Sunday, October 2, 2011

Laaaiiiid back

So the test on Tuesday went just fine. Landry was a trooper about having to fast. We were supposed to get to the hospital at 9:00, which we did, but didn't start the test until 9:40. I figured this would happen so I fed him at 6:45 which ended up being perfect for his 3 hours of fasting. He was great and during the test, he was actually content because his stomach was full of the dye he had to drink. It was pretty interesting to get to see how this test works. He has had it twice before but I wasn't in the room. He lays under a machine that shows a live picture of his stomach and intestines so you can watch the dye go through it in real time - not just x-ray still pictures. The surgeon was in the room as well and she was very pleased with the rate that it moved through the area that was reconnected. The discretion between the larger portion and smaller portion didn't seem to be much different to me than it was a month ago but the surgeon said it actually was a lot better but would still take several months to go back to normal. I was reassured to hear that the dye could travel through the part that was reattached at a great rate. I wonder though if this will still be the case when he starts solids in a few months. I will have to ask about this. I was already planning on holding him off until closer to 6 months to begin solids but it seems like it might be harder for his intestines to pass this thru since it will be thicker. Who knows...I'm not a doctor (although I can pretend!) but it just seems this might be something we need to carefully watch. The doctor wants to see Landry again for a follow up in three months so we can discuss this then perhaps. The doctor also talked to our regular pediatrician about Landry's vaccines. We are going to space them out so that his body doesn't get overwhelmed. We are also going to skip some of the more unnecessary ones or put them off until later.

Landry continues to be the easiest baby ever. It makes for a very happy mama!! It sure makes having two much less difficult than it could be. We sure love our sweet, sweet boy!

Sunday, September 25, 2011

Test on Tuesday

Landry is scheduled for another barium dye test Tuesday morning. I know it is important for him to have and it will give us valuable information about just how well his intestines are functioning but I am not looking forward to it! For one, he has to fast 3-4 hours before hand. This will be very hard for this chunky monkey because he wants to eat every hour and a half. I am also hoping he doesn't have to go in that tube thing that he had to go in last time. It is a baby torture chamber and we both hated every second of it last time. So, it will be nice when Tuesday morning is over!

Things at home have been just great. Landry is pretty much over his cold and is sleeping great. The past few nights he's slept until three or so and then gets up around 7 or 8. It is very doable. I can't believe just how different he is from Cade - not just in sleep but everything! He is a big boy too - he is already wearing 6 month clothes. Cade has been really sweet with him which is so fun to watch. He loves to tickle his toes and always gives him kisses when he sees him in the morning. Having two really hasn't been as hard as I thought it would be. Of course, there are moments but they are few and far between and can usually be avoided by some serious multi-tasking and planning ahead. =)

Saturday, September 17, 2011

For the love!

So Landry has had a cold since we got home from the hospital that has gotten progressively worse. I'm almost 100% sure he got it from Cade because Cade has the same thing. Just a runny nose, not anything too major. Landry has been waking up more at night the past few nights and didn't give us any smiles yesterday. By the evening, he had a fever of 101.4 and a goopy eye. Ear infection! So I took him to Urgent Care this morning and got him on antibiotics. Then I called the surgeon who had put him on the probiotics before and asked if we should do that again as well since the antibiotics might kill off the good bacteria in his intestines. She agreed this was a good idea so that is our plan. I tell ya, this kid! So between the PRObiotics and the ANTIbiotics we should be good! I hope these biotics know what they are doing because this plan seems a little oxymoronish to me. Biotics are confusing!

After seeing the striking resemblance to Landry's shirt and himself, we are foregoing the sumo wrestler idea. He will be a monkey and I've already found the costume!

Wednesday, September 14, 2011

He's a growin' MANIAC!

I can't keep up with this kid! All he wants to do is eat and eat and eat some more. I LITERALLY can't keep up! After he nurses, he wants a bottle and downs that as well. I fully expect him to be 30 pounds by Halloween, which will make for a great sumo wrestler costume. He is close to outgrowing all his 3 month clothes and I've already had to order the next size up in his diapers. It is all coming out the other end so the doctor says not to worry but MAN! This kid can really eat!

Friday, September 9, 2011

Goin' strong!

