Retiring this blog

Thanks so much for your prayers and support.  We appreciate everyone's concern for our family so very much.   John and I have decided to close this blog since the hospitalizations are over and we have begun to adjust to our new normal. But, I have a feeling that our "normal" will be an ever-evolving thing given Ryan's condition.  Our prayer for Ryan is that he would be able to get off the TPN--while it's keeping him alive now, it will slowly kill his liver over time--his survival depends on his ability to get off the TPN and that is the bottom line.  we will be praying for this always.

Please join us at our previously-scheduled family blog: johnjessfamilyblog.blogspot.com

where we'd been posting pictures and stories for our friends and family who are across the globe.  We plan to continue there without the sole focus on the babies.

thanks again.  love to you.

The O'Neills.

holy crap

ok, the pictures below tell a beautiful story, so I won't ruin it by telling you the utter insanity that was our day and that will be our lives from here on out.  Ryan's care needs are overwhelming--not to mention that he's changed from the happiest baby in the NICU to the crabbiest baby ever.  Please understand, however, that we are THRILLED beyond words to have him home.  it's just scary.

OK, enough reality...let us go back to the loveliness that these picture attempt to convey.

first time off monitors

ready to go!

holy crap we have 2 babies...at the same time!

last few minutes in the NICU

home at last

our IV room at home

100 days

From Daddy:

Throughout this saga I couldn't help draw some parallels to the story in the Bible about a man named Job. For those who know the story, there are obviously some things that are very similar and some things that are very different. The point of the story is supposed to give hope to people that are suffering greatly, not to give you a basis of comparison. But I can't help making some comparisons.

The first, most obvious comparison to me is that Jobs friends aren't very good. Job's friends were telling him to deny God, that Job's faith was in vain, and that God would never show him his face. Meanwhile, our friends, you guys, have been telling us to put our hopes in God . Our friends have told us that it was understandable if our faith was shaken a bit and that they would lift us up with their faith and love. Our friends have been the face of God!

Secondly, the Bible doesn't really mention how long it took Satan to bring Job to his complete demise. One might think it all happened at once. Today makes 100 days for us, 100 trips to the hospital, 100 days of worry, 100 days of wondering why God would allow something like this to happen, 100 days of praying that it would all come to an ending the way that Job's story did. But, the Bible also doesn't mention how long it took for God to restore Job.

Jessica and I sat down the other night for an infrequent moment to have a discussion. We decided that we needed to end this period of self-loathing and except the blessings present in our much-changed lives. We decided it was time to move on! One problem we agreed was that things cannot move forward so long as Ryan is in the hospital. So we decided we would talk to the surgeons and push to have Ryan come home. The things they are doing at the hospital now (slowly escalating enteral foods and weaning TPN) are things we will have to do at home regardless. 

And almost as if they heard us talking, the surgical team called us the next morning to say that they wanted to start Ryan on a short path to go home--maybe Monday or Tuesday.

Can you believe it, for the first time in over 100 days, our entire family will be home at last!

Praise to God, and our deepest gratitude to all of you.

Nora's Surgery

Nora's eye surgery was yesterday and she is recovering very well. They did have to intubate her, but extubated immediately after surgery, and she was safely nursing from mom shortly after that. She did have to stay at the hospital for 24 hours for observation, so Jess stayed with her. We won't know if it was a success or not for a few days. 

ROP saga...

...Nora has eye surgery on her right eye this Friday at 1 pmish.  We are really shocked that she needs it.  I am praying that it can be done on an outpatient basis as I can't handle the thought of her being readmitted right now.

From Daddy: 

Update on Ryan: He is up to 10ml/hr feeds today with plans to go up to 11ml/hour tomorrow and then I think they are going to progress a little more slowly. His overall goal is 22ml/hour (to be off TPN totally), but as he gains weight, that goal will go up--so it is a little bit like chasing your tail. 

His incision and g-tube sites look really good and he seems to be healing nicely. It is a little harder to hold him on his belly with the g-tube there I am realizing. Diane, one of his primary nurses helped me figure this problem out. She also also asked to have his Sat. probe (measures his oxygen level) taken off for good and every line that goes makes it easier to hold him. So now, other than his heart rate/respiratory rate monitor, the rest of the lines are coming home with him (if he stays on TPN that is).

Speaking of which, Friday I am going to be be trained on how to maintain Ryan's g-tube and Broviac. The prospects of having TPN at home long-term is daunting to say the least. One source that I read said that patients with long-term central lines average one infection per year. Jessica already went through the training and we are figuring out how we will rearrange our house to accommodate the needs of home TPN.

