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July 2013 Moms
gutsymama
member
Lucas - Surgery Update; or, the Adventures of Frankentestine
gutsymama
member
Short Version: After Lucas's second surgery, our long-term outlook is a lot more positive! He has just enough viable bowel to get by without long-term IV nutrition. But in the short-term, we'll have to stay in the NICU a little longer than expected because he'll need another surgery in six weeks to finish reconnecting everything, so we'll likely be here for another 3 months. He's doing great right now, and mom and dad are hanging in there - it's starting to get easier again. Thanks so much for all your thoughts and prayers! I did see your posts on the day of surgery even though I didn't respond, and it was nice to know we had so many people pulling for us.
Cliff's Notes to our background: Lucas was born at 34 weeks with gastroschisis, which is an abdominal wall defect that left a large portion of his intestines growing outside of his belly, and the outside part was really matted together. This had gone undetected on his ultrasounds, so it was a surprise when he was born. He had surgery when he was 2 hours old to put everything back inside, and had another surgery this past Tuesday on his 2-month birthday to see if his bowels were viable and try to separate and reconnect everything if they were; he's been getting 100% of his nutrition via IV since he was born, but doesn't have any other issues related to prematurity.
Long Version:
Surgery was long; it was 6.5 hours from the time we left him in pre-op to the time he returned to his room, which I imagine went by infinitely more quickly for him than it did for Mom & Dad. He held up really well and didn't have any problems handling the anesthesia, and they had given him a transfusion of my blood a couple days ahead of time to prep him, so he didn't end up needing any blood in the OR (and I can hold that over his head forever....my blood quite literally flows through his veins!). But since it was such a long and invasive surgery the recovery process takes a little longer; they're keeping him lightly sedated for a little bit in order to keep him comfortable while his belly gets through the initial phases of healing, but we have started weaning him off of the drugs so he was able to come off the ventilator yesterday and is working on getting back to normal. Yesterday was a little rough, but things are looking better today - his breathing is regulating and the swelling is going down, so he's starting to look and act a lot more like himself, just still a little out of it.
The biggest goal of this surgery was to find out exactly what we're dealing with, since the doctors couldn't be sure what his bowels were doing in there over the past two months. We ended up with some very good news for the long term and a little short-term bad news: Luke has enough viable bowel to be able to thrive without long-term IV nutrition and without a transplant (just enough - around 35 cm, and a normal amount would be about six times that - but it should be enough), but he'll need another surgery to finish the reconnection before he can really start using all of it.
Our surgeon was "pleasantly surprised" by the state of Luke's colon; it turns out that the only reason the contrast study had failed was because some plugs of meconium were blocking the dye from going anywhere, and those were cleaned out easily enough. But he had several blockages in his small intestine where the intestine itself was too constricted to be useable, so in those places the surgeon removed the constricted sections and essentially reconstructed his small intestine by sewing the viable pieces together - 14 connections in all. We have lovingly dubbed it his "frankentestine," and we're pretty sure we know what he's going to be for Halloween!
Because there were so many connections, the surgeon had to leave the stoma where it was in order to prevent anything from getting through to the lower, repaired part, because even if he weren't eating anything, if any of those connections didn't heal properly Luke's saliva and stomach juices could leak into his abdomen and make him extremely sick. So to prevent any leakage, our surgeon did not yet reconnect the upper part of his intestines to the newly-repaired lower part; instead, the upper part of the intestine still empties through the original stoma into an ostomy bag (or it will, once his incision is healed enough to place a bag over it). This was pretty discouraging for us since we've had quite a bit of trouble keeping his ostomy bag on and keeping the skin on his belly in good shape underneath the bag, but we can deal with it for a few more weeks, especially since we know it's not forever and we're heading toward some semblance of normalcy. A temporary feeding tube on his belly leads into the lower part of his intestine; he will have another contrast study done in a week or so to make sure everything can move through okay, and if that goes well we'll be able to start a little drip feed into the repaired section so it can start learning to function and grow.
His next surgery should be about six weeks from now, and if everything goes according to plan it should be his last. They have estimated that he'll need another six weeks or so after that to rehabilitate his bowels and work out exactly what he needs in terms of feeding and nutrition, so (with a little wiggle room because things tend to move slowly around here) we're probably looking at staying in the hospital until late October or November. It's a little difficult to face the fact that our baby won't be home until he's five or six months old, but the people here continue to be absolutely amazing, and as our surgeon said (with just a little bit of moisture in his own eyes - I'm starting to think he's really just a big softie), if he's home by Thanksgiving, we'll really have something to be thankful for.
