Thursday, April 30, 2009

surgery is scheduled

ryan's ostomy take  down surgery is scheduled for may 12th, so he will be put back together then and no longer have his insides out.  he will be thrilled to not have people poking his belly and changing that darn ostomy bag all the time. he is also getting a g-tube placed, so hopefully no more feeding tubes taped to his face.
Otherwise, he continues to gain weight and is now 5 & 1/2 pounds.  Total bilirubin is down to 6.5 and feeds are up to 8mL/hr and so far so good--if I was superstitious, I'd cross my fingers, but I'm not, so I'll just rejoice and be hopeful he tolerates this.  And, as usual, he couldn't be cuter.

Nora's doing OK.  she's just started spitting up a lot and is acting uncomfortable.  The visiting nurse came out today and thinks it's reflux or normal baby stuff.  If it's an upset tummy it could be the fortifier or the vitamins she gets--or possibly the type of bottle we are using.  she's gaining weight, but not as quickly as she should.  We have a pediatrician appt tomorrow, so we'll see how that goes.

Tuesday, April 28, 2009

From Daddy:

Someone pointed out to me today that when we don't post for a few days in a row that it causes concern. But our reason for this in the last few days is all good--its the typical newborn home and nobody in the house is sleeping reason. Nobody except our three year old that is.

Actually Nora is sleeping a lot...and eating a lot... and pooping a lot. 

Ryan (recent photo below) has some good news as well--Total Bilirubin is down to 7.1, he looks much better, his weight is up to 2.45 kg, and his enteral feeds are up to 7ml/hr (15.6ml/hr total fluids now). There are starting to be discussions about his reconnection surgery coming soon!

So, sorry about the length between posts, I am so dedicated to keeping our friends and family in the know that I am typing this one-handed with Nora asleep on my chest. (I know, I make this parenting thing look easy.)

Friday, April 24, 2009

Nora's Homecoming

From Daddy:

Not too long ago, in what seems like another lifetime, I was the father of a new
born (Caitlin). She came home a few days after the birth. We were scrambling new parents. I fell in love with her instantly.

Today, Eleanor "Nora" Elizabeth O'Neill came home for the first time. She is nine weeks old--but it feels like this should be the first day of her life.  We are still scrambling parents, but for 
different reasons. There is something totally different and more personal about having your child in your own home that allows you the chance to form bonds with them (especially for fathers I think.) I can finally stop looking forward to that and enjoy the moment. (Here she is waving goodbye to her monitors and the NICU.)

In the back of my mind is the fact that we are only half way there, but its something significant to enjoy, to praise God for, and to thank everyone that has been praying for these guys.

Here is Caitlin seeing Nora for the first time at home. She was extremely excited and got to hold Nora for the first time, something she has been looking forward to for a long time. 

Preemie Baby Prayer
Author Unknown

God bless the little child behind the plastic wall For all he knows is the ringing of the bells and the blurred images around him. He has been taken from my womb without warning and I long to hold him in my arms. 

Lord, I ask in your name that my child be healed. I am willing to accept your decision no matter what it will be. I am willing to take on the responsibilities for caring for this child. I am willing to give this child love and understanding no matter the cost.

Please Lord help me to accept reality and what has happened without explanation or warning. Help me face the fact that this is not my fault and that I was given a special task to complete here on Earth.

God give my child the strength to make it through another second, minute, hour and day as each moment is a blessing and a triumph from heaven.

God, may you give the strength and compassion to the caregivers and nurses that take care of my child May you keep my child protected and free from all injury and pain.

Please take away the guilt and burden from my heart dear Lord. It is heavy and I feel it is all my fault. Take it away dear Lord. Sweet Jesus allow me the stregnth and understanding I need to communicate with the Doctors and Nurses.

As you see dear Lord, I am at your mercy for the life of my child. Please leave him here on Earth and know that I will provide all the love and understanding that this child needs. I accept the challenge and will be your humble servant dear Lord.

Thursday, April 23, 2009

a few more gray hairs today....

..thanks to Ryan, I have aged another few years.  He is doing funky things again and now they decreased his feeding to 4mL/hr.  more TPN.   I asked today why he could tolerate 9mL/hr a week and a half ago and now he can't tolerate 6ml/hr.  no good answer--they don't know--it just happens.  It could be that the antibiotics he's on are causing him to lose some of the healthy bacteria, so maybe this dumping/diarrhea will improve now that he's off them.  Thankfully, they don't think he's infected right now, so it's something else.  So, now I'm going to push for an answer on the Omegaven question.   His labs looked good today-a repeat study of his stool showed that he is indeed absorbing the sugars they want him to now (this is an improvement) and his bilirubin is down another hair.  Ryan also has a fractured rib.  This part just breaks my heart.

