Beck should be heading home this afternoon. As with all things hospital related, this should take about 6 hours longer than necessary. His last antibiotic is at 1pm, so we're hoping to be home in time for dinner.
Beck's actually been well since last Wednesday, but we wanted to complete the full 10 day course of antibiotics. That's what kept us here over the weekend. Either way, we'll be glad to get back into the rhythm of home.
Well, we're writing this Sunday afternoon from Texas Children's Hospital. Beck had to make a trip back down to the Medical Center on Friday afternoon. The cold he'd had for a few days was getting worse, so we took him to the pediatrician. Next thing you know, we were in the Emergency Room getting nebulizer treatments, antibiotics, and steroids. Beck's Cystic Fibrosis clinic here at Texas Children's wanted to be aggresive with even the mildest cold/flu/virus, so they decided to admit him to the hospital. It's likely that he has pneumonia, so we'll be here until he completes the full course of IV antibiotics. That should be 1-2 weeks. A long time to be away from home, but much better for Beck and his lungs in the long run.
As of Day 3, he's already feeling much better. His lungs sound better, he's stopped the constant coughing, he was able to get some sleep, the doctors were able to remove the nasal cannula, and he's smiling and playing again.
Mom and Dad have been sitting on the couch, taking care of Beck, going home to play with Elliott, and getting some sleep here and there. Speaking of Elliott, he can now stand on his own for up to 30 seconds, and has started to lunge forward in a motion that could optimistically be seen as 2-3 real steps of walking. He's also has teeth #5 and #6 starting to come through.
As a side note... we had a few people ask about our doctors, the NICU, and other hospitals... where they are located, and other stuff. Houston is very fortunate to have the Texas Medical Center. TMC is the largest medical center in the world, with over 45 medical institutions, medical schools, and hospitals, over 4000 physicians, and lots of other insane statistics. Beck is currently at Texas Children's Hospital. We live really close to the TMC. We just have to turn left, and drive beneath the shady live oaks of Montrose, the Museum District, and Rice University for a few miles.
Well, the inevitable has occurred... we have hired a nanny. G, Tito, Grammy and Paw Paw could avoid work for only so long, and despite our insistence, none of them was willing to quit their jobs. So, in order to fill the large void left by their daytime absence, we looked outside the family. We were extremely fortunate to find a wonderful Londoner named Sabrina. She'll be joining us on Monday, and I'm sure a few pics will follow. She's super sweet, and Elliott immediately flashed her a huge smile at their first meeting.
Other than that, Beck has continued to grow. We have lots of doctor's visits, but they all like what they see. We've had very little J-Tube drama over the last week, and everything has stayed in its proper place. Elliott is learning to stand on his new activity center (courtesy of the super-cute Jackson triplets, and their parents, Jimmy and Lindsey). He's also moved on to juice, and a few new foods.
There are a few more pics after the break...
Beck has surpassed the 7000 gram mark. That really just means that he has continued to grow well since coming home... and 7000 is a nice, round number to declare. He's actually at 7060. It also means that he's inching towards his first pound, grown solely at home. We'll let you know when he gets there.
Elliott's about to get his first sip of pear juice... it might even be out of a sippy cup. Lately, he's been making this guttural sound. It reminds us a lot of the youngest kid in Overboard (the one that tries to imitate Pee Wee Herman), or Froggy from the Our Gang (Little Rascals). Either way, we're hoping it's just a phase, as it sounds rather evil.
Here are some pics to boot... a few more after the break.
Elliott the explorer found a hidden waterfall coming out of the bathroom wall.
(Warning: This video may only be cute for a few seconds, unless you are a parent or grandparent of the baby. Proceed at your own risk.)
Bath time for Elliott.
Here are a few pictures for you, the photo deprived masses. Elliott is clean and happy. Beck is sleepy and growing.
More pictures after the break...
Another first...
Beck was actually much happier than the picture makes him out to be. It was a nice day for a nice walk... albeit a short one.
Show me the love.
Everyone is doing well... just a bit tired. Elliott is getting used to sharing the attention he receives, and Beck is adjusting to life away from the hospital. In general, he really likes the change, but... being at home brings its own challenges, like: When J-tubes pop out, you have to make quick visits up to see the surgeons (Wednesday); When the G-tube stops draining, and Beck starts crying you have to take verbal instructions from the surgeon over the phone at 2 in the morning on how to irrigate and flush the tube (Friday, a little bit like that commercial where the guy is making his own incision); You realize exactly how much work a skilled NICU nurse does in a 24-hour period; You become confused and blurred by the 20-30 meds/treatments your baby gets over the day; You become confused and blurred when you sit to close to the meds during treatments, and inhale all of the excess Albuterol.
It really has been wonderful to have both boys home for the first time. Where excited about a time in the distant future when we actually start to settle into a routine. Thanks again for all of your love and support. It makes a huge difference knowing that we have all of you on our side.
What?!?!
Why, yes... that is our couch. That is also Bree, holding two babies for the first time.
Beck had a grand homecoming today, after nearly 9 months in the NICU (that's longer than he was in the womb). He's feeding well, he's growing, and he got over the flu that stymied his last exit strategy. We should have a video of the first encounter up tomorrow, sometime.
Whew! Now, let the real adventure begin.
Well, now that January 3 has come and gone, I can let you know that the doctors were actually considering letting Beck go home on January 3. But... as the unplanned always wills in the NICU, there was a delay. Beck had been doing well on the weight gain, but was getting kind of stuffy (like everyone else) early in the week. So, they drew some blood, ran some labs, and did a nasal swab. And the winner is... Influenza A! That's right, after 260-something days, Beck was unlucky enough to get the Flu a mere 2 days from getting the chance to go home. The new plan is to help Beck get rid of the Flu, and then see where he stands on weight gain, etc...
Overall, we can't complain. He really is looking much better, and the loss of the IV fluids has done wonders for his appearance, color, and demeanor. He's been alert, playful, and anxious to get out of that crib (and the hospital, in general).
Elliott is so close to crawling, it hurts. It actually does hurt his face a bit, as he gets up on all fours, and just as he's about to successfully move alternate limbs... spread-eagle, faceplant into the blanket. He's been eating bananas, apples, pears, avocados, sweet potatoes, and mangos. Yesterday, while shopping for kitchen faucets with dad, he spit up pears in the plumbing section of Lowe's. Dad decided that cleaning the floor at a hardware store was counterproductive, and went about fixture shopping. Is that wrong?
Well, the last 2 weeks have gone very well.
The new J-Tube has been able to effectively stop the leaking from that site. This in turn has caused less irritation to Beck, both physically to his skin, and mentally, as we aren't messing with him as much. It has also meant more time to process and absorb the food. His G-J Button system also seems to be working well.
As for feedings.... he's been off of the Lipids for about 10 days now, and we turned off the TPN about 6 days ago. With no fluids through the IV, he's on formula alone. This has always been the hard part for Beck. He has a difficult time gaining weight without the TPN/Lipids. Despite the history, he's been making positive numbers over the last week. Hopefully, he can keep the trend going for a while longer.
Side Note: Did you know that in the Chinese New Year, 2008 will be the Year of the Rat? Why is that good? Because it (the Year of the Rat) is the first year in the 12 year cycle that is the Chinese New Year. A fresh start for everyone involved!
Beck got all new gear on Tuesday morning... a new J-Tube, a new G-J Tube button, and a new Broviac line. How/why did all of this happen?
Well, since our last entry, Beck continued to up the formula and lower the IV fluids. About 2 weeks ago, the doctors decided to see if he could gain weight on formula alone, so they turned off the TPN/Lipids, and gave it a few days. He basically, lost weight over those days. That continued the general trend of the previous few weeks, which was not a specific loss of weight, but a failure to gain weight (which is a loss in the end, as a kiddo can't stay 14.5 lbs forever). All of this called for an overhaul of the master plan.
There are 3 major issues that contributed to the changes:
1. His Broviac line was continuing to maintain a low-grade infection. He was on antibiotics to keep this infection in check, but that goes hand-in-hand with two other problems: a) continuous use of antibiotics is bad for the system and long-term effectiveness of the meds, and b) deciding to discontinue the antibiotics would surely lead to a new blood infection stemming from the line (this had already happened once).
2. His J-Tube was having increased leakage. The more we increased the amount of formula, up went the amount of leakage from the J-Tube site. Basically, the intestinal contents were leaking back out around the J-Tube. [The best example I can create involves putting a straw into a Coke bottle. If you turned the bottle upside-down, the Coke would flow out around the straw. Ideally the straw (or catheter, in real life) has a tight seal around it. His non-ideal nutritional state doesn't really allow his body the freedom to heal things like oversized J-Tube holes... it's busy growing hearts and brains.] When the contents leak, you lose in two ways: a) food that is being processed, leaves the system early, and is only partially absorbed, and b) formula that was just fed in, comes right back out, and never gets a chance to digest. All of this means that he not actually absorbing anywhere near the calories that he should be, from the feedings.
3. Because we were feeding Beck through the J-Tube, only the lower half of the intestines were being utilized. This results in less chance for absorption by his body... again lessening the actual calories absorbed.