Landry is doing great at home so far. He is just such a good baby, I can't even believe it. He is so happy!! I would be too if I was finally out of the hospital and not being poked and prodded every day! We had a follow up appointment with his surgeon on Wednesday. She is setting up an appointment for us to see the pediatric gastroenterologist next time she comes over from Seattle. It won't be for a few months and if Landry is doing well we won't need to see her at all. Landry is schedule for an upper gi barium dye test again at the end of the month. The surgeon wants to see what his intestines look like when he is doing good. Having both at home hasn't been as hectic as I thought it would be and Cade has been a real trooper adjusting to having to share his mommy and daddy. He brings Landry his blankets and paci's when I am nursing him and even brings me my water bottle! Such a helper...of course, don't think he won't take a swipe at Landry's head when he has had enough either! One day he will be in for a big surprise when Landry pops him back!

Monday, September 5, 2011

Home again, home again

Well - we brought Landry home today which is great. He is doing just wonderful - still having a little diarrhea but not enough that it should dehydrate him again. I love our surgeon - she came in today to see Landry on her day off before he went home. It was great to be able to ask her some of my questions but unfortunately, she still doesn't know exactly why this happened. It could have been just a virus. More likely though I think, the vaccines triggered this reaction in him. His immune system isn't as strong as a typical two month old because of his surgeries and hospital stays. The vaccines are typically rougher on these types of kids. He isn't going to get the rotavirus vaccine at all now - the doctor felt that since he wouldn't be going to daycare, his chance of exposure is far less. Plus, it is a newer vaccine and does not work 100% of the time anyway. In two months, his next round of vaccines is scheduled. They might be postponed until he is stronger, or we might space them out so as not to overload his body all at once. At any rate, it is great to have him home and get everything back in order again.

We meet with the surgeon on Wednesday for a follow up appointment. We are so lucky to have such a wonderful doctor in our area. I asked her about Landry seeing a pediatric gastroenterologist. There is one that comes over quarterly from Seattle Children't Hospital. Unfortunately, she was just out so she won't be back for a couple months. However, if this is something that continues, or if we need to make a decision about whether or not to operate again, I would love to meet with this doctor. I am so grateful that Missoula has our surgeon but I wish we had more specialists. Perhaps I will just have to take him to CHOC for an extended OC visit!! Hehe - just kidding....or not... =)

Saturday, September 3, 2011


Well we are still here and probably will be for at least a few more days. Landry is getting better, it is just taking a long time. He is getting less fluid through his IVs and his diarrhea is slowing down. The doctor on call here today told me that now she thinks that Landry doesn't have a bug but rather he is experiencing a reaction similar to kids who have short gut would get. The trigger would be the vaccines that he got on Tuesday and his body just reacted this way. She doesn't think it is a bug because his white blood cell count is still high, he hasn't tested positive for any viruses from stool samples, and we can't pinpoint an exposure to any bugs that we know about. So - if this is the case, my next question for the surgeon is going to be if the swollen part of the intestine is the part that would cause this or if it is just his intestines throughout. If it is the larger section, is the answer surgery to cut it out? Will he not have anymore of these episodes if that is done? If we leave that bit of intestine in, will we keep having these episodes every time his body is exposed to something? I will have to wait until Monday to ask her these questions. I think Tyler is going to stay here tonight. As much as I wish I could stay here to nurse Landry, I think my body is just getting too worn down staying here night after night. A decent night's sleep will be nice, even though I will still need to get up to pump. It goes without saying that I can't wait to get him home again and hopefully once and for all!

Friday, September 2, 2011

Hospital - Take Three!!

