Surgery is Scheduled

Ian has been scheduled for surgery tomorrow morning (friday) at 10am. They ran the dye study today rectally and then attempted to go from the top (mucous fistula) but the tiny feeding tube they used wouldn't go through it, so they don't know if it's too narrow at this top portion or not. It wasn't very confirmative on how well the surgery will go. The surgeon has a back up plan to do if he is still unable to fix the intestines at this time. He's hoping he can go in there and save all of them and separate them, find the blockage and fix it...and reconnect his bowels. If the mass of small intestine is stilll too bad to separate and fix at this time, he plans to take the short portion that is the jejunostomy and connect it to the short portion he located on the test that connects to the large colon, and connect those two. The effectiveness of absorbing nutrients will depend on how much he can extend at that time. It ends up the Large colon is all okay... it's the Illieum and Jejunum that are a wreck. I though, GREAT, that's good, but was informed that no, that's the problem... All of your absorption of nutrients comes from the small intestine... the large colon only absorbs water. (of course being a nurse i should have remembered this lol). Dr. L says that this surgery will take at least 2 hours and good case scenerio, he'll be on the vent for 7-10 days post-op. He says it is going to make ian a very very sick little baby and it's going to get pretty bad before he starts to improve back. I asked him the risks of losing him, and he doesn't exactly know at this time, but says they are lower than last surgery. He says he doesn't expect to lose him on the table, but that the next few days will be the big steps. I'm trying to stay strong for him and not think about the bad parts, but it's really scarey. I just keep remembering that phone call after his last surgery and how bad he was and how we almost lost him. I know my strong boy can fight through this, surely god would not put him through so much and let him pull through, just to take him now. I will try to post updates as i can...My appearances here for the next week or so will depend on how he does and how he holds up. Hopefully all will go well and I'll update you guys as i come home to grab sleep and showers. Please remember us at 10am tomorrow...we need your positive thoughts and prayers! Here's to hoping my little puzzle pieces are all put together by tomorrow afternoon!

Hugs to u guys!

Christy

Surgical evaluation

Well i feel so much better today! I was a bit freaked out about it all last night. Ian is now at children's hospital. He's been seen by the whole surgical team and i explained to them what's been going on. They think that the excess abdominal distention caused the prolapse of intestine into the ostomy bag, as well as taht the distention is caused by Ascites. The ascites is caused from liver damage due to long term tpn (his iv nutrtition). [When the liver cannot function properly, it releases fluid into the abdomen..thus causing ascites...causing the abdomen to be really swollen.] So, they are doing a distal study (running a dye substance through his fistula to see how it routes throughout his intestines) in the morning. They are still waiting on Dr. L to get back in town to consult, but things are stable for now and Dr. P is on top of it getting everything ready. She says the surgery will most likely be very soon and since it's been almost 7 weeks now, it is about the time they intended to do it anyhow. IF when they get in there, they still cannot fix the mass of intestines, she says that if they can find a long portion of intestine useable, they can reroute that to the stomach and create new stomas....this way he'll have more length to absorb nutrients and get off the tpn. In that case, they would just wait several more months til he's older to completely fix and reattach everything. For now, they say the prolapse will be okay and they will monitor it, it's not strangulated or anything. The dr's say the surgery will be tough and will be a hard recovery and will get pretty bad before we see improvements. But, i say he was much much sicker last time and pulled through, so he will this time too! I'm feeling much better today knowing something will be done soon to help him, and that they are testing to see what they "can" see prior to going in blindly.