With those three problems contributing to each other, everyone involved agreed that a few changes were in order. So, yesterday morning, Beck went down to the operating room for a few hours, to have the following procedures performed:
1. A new Broviac line - the surgeons were able to place one on his left side (the last one was on the right)
2. A new G-J Tube button - the old G-Tube (in the stomach) was removed, and a new "button" was inserted. This is a much smaller access point, and one which he'll be going home with. It allows venting of, and feeding into the stomach. It also consists of a J-Tube that continues on, into the intestines, for feeding access. This will be eternally helpful, as his stomach isn't quite up to regulating food volumes into the intestines, and allows feedings to drop into the upper intestines... using the full gut is better than just half.
3. A new J-Tube - rather than remove the old leaking J-Tube, the surgeons replaced it with a different type. This new J-Tube has a flange within the intestines that should help seal the hole. The reason for choosing to keep it in again revolves around Beck's healing ability. The hole is likely extremely well formed, and wouldn't close readily on its own. Therefore, surgery will be involved to close it up. I think Dr.Cox's exact words were, "That baby will not be having ANY intestinal surgery". Period. End of story. Come back in two years. Bye. Beck's intestines have been through enough, and a silly little tube is easier to deal with than a whole new round of risky surgery.
To make matters worse, Beck got a new blood infection on Wednesday, which resulted in some fever, irritation, and a snag in the new plan. We had to wait a few extra days for the surgery, so Beck's blood could be cleaned up (sticking a clean Broviac into infected blood dirties up the line, and gets you right back where you started from). Beck's inability to keep any long-term IVs in over the weekend also added some difficulty.
So, here we are on Wednesday, and Beck is slowly starting feedings through the new and improved G-J Tube. We'll see how it goes from here, but hopefully, he has been upgraded on all fronts, and put in a better situation to recover.
One month?... there's no excuse for that kind of delay. I just need to get my rear in gear.
Where were we...
Beck finally got rid of the CPAP. They moved him to a nasal cannula a few days after the last post. On Thanksgiving day, the doctors surprised us by delivering a cute face... free of tubes! Since then, the game has been all about feeding. The primary goal is to increase the percentage of his calories that come from formula (flowing into the J-Tube, in his intestines), while decreasing the percentage of nutrition that he receives from TPN/Lipids (IV fluids). 2 months ago, he was 0% formula and 100% TPN/Lipids. Today, he is around 95% formula and 5% TPN/Lipids. It has been a long, slow process to get to this point, but his intestines seem to be handling it well. Ideally, if he can consistently gain weight on formula alone, then this central IV line is unnecessary. If it's not needed, it can come out... for good. This central line (along with general nutrition) is one of the primary hurdles when considering when he can come home. Maintaining a central line at home is an extremely difficult task, that would require in-home nursing and sterile conditions... not the easiest thing to do when you've got another baby in the house, and two cats that like to run around, get in your face, and lick things. So, our current wish is that things just keep on moving along.
Elliott seems ridiculously adult-like. He's eating rice cereal and pears from a spoon, at the table. He even has conversations of babble with us. I'm sure he's trying to say something... what, I don't know.
I'll try to get some new pics up soon... thanks again for all of your help and support. It really means the world to us.
Beck's feeling much better this weekend. He's still on the CPAP, but a week's worth of ventilation help, and some Albuterol treatments have made a huge difference. His lungs are moving air again, his congestion has gone down, he's sleeping well, and he just looks happier. Hopefully, we can lose the CPAP by early next week.
Elliott is babbling himself awake. Trying to get a nap out of him is getting harder as he learns to lay in the crib and talk to the mobile. He's also started to notice Gary and Jeffrey. I believe those cats are about to receive a taste of their own medicine. Elliott is happy with them, until they choose not to stare at him... then the screaming begins. They turn back towards him, and it stops... turn away, it begins. Elliott will be riding them pretty soon.
After more than half a month... we're finally getting a chance to sit down and give an update on everyone. So, here goes...
Elliott is doing wonderfully. Among other things, he has: started eating rice cereal, begun doing some push-ups for us, rolling to his back and nearly on to his tummy, talking to himself in bed, and he's getting by on only one nighttime feeding, with an occasional full night of sleep... nice! He's chubby, and cute, and laughs... he's just fun to be around.
Beck's also fun to be around... his favorite move at the moment is to stare longingly into your eyes, no matter where you move to. He'll stare, and if you're a girl, he'll smile at you. I'm thinking it's because 95% of the people he comes in contact with are female. Either way, it's a big hit.
On a not so fun note, Beck's had a really rough week. Somewhere around two weeks ago, Beck was battling an infection in his Broviac line (central IV line). He was on a ten day course of antibiotics, and everyone felt fairly confident that the infection was under control. So, off of the medicine he went. That gave us a chance to fit in his 6 month immunizations. Because the doctors wanted to protect his little NICU lungs, we also gave him the necessary flu and Synagis (to protect against RSV) shots. Around the same time, his pulmonary team decided to start lung treatments, and Halloween brought lots of visitors (and maybe a few germs) into his room. The end result? A sick little boy. He's had quite a bit of congestion in his lungs, combined with bronchospasms, and hasn't been able to sleep very well. His Broviac infection also decided to come back in his blood. All of this has put a lot of stress on his body, and the doctors had to help him out with his breathing. So, they placed him on CPAP (Continuous Positive Air Pressure) last night. This has improved his situation slightly, but he's still having a pretty hard time. We're hopeful that between the antibiotics, bronchodialaters, and a bit of rest through sedation, he'll start to get over the hump.
Halloween in the NICU involves many things... for Beck, that means dressing up as your primary surgeon. We asked Beck who he wanted to be for Halloween, and he answered with a resounding, "Dr.Cox... in training!". Dr.Cox was kind enough to swing through for a photo op.
More pics after the click through.
Elliott gets festive.
Here are a billion pictures that we have neglected to post... sorry! Just click below.
Today, we can celebrate 2 half-birthdays! Beck and Elliott are 6 months old, today.
Beck has continued with the feeding and pooing. Progress is slow, but still in the right direction. He's also been fighting an infection in his blood off and on for the last week, so they're watching it closely. If they can't clear it up, they might have to pull his central IV line. That would make giving him his TPN and lipids much more difficult, so we're hoping everything smoothes out. He was also able to move back into his big crib, yesterday. He seems much happier with the extra space, and the luxury of hanging out propped up in his Boppy.
Elliott finally slept through an entire night this week. 12 hours of bliss... for everyone involved. He's been enjoying his new bouncy seat, spinning toy contraption. He can sit in it and spin and play with toys. He also made a few house calls. He got out to hang with Great-Grandma, and his old friend Dr.Haider.
We just wanted to say thank you to everyone who helped out, and came out to the blood drive on Friday. It was a great success, and the blood bank was able to surpass their goal for the day. It really means a lot to us that everyone took the time to do something for Beck, and lots of other people in the process. Special thanks to everyone at The Monarch School for kindly hosting the entire drive.
Late last week, Beck started his feedings again. Food was going in as planned without any issues, but... (why is there always a "but"?)
So, I'll remind you that Beck currently has two tubes, which can be used as drainage or input (feeding). He has a G Tube from his stomach, and a J Tube from his mid-intestine. Early last week, both tubes were draining fluid. The stomach was draining more fluid, because the intestines weren't fully capable of working, yet. By Friday, the G Tube drainage was down quite a bit, and the J Tube drainage was up. That's good, as it's a sign that fluids were beginning to flow down the intestines. On Saturday, the picture got a bit more murky. The J Tube stopped draining fluid, he had a bit of emesis (vomiting), and to make it all more confusing, he had a huge diaper full of breastmilk poo. We weren't quite sure what these conflicting items meant, but the doctors decided to give it a few days, as most things reveal themselves. With Saturday's confusion behind us, Sunday decided to create a little more. Beck spiked a pretty high fever, and had a pretty intense seizure. [SIDE NOTE: He's been on Phenobarbital (an anticonvulsant) since his stomach hemorrhage. They were suspicious that some of his movements might be seizure related (common after a serious trauma), and wanted to remove any doubt by treating them until he's a bit more stable. On Friday, they discontinued the Phenobarbital.] His blood work from Sunday showed indications of an infection, so we'll be following that over the next few days. Unfortunately, the abundance of varied symptoms over the weekend makes it hard to pinpoint exactly what's going on. Fevers can cause seizures, seizures can cause fevers, and infections can cause both. Combine all of that with the reintroduction of food, and getting his intestines back on track... it's complex to say the least.
What we can say is that as of Sunday night he was happy, and looking really good. His incisions look better than they have in a long time. This weekend also brought an abundance of smiles from Beck, which set off a chain reaction of smiles among parents and nurses. We think he'd just been building them up for a long time. Pictures to come... I promise.
Elliott performed magic last night. We put him to sleep on his stomach, and when we woke up he was on his back. We had hoped to see this miracle in person, but seeing the results was fun, too. He can also army crawl his way all over the crib.
Beck has shed a few more devices over the last few days. The doctors have completely weaned him off of the Morphine, and they were able to remove the nasal cannula. Bree was able to hold him on Wednesday. That was the first time he's been held in 5-6 weeks... he happily slumbered. Overall, he seems much more comfortable without the wound vac, ventilator, and excessive tubing.