Well - We are back in the hospital - same room actually. These days are all blurring together and it feels like we never even left. Crraaazzyy how much sitting in the same room all day messes with your mind! The lack of sleep from sleeping here sure doesn't help either! So the ER yesterday - I asked to have the surgeon called to make sure she agreed with any decisions that were being made. The doctor there seemed to be leaning toward the intestinal issues as the cause and not so much a stomach bug. The surgeon came in as soon as she could to take a look at our little pooper. She told us that the vaccines can sometimes trigger this reaction in kids like Landry and said that if it was his intestinal issues causing the problem that she would probably decide to operate and take out that bigger section that was supposed to be shrinking back down because it was still not functioning as it should.....or she thought, it could just be gastroenteritis (stomach bug). She wanted him admitted and put on iv fluids to hydrate him. She said she would come by and see him later that day. When she came by, she told us that she was not putting him on the surgery schedule just yet. Thank God!!!
After a less than restful night here with Landry, she came by to see him bright and early. She decided that since Landry had only thrown up twice since being admitted and was still having plenty (and In mean PLENTY) of diarrhea, that it was just a stomach bug. If more was being thrown up and less was coming out the other end, she would have thought differently. So that was great news. We will still be here for at least a few more days though since Landry's labs came back showing that he was pretty dehydrated. Today seemed to be a turning point for him. I think he is now having diarrhea less often now but his poor bum sure has taken a beating. Another great thing about today was that we got to have one of our very favorite NICU nurses be Landry's nurse today. I wish that could happen every day! These NICU nurses sure know their stuff and just as importantly, love Landry!

Thursday, September 1, 2011


I'm currently laying in an ER bed holding a sick little sleeping boy. He threw up last night when I was giving him some pedialyte. I think it was the different taste that made him throw up though. He did pretty well most of the night. He was still having diarrhea but not vomiting. Then at four he didn't eat as much as he usually does and he threw up his six o'clock feeding. We brought him into the ER and have been here since. His diaper has been sent off for a stool sample an he had some x rays. They had to put him in this plastic tube with his arms sticking out for one x ray. It was horrible. It feels good to be able to hold him now and snuggle him. The surgeon is going to come in in a bit to take a look at him. We are still hoping it is just a stomach bug but what a strange coincidence that would be.

Wednesday, August 31, 2011

The fun never stops around here!

So Landry definitely has some sort of stomach bug/virus. The doctor said if it gets worse tonight we need to take him to the ER to get admitted for fluids. If not, we are to call her tomorrow, perhaps bring him back in, and if it's still not better go back in the hospital. I am finding it hard to believe that the two situations are unrelated, but hopefully they are. We are doing all we can to keep him hydrated but he is already showing signs of dehydration. Hopefully the diarrhea will stop, and we can get through this without having to go back in the hospital. This sure isn't easy but Landry makes it worth it.

Doctors Appt

Yesterday was Landry's follow up appointment with his doctor. I asked if we could do his 2 month well child check as well and they said that was okay so we got that in too. One less appointment to go to is good for me! The office has a form that you fill out about your child at each well check to make sure they are developing appropriately. The only area that Landry scored lower in was fine motor which was great because the doctor thought he would be lower in more areas. He is low in this area from being hooked up to so many wires and swaddled so much at the hospital that he hasn't had a chance to develop as quickly. He was 52% for weight, 70% for height, and 43% head. He has been wanting to eat a whole bunch at home so I asked the doctor if this was okay/normal. She assumed he was just catching up from not being able to eat and grow as much as his body would normally. It will be interesting to see how much he grows by his next visit! He got his shots too which was not fun. He was miserable last night afterwards so we gave him tylenol which seemed to help his mood but he still held a high fever most of the night and had diarrhea which definitely did not help his diaper rash from hell! It is still hanging in their despite the prescription but slowly going away. We visit with our surgeon again next week to follow up with her. I am beginning to worry less and enjoy more. It is a nice change!!

**** Laura Keating - I'm dying to know if you're having a boy or a girl! Email me at =)

*****UPDATE - I called the doctor about Landry's diarrhea because it has gotten much worse. She said it can't be a side effect from the vaccinations because he did not get the rotavirus vaccine due to his intestinal issues. (He might have it later, she wants to double check that it is okay). So she wants to see him today to check this out. We are going as soon as Grandma Lu gets here to watch Cade. I'll update when we are home.

Sunday, August 28, 2011

The crazy life =)

Well - things are still going great for Landry. It sure is an adjustment having two little ones who want all of your attention all the time. I know it will get easier though as we all settle into a new routine. Cade has decided that he still loves Landry except when he wants my full attention and can't have it. Then he gets a little evil grin on his face and takes a swipe at his head. Not fun! Hopefully that phase will be short lived. Landry had an interesting day yesterday. All he wanted to do was nurse/pacify himself. If he wasn't attached to me he was crying. Instead of thinking normal baby thoughts like he is just cluster feeding or needed extra soothing my mind goes straight to something much more serious. I am hoping that as time goes on and I continue to see him doing well that this won't happen. I don't think my anxiety can take it! Today he is doing much better though which is great to see. Babies have good days and bad days and I have to remember that one bad day doesn't mean he is in trouble again. His poor butt though...that is a different story. Boy has diaper rash like I've never seen before! We called Peds at the hospital where our doctor was on call this weekend and she was able to call in a prescription. Hopefully this will be the key because nothing else we are trying seems to make much of a difference. Poor guy!