Ryan's Bilirubin is down to 4.0 and he looks the best he has in months in terms of any jaundice. In all fairness to the Intestinal Rehab people at the U, their method of "lipid restriction" for Short Gut kids seems to be working (as opposed to alternative lipid emulsions like Omegaven).

He is gaining weight, up to 6 pounds 12 oz. and staying steady in the 10th percentile for preemies. 

He loves his vanilla flavored Elecare. They only allow him one oral feed every 3 hours, and he only gets the amount he would get via his g-tube for one hour (10ml right now). They call that P.O. which in Ryan's case, stands for "pissed off," because he desperately wants to eat much more. It literally takes him 10 seconds to eat his bottle. They tried giving it to him with the "slower" nipple and it took him 15 seconds. 

In contrast, Nora will eat 100ml/feed every three hours.  She is doing great and we are now able to phase in breast-feeding every other feed.  She is also 6 pounds 12 ounces (well was, as of 4 days ago)--she gained 18 ounces in 14 days which is great as they want her to gain 1/2-1 ounce per day, so she is well above that.

updates...and more cuteness

Ryan--"D" word's being thrown around....you know?  rhymes with gischarge....

John and I are getting trained on mixing the TPN at home, running the iv and gtube pumps and caring for Ryan's central line.  Ryan's back to getting a tiny bit of food by bottle and has become a bit more expressive since his surgery and I really don't think it's pain anymore, I think he's just mad--wants to be fed and cuddled and have a clean diaper like any baby would.

Nora--eating well.  overall a great baby. eyes slightly better.  the ophthy doc said "well, her eyes are a bit better.  no surgery this week anyway." needless to say, we go back next week for another awful, traumatic ROP exam.

Cuteness...

Sisters at home:

Missing their brother:

Ryan's doing well--he's back to continuous tube feeds, but now it's thru his G-tube, so no tape on his face!  He is healing and feeling better---clearly not feeling great, but at least he is consolable today (not so much yesterday though).  Hopefully by Wednesday he'll be on 5mL/hr and can start taking a little bit by bottle--he's clearly hungry, chomping on his fists all day long.

In Typical Ryan Style...

Thursday evening, John and I were visiting Ryan--he was awake and breathing above where the ventilator was set at, which is what they want him to do to show his is ready to get the vent tube out--he was also fighting the vent tube--wretching and gagging on it--so the nurse asked his doc if they could take the tube out--NO, they said, tomorrow morning would be better. they decided to just make Ryan comfortable overnight (read: give him tons of Ativan and Morphine to make him comfortable so he would stop gagging on the ventilator tube) and extubate in the morning.

So, I get there on Friday morning at 10am ish and his nurse relays the following story to me:

His surgeons, including Dr. G, who was the attending surgeon who lead his most recent operation, were there at 8:30 for the extubation--respiratory therapy was there, nurse was there.  Nurse was ready to go.  Tube comes out and .....nothing.   no breaths.  They start "coaxing" him "COME ON, BREATHE, DAMMIT!"  He takes a few quick breaths, then....nothing.....nothing.  Few more breaths.....nothing.  They emergently push some Narcan into his veins and he immediately opens his eyes wide and takes some breaths. and continues to breathe.  no more problems.   every one else exhales.

Seriously, Ryan.  enough.

I'm just glad I wasn't there for that.

The end of the story is that he's doing great now--he just got a wee bit too much dope overnight the night before.  He's breathing comfortably now and he even had a big huge poop, so now they should start feeding him.  he looks really good, but is clearly in some discomfort from the incision in his belly--of course after the stunt he pulled in the morning, no one is too excited about giving him any pain medication.  I did ask the surgeon if he could have just a little morphine for pain, like a fraction of a dose--so he does have that available now if he needs it.

Not out of the woods yet...

Ryan's still on the ventilator. He required a lot more help from the ventilator today--probably b/c all the fluid he got in the OR is now moving elsewhere, like into his lungs.  They gave him 3 doses of diuretics, which seemed to help and they were able to back off the ventilator settings a bit.  Today was all about rest--they were pretty liberal with the pain meds - just allowing him to recuperate.  Today, he acted like anyone would on lots of meds--he was pretty groggy, but responded to my voice by turning his head--he opened his eyes a bit for a while before going back to sleep.  Tomorrow will be a day where they start to push him a little more and  ask him to start working a little harder.  His eye exam on Monday showed some improvement, but not resolution of the ROP.