They also made the decision to begin feeding him again, on Wednesday. Just a bit at first... 10ccs every 4 hours. Unfortunately, this decision was not made for intestinal purposes. It may end up helping his intestines move along, but the primary purpose is nutritional. His lower abdominal scar isn't healing as well as the surgeons would like. The culprit is most likely insufficient nutrition from the TPN and lipids. These fluids can give him a lot of the things that he needs, but not everything that he'll require to properly heal a large wound. So, we're trying out some breast milk, and a formula that's high in protein and calories. So far, the food seems to be making its way from the stomach tube down to the intestinal tube without too much trouble. Still no poo to speak of, so we'll just have to watch everything closely.
Beck also has a new CD player, so he can listen to great music all day long... and he can chomp away on his pacifier again, which makes him extremely happy!
Beck went down to visit the surgeons on Friday, and again, today. On Friday, they were able to close up the fascia, which is the tissue of the abdominal wall, beneath the skin. Today, they were able to fully close the skin across the incision. With a fully closed belly, the surgeons were able to remove the wound vac from his abdomen, which means no more trips to the operating room in the immediate future. No scheduled operating room trips allowed the doctors to extubate him at around 11am this morning... no more breathing tube! They did give him a nasal cannula as a precautionary measure, to provide some oxygen until he starts to breathe normally again. Hopefully, over the coming week, we'll be able to slowly ween him off of the Morphine drip. He just needs to heal a bit more.
Feeding, and intestines are still the territory of the future, but for now, these are some steps in the right direction.
So, the "hey, go give some blood" drive, somehow turned into an actual blood drive. My mom's school (The Monarch School), performs several community service projects throughout the year, and have decided to host a blood drive in Beck's honor. It will be at the I-10/Wirt Road campus on October 12. The blood bank will also be set up to accept double red cell donations... it takes a little longer but is like 2 donations in one.
If you're in the Houston area, and need a place to give blood, just come on over between 10am - 2pm. Feel free to pass the word on to anyone else who might be interested. The Monarch School has a great bunch of teachers and kids who would love nothing more than to send the blood bank packing with more blood than they know what to do with. They've also been extremely kind and generous to Beck, Elliott and our entire family (mainly by letting Grammy skip out to watch Elliott in a pinch). So, show them some love, and give up the blood!
BECK'S "FOR REAL" BLOOD DRIVE
WHERE
The Monarch School
1014 Wirt Rd, Houston, Texas
This part of the campus is in a little strip mall, just off of Wirt Rd
View a map, and get directions
WHEN
Friday
October 12
10am - 2pm
Beck had two more surgical procedures, on Sunday and Tuesday. The surgeons were able to close quite a bit more of the fascia, which is the layer of tissue below the skin. Only about 15% of the abdominal incision is still open, and it will still take a few more trips to complete the closure. He seems to be handling this as well as could be expected. He's still on a Morphine drip, so he's a little groggy, but he's been opening his eyes and looking around each day. He's also been pooing some poo, so were hoping that things are still trying to move along down there.
Elliott still likes to eat, poo, and sleep. He's also becoming better at having conversations. As long as you take the initiative to mimic his gurgley sounds, he'll laugh and go back and forth with you for quite a while. After he burps, he likes to smile at you, and say, "Ahhhh". Cute.
So, Beck went down to the operating room for another dressing change, today. The surgeons were again pleased with what they saw. The intestinal swelling has gone gone quite a bit, as has the edema throughout his entire body. They were able to suture up about 2 inches of his main incision, and will continue to work towards full closure over the next few weeks. The doctors have been able to reduce the amount of Morphine that he's on, and he's been able to open his eyes and look around for brief periods over the last 3 days. He's even doing some hand squeezing, which is nice.
We've had a lot of people ask what they can do for us over the last few months. That's a hard question to answer when so many people are sincerely looking for something to do. I wish there were 20 meals in a day, because I'm pretty sure we'd be covered. We were trying to find a way to let people help, without overwhelming them or us, and it all came down to blood. Beck has been in the unfortunate position of needing quite a bit of blood over the last 5 months, and we are forever indebted to the blood bank for being able to supply something so crucial to his wellbeing. Just this week, I saw a blood bank commercial on TV, and realized a completely new appreciation for the entire concept. It became apparent that our friends and family would be able to offer a resource used not only by Beck, but by countless other babies in the NICU, not to mention hospitals in general. On that note, we've decided to answer the question "What can I do?", with "You can donate blood". I am confident that this act will not only bring everyone closer to Beck's recovery, but will save many other lives in the process. You'll be directly replenishing the banks that provided blood for Beck over the last 5 months. That is important to Beck, and important to the entire community in which you live.
We have to thank everyone again for their love and support. It means everything to know that Beck and Elliott have an amazing team holding them up. I've listed some blood bank information below. If you are in the Houston area, and go to the Gulf Coast Regional Blood Center, you can credit "Memorial Hermann TMC" at the time of your donation, and Beck's hospital will be earmarked on the donation.
HOUSTON
Gulf Coast Regional Blood Center
http://www.giveblood.org/where_donate.htm
ELSEWHERE
http://www.givelife.org
http://www.aabb.org/Content/Donate_Blood/Where_to_Donate
Everything with the procedure went fine, yesterday. The surgeons said they were pleased with what they saw. Some of the general swelling in the abdomen has gone down, and they are hoping to begin adding a few stitches to the incisions on Friday or Saturday. At this point, his incision remains open, with the wound vac holding everything in place. Overall, he is in (and will continue to be in) a fairly delicate position over the next few weeks. We're excited that he's doing the best that he can, which is ending each day a bit better than he started it out.
Beck's dressing change got moved from Monday, to sometime on Tuesday. Hopefully, we'll be able to get up there and hang out with him for a bit before the procedure. It should be fairly quick, but he has to be under full anesthesia, and under sterile conditions (thus the trip to the operating room). We'll make sure to let everyone know how it goes.
He had another good night and day, today. He even moved around a little for us. A little leg kicking... and some fist up to the mouth action. He's really cute.
As of Sunday morning, Beck has made several improvements. He is certainly still in a critical state, but has stabilized many things. His blood levels are closer to normal, we've been able to ween the breathing ventilator dramatically, and we're slowly removing some of the morphine. He has begun to pee again, which is great news. The volume is picking up, and he starting to flush his system of everything he's been given over the last fews days. This lets us give him some more antibiotics (when they build up in the body you stop giving them for a bit, until the levels subside), and allows the edema to slowly decrease throughout his body. He's still pretty puffy, but that's to be expected at this stage.
He'll go down to the operating room Monday morning to change the dressings on his wound vacuum. This should occur every 48 hours or so, until they can fully close the incision (roughly a week or two). The frequent upcoming O.R. trips necessitate leaving him intubated for the time being.
The doctors and surgeons are pleased with the way everything is going. They feel that, considering his situation, he's handling everything as well as might be expected. While we know that the next 2 weeks will hold a lot of difficult decisions and procedures, we're hoping for a few more good days of rest and positive movement before we have to make any dramatic changes.
We'll keep you updated...
The last few days have been a bit of a blur, but here's the general idea of what is going on...
On Tuesday... Beck's tummy was getting pretty distended, and everyone decided that it was time to figure out a bit more about what was actually happening in the intestines. They were pretty dilated, but he was still pooping a little, so something was getting through, just not enough.
On Wednesday... they were able to do a radiologic contrast study (gastrogram) from the bottom up. This would ideally give them a better picture of the intestines, and can also be therapeutic in removing some blockages. What we observed was kind of a mixed bag. The radiologist thought there might be a stricture (a narrowing in the intestines sometimes caused by scar tissue, or a lack of blood flow to a section of intestine), but the surgeon wasn't convinced that it was evident. Either way, they decided that a partial blockage was still partially patent, and could potentially resolve on its own. Therefore, there wasn't a significant reason to operate, just to stay on top of the situation.
On Thursday... we came up to the hospital expecting to deal with intestinal blockage, but quickly learned that the suction tube in his stomach had begun to pull a bit of blood overnight. By mid-morning this had developed into vomiting blood, and a large overall blood loss through the stomach. Other than the knowledge that any ICU patient develops ulcers, this was a bit unexpected. The excessive blood loss resulted in metabolic acidosis, which is essentially an increase in the acidity of the blood. If the blood's pH is out of balance, it isn't able to perform its normal functions in the body, such as oxygen exchange, clotting, etc. At this point, the main goals were to control his bleeding, and bring his blood levels back into check. Several steps were taken to achieve this. Beck was reintubated to help his breathing, sodium bicarbonate helped to counteract the acidity, they continued to suction the blood from his stomach, took a few x-rays to try and diagnose the source of the bleeding, and began give him continuous transfusions of blood, platelets, blood products to replenish his supply.