Thursday, August 25, 2011

The good life =)

Today was finally my first day of seeing what it is like with both boys all day and Tyler at work. I can't complain about how it started - they both slept past nine. I think the hardest thing about having a baby is having to function throughout the day on very little sleep. If you get sleep - everything is soooo much easier! So, today was a good day. They both took long naps but at opposite times which gave me time to spend with each of them one on one which Cade definitely appreciated. Cade enjoyed picking all the strawberries from our garden - only his all went into his mouth and not the bowl. Landry has been a champ all day - eating well, sleeping well - all that baby stuff. I forgot how much newborns sleep! Ok - off to bed for me. I will try and post some more pictures tomorrow.

Wednesday, August 24, 2011

Home Sweet Home

Today was a great day =) Landry even had a great night. It is a weird thing to bring your baby home when they aren't a newborn anymore. He already has had a chance to figure out days and nights. He still woke up about every three hours and would eat and then go right back to sleep. It wasn't bad at all. Today he ate every two to three hours and took a few long naps in between. I managed to eat and shower too! =) So overall I'd have to say it was a success. Cade has been really sweet with Landry but still needed plenty of attention too. It was really strange to not rush off to the hospital first thing in the morning today. As glad as I am to not be there anymore, I actually miss seeing all the nurses. I will have to bring Landry by for a visit to see the wonderful people who took such excellent care of him.

Tuesday, August 23, 2011

Monday, August 22, 2011

Day 47

Nursing was 100% successful today. He latched right on like he'd been doing it since day 1....instead of day 47. Everything seems to be going just as planned - he hasn't throw up, his tummy is soft, he is having lots of poops. Everything is good! One of the doctors today mentioned that the surgeon had said he might be able to come home tomorrow. That would be great of course but if he has to stay until Wednesday that is just fine too. One more day is just that much more reassuring that everything is working.

Sunday, August 21, 2011

Day 46

I had another great day with Landry today. He is so happy and content now - it is a beautiful thing to see! Today he was at two ounces every three hours so tomorrow he can eat however much he wants. I also get to start nursing him again tomorrow. I hope he is still a great nurser and hasn't gotten too used to the bottles these past two weeks. Seeing what a strong boy he is, I'm sure he will have no problem with it! He is also off his IV so he is no longer hooked up to any wires. They left the line in just in case he needs it again (which he won't!). I can't WAIT until Wednesday when we can bring him home!

Saturday, August 20, 2011

Day 45

Well - these posts are all beginning to sound the same but I guess that is a good thing!! Landry spent most of his day today with Grandma Jane as she leaves to go home tomorrow. He had a good day and is now up to 50ccs every three hours. This time around is so different from before in NICU. He hasn't thrown up at all, he eats his full bottle, and is hungry at the appropriate times. The first time around in the NICU he sometimes would only want 30ccs even when he could have much more and then would be hungry again an hour later. I am glad that everything is going so smoothly and I really hope it continues!! I should be able to start nursing him on Monday and he is scheduled to come home Wednesday....for good this time!!!!

Friday, August 19, 2011

Day 44

Landry was a happy boy again today. He even had a bath and didn't cry at all even though we had to hold his arm with the picc line up and out of the water the entire time. What a trooper. =) He is still tolerating his feeds and was up to 40ccs today. The doctor said once he is at full feeds I can start nursing him again. I hope he is still a great nurser! Landry has been smiling for weeks now but I can make him smile now instead of him just smiling when he drifts off to sleep or after he eats. His smile makes my whole day!