Nora- doing well at home.  gained good weight here since her discharge.  unfortunately, her eyes are worse than last check and she might need laser eye surgery--if her eyes get even a little bit worse, she'll need surgery to prevent blindness.  She has another eye exam next week and we'll know more then.

EXHALE

Surgery went well.  Thank God.

Ryan's intestines are back in one piece.  He was stable throughout the surgery--little blood loss and did well from a respiratory standpoint.  They remeasured his small intestines and he has about 5 cm more than he did 8 weeks ago which is good news...unfortunately the process of measuring is a rough one to recover from, and I was told they would not be doing it, so I sure hope it doesn't cause him too much pain.  They also did a liver biopsy.

He looks great postoperatively...we got to see him around 6pm when he was back in the NICU.  He is still on the ventilator, but was awake and looked good-way better than John, Ryan's nurse, or I thought he'd look.  He was in some pain, tonight will be all about making him comfortable so he can rest.  He is breathing above the ventilator and not requiring any oxygen--I hope he can get off the ventilator soon (last thing we need is another pneumonia).

So, we are relieved--it seems like now finally, we can work on getting him home.  It'll still be quite a while from now, but today was a big milestone completed.  Thanks for cheering him on and for all your prayers about this important surgical day.

Tuesday--Surgery Day

Ryan's surgery is Tuesday, May 12--probably late morning.  Please be praying it is complication-free and better than anyone could imagine (no more dead bowel)--that his recovery is quick and pain-free and that he is comfortable and feels the love.  Please be praying for the surgeon's hands and decision-making.

We appreciate the prayer support and will update when there's news.  Thanks and we love you too!

(post comments, please! we are finding encouragement in them!)

Ryan

The other day,  we were at Ryan's bedside during rounds.  The surgeons were gathered around him and there was a new person at rounds that hadn't met Ryan before, so the surgical fellow asked one of the residents to give a description of Ryan before they give the updates on him for the day...

Resident: basically, we're managing his feeds to see what he can tolerate

Fellow: no, I mean, tell us his whole story

Resident: he had a bowel resection and is now awaiting reanastamosis.

Fellow: no. Ryan is a former 27 week gestational age preemie, twin A of a di/di twin pregnancy,  who was doing well, tolerating all his feeds.  He got NEC at about 3 1/2 weeks of life and was transferred here for surgical evaluation.  We did an ex lap and he ended up with a 50% small bowel resection and 50% large bowel resection on 3-19-09.  He is now on continuous ng feeds with Elecare and is expected to undergo reanastamosis within the next few weeks.  That is Ryan, in a nutshell (looks at mom and dad and grins).

After this description of Ryan, i said something stupid like "he's also a really sweet baby."  I guess they're the medical people, but I would not say that Ryan's surgical course describes him totally.  So, let me add a little more to the Fellow's description of my little Ryan.

Ryan is a fighter--he has fought more and fought harder in his short 10 weeks on this earth than most people have to fight in a lifetime.  He has overcome so many complications of prematurity and is now in for the long haul with this short bowel stuff--his resilience surprises me.  Despite all of this, he is the most content baby one could imagine.  His little pleasant personality was apparent to me from the moment I met him--even before he was born, he was just quiet--would make these slow, soft, rolling movements (as opposed to his sister who seemed to be trying to drill her way out via my belly button, but this isn't about her).  He is often wide awake, looking around with his big beautiful eyes.  Every nurse that's cared for him and even the doctors have commented to me that he is so nice to care for because he is so mellow--not sleepy, not lethargic, just calm and peaceful.  he is a cuddler--when i hold him, he burrows his little head into me and snuggles in for a nap.  he loves a nice scalp massage.  he loves eye contact and will engage with me for a very long time.  when he is quietly alert in his bed, he looks so contemplative, like he is trying to figure out the meaning of life or some other great mystery--my friend Petra is convinced he is destined for greatness and I think she's right.

he's strong physically--the physical therapist told me that "gut babies" like Ryan, who spend months on their backs, have a hard time getting neck muscle strength built and usually are pretty weak and developmentally behind--well, Ryan is much stronger than expected--he picks his head up, holds it up and turns it from side to side with ease.  he pushes up with his arms when he is laying on my chest.  we were also told that he might not take to a bottle due to the tube feeds, but he loves his bottle and begs for it all the time by chomping on his hands.   he sucks his thumb, loves his pacifier and loves his bottle--he even sucks his medication down in a bottle.  he makes it hard each day not to scoop him up and bring him home.  he is our son, a gift from God, the baby we prayed so hard for. he is  a brother, a grandson, a nephew.  And he is loved.

that, my friends, is Ryan, in a nutshell.

