excellent course. Thanks for your support! Pictures will be posted later of momma and Landon.

Turning a corner

We got a great report from Landon's night nurse, who we had 2 nights in a row and was amazing. She said he did well all night and remained very stable. The only thing they are kind of worried about at this point is his stomach. It has been a little swollen since surgery and Landon is showing signs that it is tender. They have done several x rays and it looks like his intestines is a little inflamed on one side.  They have been giving him an antibiotic as a precaution and they said that since feeding by mouth could worsen the problem they won't do that for 7 days. They'll continue to watch it by x ray and hopefully between time and the meds it will heal up ok.

It has been auch an encouragement to see him so much more comfortable. He's had his eyes wide open for a while this morning and while he still looks a little confused, he's not looking like he's in pain or discomfort like he was yesterday

So good report overall, this intestines thing could delay his discharge since they'll want him eating well before he leaves but that's ok. We're just glad to finally see him steady and comfortable!

A little bit encouraged. . .

We're heading back to the ronald mcdonald house for the night and feeling a little encouraged that things are looking a little better for Landon. It seems like they finally found the right combo of stuff to have him on that balances out his stats well, so hopefully he'll be able to rest well tonight and then they can gradually start to take him off of things one at a time. It's so nice to see him a little more relaxed, even if it means he's on a morphine drip right now just to let him rest and not have his pain spiking like it was. Thanks for your continued prayers. We'll be able to sleep better knowing that he's finally more stable.

Romans 8 Shed Some Light for Me

Allison just posted and I agree with everything she just said, but I am understanding more every day.  While reading Romans today I found an interesting perspective that I can relate to now.  God sent his only son to die for us. 

Our heavenly father does know what it is like to go through excruciating pain while seeing his son suffer and knows that it is part of his plan.  Many, even the apostles, did not understand why Jesus had to die at the time and felt abandoned. 

We are resolving to take it one day at a time and let God reveal to us why this happens instead of our instinct to exclaim why him and us.

Gary

Slow and Steady

Today has been a very difficult day. Landon is still hooked up to a million wires (including a respirator) and they've been trying to get all his levels balanced all day long. Between his heart rate, respiratory rate, CO2 level, oxygen saturation, etc (those are only the ones I know, but there are others too) they haven't found that magic mix of meds and everything that will make everything happy.

Landon has been pretty "active" today but it's usually because he's showing signs of discomfort. It's been excruciating to see him flinch, grimace and try to cry (although it's not audible because of the breathing tube) and not be able to do anything to help him. We can't tell of course if he's in pain, or scared, or frustrated or what. They say that they are doing pretty well with managing his pain, and they have some interesting methods of determining pain cues, but it's just hard to know with such a small child.

We had hoped he would be able to come off the respirator (and get his breathing tube out) today but since he hasn't made much progress I'm not sure that will happen. It sounds like once they can do that he will be able to progress a little bit more with recovery since they'll be able to do some feeding by mouth, etc. I think Gary and I both feel pretty helpless since we can't really do anything for him. We can try and provide some comforting touch but that's pretty limited since there is so much stuff on him and since he's so sedated, it's hard to know if it really makes a difference. I've been trying to talk to him some just so he can hear my voice and hopefully be reassured by that.

I was telling Gary that during this whole process ever since we found out about his heart defect I haven't ever really had feelings of "why us? Why do we have to deal with this?" but in the last few days I've been feeling "Why him? Why does he have to deal with this and go through all this pain and confusion?" It doesn't seem fair- he's just so small and helpless. I know God holds him in His hands and that the Lord has a plan for him. God knows what he's going through and he has a reason for it, but that doesn't make it easy for us or him right now.

We also are both aching to hold our baby boy- the last time we held him was yesterday before surgery and we're not sure when he'll get enough stuff out that we can hold him again. He almost seems like a different baby right now just because he looks and acts so different. Anyway, not trying to dump our emotional burdens, but want to be real about what we're facing right now. I don't have time to journal AND do the blog so I think this will have to serve as both!

Thanks for the continued support- we love you all!

