Oh IVs

WARNING: This post contains discussion of poo and may not be suitable for all audiences...

The only real issue that Spencer has had since surgery Wednesday is that he hasn't been able to keep an IV. The poor little guy has been poked so many times, it's painful to watch. He didn't have a central line put in for this surgery because he wasn't going to need it for as long, and because there are so many risks with having one the surgeon didn't see it necessary. However, since Spencer is so big (he's almost 8 lbs 10 oz now!) he had to have fluids running pretty fast through his IV. It has been a long couple of days dealing with that. Yesterday, the neonatoligist spent over 40 minutes himself getting an IV into a very small vein in Spencer's hand to buy time for the other places to heal (after the nurses had already tried for a half hour!). That one lasted less than 12 hrs (to give you an idea of how fast he has been going through them) and early this morning they finally got one in his foot and at this point it's still going...they were able to dial the flow of his TPN down since his feedings have picked up to 20 mL today, which has really helped his IV stay this long. So, speaking of him eating 20 mL...Spencer got to start eating Friday evening after only about 48 hrs post op! He was passing gass so well and had a bowel movement, so even the surgeon-who was a little surprised at how quickly things started working again-couldn't deny starting him on food. Of course, it was only the 5 mL that he started at before! Boy has he not been very happy the last couple of days not getting to eat what he wants, we know it's the best thing for him, but you can't tell him that!! 

We are heading in the right direction and definitely getting anxious. I can't believe how happy it makes me to see my son working to poop. It's just the most amazing thing. To know that just a few days ago he couldn't do that, and now he's doing what he should is unbelievable (today I got to watch him grunt one out-it was bliss). Yesterday was the first poopy diaper that I saw and we took a picture for the scrapbook we're going to make Spencer-I don't think he'll appreciate that image as much as we do! I wanted to post it (just for you Christine!), but Artie won't let me...that's probably best-but I'm just so darn proud of it:)!!  Overall, he is just doing amazing and we are hoping with every ounce of our being that things continue that way this time!  

Hopefully, I'll have some [appropriate] pictures to post soon! 

UPDATE (6/29): Spencer's IV is gone! He has gone up to 40 mL per feeding and is off TPN and had his IV taken out this afternoon...now we just wait for him to get to full feedings and get to a place where they feel comfortable to discharge him, hopefully by the end of the week:)

My Hero

...is my strong, resilient, amazing 5 week old.  

Spencer pulled through surgery #2 like a champ.  It was a very long day.  Surgery wasn't scheduled until 4:30 pm and didn't get started until 5 pm. Needless to say, Artie and I were balls of nervous energy all day long. Spencer went NPO (stopped eating) after his 5 am feeding this morning and did pretty well the whole day until about 1 pm when he wanted food! The doctor came in and told us what he was going to do and we walked with our little man down to the OR before giving him kisses and watching him go through the doors. The surgery took 2 hours-what a long wait-and when the surgeon appeared in Spencer's NICU room where we waited and said that he was great and it went perfectly...well, everything after those words is sort of fuzzy. Basically, things looked good when he got in there. He didn't have to take much more of the intestines out (just a tiny bit at the ends) and there weren't any hernias to correct! Spencer may have a slight problem with his colon down the road, but the surgeon didn't seem that concerned about it and we'll deal with that if we have to. 

In the meantime, we wait some more. Spencer won't be eating for the next few days to give his intestines a chance to heal from being put back together in two places. He was taken off the ventilator right after surgery and already on room air when he got back to his room-which is huge (not his room, the progress)! He also was maintaining his temperature without being on a warmer and, thanks to a small blood transfusion during surgery, his blood pressure was good. I was a very happy mama because I got to hold him once he got back after surgery-which is something I didn't get to do for a few days after his first one. They ran some fluid through his intestines before they closed him up, and it went where it was supposed to go. I cannot wait for a poopy diaper instead of a poopy bag! He was also trying to go to town on his pacifier-so good sign that he was already hungry and wanting to eat. He won't get to come home until he is up to full feedings again and maintaining his weight.

On a sad note, I am in mourning over the loss of my Blackberry today. In the fog of trying to get to the hospital this morning I misplaced it and it is nowhere to be found. I believe I may have set it on top of the truck and did not retrieve it before we left, oops. Now I'm forced to use an old, regular cell phone (not good for texting) that we had laying around the house until I can get another. RIP my pink curve...(which took with her a lot of pictures of Spencer and Avery that I cannot get back).