On Friday... his blood levels had begun to come into line, but his blood volume was being continually replaced, and there was no sign that the bleeding was going to stop. The surgeons and neonatology teams made a decision to perform an endoscopy, into Beck's stomach, through his throat, to see if they could visually identify to source of the bleeding. Upon inflating his stomach with air (which is necessary to get an acceptable view of the stomach), the pressure in his body cavity was so great, that he was unable to be properly ventilated with the machine. The surgeons were forced to open his abdomen to release the pressure, and restart the ventilation. They were able to open his stomach, and remove a large blood clot that had formed. It was approx. 500cc/mL which is half a liter. I'm not sure if you can visualize how small a 9 pound infant is, but is seems impossible to imagine that you could have anything 500cc/mL large inside of there. The working idea is that he had developed diffuse gastritis in his stomach due to general stress. This gastritis is essentially raw tissue that tends to ooze and bleed (like a strawberry on your leg). If a clot forms, it can further irritate the stomach lining, creating a negative cycle. More clot, more irritation, more bleeding, more clot... In the end, the surgeons inserted several drainage tubes from his stomach and intestines, lined his stomach with gauze to limit the irritation, and were able to give him Factor 7a (which is a strong blood clotting agent). Due to the pressure and swelling in his abdomen (a lot of which is remaining from his previous surgery a few weeks ago), they were unable to close his incision. He currently has a vacuum seal that covers the abdominal incision, and will protect it. As the swelling decreases, the surgeons will be able to slowly close the incision. This process could take from several days to a few weeks.
Overnight... Beck has become more stable. Rather than chasing his blood levels, they are working to maintain the currently acceptable levels. It also appears that most of the bleeding has been controlled. The remaining hurdle in the immediate future is to get him peeing again. You want him to retain fluids, but not too much. You might remember the issue we had with bloating after the 2nd/3rd surgeries. This is similar, but his fluid control is much improved currently, so we think he should bring the urine into check by himself.
What does it all mean? Dr.Cox (the surgeon) described all of this as a huge life-threatening leap backwards. It will realistically take Beck many, many weeks to get back to where he was just 3 days ago. The list of what-ifs extends into the thousands. At this point, the doctors are doing everything within their abilities to keep him stable, and take baby steps forward. He will have several operating room procedures ahead of him, to deal with the stomach bleeding , abdominal incision, and general stability. Beyond that, we'll go back addressing the intestinal functionality.
Bree and I have been reading all of Beck's favorites books, and singing his favorites songs. His hand is held constantly, and we even give him foot massages. A lot of this is beyond our control, but letting him know we're around is fully within our control. We also make sure he knows how many people care about, and are thinking about him. It means a lot to have all of you supporting us and him. So, try to keep Beck in all of your thoughts and prayers... we'll make sure to pass them along.
So, over the last few days Beck has begun to poo... really great news. But... even with a bit of poo and gas coming out, his tummy is still very distended following the operation. The general consensus is this: His intestinal motility is still very slow at this point. This results in several secondary issues, one of which is distention.
Imagine, if you will, a slowly moving conveyor belt. It's just creeping along, but things keep getting placed on the conveyor belt at a high speed. This is not unlike the secretions and gas that are building up inside his intestines. At some point you just have a big log jam of things waiting to move on down the line. By looking at x-rays, and poo in the diaper, it seems likely that he has an open pathway through the intestines, because stuff is making it's way through. The whole process is just moving slowly. It should pick up in time. Unfortunately, in the meantime you have to manage the secondary issues caused by the intestinal delay. One is distention, which results in general discomfort (think about the last time you had lots of gas and multiply by some number). The distention is also applying tension to the incision and sutures on his belly, which pulls the incision apart and results in a delayed healing process. The increased size of his intestines means less room for all of the other organs. The first to be shoved aside is the lungs, which causes a reduced lung capacity, and shallower breathes. He has generally overcome the breathing issue, as evidenced by the removal of the breathing tube. The reduced space has also caused his hernia to flare out. All of this is being counteracted by the use of a replogle tube, that suctions fluid and gas from his tummy.
What does all of this mean? Well, in general, he's not in any real pain, and his intestines seem to be working properly. He's just kinda irritated from the gas, distention, tightness, and the tube down his throat... not to mention the fact that he hasn't had food in his stomach for a week. Once his intestines start to pick up speed, most of these other issues should remove themselves with the distention. Until that happens, try to think relaxing thoughts for Beck... I think he deserves a spa day after all of this.
So... 8 days after surgery, Beck appears to be doing well.
He is certainly resting better, as they were able to extubate the breathing tube yesterday. The surgical team is happy with the way the incision is looking (much better than the other surgeries), and the neonatology team is confident that his intestines are slowly getting back to normal. He needs the intestines to get their full motility back, so that the gas in his belly can slowly work its way down. We'll think about food after all of that happens.
Elliott is also doing well. He is tantilizingly close to a full laugh, and continues to eat everything placed before him. We've decided to scrap the college fund, and setup a teenage-boy-eating-his-way-through-house-and-home fund.
I've taken a lot of pictures, we just haven't had time to put them up yet... soon !
Well... we're glad that day is over.
Beck spent his entire day trying to get the pain medication to a proper adjustment. It seems that the doctors finally got it there overnight. During the day, he would get upset whenever the nurses had to assess him or change his diapers, etc. This is mainly the breathing tube's fault. It's just irritating to have that thing in there. Whenever he wakes up, he notices it. As of this morning, he is resting better, the incision looks to be doing well, and there is little or no swelling and edema. As a special bonus, he is peeing bucketloads of pee (that's a great sign on the hydration front).
Elliott was the proud receipient of his 4 month vaccination shots. This resulted in a cute little fever that lasted most of the day. Lots of crying and intolerence was experienced. The good news for everyone is that he's back to smiling and playing this morning.
Thursday evening, and Beck is back in his crib...
Beck was a trooper through the entirety of his 3 hour surgery this morning. He is currently resting in bed, albeit with a breathing tube. He will likely be intubated for another day or two... until the pain subsides a bit, and they can lower the pain medication. With the pain medication lowered, he'll be able to focus on things likes breathing again.
Overall, the surgery was a success. The surgeons encountered nothing unexpected, and were able to complete everything they set out to do. So, what exactly happened, today? The plan was the reconnect Beck's intestines. The main challenge going into this surgery was going to be adhesions.
Back to Beck... It turns out that he did have quite a few adhesions. The surgeons removed the adhesions they needed to, in order to get to, and rejoin, the intestines. In the process of removing adhesions, a small section of intestine was damaged and resected, resulting in a second suture point on the length of his intestines. Make sense? Point One is where the two ends of the ostomy were put back together, and Point Two is where a section of intestine was removed, and the two ends were put right back together. So, with a fully intact system, running from mouth to tummy to intestine to colon to you know where, they closed him back up with big 'ol staples, so he wouldn't come undone this time (this was an issue after surgery number two).
What's next? We give the intestines a few days to heal, and then we wait. We wait for the intestines to start moving in the right direction, which is down. How will we know things are moving? In the end, we'll get some gas (no pun intended, sort of). Once we get gas, we'll start to give him a little milk. Hopefully, a bit later we'll get Beck's first diaper poo. This should be distinguished from ostomy poo, which was previously prayed for. Diaper poo is special, as it has travelled the full length. Ostomy poo takes a quick exit before the colon... admirable, but not as exciting as diaper poo.
So, that's the news. A long day, but a good day. This surgery had to take place, and all parties agreed that this was the time to make it happen. Beck just needs a little rest over the next few days. We're still conscious of potential infection, swelling, and other post-surgical complications, but we're also excited that he has taken a step forward. We are eternally grateful to, and have true confidence in, his surgical and neonatal teams. So far, they've managed to navigate us through a dense briar patch, and we have no doubts that they can help us get to the other side. Hopefully, we'll find a few roses over there.
PS - Elliott ate and then pooed and then slept... he says hello.
Where did we leave off? It was oh so long ago... all four of us have been busy, lately.
The most pressing developments surround Beck and his belly. He'll be having what could potentially be his final surgery on Thursday morning. We just walked through everything with the surgeons, and Beck is ready to go. Basically, they take the two open ends of the intestines (which are currently brought out to the abdomen), bring them back inside, and reconnect them. He'll hold off on feeding for a few days, and hopefully get back to breast milk by early next week. By "get back" I mean, start off slowly and build back up.
We're all a little anxious, as surgery is always surgery. The most difficult aspect is the irony. He doing fairly well right now... he's happy, smiles,and is doing well with feeding. This is seemingly the last time you would want to bother him. But it stands to reason that this is also the best time to perform a surgery... he's healthy, gaining weight, and not having any side issues. Irony. Anxiety.
Elliott continues to eat, poop, and sleep... all great things. He also let out his first chuckle today. It was a smile that just kept on going. Elliott has also properly vomited on both of his parents. He even projectile vomited while strapped to Bree (facing out), all over the kitchen floor. Fortunately, no cats were involved. He enjoys swinging on the porch, and long walks on the beach... actually, just around the neighborhood for now.
Bree and Stephen don't sleep much, except when people come over for the late night feeds. Thank you, people.
We'll try to put up some pics, soon... and we'll also try to let everyone know how the surgery goes. Thanks again for all of your thoughts, prayers, and help along the way. I believe that Beck and Elliott have the largest network of Aunts and Uncles ever.
Comcast isn't exactly on the "Friend List" right now... the internet had been down for close to 3 weeks, intermittently, until yesterday. Therefore, limited updates. Look below to find last week's entries... just posted today.
Beck has had a whirlwind kind of week.