Please Pray for Ian

I went to see Ian again late tonight. He's up to 7lb 1oz. His abdomen has always remained distended since the surgery, but the past 2 days has been a bit bigger than normal. Tonight when i went in the nurse informed me that they had stopped his feeds again because he was having some bloody discharge from his jejunostomy. I unfastened his clothes to check his abdomen to see if it was more distended and said "OMG what is wrong with his belly?!?!" His tiny pink stoma is now huge and long...What has happened is that the pressure in his abdomen has now caused the intestines to actually protrude through his stoma inside out... to the outside of his body. I immediately asked to talk to a Dr. The nurse called the Dr and he spoke with me on the phone saying it was the pressure causing it and claimed that this isn't exactly abnormal. What???? He said the surgeon is still out of town but they will call him again tomorrow and see when he may be able to get to this hospital to see him. I'm extremely concerned at this point that they are waiting too long... They waited too long last time and the damage was so severe that the surgery was extremely unsuccessful and they almost lost him. I asked that he call another surgeon and get an opinion on wether this was truly okay to hold off or if something needed to be done soon. He called back saying that the surgeon on call said to transfer him to Children's hospital, don't wait for the other surgeon. Soooo, he will be transferred back to children's first thing in the morning (mediflight team is busy and it's the soonest the other nicu can have a bed open for him). He is stable tonight, he's doing okay, i'm just so worried about this new issue. It's so hard! Why can't something work out right? I called in to work for the rest of the week and told them i'd let them know when and if i could come back within the near future. I guess it's all too soon to be working, i dunno. Everything keeps falling apart when it's finally going well. I'm very scared for him and I hope they can find out what is going on and fix it and fix him soon. This whole intestine thing with him is so scarey. It's like there's never been a "calm" for them to "recuperate" and noone knows what's going on in there until they open him back up. I just held him and cried and cried cuz i'm so scared and frustrated at the not knowing... It just feels like it's one thing after another and noone knows what's going on or what will happen. I'm okay with sending him to children's this time, that way i can say "i want to see a surgeon right now" and it will be possible, whereas at this nicu, there are no neo surgeons...they all have to come from children's to eval the babies. Please pray everything works out for us and Ian's problems can be resolved. Thank you guys for being here for me the past 3 months. Ian is 3 months old today. Please please god give me another 3 months!

Ian is off the vent again!

Ian came off the vent yesterday. He's now on a nasal canula at 3.5L (vapotherm) and doing well. Still no word on the next surgery. He's now 6lb 11oz!!!! And not even due til next month! Crazy huh?

Oh and i thought this was too funny....I was holding him the morning after they reintubated him and looked down and started cracking up so i snapped a pic.

COINCIDENCE???? Or is he just telling us how he truly feels about having that tube back down his throat???? LOL.

He's had a set-back

Ian was not doing well last night and had to be placed back on the ventilator. He was lethargic, not very responsive, and had poor color. They ran his blood gasses and they were very high, so the Dr. ordered him to be back on a ventilator. The labwork points toward an infection and he's already on antibiotics (has been for several days) for that. Right now most of the time, he's letting the ventilator do all the breathing for him. I guess he's wore out from the infection, whereever it is. He also was staying too cool, so they have had to take him from his bassinet and place him back into a warmer. It's so hard to see him set back and feels like we are at square one again. I'm so tired of seeing him hurt and go through so much. It just isn't fair. Hopefully he will start feeling better soon and start doing well again.

At this point, we are waiting for him to be ready for his next surgery on his intestines. They do not know what shape they will be in when they actually open him up. I'm hoping and praying that his intestines have healed in a way that they can be separated and save the majority of them. If they are unable to save them, or a good portion of them, then he will have to be go on a list to receive a bowel/liver transplant. If able to fix them with the next surgery, i'm not sure if they will reconnect his bowel at that time, or if that will be done in a separate surgery down the road.

He also has inguinal hernias on both sides now, and will need surgical repair for that. The dr said they will generally wait until the baby is a bit bigger and older to perform that repair.

Here's hoping he holds strong and pulls through it all and grows up to be a big strong boy!

Please keep in your prayers.

More pics

Ian is 5lb 15oz today! He's now getting to try a bottle 4 times a day. I fed him his 3pm bottle, but he puked it up all over me lol. Man did we both stink! lol

Attention Mommies!

Due to a recent change in the forum that friends and i were using, we were all banned unexpectedly! Due to this, there has been a new forum created so that we may all continue our chats, friendships, and support of each other. If you are in a high risk pregnancy and would like to talk to others who have been thru this or if you are a mother who would like a place to chat with other moms, seek/give advice, seek/give support or just hang out, come visit us at www.postpartum.proboards46.com . We are a group of "graduated bedresters" who wish to remain in contact after our pregnancies have come to an end. See you there!

Bottle baby!