Thursday, August 18, 2011

Day 43

Landry had a great day today. He was in a good mood, napped well, and ate well. He is now at 30cc's every three hours. Tomorrow, if all goes well, he will increase by 10 and then up every day there after until he reaches 60. After 60 he will be able to eat as much as he wants. It goes without saying that I really, really, really, hope this works. Looking back at how quickly he increased his feeds the first time (within 3 days he went from nothing to full feeds), I know we are going much slower. Even so, it still feels fast to me. Again - I have to just have faith! I need to ask tomorrow about breastfeeding. I don't know the best way to get him back to nursing but I am hoping that we can establish it before we leave the hospital so we know he will tolerate it. Fingers crossed that this all goes as planned!

Wednesday, August 17, 2011

Day 42

Landry was a wide awake boy today! He barely slept during the day for a long period of time. I am wondering how he sleeps at night - maybe he will be a pretty good sleeper by the time he comes home! The surgeon up'd his feedings to 25cc's every three hours. Tomorrow, if he goes up to 30 - that will be one ounce. The surgeon said that once he is there, she will up the feedings more quickly. I know we are going slower than last time but I am still feeling very nervous that the same thing will happen again. The surgeon is very confident that this will work though so I just have to trust her!! Maybe...just maybe....he will be able to come home sometime next week. I can't even believe that or wrap my head around that....I just don't want to get my hopes up I guess.

So an EOB showed up for Landry's NICU was about 179,000. Hoooooly Mooooly - thank god for insurance!! I complained all year about my high premium but now it seems so small!!! We still have more bills coming in as well as the bill for our Peds!

I was looking through old pictures of Cade today and came upon this one - he looks soooo much like Landry! I hope they continue to look alike! =)

Tuesday, August 16, 2011

Day 41

These days are so long sometimes that when I sit down to write at the end of the day, I don't even remember where to start! Sometimes I think I'm losing my mind! =) surgeon came in to check on Landry and thought his tummy was slightly distended and a little harder than usual. He seemed fussy but was easy to soothe so she thought it was hunger making him upset. She ordered an x-ray but before it was taken, he had a big poop which seemed to help a lot. They did the x-ray anyway since it was already ordered and it showed that there was an area of the bowel that looked a little bigger. She decided to be extremely cautious and keep his feeding at 20cc's today just to be on the safe side. She is still very confident that this should work and we won't need another surgery. She feels like the first time around, Landry just fooled us and she should have realized that his progress was too good to be true. It makes me feel better to know that she is keeping such a close watch on him. She even came back this afternoon to see him and has been really proud of his progress so far.

Today I had my 6 week check up with my OBGYN and a dentist appt. Doesn't get much better than that!! So at my OBGYN my nurse was asking how things were going....I said we were hanging in there, which led to her asking me what I meant, which led to me crying telling her everything going on....awkward! So I decided at the dentist that I wouldn't mention anything about Landry being in the hospital. That turned into a whole different kind of awkward where I was asked how I was handling the sleepless nights with a newborn at home, etc, etc.... Glad those appointments are over!

So tomorrow is another day and hopefully Landry will continue his great progress and we can get him home once and for all!

Monday, August 15, 2011

Day 40

So....made it through another day. Landry is up to 20cc's every three hours. He seems to be tolerating it but it drives me crazy because we really don't know for sure that he isn't getting backed up again. I just have to have faith in the doctors that they know what they are doing.

Look who decided to stay with us a little longer! YEEEEAAAAHHHH MAMA!

Sunday, August 14, 2011

Day 39

I was able to speak to the surgeon today so a lot of my questions were answered but my mind isn't necessarily put to ease. She says that she plans on increasing feedings by 5cc's every day. This is much slower which is good and if he progresses at this rate he will be up to full feeds in about 3 weeks or so. I am glad we are going so much slower but there still isn't a way to definitely know for sure that Landry isn't getting backed up. The surgeon said the reconnection is in such a spot that you can't really see it no matter what you try - various x-ray positions don't show it very well, a scope wouldn't show it - it is just in a tricky spot. So really the only way to tell is to watch Landry very closing and monitor is output. We are looking to see if his tummy gets hard and painful to the touch, or his disposition changes. We were fooled last time because when he would be cranky for a long stretch of time, we could say that it was just because he was hungry and not necessarily hurting. We are just going to have to watch him very, very, carefully. I know the surgeon is watching him closely too. She came in this morning just to see him on her day off. I am glad she has such a close watch on him.