It started well, with an increase in his feeding volume and a conversion from continuous nasal tube feedings (small amounts of food around the clock) to bolus nasal tube feedings (where they give him food for say 1 hour, and then turn off the pump for 3 hours... repeat; much more like real-life eating, bottle/breastfeeding, etc). He was tolerating all of this very well. He wasn't gaining weight on this system, though. The call was made to add some calories to the breastmilk. He handled this well, too... but still, not so much weight gain. Next some protein was added. This is where the cause and effect gets a little gray, but the result was another episode of dumping over the weekend. Whether it was the return of his bacterial overgrowth or a reaction to the protein is unknown. In reality, it's probably a bit of both. So, Beck's feeds where stopped completely. This stops the input of food and fluids, but when your body is dumping it doesn't stop the outflow of fluids. You can imagine that that's not a great scenario. Over Saturday and Sunday, he ended up losing close to 400 grams (nearly a pound). Fortunately, most of this is fluid, and can be returned quickly.
So, since then, the goal has been to rehydrate Beck. He's been on a combination of IV drip and TPN/Lipids (sort of like Gatorade and Fat). Sunday was a pretty scary day, but he looks much, much better now (see pictures of Beck in last entry). Last night, the nurses were able to put in a more permanent IV, so they won't have to keep re-sticking him every few hours.
On Thursday, we'll be having a conference with Beck's neonatalogy team, nurse practitioners, surgical team, GI team, and discharge team. Hopefully, with all of those heads in one room, we can reformulate our plan. Beyond that, Beck remains cute and we kiss him a lot.
Naked Beck! (under a blanket)
Click through to see some more pictures of the last week.
First bath (at home)
Yes, it is true... Elliott Ward Sandlin has arrived at his permanent location. He came home late Monday night, to the joy of everyone in and out of the hospital. He got his first car ride. He slept in his crib. He took his first bath the next day. He sat on our chests in his new rocking chair. Both Grammy, G and Aunt Sally have been around to help out with the duties, and are much appreciated.
Beck is hanging out in his isolation "corner suite" in the Rabbit pod. He's still on breastmilk alone, and has been moderately gaining weight. The doctors are not completely satisfied with his weight gain, so there could be some feeding/food changes in his future. a few options include fortifying the breast milk with extra protein, and switching up the timing of the delivery through the nose tube. We'll see what works. It certainly hard to have only one of them home, but it's a step in the right direction.
They're together... they're not together... they're together... they're not together...
Such is the story with Beck and Elliott. This one, unfortunately, will last a bit longer. A throat/lung culture on Beck turned up MRSA positive. Unlike the nasal passages, where the MRSA was found before, the doctors can't use a topical ointment to rid lungs of MRSA. Because he can't be cleared from internalized MRSA, he's back into isolation, most likely for the remainder of his stay in the hospital. I should remind everyone that Beck is merely colonized with MRSA, and he has absolutely NO infection from MRSA. It's just on/in him.
So, they are split up again, but they are both doing well. Beck is hanging out, and growing. The doctors were able to pull out his IV yesterday, so he's currently receiving just a continuous feed of breastmilk. Elliott is trying to ramp up his feedings. He's still getting all of his breastmilk from bottles, and is slowly starting to gain some weight while doing it. It's easy to forget that Elliott taking a bottle, is like one of us getting in a full-body workout... it burns quite a few calories.
Do I know you?
Here are a few more photos of Beck and Elliott in their new crib (click below).
Beck is just growing and waiting for the surgeons to decide when they want to reanastomose (reconnect the intestines). It could be days, and it could be weeks. They just want to pick the appropriate time, when he's best able to handle a surgery. As for Elliott, he's just drinking lots of milk from bottles. Once he can prove to the doctors that he can consistently gain weight while bottling, his stay at the hospital will be complete. How soon will that happen? Unfortunately, we don't know. The ambiguous answer is, it'll happen when it happens.
They're back together, again! (Elliott left, Beck right)
Both boys have tested MRSA negative for a while now, so they were able to move out of the isolation section, and into Level 2. Even better, is that they were able to move into the same crib. They should remain this way until one of two things happens: 1 Elliott goes home or 2 Beck has his final surgery, in which case, he'll move back over to the Level 3 side for a while to recover.
Neither one got much enjoyment from their first few hours together. Elliott was fussy, so he screamed into Beck's ear until we picked him up (notice the red face from screaming). Beck just turned away from his brother's nonsense, and sucked on his pacifier.
Witness Elliott, as he sleeps his way to success, in the car seat challenge. He was able to sleep in the seat for the full hour, without any apnea or bradycardia episodes.
Beck has throttled through the 3000 gram mark (just over 6.5 lbs)
Elliott is now beyond 7.5 lbs, and is quickly closing in on 8 lbs.
Here are some pictures of Elliott during his 24 hour bottling marathon... I think his hair is red.
Click below for more...
What have you been doing for the last 24 hours? We've been up a the hospital feeding Elliott.
The doctors wanted to do a test run, to see how Elliott would do on bottles alone, for 24 hours. So, we pulled out his feeding tube, and waited for him to cry...
We are now at the 23rd hour, and he's doing so-so. He normally takes 600 ccs (20 oz) of milk every 24 hours, mostly through a tube. During our test, we'd like him to take the same (so he'll gain weight), but he needed to take in at least 340 ccs over 24 hours, in order to stay hydrated. Anything below that and the tube has to go back in. He took in a total of 420 ccs. What does it all mean? It means that he moved forward, but didn't do stellar. He'll most likely use this as a foundation to grow on, keeping the feeding the feeding tube out, and slowly taking more and more food by bottle. The only set back will be if he fails to continue to gain weight. If that happens, they'll have to put the feeding tube back in.
Alright... We're going to bed.
So, we haven't written anything in a while. because the boys have been keeping us busy.
Elliott, after receiving his reflux medications, started to feed a little it, again. Then the medicine seemed to stop working as well, and the doctors switched the meds. That made it worse. So, they switched back, and made a little tweak. Better, but not great. He was still twisting and turning and spitting up. For some context, this is not normal spit-up. This is rather painful acid spit-up. Basically, severe acid indigestion in a little baby throat. Not good. So... 3 days ago, on a stab in the dark, we decided to alter the diet. On the advice of the occupational therapist and the doctors, we took all of the dairy out of Bree's diet. We also dropped the fortification of Elliott's milk (the protein fortifier is derived from cow's milk). What happened? For now, a different baby has emerged. He is finishing bottles, taking milk from mom, and the pain and spit-up has ceased. He seems much happier... so that's nice. We're not really sure what fixed the issue, but losing the cow products seemed to have helped. This most likely would not be a case of lactose intolerance, as that seems to be extremely rare, in it's true form. More likely than not, he was just having issues with some of the proteins found in cow's milk (or dairy in general). If this turns out to be the case, chances are he would outgrow the issue once his GI system matures.
Beck continues his rollercoaster ride through the NICU. His previous episode of dumping slowly resolved itself, and after a brief battle with a small blood infection, the feeding volumes were climbing again. Then, 3 days ago, he decided that dumping was fun, and that there should be more of it. The doctors and GI team got together, and after a few days have decided that the issue is bacterial overgrowth. Essentially, this time it's a bacterial infection isolated in the gut. Everyone has lots of bacteria floating through their intestines (and everywhere else). Each of the bacteria serve a purpose. They also produce toxins, some of which are more or less irritating to our bodies. Over the frequent courses of antibiotics that Beck has been exposed to, the "good" bacteria has been reduced in number. One important job of these "good" bacteria is to keep the "bad" bacteria in check. Take away the "good" bacteria for long enough, and the "bad" ones start to thrive. Increased "bad" bacteria elevates the irritating toxins, and suddenly your intestines are irritated... diarrhea. It looks a lot like dumping, and is sort of the same in some ways. SO, when in doubt, kill more bacteria... he's on antibiotics for the next 14 days. This should get things back in line, and if it doesn't they can give him some probiotics to restore the natural bacterial flora in his gut. Either way, he doesn't feel sick, and the IV fluids (plus a little breast milk) are keeping him growing. Overall, he's hanging in there pretty well. His growth curve is what I would technically describe as "way below normal". Ideally, we can keep him on pace with the IV fluids, and then get him back on course to gain some ground once he's back up to full breast milk feeds.
You may also remember that Elliott has been testing MRSA positive, and that's why he's in isolation. His brother has been bouncing around the NICU all this while. Beck has been in a nearby isolation room, when it's available (as a courtesy to us, so we don't have to walk the length of the hospital to go back and forth), but he has to go elsewhere when true isolation babies need the rooms. So, just yesterday, Beck also tested MRSA positive. Good news, right? Beck and Elliott get to share their MRSA love with each other in a shared crib! That would be awesome, except Elliott tested MRSA negative, yesterday. We've been giving Elliott an antibacterial nasal gel (like Neosporin) to decolonize the MRSA bacteria... apparently it's working. So, for now they remain apart. Beck is also getting the nasal gel, but it'll be another 10 days before the treatment and subsequent tests are done. At the rate Elliott is currently sucking down milk, he could be home by then. Now, trust us... we're not complaining about taking Elliott home in the future, but come on... a little luck, please.
Beck sleeping in his bouncy chair.
It was pointed out that I probably shouldn't be putting up pictures of garden frogs, when I could spend that time putting up pictures of children. Point taken. Click below, for more pics...