Nora was cold last night, so now we have to work on keeping her from getting cold before she can go home.  She passed her carseat test and is eating way more than her minimum.

Tuesday, April 21, 2009

Tuesdays update

Babies are 36.5 weeks (their due date is in 3.5 weeks on 5-17-09)

Ryan's bilirubin was down again yesterday--now his total bilirubin is 9.6 (direct is 6 point something)--so it's about 1/2 what it was a week prior.   the trend is good.  he looks much healthier.  Ryan's now 4 pounds 14 ounces.  His feeds are down to 5 mL/hr--I don't want to even attempt to explain why b/c it's a long story, but the bottom line is that he is probably fine and they expect to go right back up to 8mL/hr over the next couple days.  He's on vitamin A and D supplements now and they've done some tests to determine that he is not absorbing as much of the carb/sugars as he needs from his formula---not surprising, but we'd certainly hoped for some good surprises (we still will).   We continue to pray his intestines will grow and adapt and be able to handle absorbing all the calories he needs to grow and be healthy.  He has another eye exam tomorrow.

Nora's on her 3rd day of taking in all her calories via her bottle--her n-g tube's been out since early Monday morning.  she is burping and pooping and sleeping and complaining like a regular newborn.   She is also 4 pounds 14 ounces.  Her next eye exam is tomorrow.  She also will have her carseat test tomorrow.  At home, we have washed the crib sheets and newborn girl clothes, sterilized the bottles and washed the bouncy seat cushion, set up a changing station in the family room, installed the carseat in the car, set up the bassinet in our room, plugged the monitor back in, washed burp cloths.  All we have to do is buy lots of Purell and a can of Neosure to fortify her bottles of milk.  here's hoping.....

Sunday, April 19, 2009


Nora is now an on-demand feeder--so she can eat when she wants and they'll just be monitoring it to make sure she's taking in enough food and gaining weight.  if she does well on this, her n-g tube will come out.  she weighs 4 pounds 12 ounces.  she will have a car seat test in the next couple days to make sure she can breathe well while she rides in a carseat.

Ryan looks better.  getting bigger--weighs 4 pounds 12 ounces too.  doing great with his feeds at 8mL/hr and the surgeons expect to go up to 9mL/hr tomorrow. he was really alert and acting very normal for me today.  

Here are some pictures from Friday when they got to meet another Auntie! (8 weeks old)

Ryan resting (starting to look a lot like his daddy i think)...

hanging out with Auntie Rebecca...

And now for Nora...

making silly faces...

taking a bottle from mom...

Both munchkins...

Thursday, April 16, 2009


Ryan's doing OK still.  His bilirubin is down to 12! (note that it is still very high)  maybe it was an infection or a transfusion reaction or dehydration from the dumping or the TPN or (probably) a combination--whatever.  it's down.  yahoo!  He's gaining weight too--he's actually weighing more than Nora again--they increased the calories in his TPN a few days ago and that's helped along with the fact that he's no longer loosing all his fluid from dumping like he was over the weekend.  His tube feeds are now at 8mL/hr (full feeds for him would be 13mL/hr at his current weight) and will stay that way at least until Monday assuming he doesn't start dumping again, then they'll re-evaluate on Monday. He's about 4 and a half pounds.  Have I mentioned what a sweetheart he is?  despite all that's happened, he is so content and loves being snuggled.  he wakes right up and slugs back his bottle when he gets the chance--you can really tell he would take more if he could.  he doesn't complain though.  I wish he could get held and loved on more, but he's still pretty sleepy and I really want him to get the rest he needs.  I try to hold him for one good long time each day, but he hung out with his dad today for a nice long visit and they both needed that.  No surgery date--end of May, likely--more time for his insides to heal up between surgeries.  it'll be nice to be free of the ostomy bag and all the crap that goes with it :)