Update with Landon

Things are progressing very slowly as we were told they might.    Most of the statistics they are tracking look ok, but a few numbers are slightly lower than normal, which ironically is normal considering what he just went through and the changes his body is adjusting to.  I would post a picture, but right now is hard enough seeing him this way.  Maybe tomorrow or the next day when he is hopefully doing better we will post a picture of him post-op so everyone can see what a warrior this kid is.  He has woken up some and was apparently really mad at one point last night.  They have used sedatives to keep him calm for awhile longer until all of his numbers look better before they remove his breathing tube. 

Will post more later as hopefully his condition improves.  Thanks for your support!

Gary

Seeing Landon post-op

We finally got to get back and see Landon a few hours ago.  I knew it wouldn't be easy to see him that way and boy was I right. I didn't even count the wires and stuff that he's hooked up to (now that I've been away from work for a few weeks, I don't think I can count that high).  He was a little blue, which they said is normal, but his face looks peaceful, which is reassuring.  I know he's sedated and on enough meds that he can't feel anything, but it's hard to imagine that he could be comfortable with all the stuff attached to him. 

It sounds like they will gradually start to take him off some of his meds as he makes progress, but it's all on his timing and following his cues. I (Allison) hear he opened his eyes for a few seconds but I haven't seen it for myself yet. We just love him so much and we know that God loves him even more. God has truly sustained us through this day and we know he will continue to give us the strength for each day.

Thank you all so much for your messages, prayers and support today. It has been so encouraging that there are so many people praying for him in so many places! We know of people praying on at least 3 continents!  We'll continue to post recovery updates and try to update the current prayer requests often.

Finished - Everything Went Well... So Far

Everything went well with the surgery. No major surprises. They had a little difficulty with the various IVs, but nothing out of the norm for such a small little guy. His SATs are doing well right now and we will go back and see him soon. There is no timetable on when he will wake up. It could be today or it could be tomorrow. Now the recovery process begins and hopefully no major complications come up as we go. These are pretty major surgeries, especially for such a small guy, and complications are not too far out of the norm.

All of the grandparents are here with us in the waiting room. Landon got to meet his grandparents (Gary's parents) 20 minutes before the surgery. They drove 19 hours from Michigan over the last day and a half and got here 20 minutes before the surgery and got to meet him! More to come later, but both momma and daddy are feeling some relief. It is going to be hard to see him all outta sorts, but we just want to see him now!

Finishing up

We got word that they are closing him up and that things went well.  We should see the dr in about 30 minutes to get a report. At that time they'll also take him back to the cicu (cardiac intensive care unit) and we should be able to see him about an hour after that.

Thanks for all your encouraging messages and posts and prayers!

Surgery Update

We just got an update on the surgery and things are going well so far. There was an extra component of the surgery they needed to do which we knew about as of this morning, and that part is done and they are part of the way done with putting in the shunt. There are so many details that may not make much sense but the important thing is that things are going well.

We're not sure how much longer it will be, but we expect to continue to get hourly updates.

Back to Surgery

They took Landon back at about 11am. They are working on getting some IVs in and then they'll start the surgery, which they've told us will be about 2 - 2 1/2 hours. He did very well this morning- sleeping ever since we got here at about 8:15. We just got an update that they've done a few of the lines and have one more before they start surgery. We'll get updates as things so along during the surgery.

They pulled him off feeding by mouth early this morning and since then he's been on an IV to give him some nourishment. We both got some really good cuddle time with him this morning and Grandma and Grandpa Walenga made it in (they were driving from Michigan) in time to meet their grandson before he went back. Please pray for the decision making of the surgical team and that the surgery would go on without complications. Gary and I are holding up ok, but it was really hard to send him back to surgery. Thanks for your prayers. We'll post updates as we get them.

Landon Needs Your Prayers - Surgery Scheduled for this Morning

Things are moving really fast, which I guess we are thankful for but the doctors have already looked at him today and determined that he needs the surgery (BT Shunt) today. They don't want to wait any longer because they know he is still in good shape and they don't want him to turn south quickly. He has been on more oxygen over the past day, but was still continuing to have good enough SATs.

