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!