Nora-also coasting along.  She took 90% of her milk today by mouth and only had to get a tiny bit tubed.  She's losing a bit of weight because she's now waking up every 3 hours to eat (she wakes up like clockwork for her meals) and eating is a lot of energy for her.   when she was on the TPN, she could just lay there all day conserving energy.  They've fortified her milk so that she's getting more calories per ounce than plain old breastmilk--it's unclear to me whether or not we'll have to give her bottles of fortified milk once she comes home.  At the first hospital we were at, we were told that about 2/3 of her feedings would need to be fortified to help with bone development, etc once we went home, at least for a few months.  Here, we are told that she might go home just breastfeeding like a regular old baby...that it depends more on her growth over the next week as she transitions to ad lib feedings and they can watch if she's gaining or not while we do that.  either way is fine--whatever's best for Nora.  plus I have a huge chest freezer (no pun intended) full of enough frozen milk to feed a small country, so we're good there, if we need to do some bottle feeding.  Anyway, I am starting to allow myself to prepare for her homecoming--I've been pretty guarded in this respect given all the infections, scary moments and watching our children nearly die more than any parent should ever have to.  It's hard to prepare, because I feel like I'm waiting for the floor to drop out from under us again but we have to force ourselves to accept the good news as good news and move on.  So, we may have our little girl home soon--just so that she can go back to the hospital with us everyday to advocate for and love on her brother.  

Tuesday, April 14, 2009

Tuesdays update

Babies are about 35.5 weeks adjusted age...

Nora is doing well.  She's up to full feeds.  She drinks about 4 of her 8 bottles totally.  The others, she gets tuckered out after 1/2 of the bottle and they put the rest down her n-g tube.  She is nursing well.  Takes about 2/3 of a feedings-worth by nursing a couple times a day (we weigh her before and after to see what she took) and then, they'll tube the rest.   So, now her goal is to get to taking all 8 bottles each day without needing the n-g tube.  She needs to be able to hold her temp (she can already) and be gaining weight appropriately and she can go home.   The docs won't give us much indication of a timeline for her coming home, but the nurses say, best case scenario is within 1-2 weeks.  She is off all IVs. 

Ryan--back on the TPN as we expected.  He started "dumping" at 10mL/hr of formula (basically putting out too much stool), so they pulled him back to 6mL/hr and restarted his TPN.  Now he's up to 7mL/hr again and will stay here for the week and try to increase back to 9-10mL/hr now a bit more slowly.  His bilirubin is up even further (16.6)--he is still acting OK, but still seems weak.  minimal weight gain, but I guess we should be happy it's a gain.  good news is that he was able to be off the TPN, even if only for 1 day.

Dr T is the attending pediatric surgeon this week and he is also one of the authorities on short bowel syndrome in the country, so we feel blessed to be under his care.  He will be taking care of Ryan in the Intestinal Rehab clinic once he is discharged, so this is the beginning of good continuity of his care.  So, all of Ryan's issues are intertwined, but I'll list them separately in hopes that it makes some sort of sense. 

(Editor's Note (from Daddy): If you don't want to read the technical information below it can be summed up as follows:  Ryan's Billirubin = bad--but maybe not b/c of TPN, his weight gain is a concern, and  Omegaven = maybe, but we need to address other things first)

Bilirubin:  Dr T is very convinced something else is going on. Ryan's rate of bilirubin increase is not typical of TPN-associated cholestasis.  Ryan's bilirubin has gone up very high very quickly compared to what they'd expect if it was due to the TPN.  They did an ultrasound of his gallbladder to see if there's sludge--we didn't get the result, but that could explain the cholestasis and elevated bilirubin.  There are some meds he could get if this was going on.  Alternatively, it could be due to a low grade infection.  They did blood cultures last week which were negative, but he had some other signs of possible infection (acting not quite right, "dumping," elevated white blood cell count) over the past week--so they decided to give him a round of antibiotics for the next 10 days.  we'll see if the bili starts trending down soon.

Weight gain (or lack thereof): background--one of the ways they try to protect kids with SBS's livers is to restrict the amount of TPN they get, specifically the fat component--meanwhile they lose some calories they'd otherwise get--so they are watching this closely.  They are willing to sacrifice some weight gain to spare his liver for the longterm.

Omegaven: long talk with Dr. T today.  he is very gracious and informative.  we are convinced he is concerned about Ryan.  Thankfully, TPN-associated cholestasis is one of his areas of research, and he knows a lot about Omegaven as well as other strategies to protect kids on longterm TPN.  John was a superstar: after reading medical literature for 3 hours last night and watching 2 hours worth of a symposium on SBS where Dr. T was one of the main lecturers, we felt prepared and asked some tough questions about Ryan's options, and John did not back down, finally asking "what would you do if this was your kid?"   Dr. T agreed it was worthy of looking into Omegaven and he'd be willing to fill out a special request to the FDA if we felt strongly about it.  kind of a lot of pressure on us, as Dr. T is concerned about essential fatty acid deficiency if we switch his current lipid/fat infusion to the omegaven (they have different fat components in different concentrations), basically b/c it's not FDA-approved and they don't have a huge base of longterm data at this point.  In our own research, we found a few clinics that use Omegaven and none have reported essential fatty acid deficiency when they publish their data--in the end, Dr. T said we'd revisit it in 2 weeks. (first we need to see Ryan's bili come down if it's truly elevated due to infection or a gall bladder issue)--so, stay tuned.  we are praying for discernment for us and for the physicians.