Beck's is doing better on the stool front. A lot of his "dumping/watery stool" issue is likely caused by the nature of his surgery and ostomy. Because the ostomy bypasses the colon, and the colon is the primary water absorption tool in the gut, it's natural to have some unabsorbed liquid flow through. The primary goal is to control the situation, until he can have the intestines reconnected. "Controlling" the situation involves slowing down the motility of his small intestine, so it has more time to absorb what it can. If his gut is able to absorb the proper amount of nutrients, then he should continue to have proper weight gain. Unfortunately, over the last week, he has lost a bit of weight. This could just be a slump, so we'll be watching it over the next few days. We'd love for him to maintain his weight, as that would mean staying away from ay further IVs. Currently, he is only connected to the world through a small feeding tube... just like Elliott. He has also started breastfeeding... just like Elliott. So, that's good.
Speaking of Elliott... he is now bigger than his brother Beck. This shouldn't really surprise anyone, as he was Baby A (born one minute earlier). He's been fighting some reflux issues over the last week. What's reflux? It's basically the same as acid indigestion, and it's fairly common in preemies. Most simply grow out of this phase with age. Basically, the sphincter (read muscle) between the esophagus and the stomach is not always strong enough to close on it's own. If it can't close, then stomach juices and food can come back up the wrong way. Add a feeding tube into the mix (it goes right through the sphincter and kindly holds the door open) and you've got a recipe for painful spit-up. They've put Elliott on some reflux medicine, and he seems much happier now. He's even started feeding from bottles and mom again, after a respite over the weekend.
So, today we try to feed again... and again... babies eat a lot.
Beck's is doing better on the stool front. A lot of his "dumping/watery stool" issue is likely caused by the nature of his surgery and ostomy. Because the ostomy bypasses the colon, and the colon is the primary water absorption tool in the gut, it's natural to have some unabsorbed liquid flow through. The primary goal is to control the situation, until he can have the intestines reconnected. "Controlling" the situation involves slowing down the motility of his small intestine, so it has more time to absorb what it can. If his gut is able to absorb the proper amount of nutrients, then he should continue to have proper weight gain. Unfortunately, over the last week, he has lost a bit of weight. This could just be a slump, so we'll be watching it over the next few days. We'd love for him to maintain his weight, as that would mean staying away from ay further IVs. Currently, he is only connected to the world through a small feeding tube... just like Elliott. He has also started breastfeeding... just like Elliott. So, that's good.
Speaking of Elliott... he is now bigger than his brother Beck. This shouldn't really surprise anyone, as he was Baby A (born one minute earlier). He's been fighting some reflux issues over the last week. What's reflux? It's basically the same as acid indigestion, and it's fairly common in preemies. Most simply grow out of this phase with age. Basically, the sphincter (read muscle) between the esophagus and the stomach is not always strong enough to close on it's own. If it can't close, then stomach juices and food can come back up the wrong way. Add a feeding tube into the mix (it goes right through the sphincter and kindly holds the door open) and you've got a recipe for painful spit-up. They've put Elliott on some reflux medicine, and he seems much happier now. He's even started feeding from bottles and mom again, after a respite over the weekend.
So, today we try to feed again... and again... babies eat a lot.
So, Beck's little encounter with "dumping" turns out to have been a mild one. Another positive... it seems to have been caused by some digestion issues, when they started to fortify the breast milk with formula. Remove the fortification... bye, bye to the "dumping".
Both boys made great strides in their feeding habits over the last two days. Beck has taken one complete bottle of milk, each of the last two days. Not bad, as these were his first attempts. Beginning 3 days ago, Elliott decided that he wanted none of the bottles. He also promptly decided to start breastfeeding properly. Yesterday, he slowed on the breastfeeding, and got back on the bottle. It doesn't really matter what he's doing... the encouraging part is that he has enough energy to do all of that sucking throughout the day.
Okay... you can stop asking for them. Here they are. Thousands of pictures (or maybe 7). Click through to see...
Man... where did I last leave the story? I believe that Beck had just started eating breast milk, and Elliott had just moved into a luxurious, open crib.
Since then... Beck decided to follow suit into the open crib. Concurrently, Elliott decided to test negative for MRSA, twice in a row. That allowed him to move out of isolation. So, we got to move the boys into the same crib. That was pretty amazing, and allowed for some good pics (see next post). The joy lasted for all of 12 hours, at which time, Elliott tested positive for MRSA again. Back to isolation he went. (Remember, it's not necessarily bad to have MRSA on you, they just don't want to spread it around like candy).
Beck continued to suck down the breast milk, increasing his feeds to nearly the same level as Elliott. Around June 4, another baby needing isolation entered the NICU. Because Beck wasn't technically in need of isolation (he was only in the isolation section to be close to his brother), they had to move him down the hall to make room. Commence the 100 yard walk between babies. Things proceeded with the feedings.
Around June 6, Beck started to have some difficulty with Apnea (pauses in breathing) and Bradys (dropping of the heart rate). This usually is a sign of stress, most often infection. So they ran some tests, and started some antibiotics. Turns out, he was pretty sick, and just didn't feel good. From Thursday through Saturday, they put him back on the breathing ventilator to help him save some strength for bacteria fighting. By Sunday, he was looking good on the infection front. Unfortunately, he found a new issue called "dumping". This is a fairly common occurrence in kids (and adults) who have stomach and intestinal surgery. Brief explanation: One of the stomach's jobs is to be a reservoir. It regulates how much, and how quickly, food enters the small intestine. If it's not working properly (either mechanically or chemically) after surgery, it can unload things too quickly into the small intestine. The small intestine can't handle the load, and sends the contents straight through the system. Basically, you feed Beck 38cc of milk, and 36cc of fluid comes out the other end a few hours later. The doctors backed off the volume of his feeds, and slowed down the rate at which he gets them. Overnight, that seemed to work well, and his GI tract seems to be functioning a bit better this morning (38cc in / 4cc out). We'll talk to the doctors today about what all of this means.
Beck also traded a surgical procedure over the weekend. By Friday, his PDA and VSD had both successfully closed on their own. That's wonderful news, as it means that he has a perfectly perfect heart. Doing as it should, putting blood in all the right places. But... he developed a small hernia. This is very common in premature babies. It's usually fixed right before discharge, or in a quick procedure a few weeks after discharge. When considering that the hernia surgery is much less involved than the PDA surgery, we think that he made a good trade.
As for Elliott, he's just feeding and growing. He's still toying with the idea of eating from a bottle, and his mom. He goes back and forth between the bottle, breast, and tube, depending on his mood. Tommorrow, they are at 38 weeks gestational, so he's almost to the point where we'll start expecting him to work for his food. Until then, he's getting a free pass. Yesterday, he got to sit in the vibrating bouncer for the first time... he slept through the whole thing. He probably won't even remember it.
I think that's brings us to this morning... which brought good news with it. Beck was able to move back down to the isolation pod. Commence the 100 foot walk between babies. A spot opened up, so he gets to be closer to his brother, without the burden of hosting any isolation-worthy bacteria.
In general, we think that both boys are on the right track. Bumps in the road? Yes, as always, but they'll be home before we know it. We really would like to sincerely thank everyone for all that you've done for us. Whether it's gifts, food, conversation, errands, prayers, or thoughts and well-wishes. Please know that it is not overlooked, and is fully appreciated. I would even go so far as to say that it is an essential part of what keeps us chugging along. We're looking forward to the days of introducing you all to Beck and Elliott.
Here's your first chance to catch Beck without tape... this was also in between changing the feeding tube.
Beck has made a few more baby steps since I last wrote. He was able to try his first breast milk a few days ago, and after several feedings it successfully came out the other end... that's great news. The breast milk should help his entire system heal much faster. Once they increase the feeds to an appropriate level, they'll also be able to stop the IV fluids. Beck's been able to maintain his own temperature, so he'll soon be moving into an open crib... just like his brother (see previous post)!
Elliott's waving to you... Actually, he's waving bye-bye to his isolette, and welcoming his new open crib (see pics after break).
Please note his super cute Peas & Carrots outfit (Stephen's training him early). Elliott's also now up to 5 bottle feedings a day (out of 8 total feedings per day).
More pics, after the break...
Were you praying for Beck's intestines? Well it looks like it might be starting to work.
Yesterday evening at around 5:30 pm, Beck pooed his first poo. Stephen and one of our nurses nearly started crying... Bree did. Pretty amazing. Now, this certainly doesn't solve everything, but it's a very important step in the process. It means that his stoma is functioning properly. [Def. A stoma is a surgically created opening, which connects a portion of the body cavity to the outside environment. In this case, the small intestine is connected to an opening in the abdomen. This will be temporary for approx. 4-6 weeks.] The subsequent steps in his intestinal recovery process will most likely be spread out over the next few months: 1 the peristaltic motion in his intestines needs return to full function, 2 he'll begin feedings, 3 we'll need to confirm that his intestines are fully absorbing the nutrition, 4 eventually the surgeons will reconnect the small intestine to the colon, 5 he'll begin to heal the surgical incisions. Somewhere near the end of that list, he'll start to learn about breast and bottle feeding. Long road... good plan.
Because the NICU exists on the principle of two steps forward, one step back... Beck also seems to have picked up another urinary tract infection. He's already on the antibiotics, so we're hoping he'll manage this one as well as he did the one 2 weeks ago.
All in all, we're satisfied with the direction Beck is heading. Each day is still filled with a few unknowns, and a bit of anxiety, but we feel confident that all parents feel these things, no matter what the circumstances. In many ways, everything is normal... especially the part about loving them.
