Monday, May 5, 2008

Another Monday at the NICU

We are getting better over here, slow and steady (wins the race?)...

The history, so I can try to update and have it make sense: Basically, A had a volvulus in his small intestine, specifically his ileum, which is the lower part of the small intestine. That volvulus (small spontaneous twist, likely resulting from when the intestines migrated into his body in utero) died and backed up the rest of his small intestine. That volvulus had to be removed, but b/c of the back up his intestines are incredibly dilated. They have to repair his condition in two surgeries. The first one lets the waste go through his body and out (the side.) Then, we wait 6-8 weeks for the dilation to go down. At that point, they will then reconnect his intestines and he SHOULD be able to go on like a regular baby because he only lost 10cm of his intestine, which leaves 90-95%. Our trusted friend, Dr. Go.ogle assures us that when folks lose more than 2/3 of their guts, they start to have major problems... and we're no where near that, at least in the long term. In the short term, however, he is using only the highest part of his intestines which is a big piece of why we may be having the problems we are at the moment (during this interim between surgeries.)

OK, so I wanted to explain that b/c I doubt we did a good job of explaining earlier.

So, now, we are here because A doesn't seem to be absorbing. They've ruled out infection, which is a good thing... except that it is the most common reason for "dumping". We are working on getting him up to full feeds while supplementing with IV nutrition. As of today, we are at 75% of oral feeds (45cc/3 hours). He is no longer dumping, but his output is still really high. It's amazing how obsessed we are with input and output now...

We are cautiously optimistic and trying to remain in the here and now because there is nothing to plan for as of yet. In terms of us making do - my mom and sister B left this afternoon (arrived Friday), and they left us a few days worth of meals. We have some good friends in town who are going to help us with Gladys for a few days until E's dad returns at the end of this week. We, unfortunately, have no hope of getting out of here particularly soon.

So, that's the scoop for now. At this moment, I'm going to change my son's diaper and get ready to feed him. We are going to attempt actual nursing today - he LATCHED this afternoon in quite a surprise move, so we're going to attempt a significant feed with bottle as backup. No pressure, as today's latch was a significant milestone, but it feels good. We're trying now to focus on some of his developmental milestones and de-medicalize our understanding of life. He doesn't know that he's hooked to tubes, and we don't want to miss this start of his life because of it.

At least, that's the theory for today.

18 comments:

ohchicken said...

thank you for explaining his condition to us. i am so proud of him for latching! what wonderful moms you are for finding normalcy in the midst of all of this. he will follow your lead, i am sure.

as always, thoughts and prayers coming your way.

bleu said...

You are both such fantastic mama's. I am so sorry you are dealing with all of this. Please kiss him for me and take care.

CD & SP said...

Everytime I click and wait for your page to load, I silently chant "good news, good news". I thought you might get a kick out of that. And thanks for the update.

Lizzie said...

Wow. What incredible perspective you have even in the middle of this. A is blessed with wonderful moms.

Shawna said...

Your family is in our thoughts and it sounds like your little boy is quite the fighter.

Thank you for keeping us updated - we check on your website daily to see how he's doing.

Thing of you.

possiblemaybe said...

I am so, so glad that you are still finding a way to update us, despite all of the stuff that life has been throwing your way. I am in awe of your strength & the way you are working to be in the here & now. We are all celebrating the milestones that A is reaching & continue to hope that a permanent homecoming is not too far off in the future.

tbean said...

baby steps...baby steps...

xoxo

twomomsarebetterthanone said...

sorry i have not been commenting. i have been reading and praying that things get better.

so glad to hear about the latch!

hugs

R said...

Thanks for the updates. I"m sending ya a prayer. I can't wait for ya to get home so I can see lots of new pics :)

teakettle3 said...

We continue to send love, prayers and strength your way. A's progress sounds steady and great. Hugs and kisses to him.

Anonymous said...

De-medicalize, i like that. Trust me, you start to see past the wires, you even get to where you can tune out the beeps and whistles of other babies (never your own) My thoughts are with you all.

Kim

E, M, and the Little Man said...

You guys are doing great and are very wise to focus on the non-medical side of your life with him right now. I'm so glad he was able to latch on today.

*G* said...

You two sound like you're doing great in terms of taking everything as it comes and trying to focus on the positive. Latching is a great milestone! Way to go, A! It took Mater nearly two weeks to learn, and that was with constant practice...so it sounds like you've got a rockstar nurser already :)

Sending positive thoughts that things continue to get easier with the nursing and that A keeps growing, growing, growing!

Merr said...

Thanks for the update! You guys are handeling this very well. Although I am sure you have had your moments. Still thinking about you guys!!!!

Dr. Grumbles said...

Hoping for improvement soon!

Heather said...

thanks for the update. I'm rooting for him, as I'm sure so many other people are. Isnt it amazing in the support in Blog land?? It is amazing :)

tiff said...

You guys amaze me - you are going through so much, and are clearly such amazing mothers. i'm thinking of you two and sending love and healing to A and the whole fam. xo

Stacy & Sean said...

Howdy gals.

Now that we finally re-found your blog with a random assortment of terms via google...

Our thoughts and hearts are with you and little Mr Roberts. I'm so sorry to hear how much trouble and corcern this all has been.

Its sounding like the news is getting better, and hopefully you'll all three be the stronger for this.

Lotsa Love.