The biggest goal of this surgery was to find out exactly what we're dealing with, since the doctors couldn't be sure what his bowels were doing in there over the past two months. We ended up with some very good news for the long term and a little short-term bad news: Luke has enough viable bowel to be able to thrive without long-term IV nutrition and without a transplant (just enough - around 35 cm, and a normal amount would be about six times that - but it should be enough), but he'll need another surgery to finish the reconnection before he can really start using all of it.
Our surgeon was "pleasantly surprised" by the state of Luke's colon; it turns out that the only reason the contrast study had failed was because some plugs of meconium were blocking the dye from going anywhere, and those were cleaned out easily enough. But he had several blockages in his small intestine where the intestine itself was too constricted to be useable, so in those places the surgeon removed the constricted sections and essentially reconstructed his small intestine by sewing the viable pieces together - 14 connections in all. We have lovingly dubbed it his "frankentestine," and we're pretty sure we know what he's going to be for Halloween!
Because there were so many connections, the surgeon had to leave the stoma where it was in order to prevent anything from getting through to the lower, repaired part, because even if he weren't eating anything, if any of those connections didn't heal properly Luke's saliva and stomach juices could leak into his abdomen and make him extremely sick. So to prevent any leakage, our surgeon did not yet reconnect the upper part of his intestines to the newly-repaired lower part; instead, the upper part of the intestine still empties through the original stoma into an ostomy bag (or it will, once his incision is healed enough to place a bag over it). This was pretty discouraging for us since we've had quite a bit of trouble keeping his ostomy bag on and keeping the skin on his belly in good shape underneath the bag, but we can deal with it for a few more weeks, especially since we know it's not forever and we're heading toward some semblance of normalcy. A temporary feeding tube on his belly leads into the lower part of his intestine; he will have another contrast study done in a week or so to make sure everything can move through okay, and if that goes well we'll be able to start a little drip feed into the repaired section so it can start learning to function and grow.
His next surgery should be about six weeks from now, and if everything goes according to plan it should be his last. They have estimated that he'll need another six weeks or so after that to rehabilitate his bowels and work out exactly what he needs in terms of feeding and nutrition, so (with a little wiggle room because things tend to move slowly around here) we're probably looking at staying in the hospital until late October or November. It's a little difficult to face the fact that our baby won't be home until he's five or six months old, but the people here continue to be absolutely amazing, and as our surgeon said (with just a little bit of moisture in his own eyes - I'm starting to think he's really just a big softie), if he's home by Thanksgiving, we'll really have something to be thankful for.
FKA mimi4347: diaper rash magician and unofficial expert on excrement
This kid may not have a lot of bowel, but he has plenty of guts!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
This discussion has been closed.
Re: Lucas - Surgery Update; or, the Adventures of Frankentestine
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DD's Food Allergies: Peanuts and Rice, Outgrown Dairy!
8/09 Dx PCOS & Hashimoto's
BFP #2 12/13/11. Missed M/C at 11w5d, measured 8w6d. D&C 2/1/12
Never in my arms, but always in my heart.
TTC since September 2014
My Ovulation Chart
DD1 7/10/08 DD2 8/11/10 DS 7/2/13
L: 7/12/13
C: 5/11/15
E: 3/7/17
Due 11/10/18
More t&p's coming your way. ((hugs))
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TTC since 6/2003. m/c 9/14/03 8 weeks, 5 chemical pregnancies, mmc 6/04 12 weeks, Michael born sleeping 5/25/05 at 22weeks always our angel, fought ovarian cancer and won, m/c 4/06 5.2 weeks and 7/07 6.6 weeks,Our Miracle baby girl born 4/8/10,mc 12/18/11 at 5.3 weeks, BFP 10/26/12 dating u/s on 11/8/12 showing a strong heartbeat!EDD July 4,2013. RCS on 6/27. Baby boy in NICU for 8 long and scary days before he was able to come home. We are now a happy family of 4
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I lost my angels 07/2010, 04/2017, 10/2017
Meimsx no more