As a final note, my little brother is officially Private Jacob L. Redwanski of the U.S. Army. He had his physical and signing today down in Indianapolis. He leaves for basic in November and then heads to Fort Gordon in Georgia for his 20 week job training with computers. We are so proud of Uncle Jake!

Thank you so much for all of the continued thoughts and prayers:)   

GI results & more

Spencer had his lower GI test and KUB (abdominal x-ray) to check to see if his bowel was healed, that there were no leaks, and that enough of his intestine grew back to reconnect. I'm happy to report that all is looking good! In fact, surgery #2 has been scheduled for Wednesday morning-ahead of schedule! We are so happy that his surgeon thinks that he's healed enough and doing well enough to have the surgery next week. For the first time since all of this happened (I can't believe it's already been a month) we are feeling like we have some light at the end of the tunnel. We have a goal-his surgery-and then from there we know what has to happen before he comes home. He will be in the hospital for awhile after surgery because he will be on a ventilator again-and off food until that comes out. When that comes out he will have to work back up to full feedings again. So, we have a ways to go, but we are hoping to be home as a family by the 4th of July. 

Yesterday, he was allowed to eat what he wanted-and has been a very happy and content boy since then! He's eating between 60 and 90 mL every three hours! He's also gaining and holding his weight well and by far the biggest baby in the NICU weighing in around 8.9 lbs!

So now that you have the recent low down on Mr. Spencer, I thought I'd fill you in on Ms. Avery (since it seems like she has been neglected in her time on the blog lately)! First off, she's a real chatter box. She is putting words together and picking up words like crazy (which means mommy and anyone else around her really needs to watch what they say!!). Her favorite food right now probably has to be cheese quesadillas and apples. She's really into being outside and blowing bubbles.  One of the things about Spencer being in the hospital that has been so hard is not getting to spend my usual days with Avery (since I spend the day at the hospital). I miss spending the whole day with her, she is such a little person now and so much fun to be around:)

I'll update on surgery. Until then, enjoy the pics...

Avery enjoying some Subway.

She thought she was so great finding mommy's slippers and walking around the house in them.

One of her loves, the swiffer! This is my old one from college and Artie removed the middle part so that it was "Avery sized".

This is Spencer's favorite position. He loves cuddling on anyone's chest.

He's just being cute laying on mommy's lap.

We took his floor gym up to the hospital so that he could start using it because he has been more alert.

Checking out all that is to see on his gym

New Plan

It has been a very long week. Spencer is up to 30 mL ( 1 ounce) at every feeding now.  He is having good input and output and the residual in his stomach has been very low (a good thing). Artie discussed the new plan for Spencer with the surgeon yesterday. The bad news is Spencer doesn't get to come home in between surgeries. The good news-so far-is that his surgeon thinks he is doing well and hopes to do his reconnection surgery a week from Wednesday/Thursday. That's ahead of schedule, thus one of the reasons for Spencer not coming home in between. Another is, since he is doing the surgery sooner, he wants to leave his central line in for after the surgery/during surgery. All of this means that the plan for Spencer to be home for good looks to be happening by the 4th of July. He will be a month and a half old by then, which is getting to be very, very hard for us. We just want everything to go as planned. A lot rests on the test Spencer will have sometime this week to check his bowels to see if they have healed and to make sure there are not any leaks. If this test checks out the way the surgeon is hoping then the above mentioned plan will go on...if not, we're in a bigger mess and who knows...I can't even think of that-but it will be very bad. Basically, Spencer is only digesting out of his small intestine-his ostomy bag is collecting everything from there. The other stoma he has, his mucus fissure, is to drain his large intestine. His large intestine is what was very damaged and where he had some of it removed-no food has been going through it for almost 3 weeks. This test will check to make sure that has healed up.

Please keep him in mind this week as he has this test. We need this test to show good things so we can begin the countdown to surgery #2 and finally bringing our boy home. At this moment we're doing everything we can to make that happen. Spencer is not receiving any type of medicine (he was supposed to get his hep B shot) that may give him a fever and push back surgery. The nurses have also told us not to have anyone up to see him because of the risk of him getting something. We are too close...   As always, we thank everyone so much for their continued support. We are really struggling with not having him home yet, but we are optimistic that things are going to work out for our little miracle.  

3 weeks

Spencer is 3 weeks old today.  It's been 3 weeks since one of the happiest days of my life.  It's been 3 weeks since one of the most devastating days of my life.  Looking back, Artie and I can't believe it's been three weeks, it really feels like months and I feel like I have aged at least 10 years.  On the bright side, Spencer got to eat today for the first time in 2 weeks!  On the down side, he's only getting 5 mL of formula per feeding (which is only a teaspoon!).  If he does well, his amount will increase very slowly.  The formula he is on is a special type that's specifically given to babies with bowel diseases/issues.  It's called pregestimil and it is more easily digested than regular formula.  He is taking the formula well and hopefully it continues that way so we can keep making progress. 