We put that picture of Elliott up, but failed to put it in context. This was taken while they replaced his feeding tube. For now, he still has a feeding tube (which isn't a bad thing). He needs it until he can perfect feeding from mom and the bottle. He's made noted improvements over the last few days, though. He's been successfully finishing about 2.5 of his daily feedings from a bottle. For more context, there are 8 feedings per day, spread out every 3 hours. The requirements for NICU discharge include maintaining your own temperature (almost there), and completing 8 consecutive feedings from a bottle, without any Bradys or Aphnea spells... certainly a few more weeks are in store for Elliott, but he's on the right road.
Were you wondering what Elliott looked like without tape all over his face? Well, there you go.
Beck has been slowly improving this week. We are still cautiously optimistic that things are going well. We should know more about how his last operation went, within the next few days.
Sorry, for the long period of silence. It's been an up and down weekend/week. Lots of medical lingo in the next fews paragraphs...
Beck had his second surgery on Thursday, as planned. They found more meconium blockage in his lower small intestine (the ileum). Because this second blockage was a bit more severe than the first (on Day 2 of his life), they removed about 7-9cm of the ileum. What happens is this: 1 the blockage distends the intestine, 2 the blood vessels in the distended area can't receive blood due to the constriction, 3 the affected area of bowel necrotizes, or dies off. Once this tissue has died, it has to be removed from the body to prevent infections. They also created an ileostomy, where the surgeons bring the open end of the intestine out through the abdomen. This should allow Beck to eat sooner, and is temporary for the next few months.
The surgery went well, although Beck had a common, but severe follow-up reaction. He became extremely vasodilated. Essentially, the blood vessels become dilated, the blood pressure drops, and fluids start to leak into the body's tissue. The result is a lot of bloating and puffiness. A lack of urine is another sign that fluids are not being managed properly. This continued through Saturday morning, and concerned the surgeons enough, that they decided to perform an emergency surgery to find the source of the distress. This resulted in the removal of about 5 cm more of the intestine (about 1cm near the stoma site had necrotized). The surgeons have noted that he would have to lose closer to 100cm, before permanent bowel function/absorption issues would become an issue.
On Sunday morning, Beck decided to give his mother the best Mother's Day present ever... pee. Lots of pee. 2 1/2 cups of pee on Sunday alone (compare that to 1 Tbsp from Thursday through Sunday). He is also maintaining his blood pressure without any medication, getting his electrolytes back in order, and back to breathing room air, albeit through a ventilator. His lungs are actually in good shape, but the fluid build up has made breathing difficult. He is certainly not out of the woods, and the doctors still aren't sure why he is so sick, but things seem to be moving in a better direction, and he looks like the Beck that we've known all along.
At this point, we're happy for every moment that we have with him. Even the smallest of celebrations are welcome.
Beck gets some kangaroo lovin' from mom.
Beck was wide-eyed and cute yesterday, so we got to play with him and his feet. Unfortunately, his tummy distention has returned, which means that he needs to have a second abdominal surgery. It will probably happen this afternoon, but could get pushed back a day. It's essentially the same surgery as before, but with a little more forewarning. They've performed two barium studies over the last week, and have confirmed some blockage in the small intestines. The source/cause of the blockage isn't known and the surgery could require anything from simply removing the blockage, to a few more involved procedures on his GI tract. Overall, the doctors feel optimistic about being able to fix Beck and get him on his way to recovery. Elliott is just excited about having someone to roll around on, once they start sharing a crib.
Thanks again for the thoughts and prayers. We'll try to keep you up to date.
Elliott spends some time with his kin.
Elliott and Beck are both wearing little preemie outfits, now. They're also a step closer to sleeping in an open-air crib... nice. On the scale, Elliott is just over 3 lbs, and Beck is closing in on 4 lbs. The doctors are continuing to watch Beck's PDA and intestines. I'll end on a good note, by mentioning that the latest x-ray shows that Beck's stomach has healed extremely well. Go stomach!
Elliott starts to look at the hand that feeds him.
Elliott has started to get some of his food directly from mom, and from mom-via-bottle. He was even kind enough to offer some of it back to Stephen. Beck continues to chug away at healing his belly and closing his PDA (Patent Ductus Arteriosus). PDAs are relatively common, and are very fixable. Basically, there is a vessel in the heart (the ductus arteriosus) which is needed in the womb, but closes after birth. If it stays open after birth, it is called "patent". Hopefully, Beck's will close on its own. If not, there is a medication that often works, and a procedure to fix it as well.
We are holding up well, if just a little wearily. We got in a good nap today, which always helps. Holding Beck and Elliott usually gives us a boost, too. We've slowly gotten into a a nice schedule of accomplishing a few things in the morning, heading to the hospital for the bulk of the day, and then eating dinner at home. And so it goes...
Elliott getting a little rest on the scale. Elliott and Beck are both nearing their birth weight. Just a bit more to go!
It was a busy day for Elliott who managed to lose his umbilical cord, start controlling his own temperature (instead of having the isolette do it for him), and wear his first shirt all in one day. He is also becoming a pro at using those diapers.
Elliott and G got some alone time, today.
In the news... both of the little guys are doing well in their new suite. They seem very happy and relaxed. The doctor is very pleased with how well they're doing, and Beck might get to lose another tube pretty soon!
Sorry for the delay in posting. You know those two good days forward we just had? Well, those are almost almost followed by a hard day. At the very least it was a long day. Beck was all agitated from having a warm bed, so he was overly excited until we got that corrected. Elliott had his first non-perfect day, as his bacterial swab came up with Methicillin-resistant Staphylococcus aureus (MRSA). What the %#*!? I promise it's not as scary as it sounds. You would commonly know this as one of those hospital-based Staph bacterium. He's not infected or sick in any way. It just means that this particular bacteria is present on his body. I guarantee that after 3 weeks of getting snacks in the hospital cafeteria, it's sure as heck all over my body. Have you ever spent time in a hospital? Well, it's probably on your body, too. None of this makes too much of a difference, unless you get some sort of infection. Even then, the antibiotics that would be administered to any preemie would already be able to knock out MRSA. The hospital just likes to know when the bacterium is present. So, fear not! It just means that Beck and Elliott have a new and improved, private suite in the Duck pod of the NICU (they were in the Sheep pod, before). When we left the hospital tonight, everyone was sleeping peacefully, and in the capable hands of their own personal nurse.
Other than that, we're tired, but chugging along. Bree's parents (G & Tito aka Peggy and Pancho) come in on the weekends, and Stephen's parents (Grammy & Paw Paw aka Tessa and John) are around during the week. we also have lots of amazing friends to help smooth out the kinks.
Thanks again to everyone. We feel very lucky to have you around. Beck and Elliott do, too!
I know... it looks like that duck is rabid and on the attack. Beck actually enjoys dozing off into dreaminess with the little duckling laying next to his head. I have to give credit to the nurse for this one. She also found that Beck enjoys having the stuffed horse placed between his legs... as if he's riding it. I'll attempt to get a picture of that one! Other than that, Beck is progressing wonderfully. The surgical team comes to visit him every day, and continue to be impressed with his recovery.
Another pic after the break...
Kangaroo what?
Kangaroo Care is what the nurses/doctors call it when we get to hold the boys on our chests. We usually get to do this for about 1 hour each day... and it's easily the best hour of our day. Basically, they fall into this incredibly deep sleep on our chests, while we relax in a lounge chair... not bad. We've tried to figure out who gets more relaxation from this whole event, and it seems to be 50/50. None the less, it's 100% pure de-stressing.
More pics below... just click below to continue.
Just a quick note for some great news... Beck was able to get rid of the breathing tube this afternoon. He's breathing as normal as can be, and is finally getting a chance to squirm around a bit. Good stuff.
Home again... we'll finally be able to sleep in our own bed. We'd like to have the boys with us, but it's certainly a nice perk. We'll be able to fall into a routine of spending the daytime with Beck and Elliott, and coming home at night.
Beck and Elliott are both moving in the right direction. Elliott has increased his feeding again and is sucking on a pacifier (a little preemie one... very cute). Beck is nearly off of the pain medicine and ventilator that were needed for the surgery. He's already breathing room air again, and should be back to normal breathing in about a day. He just has to wait a while before he gets to eat normal food again. Bree and I got to hold them on our chests at the same time yesterday. I took Elliott, and Bree took Beck. Quite possibly the best hour of our lives.
All in all, we're excited and anxious, but most of all just filled with love for these little guys.
Hello all... since we were a bit hectic yesterday, we just wanted to give everyone a quick update. Beck had a little setback yesterday, when they found that his stomach was distended from gas. The doctors decided to perform an abdominal surgery to find the source of the problem and correct it. They found a blockage in the intestines, and discovered that his stomach was ruptured, due to the excess air created by the blockage. Both of these were correctable problems, and the surgeons were able to fix both of them. The surgery went very well. Now, it's just a matter of giving him about a week to heal properly. Once that happens, they'll be able to put him back on a normal feeding routine. If everything goes according to plan, Beck won't ever be the wiser. He'll grow up, just as normal as anyone, with normal intestines, and the stomach of a healthy young boy. As of this morning, everything is looking great. He's back breathing room air, he's squirming around, and moving about. He just needs a few more days to get back to normal.