Ian is now getting Bottle feeds twice a day. He's getting 15cc at a time (as much as he'll drink of the 15cc that is). He's doing great with no oral aversion, no choking, good suck/swallow reflex. He's 5lb 11oz now!!! He is now jaundice all the time, with a yellow hue to his skin, and a yellowish green hue to the whites of his eyes. This is due to TPN he is on for nutrition. It interferes with liver function and basically causes damage to the liver. Hopefully his next surgery will turn out well and he'll be getting feeds and off tpn after that. I hold him all the time anymore, it's great!

He's such a chubster anymore! lol

I swear he has the chubbiest cheeks ever! lol

What a wonderful week!

It's been such a great week with Ian making so many quick improvements just since Monday, so i just wanted to share some good news Since Monday he has:

1. Came off the ventilator and is breathing on his own with NC (vapotherm)

2. CRIED...biggie for me to hear him (Cuz of the vent is out of course)

3. He's wearing clothes!!

4. He's out of the warmer and into a bassinet as of today because he's holding his own body temperature!

5. I can now get him out of his crib by myself and hold him whenever i wish, for as long as i like! I was only able to hold him for one hour once a day before now.

6. He's getting small feeds of pedialyte and tolerating them well so far.

His wounds are still healing and concern me alot tonight because you can now see the sutures in the wound beds that were used to close the tissue INSIDE his body! Looks very strange but i have them contacting the dr and surgeon first thing in the morning.

YEAH For all the improvements! I'm so excited and happy!

Isn't God amazing!

All dressed up

I dressed Ian in his first "real" outfit today, wrapped him in his own blanket and got him outta bed by myself :). He looks soooo good today! Such a sweetheart! 5lb 6oz.

Vid of Ian's first audible cries

The lighting for the vid was very poor but if you listen closely, you can hear his little weak cries. It's so sweet to hear after 2 months of no sounds. Just wanted to share :)

He's OFF THE VENT!!!!!

Ian is off the ventilator!!!!! This is such a hugeeee step for him! He's on a nasal canula at 5L (Vapotherm) and doing well so far. His little cries are weak (from the vent between his vocal cords for so long) but soooooo cute. He is sucking a pacifier like crazy too! He's now 5lb 4oz as of last night and he's getting lots of baby fat, and has a double chin to boot! LOL.

Sunday Night

Ian is down to 7 breaths per minute on his ventilator now!!! They said they expect him to be off the vent tonight or in the morning. If he extubates himself tonight (they said he keeps pulling on the tube), they will leave it out and try a nasal canula with oxygen. If he doesn't pull it out tonight, they may extubate him tomorrow. We'll see how he does! Hopefully he'll do well and not need the ventilator back. He's on very light feeds of pedialyte now to see how he'll handle them and they will gradually increase them. He's 5lb 4oz tonight! He's a growing boy! Awwwe, i love him so much! :)

Still on the up and up! :)

When we went to see Ian last night, we found out he is now down to 10 breaths a minute on the ventilator. This means the machine is breathing 10 x's a minute for him and he is doing the rest (normal for a lil guy is 40-70). They have also ordered that if he accidently becomes extubated, then they are going to leave the ventilator out and put a nasal cannula on him at 2-3L of oxygen and see how he does. There is always the chance he'll need reintubated, but it all depends on how he does. They have also decided to start some small feeds (non-formula) on him today to see how he tolerates them. We had been told he couldn't have feeds until after the next surgery, but this will not be tried through the fistula which involves the majority of his intestines. Dr. R says that they will probably do a GI study 6-8wks from his date of surgery (like a barium study) to see what they can tell from that. He's been really fussy lately and i was wondering if maybe it's because he's feeling hunger and asked a couple of the nurses, so maybe that's why they are attempting the feeds now too. I also asked if they could start swaddling him instead of laying bare in the warmer, because he stays much calmer when he is "contained" (wrapped all snug). So this lil guy is soooo strong and fighting through so much. I'm so proud of my teeny lil guy. Oh well and maybe he's not so teeny anymore. He weighed 5lb 2oz as of last night!!! :) GOOOOO IAN!!!!!

February 1st

Here's my growing boy. Isn't he getting big? He's 4lb 14oz now (2278grams). He likes to be all snuggled up cuz he's such a big boy! :)