At this point, we have no idea how much longer he will be in the hospital.  It is going to take at least a week for Spencer to be on full feedings and off his TPN (the nutrition he's getting intravenously) and that is an optimistic time if everything goes perfectly.  We could possibly have 3 1/2 more weeks to go in the hospital.  I don't know what's going to happen and we're just taking it one day at time, otherwise, we would go out of our minds wondering what's next. Spencer has an abdominal x-ray scheduled for tomorrow morning to see if everything is digesting well...hopefully that is looking good.

More news to come when we get it... 

Spencer has discovered his hands and it's absolutely adorable...I tried to keep him awake by taking away his paci, but the little booger soothed himself with his fingers anyway!

Awake with a grasp on daddy's hand-he likes to hold fingers.

I am biased, but my son is the love of the NICU.  Every nurse wants him and all the nurses that have him brag about him to everyone else.  I think it's because they are not used to getting many full-term babies that stay awake and can be a little interactive.  His nurse had him walking the hall today since he was taken off his suction last night (the tube that's in his mouth would suction intermittently what was in his stomach) and is more portable with only his IV tree to tag along.  Christine-he had this tube in his mouth because he wasn't eating and it was a larger one, today they put the smaller one through his nose so it wouldn't interfere with eating.

This is my happy, alert little guy (I like to call him my mini me, especially since-at least for now-he has my dark hair and big, dark blue eyes) today after his first feeding.  He made the silliest faces while eating for the first time, maybe because he forgot what it was like or because that stuff stinks so bad-it must taste a little gross too!

Slight Scare

Yesterday, while I was up for the day with Spencer, we had a slight scare.  As the nurse was doing an assessment on him, she thought she saw some drainage leaking from his central line. For all non-nurses/medical pros, Spencer's central line is basically a more permanent and durable IV. It was surgically put in last Friday and runs in through his leg, through a vein in his body close to his heart. He has no peripheral IVs anymore so he is getting his nutrition and all of his antibiotics through this line.  It is very important. So, Spencer's surgeon ordered a culture on the drainage. I was giving Spencer a bath when the nurse changed the dressing around this line and took the culture. She said to her it looked infected and would be surprised if it came back negative. My heart sank. If there was an infection, the line would have to be taken out immediately-which would have really complicated things (it's complicated to explain why it would be a really bad thing, so I'll spare you the long story). Artie and I got to the hospital this morning bracing ourselves for the worst...but, his surgeon checked the preliminary results and it's showing no infection! I know we got this good news because of everyone who has Spencer in their thoughts and prayers-so THANK YOU! We're still watching it carefully and I'm still paranoid, but I'm so glad we didn't get more bad news! Here's to hoping we're headed in the right direction! 

Such a sweet face, so content in daddy's arms.

Eyes are open! He has really been a lot more awake the last few days and it has been nice to sit with him while he's looking around. I originally took this picture to show Spencer some day how bruised his little hand got from having IVs in it so long-it's literally been black for a week-I'm so glad he doesn't have IVs in it anymore (I hope it stays that way)!

Pity Party (Semi) Over

I just have to say that I have the most wonderful friends.  You guys have really been such great pillars of strength for me and have had such good words of advice.  This is truly the hardest situation ever, but I really am trying to find all of the things that are good.  I have a smart, healthy, amazing daughter who makes me smile everyday.  I have a husband that is wonderful to me and a fantastic dad.  My son hasn't been home with me yet, but I know that he will-eventually-be home and that's definitely way better than never having him come home.  Did I mention he's also amazing.  He's growing so fast already.  However, if I have one more person ask me how early he was-I'm going to put a neon sign in his room that says "do I look like a premie?" (we have learned that nearly all babies in the NICU are premies, so that's what people assume).  In other words, he's growing weight and length wise like crazy-even though he's just getting nutrition through his blood and not even eating yet!  We're taking some of his clothes up for him to start wearing-otherwise, he'll be too big when he gets home for a lot of the clothes!  Last night, he got a swing put in his room and absolutely loves to swing!!  Please, don't get me wrong-I am so very thankful to have Spencer still with us considering all he has over come-it's just so hard not to wish things were different.  Spencer may be destined for something special and this is just part of the plan.  Artie and I are forever changed.  We owe so much to the doctors and nurses that have kept him with us.  We will become blood donors-I'm sad to say we weren't already donors-because someone else's donation saved Spencer's life.  We are also going to donate our baby stuff to the NICU because they have so many babies that need things like clothes and swings-stuff that Spencer has gotten.  I do have so much to be grateful for and I thank my friends for helping me see that:)

Thank you so much to my wonderful SMC girls-for everything!  We also couldn't get through this without our family doing what they can to help-watching Avery so Artie and I can be at the hospital together, mowing our yard, taking care of the dogs, and all of the other offers.  