Sorry for all the technicalities--just trying to give specifics so you know what to pray for.
Otherwise, we're told at least another 4 weeks before Ryan's "reattachment" surgery.

OK, enough for now.  if you made it this far, thanks.

Sunday, April 12, 2009


we have been spending lots of time reading up on short bowel syndrome and TPN-dependent kids.  Though Ryan is off the TPN now, he isn't gaining weight and I'm not convinced they won't restart it soon--either way, he will need TPN again at least after his reconnection surgery in a few weeks and for who-knows-how-long afterward.   He is not tolerating the TPN well at all (based on his bilirubin--which is 15--way too high, the reason he looks so yellow) and from what we are reading, it's due to fat accumulation in the liver--in some kids this can lead to liver failure.  It's possible that the liver doesn't tolerate the fat infusion part of the TPN that's available in the US (it's called Intralipid).   There is some research into a product called OMEGAVEN--a fish-oil-based fat infusion that's not FDA-approved here, but is used in Europe.  It seems that using the Omegaven instead of the Intralipid can stop the liver damage related to long-term TPN use in some kids.  There is a hospital in Boston that uses it on a compassionate-use basis (meaning they get special permission to use a non-FDA-approved drug for a special circumstance) and sometimes other hospitals have used it, including a couple hospitals on the other side of the state.

The Boston Globe recently wrote a story highlighting Omegaven.
This blog is about a little girl whose life was saved with Omegaven.

We are looking forward to asking the surgeons about this.  march of Dimes is spending research dollars looking into Omegaven as well for babies like Ryan--last few weeks to donate or to join our walking team!!

Saturday, April 11, 2009

Saturday 4-11-09 (Happy Birthday, Grandpa Buddy)

some good updates: Ryan was acting more like his usual self today, which means I will sleep better tonight than I did last night.  He got a transfusion this morning, so his color looks better.  He was awake and alert for quite a while today, sucked down a bottle like no big deal and wanted more--lots of good eye contact as well--lots of cuddles from me today for him.  TPN is OFF!   oh yea, and he did have a weight gain today, finally.  He wasn't tolerating his food as well as we were hoping yesterday, so they didn't increase his rate of feeds--it's still at 10mL/hr.  But today, he looked like he was doing better, so we'll see what they do tomorrow.  They also did blood cultures today to see if he has an infection since he was acting off yesterday.

Nora pooped!  she seems more restful today--she was crabby and fussy yesterday, I think from working on that poop.  She is getting about 60% of her calories via milk and the TPN should be turned off by Monday if she continues at her current pace.

Friday, April 10, 2009

Friday's update

-once a day over the past 3 days, Ryan has taken a small amount of his food by bottle--he seems to do well with it as far as tolerating it coming all at once (vs. slowly infusing through the feeding tube), but is not very vigorous at sucking right now, so he only has done it once per day.  Ryan is now up to 10mL/hr on his tube feeding and an order was written to DC the TPN sometime this evening, so that is good--we definately thought we'd be celebrating this... Unfortunately, his bilirubin is really high and he is acting quite lethargic and weak--definately changed over the past 24-36 hours i think.  still hasn't gained any weight--has been 4 lbs 2 ounces for over a week.  so the lethargy can be infection, anemia, the jaundice/liver stuff, or some combination of the above--please pray he is OK. 

-Nora is tolerating her milk OK, mostly taking all of it via bottle--she is now a "feeder/grower" according to the neonatologist--basically meaning, she needs to demonstrate that she can take in all her calories via nursing or bottle and be gaining good weight and then she can go home provided there are no more set backs.  She is currently getting about 1/2 her calories from milk and 1/2 from the TPN.  She is up to 4 pounds 8 ounces.  still hasn't pooped since she started eating again on Monday, so of course, i'm worried about that still.  she doesn't seem uncomfortable though.
-both passed their hearing tests this week too and both are caffeine-free and breathing easy.

So, we are thankful for the strides forward, but still have much to pray for.