I spent most of the day today at the hospital with him. It is really nice to be able to hang out with him for such long periods. I can really see a difference in his development lately. He isn't such a newborn anymore. He is cooing, reaching and grabbing toys, picking up his head...all great things. I am so happy that he is doing so well and growing so strong but it also makes me sad because it makes me step back and realize that holy crap we've been doing this a LOOOONG time. He is changing and growing before my eyes, all in the hospital. I can't wait to get him home and get him healthy this time. I don't mean to sound ungrateful in the least though. The number one important thing is that he is doing well, no matter where he is. We really are lucky that he is where he is at and his condition wasn't worse. There is a lot to be thankful for. Besides his increasingly better health, I am also so thankful for all the people who have helped make these past several weeks easier to deal with. My neighbors, co-workers, nurses, and most importantly my family have all been so great to us. I don't know how we could have gotten this far without all the help!

Saturday, August 13, 2011

Day 38

Today Landry's feedings were up'd to 10cc's every three hours. We are concerned that he will get backed up again just like before and look forward to hopefully talking with the surgeon tomorrow to see why she thinks this time it will be different. The treatment seems to be the same as the first. We want to know how she will know the same thing isn't happening again. How will they monitor that all the food is passing through and not getting blocked? I know they are going to do x-rays but they do not show with 100% accuracy what is happening. I am also leery about him getting exposed to so much radiation. It will be good to talk with the surgeon because I know she has a plan and a method to all of this - I just need to get a better understanding to put my worries at ease. I have complete faith in her.

I brought Landry a few things from home so he has more to do at the hospital. So far we put him on his tummy time mat. He loved looking up at all the toys hanging down. He was even able to reach and grab them. I am hopeful that if we treat him just as he was at home that he will reach his milestones on time.

We slipped off the the fair for a bit today with Cade. It was a nice diversion. He loved the petting zoo!

Friday, August 12, 2011

Day 37

Wow - Hard to believe it has been 37 days of this new reality... We met with Landry's surgeon today who was back from vacation. She had a slightly different opinion than the surgeon from Seattle who was filling in for her. She believes that there is not a blockage of the intestine but rather we were fooled into believing that Landry was handling his feeds. She thinks that the food was only slightly passing through the bigger portion into the smaller one and the rest was getting blocked up. She thinks it got so back up again that it couldn't push the food through and that is why he was throwing up, etc. She thinks that we just need to slow down our approach in introducing larger feeds. The larger portion of the intestine needs to shrink down in order to push the food through properly into the smaller (micro colon) section. The more it got backed up these past couple weeks, the less it was able to do its job of pushing the food through properly. The micro colon is underdeveloped because it wasn't used in utero since that is where the separation occurred. The only way to get this micro colon up to functioning size is to use it and gradually stretch it to a useful, functioning size. This isn't a new plan or new information to us. This is what we were told was the plan initially so we are still staying the course - just starting over. If the larger section does not shrink down and begin to function correctly, another surgery will be needed to either cut that portion out or reconstruct it to a smaller size. Is this all clear as mud? Every day I feel like I am figuring out more and more about his condition but it is also confusing because different doctors and nurses have their own interpretation which sometimes just confuses things further. The surgeon is obviously the one who knows the most about this though and I find her very easy to understand so that is helpful.

So today we started the feedings. He gets them through a bottle but because it is only 5cc's, he finishes it in 2 seconds flat. The good news is he got his tube out of his nose that was sucking up all sorts of yummy stuff from his tummy so now he looks like this:

It is so nice to have this out - it bothered him a lot. When Landry first started eating, I was so eager to get the feeds up to where he was satisfied, but this time around, I want them to move as slow as molasses. The discrepancy between the large and small sections that were joined back together was one of the greatest that our surgeon has ever seen. I'm definitely no expert in small intestines, (although I might be one after this is over) but it just seems nothing sort of a miracle that the two will end up similar and functioning. If the doctor is trying it though, theres gotta be a chance!

Thursday, August 11, 2011

Day 36

Can't say there is too much new information to report today either. I spent most of my day like this:

Can't complain about that! The other part of the day was spent chasing Cade around the hospital or pulling him in the wagon over to the park. It was nice to be able to spend some quality time with each of them under one roof!