On a more upbeat note, Elliott is eating through house and home. He's more than doubled his food intake over the last few days. He's also able to open his eyes, look around, and follow our voices. Bree even had a chance to lay him on her chest for an hour, yesterday.
As for Bree, she's up and walking around. Slowly walking... but it is walking. Normal food, a little Motrin, and a lot of baby love!
Thanks again for all of your thoughts and prayers. I read the new comments to Bree several times a day.
Stephen, Bree, Beck, Elliott
Well... it's been one REALLY long day, but everything is going just fine. In fact, we couldn't be more pleased. As a bonus, Beck and Elliott have already had their first graduation ceremony.
[Here's some technical info... there are 3 "Levels" in the NICU (Neonatal Intesive Care) world. Level 3 is for cases that need a lot of attention. This would include breathing, and other important matters. Level 2 is for babies that are doing really well on a sustainability level, and just need to grow and learn to feed properly. Level 1 doesn't really exist, as it includes babies that go straight home.]
With that knowledge in your brain... Beck and Elliott went straight to the Level 3 NICU when they arrived in the world. This evening, they were moved up to Level 2. A step in the right direction. They've got round-the-clock nursing service, which helps us sleep soundly... when we aren't trying to make baby food. Well... that one is really what keeps Bree awake. I just clean the bottles.
Thanks for thinking about us and the boys! I think all the prayers and good vibes are working!
Disregard that last post... they're here! And they're doing great!
We'd like to introduce Beck and Elliott
April 17, 2007
2 lbs 15 oz (15 inches) 11:21pm
3 lbs 5 oz (15.5 inches) 11:22pm
Everyone is healthy and breathing on their own! Bree is happy, too. She's eating ice chips, and looking at photos of the babies. We got to hold and kiss them. Grandparents have already oohed and aahed. More to come...
More pics after the break... just click below to read more.
A few more contractions today, but everything is still going well. Bree is sound asleep, and the contractions are fading away. As always, they use a heart monitor on the babies in the mornings and evenings. They continue to look perfect. I'll keep everyone up to date... but right now, we need to get back to watching the Astros game... so I can update the boys in the morning.
Today is a really great day. Bree has pushed these boys through the 30 week mark! There are certainly brief bouts with the contractions, but the nurses are right on hand with the medicine, and everything calms down quickly. In fact, the last two nights were our best nights sleep, yet.
Bree's going to settle down with her favorite movie here in a while. Thanks again, for the emails, thoughts, and puzzles, books, socks, toenail polish, lotion, games, etc... it really means a lot!
Little baby heartbeats... looking good as always (too bad the photo isn't as nice... it's hard with a camera phone!).
Bree had some more contractions last night, but the nurse was able to bring it all back into the fold. Today was actually a great day. Amazing weather to look at out the window, a nice wheelchair ride around the 5th floor, just a few contractions, and lots of parents/aunts stopping by. We also had some peach smoothies... always a hit with the boys.
All is well in hospital-ville. Peggy (G, to the twins) has been in town, to help out with entertainment, motivation, and laundry duty. Nothing new to report, except that we're going to bed early tonight.
PS - we wish the Astros would win more games, as they would be more fun to watch.
Bree's getting in a little reading time, before dinner.
Everything's going well, as we head into the weekend. Contractions are under control, Bree's given many vials of blood to the hospital (so she's in the system and ready to go), we've finalized our pediatrician choice, we've toured the NICU, the nurses always greet us with "You're still here? That's wonderful!", and Stephen actually got some work done.
Our doctor is off this weekend, so we're in the capable hands of her talented partner (who happened to deliver our friends' beautiful baby girl Riley, just a few short months ago). It won't matter, though... we are resolved to celebrate a 30 Week milestone on Tuesday.
Have a good night!
Our wonderful doctor comes by every morning to check on us. I can't explain how lucky we are to have her. This morning, she informed us that Bree can now take 1-hour wheelchair rides! Doesn't sound like much, but it was only yesterday, when we realized that Bree hadn't even seen the hallways in this hospital. She was a little out of it, for the previous transports.
Bree's enjoying a nice crossword puzzle, this evening.
A few more contractions today, but they are still under control. Stephen also toured the NICU. Lots of super cute babies, being well taken care of. I think we're both looking forward to bedtime... zzzzzzz.
Thanks again for all of the notes, packages, and kindness. It really means a lot. (PS - if you ever need something fun to pass the time: ThinkFun Brainteasers)
The award for "Best Pun In An Email About Twins Getting Steroid Shots" goes to... Clay Collier.
"I had a Hans and Franz and steroid thing worked out, but it was weak."
We've spent part of today phone interviewing pediatricians. We had planned on seeing them in person, but apparently Week 29 is just too late to be having your first appointment. 4 weeks ago, when we made the appointments, Week 29 seemed too early.
We also met a wonderful mom who recently gave birth to 26 week old twins. They are doing great, and she was kind enough to talk to us about her experience. Stephen might go tour the NICU (Neonatal Intensive Care Unit) later this week.
Bree's watching a movie... no contractions... nice.
We treated ourselves to some non-cafeteria food tonight... and man, was it nice.
Everything is moving along. We dropped several of the medications, today. We'll pick them back up if the contractions progress. We're liking the idea of laying off the meds for a while.
I asked Bree if she had anything to say, and she responded, "Hi."... I think she's sleepy. Off to bed.
Everything seems to be going well tonight. Bree's fast asleep, and the contractions have stopped for the day. Our wonderful nurse, Mary, showed us some of the finer points of interpreting the baby's heart monitor readings. Apparently, variation is good, and the babies have plenty of it. It means that they're adapting well to movement and interaction within the uterus.
Thanks again, to everyone who has written us. We're thinking about you, too!
PS - Since we've got the blog thing rollin', you can just comment on these posts from now on...
Hello from Camp Baby, here's the latest...
Bree's has been off of the IV drip for 2 days now, and the doctor is super-impressed at her ability to hold two babies inside for extended periods. As for the boys, they seem to have begun a soccer match within the uterus. They are using Bree's bladder as a ball, and we think Baby A is up 3 goals to 1. The doctors and nurses are very pleased that the boys are swimming about, and they pass all of their monitoring sessions with flying colors. Contractions still occur occasionally, but they aren't causing any worry, so all is fine.
In an effort not to overwhelm your email boxes, we've decided to send out updates through this blog... In an effort to keep the entire world from knowing everything about us, we've made it password protected... and if you're reading this, then you all ready know the username/password. This system will let you check up on us when you want, without being subjected to an endless email barrage.
We've even got feeds specifically for Twins posts:
RSS - http://stephen.ehaywood.com/feeds/index-twins.xml
Atom - http://stephen.ehaywood.com/feeds/atom-twins.xml
(Learn more about feeds, here)
Feel free to pass these postings on to others, we just didn't want them out there for the general public.
Talk to you soon,
Stephen and Bree and A and B
Hello everyone... right now, Bree and the boys (still inside Bree) are happily dozing in a bed.
In case you're late to the party, here a quick explanation: This week, the boys reached 28 weeks of blissful growth in Bree's belly. On Tuesday, Bree's thinks her tummy's upset (turns out, that means contractions). We go to the hospital to check it out, and they tell us that we get to hang around the hospital until the boys can come out to play. The concept is pretty simple, Bree's body thinks that the best time to give birth is now... the doctor, Bree and Stephen think that the best time is later. So the plan is to slow down the contractions, and keep the babies growing for a bit longer. So far, so good. We've had minimal contractions over the last two days, and our doctor is very pleased. We've also been able to successfully give Bree two injections of steroids, in the rump. These give baby lungs a jump start in development. When combined with artificial lung surfactant (if necessary after birth), we've got lots of positive vibes. Several people have mentioned an episode of House in which these medicines were used... fortunately, our doctor caught that same episode, thought that the actors were on to something, and decided to give it a go. PS - they really are amazing medicines that do incredible things.
To be truthful, this is a rather stressful time, but everything is going very well. The boys are tracking at weights slightly larger than normal for their age, and are currently growing at roughly 1/2 lb every week, we're far enough along in the pregnancy that the neonatalogists are very happy, the steroids have had time to take effect, we've got an incredible team of doctors around us, and lots of well wishes coming our way. We're determined to be excited about meeting our babies, no matter how soon they arrive.
So, thanks again for all of your prayers, thoughts, and kind words. They really do make a huge difference. We'll make sure to write as often as possible. Until then, we'll be resting, sleeping, and growing healthy babies.
Thanks again,
Stephen, Bree, A, B
Here are some pics from G & Tito's latest trip to Houston...
one more pic, after the break
Here are the some of the Week 19 ultrasound pics. You're looking at a side view of Baby A. Unreal.
Another pic after the break...
We have a team walking in this year's Great Strides 10k to support the Cystic Fibrosis Foundation. Learn more, and support our team, here.
Recent Comments
(Apr 16, 2008)
Guys, I'm so sorry that I didn't know you were at Texas Children's. In......
(Apr 01, 2008)
Home is good! I am sure Beck and Elliott are happy to be together agai......
(Mar 27, 2008)
Thanks for keeping us posted on Beck and Elliott. We always keep Beck ......
(Mar 24, 2008)
Yea for heading home! So glad he is feeling better!...
(Mar 24, 2008)
Great news! We went to Mission San Jose on Holy Thursday and lit cand......