Updates will come as we know anything different.  He is having blood tests less-so that's good-and, his bilirubin went down to 0.6!!  Thank you! 

Status Quo

I'm going to be honest, I'm pretty down in the dumps.  I'm sad and just when I think I can't be any more sad, I can.  My family is torn apart and Avery doesn't even get to see her brother.  Spencer is 2 weeks old today.  I hardly feel like I had a baby anymore and being pregnant seems like a very distant memory (any pain from the c-section is pretty much numbed from the emotional pain).  Spencer is my last baby, I won't have any more and I'm not getting to enjoy the very important first weeks of his life-then again, I'm always counting my blessings that he's here to turn 2 weeks.  My heart breaks for our little trooper, he's wanting to eat so bad-and can't until next Wednesday...then we're playing another waiting game to see how well he eats, how well his bowel handles the food, and then maybe we can take him home.  If there are any problems with him starting to eat again, he may remain in the hospital until he has his second surgery-which is honestly a thought I can't bare.  At minimum-if everything goes perfectly (which we know it hasn't for Spencer, so I'm really not counting on anything) he will be in the NICU for 2 more weeks.  Right now, we are desperately praying for feedings to go well and to be able to take him home for a little bit and have an out patient surgery.  If he has his surgery while he's still in the hospital, who knows how much longer he'll be in there.  Frankly, I'm so angry right now.  I cry everyday and feel like we're getting nowhere-each day is just maintaining status quo.  We're simply waiting for his antibiotics to be done so he can start eating.  

This will be the last post for awhile, unless anything major happens between now and him starting to eat.  I'm just so upset, I don't know what to say anymore, I don't know what to think or what to believe-other than I know I have an amazing son (my daughter is pretty awesome too).  I'll leave you with a few pictures and a desperate plea that we only get good news from here on out.  

I took this of Spencer today, he was able to be dressed for the first time last night-I even got to give him his bath (a first for me).  He was sleeping like this, so dramatic.

Artie took this the other night.  He loves sleeping on his side or on our chests.  Yesterday, he slept on my chest for 4 straight hours-we were both in heaven.  

This is Avery and her cousin, Garrett.  Chad and Jamie took Avery this past Saturday to get out and have some fun while Artie and I were at the hospital-she always has fun with this guy.

I wish I could smile like this right now-I'm saving it for when my family is all together.  In the meantime, I love seeing her smile (even if she does have food in her mouth).

This picture was taken the day before Spencer got sick again and the day before we thought we were bringing him home...Avery loved giving her brother kisses and I cannot wait until she can give him all the kisses he can handle.  His skin is no longer yellow, it's nice and pink like it should be.

Improvement

Sorry for no updates for a few days. We have pretty much been at the hospital the last few days following surgery.

Yesterday, Spencer had a small blood transfusion to get his counts back up. They weren't dangerously low, but lower than the doctors would like-which was expected after his exchange transfusion, surgery and all of the blood tests that he has had.

The good news we have gotten recently: his abdominal scan yesterday didn't show any more air leaks; he started pooping in his ostomy yesterday; his bili was down to 1.7; his blood counts have held well today after his transfusion yesterday; and he was taken off of his ventilator this morning. 

We are feeling pretty good about his progress, considering what he is coming from. Probably the next big thing will be when he has his test to see if they want to start him on feedings-we aren't expecting this anytime really soon, though. Spencer still has 8 days on antibiotics-so we'll be in the hospital AT LEAST that much longer (after today). He is finally able to be swaddled, at nearly 2 weeks old, since he isn't on any bili lights anymore-he is one happy baby:) He was also taken off of his warming bed because he was holding his own temp-without being swaddled-which was really good too. I'm still constantly on edge, just because of everything he has had to go through, so I'm not really seeing the end of this nightmare yet, but I hope we're getting closer.

We truly can't say how grateful we are for all of the support-really it has been so amazing. I am hoping to get into my email box within the next few days-so if you haven't heard a reply from me, don't panic-I really haven't checked anything since I have been home from the hospital, other than taking the few minutes to keep everyone updated on the blog. Thank you for any positive thoughts you continue to send Spencer's way!