Landry had lots of visitors today which is always nice. We had Landry's NICU nurse, aunt, uncle, great aunt, cousin, and grandmas all come by to love him up. He is definitely a loved little boy!

We might start feedings tomorrow. Of course - very small. I am not even excited about this because in my mind I already think its not going to work and we are just going to have to go to surgery again. How's that for positive thinking?! I guess I just don't want to get my hopes up again only to be disappointed later. One good though about feedings though is that hopefully poor Landry won't have to feel so dang hungry all the time. I don't even know if the tiny feedings he gets at first will help at all or just piss him off more. The original surgeon comes back tomorrow and I am looking forward to talking with her since she is the one who knows most about what is going on and what might happen in the future.

Wednesday, August 10, 2011

Day 35

Another day but not much new information to report. We are really just waiting....waiting, waiting, and waiting. The nurse tonight was pretty sure we are going to end up having to do another surgery but we are hoping and praying that this resting period (no food - gut can rest) will allow the partial obstruction to heal itself. We are hoping for the point where the reanastomosis occurred ( where the two sections of the intestine were joined back together) becomes closer in size to each other and food passes through more easily. It is a slim chance that this will happen but there is still a chance. More than likely, we will have to go back in and fix this partial obstruction once it is a more optimal time to have another surgery. In the meantime, we are resting his gut, keeping him content, and loving him up.

On another note, my mom, aka Saint Grandma, has to go back to California on Saturday. She has been the glue that is holding this whole operation together for me so of course I am very sad to see her go but we will just have to figure out a new plan of attack. (Don’t feel guilty Mom! Everything will work out!) I can now bring Cade with me to see Landry but still can’t really hold Landry with all of his tubes, with Cade in the room. I know many people have offered to help out with Cade and I think I will take you up on your offer! I am hoping, wondering, asking, if anyone would be willing to come into the hospital and take Cade to the playroom down the hall from Landry’s room, or a walk in his stroller, while I spend some time snuggling up Landry. We have a lot of support with Tyler’s family, especially his mom, but one less person to help manage this operation will definitely be different. Between Tyler’s days off and the days his mom watches Cade, most days shouldn’t be a problem. I am just looking for a little help on the days when we are in a bind so that I can be sure to hold Landry everyday. =) Everyone has been so supportive and helpful and I am so blessed to have such wonderful people in my life.

Below are some pictures from the day we had Landry at home. They are a little bittersweet to look at but glad to have them!

Tuesday, August 9, 2011

Day 34

There is still plenty we don't know about Landry's condition. He is still going through tests and we are playing the "wait and see" game. So - no surgery yet. The surgeon (who is not the original one, she is gone until Thursday) is trying to avoid a surgery at this point. This window of 2-3 weeks post surgery is the least optimal time for another surgery. So where do we stand...well, I'll back up a bit and explain what happened yesterday. We went to see Landry's peditrician because he was unable to keep down anything bigger than an ounce and was not motivated to eat even that. She sent us over to the hospital to be admitted. We were hoping to be able to get back into NICU because we have grown to really love those nurses and they knew Landry but we were told we had to go to Peds since Landry has been on the "outside" - he could have picked up some illness and they didn't want him to infect other children. It was disappointing but it is turning out to be for the best - we have our own room, I can get meals delivered, Cade can visit, there is a playroom for him to play in, we can sleep over, and he is the only patient on the floor right now. One of our very favorite nurses from NICU even came up to visit before leaving last night and two wonderful NICU nurses are putting in Landry's PIC line today. This is similar to a broviac - too bad he just didn't still have the broviac in...too bad we left the hospital at all on Sunday but that is all a mute point now. So yesterday's results from that upper gi barium test showed that most of the dye is not traveling through the entire intestine. Some might have made it through but not much. The surgeon is hoping that the cause of this might just be that food is unable to pass from the bigger part of his intestine into the smaller. The section of the intestine that was reattached during the second surgery still had a big size discrepency and it might be having a hard time passing through in larger quantities. There could also be a kink at this point or the intestine might have folded over on itself. The best way to think about it if it isn't a kink or fold is that his intestine at this point is like a funnel - when it gets too full, going from the larger portion to the smaller portion, it gets backed up. This is what we are hoping for at least because then it will just take time and a whole lot of patience to self correct as it goes back to its normal size. If it is twisted or completely obstructed, however, he will need surgery. Hopefully more tests and watching how he does will give us a clearer picture. The doctor thinks that we will be here probably another month - but that is a big guess since we aren't even really sure what we are dealing with. There are many options for bowel problems - we have options should his case change. The surgeon mentioned that sometimes this issue could take 2-5 years to correct completely. It is hard to wrap my head around that but whatever we have to do - we will, one day at a time.