Dr. Jaggers will be performing the surgery. Please pray that God steadies his hand through this procedure. While our initial reaction is out of fairness and why this has to happen to him when he is barely a week old we know that God's plan and purpose is far greater than the negative aspects of this situation. Please also pray that Allison and I can be comforted and confident about this procedure and that little Landon can heal quickly and come home with mommy and daddy soon.

I wish I had time to write more... but I will leave you with this thought from God...

Romans 12:2 - Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is--his good, pleasing and perfect will.

We will post an update once his surgery is finished. Thanks for you continued support and prayers.

We made it!

We arrived in Denver and Landon did great! He slept the whole way (even on the super bumpy roads!) When we got here he wasn't super excited about the transfer and diaper change etc and calmed down for a few minutes but is getting mad again. I think he's hungry but they are evaluating him right now. So it will just take a little time to get adjusted and such but we're glad the journey is over! Thanks for the prayers. Now the docs here will just need to eval him, confirm the need for surgery and get it scheduled.

70 miles

We're getting ready to head up to denver and it's been a busy morning!  Landon has been doing good today but had a hard time falling asleep after his last feeding. Hopefully that means he'll sleep the whole way up! They showed us the little isolette he'll be in during the ride and it look s like he'll be cozy and safe (see pics) . I'll ride in the ambulance up front so I'll at least get to see and hear him on the way.  Prayers that he'll be calm (and sleepy preferably) and that we won't hit any snags with traffic, etc.

We'll have to learn a whole new nicu and meet a whole new staff when we get up there but I'm so grateful we've been up there once before and know it's a great hospital with a fantastic staff.  Also prayers that even if gary and I can't sleep at all today we'll at least be able to "rest" some. 

Good news that we were able to get into the Ronald McDonald house which is very close to the hospital so we'll be staying there until he gets discharged.  We had some dear friends organize a garage sale several weeks ago for us to raise money for baby and medical expenses and now that we're heading up to Denver some of that will be used for travel expenses. Rm house is technically free but they ask for a small donation per night.  Again, we are so blessed by our wonderful friends and family. We love you all!

Change of Plans

I think in the last post Gary mentioned the echo that was going to be done this morning. Dr Brames came in a few hours after the echo was done and told us that he feels that Landon will need the BT Shunt (1st surgery). His sats have been trending down over the last few days and Dr Brames said this is an indication of some narrowing in Landon's heart where the diminished chamber is that causes his sats to get lower and lower. As he grows and his heart beats stronger (just like all babies) the pressure will become greater, leading to an increase in the narrowing and decrease of his sats. The BT Shunt will provide an extra source of blood to the lungs that although it will allow some of the blood to mix (which is normally a bad thing), will increase his sats and hopefully make him more pink.

This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.

The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.

It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.

Little Landon Might be Coming Home Today!

We are trying to keep our emotions tempered but we were told yesterday that he would come home today. Last night he had a brief dip in his SATs, but is still doing relatively well. Allison and I roomed-in last night at the hospital and took care of him all night for the first time without all the monitors and cords hooked up to him. They try to do this to prevent us from being terrified at home without a monitor and encourage us to focus on him and see if his color changes from the beautiful pink that all babies should be. The pediatric cardiologist is going to do another echo on him this morning to ensure that he can in fact go home. Also, they had his hearing test redone on his right ear and passed! False alarm there!

I got an hour of sleep, but the good thing is that I have been able to let Allison finally sleep some. The poor mommy has been worried sick about him and been burning the candle at both ends trying to produce enough food for him to provide him the antibodies that are so valuable that come from her food. It was great to have Landon around all night. I am getting the hang of this father thing for now, though when my body catches up to me due to the lack of sleep this will get tough.

We have at least 9 weeks to go. Please keep praying for him. These next nine weeks and beyond are critical for him to skip that first surgery.

I have felt very blessed by the nurses that have been around us. I have learned a few tricks just being around them over the past week and feel much more ready to keep this guy happy when his body is needing something. That is it for now.

I will leave you with one last thought. I was thinking last night what Landon would say if he could speak right now... it is decidedly so that he would say.... beat the Yankees!

Gary