Wednesday, April 8, 2009

wednesday updates

we have much to thank God for: 
-Ryan is up to 8 ml/Hr of formula--this is nearly full feeds for him--maybe 75% of the goal or so.
-During an xray of his colon yesterday, his surgeon said  that there's definately more colon there than he remembered from the surgery day.
-Nora is a good bottle feeder (though she's not getting much each feed as they are starting slowly) and nurser
-Another normal cranial ultrasound for Nora on Monday
-Improved eye exam for Ryan (he went from having "stage 1 ROP" to having "stage 0 ROP")
-Unchanged eye exam for Nora ("stage 0 ROP")

Here is what we are praying for:
-Ryan would continue to tolerate his increased food and remain infection-free
-Ryan would start gaining weight again
-Nora would poop and continue to be a strong eater, tolerating her milk and remain infection-free

Sunday, April 5, 2009

Call in the Pinch Hitter...

From Daddy:  After 41 consecutive days going to the hospital, management talked our star player Jess into taking a day off (and spending it with Caitlin who was clearly showing signs of needing a "Mom day"). 

So, they called up the pinch hitter and sent in Daddy to run the bases at the hospital today. I know that management had their doubts, but this wasn't Daddy's first time playing up in the big leagues.

But, it was a lot of responsibility-- Ryan needed a bath, both of them needed to be held, questions needed to be asked of surgeons, neonatologists and nurses, and fresh milk needed to be delivered. Not to mention in the middle of it all, they decided today would be the day that Ryan would get his first feed via bottle. 

But now that all the dust has settled, I gotta' say that I think I did a pretty darn good job up there today. It got a little hectic at times, like when I scrubbed in on Ryan's ostomy bag change (ok, I held his leg so he didn't kick them while they changed the bag), but I passed all the tests with flying colors. Who says that a man can't be nurturing? So, to all the dads who read this, this wasn't just a victory for this dad, but for all us!

But seriously, Ryan is up to 5 ml per hour, and they stopped his pump for one hour to let me try giving him 5 ml via bottle. He did take 2 ml and then got tired. But 5 ml/hr means that he was receiving more nutrition enterally than via TPN. I'm very proud. They are having a hard time keeping his ostomy bag from leaking because of a gap at his nearby incision site.

Nora starts feeding again tomorrow. She has some swelling in her legs that they say is just something that happens to premies--we get that answer for a lot of things it seems. 

Lots of tests for both of them tomorrow (head ultrasound for Nora and follow-up eye exams, i think)--and Mom is back on the job.

Saturday, April 4, 2009

Answered prayers: Ryan is tolerating his feeds much better--up to 4mL/hr.  10-11mL/hr would be full feeds for him (at his current weight), so we are headed in the right direction, but full feeds could take months or years to achieve.  But, if he can get 50% of his calories via his gut, then his jaundice should improve.  So, we continue to pray for him to tolerate his feeds well.  

Otherwise, Ryan seems happy and content.  Nora seems angry and hungry--poor baby.  she will start eating again tomorrow or Monday.  She is now also off caffeine, so hopefully she'll do OK off of it.

We did have that meeting with the Intestinal Rehabilitation Clinic (formerly known as the Intestinal Failure Clinic--I prefer the new name)--an intensive, multidisciplinary clinic and the whole staff was there--a pharmacist, a pediatric surgeon, a pediatric gastroenterologist, a dietician, a social worker, a nurse. They wanted to meet with us to introduce their clinic and discuss expectations.  Basically, after Ryan's next surgery (to reattach his remaining small intestine with his remaining large intestine--this happens in about 6 weeks), once he stabilizes  we will spend 2 days in the hospital with him to be the primary caregivers--manage his IV nutrition and his feeding tube--make sure we can do it.  Then he will come home.  He will have pumps that we have to manage at home as well as home nursing visits and weekly clinic visits to check his weight.  Beyond that, there are too many variables--Ryan may (hopefully) get to a point where he can get all his calories via his gut or he may not-- depending on how he does, we may have more things to consider, but we are not going to be spending time thinking about that at this point.

Thursday, April 2, 2009


just some updates: Ryan is now on 3 medications to help slow down his gut--he's been putting out way more than he's getting in, so hopefully the meds will work. His feeds are back down to 2 mL/hr. he's very jaundiced, which probably won't get better until he can process more food--meanwhile, we pray his liver can tolerate being on the IV nutrition while his gut figures out how to work. Otherwise, he seems happy and this jaundice and other stuff is expected according to the surgeons. Please keep all this stuff in your prayers.
We have a big meeting with the 'Bowel Rehabilitation Clinic' staff tomorrow, so we should get more information then about what to expect as we move forward.

Nothing new on Nora.