I borrowed the below passage from a friend who is fighting her own fight right now against cancer and I had to share it. Situations like this sure put life in perspective.

There comes a time in your life when you realize that if you stand still, you will remain at this point forever. You realize that if you fall and stay down life will pass you by.

Life's circumstances are not always what you might wish them to be. The pattern of life does not necessarily go as you plan. Beyond any understanding, you may at times be led in different directions that you never imagined, dreamed , or designed. Yet if you had never put any effort into choosing a path or tried to carry out your dream, then perhaps you would have no direction at all.

Rather than wondering about or questioning the direction your life has taken, accept the fact that there is a path before you now. Shake off the "whys" and "what ifs", and rid yourself of confusion. Whatever was---is in the past. Whatever is---is what's important. The past is a brief reflection. The future is yet to be realized. Today is here.

Walk your path one step at a time---with courage, faith, and determination. Keep your head up and cast your dreams to the stars. Soon your steps will become firm and your footing will be solid again. A path that you never imagined will become the most comfortable direction you could have ever hoped to follow.

Keep your belief in yourself and walk into your new journey. You will find magnificent, spectacular, and beyond your wildest imaginings.

----- Vicki Silvers

Monday, August 8, 2011

Day 33

Well, today turned out to be not such a great day after all. Landry has been unable to keep down his feeding so we took him to the doctor this morning. She decided he needed to be admitted back in the hospital. He had to go to picu instead of nicu since he had already gone home. He is currently having the upper gi barium dye test to look for an obstruction of the small intestine. If there is one, he will need another surgery. This is what we had feared.

Sunday, August 7, 2011

Day 32

We just got the call that Landry can come home today!!  We are on our way to the hospital to pick him up! YEEEEEESSS!

Saturday, August 6, 2011

Day 31

Today was another day of rooming in with Landry.  It went just perfect.  =)  He was completely wireless - he got the broviac taken out that morning and wasn't on any monitors.  It was soooo great to be able to walk around the room with him....such a simple thing but it was so nice!  He nursed great, latching on right away every time and lasted about 10 minutes each time.  He lost weight again the night before so I am hoping that with his increased nursing time, he will gain.   The nurse hinted that he might, and its a huge MIGHT, be able to come home tomorrow if he shows a gain.  They are more concerned with the preemies being able to show weight gain but Landry doesn't really fall into an area of concern in this category since he was full term and never had weight issues.  He is a big boy, already 10 pounds!!  So, fingers crossed that he will come home Sunday or Monday.  It seems silly that he is still in the NICU now - he needs no care from the nurses other than basic care that we can provide, and have provided the past two days.

I'm so excited for Cade to get to meet Landry.  Landry's pictures are in his room and every time Cade is in there, he points to them until we give him the pictures so he can kiss them.  Hopefully that is a sign of things to come!!!  Although I'm sure there will be plenty of big brother torture as well!!

No wires!!!

Friday, August 5, 2011

Day 30

Today was a little glimpse of what it will be like to have Landry at home.  We roomed in together in a hospital room for the day.  It was a great day together because we could be alone without nurses and other NICU parents bumping into us all day.  It was also the first day that he was exclusively breastfed.  I wasn't sure how this would go - if he would be able to latch each time, if he would get enough, if he would get TOO much, etc, etc, but it all worked out just fine.  He is still eating very often - almost every hour - and only for about 5 - 7 minutes each time but I think he is just adjusting to eating as much as he wants and needs.  I even had a friend spoil me today with some delicious Mexican food and great company which made the day even better.  Thanks again Kim!  We are still looking at early next week for bringing our little guy home.  He lost 52 grams last night which isn't a huge amount but he has to show at least a 10 gram gain for two days in a row to come home - along with other criteria.  Can't wait!

We are getting all sorts of cute smiles
from Landry - this one was right before
he drifted off to sleep.