Playtime

Nora and I went to play with Ryan today.  They had some good fun...

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.

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.)

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.

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.

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

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...

mmmm....

And now for Nora...

making silly faces...

 

taking a bottle from mom...

Both munchkins...

Thursday

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.  

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.

Omegaven

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 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'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 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

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.

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

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.

look ma, no cannula

seriously--this is the boy who had a ventilator breathing for him 4 days ago and 50% of his bowel removed 2 weeks ago.  what a rockstar. 

(this was after the oral-gastric tube was pulled, but before the n-g tube was placed--also before I cleaned up his chin--so I got this rare tube-less picture)

a few minutes later...

Ryan's been changed to elecare---a fancy schmancy formula and he is up to 3 mL/hr and doing well.  I finally got to kangaroo him today--exactly 2 weeks after the last time I held him (the day before he got so sick).  There were too many days in the past 2 weeks when I truly thought I'd never get the opportunity to hold him again--I'm so grateful to see him acting like he used to--quietly alert, content, sucking his hands or his pacifier, just being a sweetheart.  The neonatal doctors have signed off on him and now he is just being taken care of by the pediatric surgeons who are monitoring his digestion.

And of course Nora, who, by the way, was also on a ventilator 4 days ago is now healing nicely and just practicing being cute: 

Thanks, Elizabeth, for the sweet hats--they fit beautifully.

Monday

Ryan: tolerated his food well yesterday, so they increased it to 2 mL/hr today, but are concerned it's going thru him too quickly, so they will probably change some things tomorrow.  he is back to the cannula today and doing well.  I gave him a bath today, but couldn't kangaroo with him b/c the bath was enough excitement for the day--hopefully tomorrow.  best news--follow-up brain ultrasound today was normal! (NEC and the infection increased his chances of PVL, so they wanted to do another ultrasound about 2 weeks after he was diagnosed with NEC)--still no PVL, thankfully.  Here's our sweet boy:

Nora: now off the cannula.  was very alert today--posed for a few pictures since she was sporting some new clothes.  First, though, this is how I found her sleeping this morning--she's a bit of a diva, huh?

Caitlin: just to round out the crew...

sunday

I got to give Nora a bath today for the first time (not her first bath, just my first time bathing her).  She is doing well--no changes, but she can't wait to get to eating again--one more week until the treatment course is over, then no more antibiotics and she can get a full belly again.  She feels so much bigger--she's 3 lbs 14 ounces right now.

Ryan looks good too.  He's back on the CPAP, but doing better on it than he was on the cannula yesterday.  He started breastmilk again--same as before 1 mL per hour.   I pray he tolerates it this time.  He was doing well when we left--no leftover milk in his belly and he was pooping so much that he now has a itty bitty baby sized ostomy bag on his belly.  we should be able to hold him and/or kangaroo with him tomorrow. He's 4 lbs 1 ounce right now.

Ryan may be dealing with something called short bowel syndrome--that's the expectation from the surgeons since he lost half of his intestines due to the infection.  They expect he will need partial IV nutrition to maintain his nutritional needs.   I pray he does much much better than expected and surprises everyone.  Basically, with the amount of small intestine that he has remaining, it's difficult to say how he'll do--some kids do great and their intestines somehow adapt--others don't do as well.  With his extent of loss, he will be slow to transition from the IV nutrition to oral over months and months--but the key is getting him on as much nutrition via his gut as possible (either eating by mouth or via a tube into his stomach) b/c longterm IV nutrition is not good for the liver--and the sooner they start putting food into the gut, the more likely the intestines are to adapt.  John and I have been reading up on this quite a bit--some of it is hard to read and some of it gives us hope.

Saturday

our first boring day in a while, thank God. no changes so far, really.  i got to kangaroo with Nora for an hour or so today--much more enjoyable with her off the ventilator.  i hope i can hold Ryan soon.  Ryan is just over 4 pounds.  Nora is just under 4 pounds.

True Story

when we arrived today, Nora's medical team said that she'd be extubated later this afternoon b/c she didn't need the ventilator anymore--yay.  We talked to the surgical team and they weren't convinced that Ryan was ready to be off the ventilator--I was OK with that, he's been thru enough, let's wait till he's clearly ready.   Brown, a friend from church, came and prayed for the babies this morning.

At lunchtime, I said to John that I thought it'd be cool if they could both come off their ventilators at the same time.  John said "well, that's not going to happen." When we got back from lunch, Nora was again complaining about being on the ventilator--her nurse called the docs to tell them she was ready and they said it would be done at 2pm.  So, it's 2pm and all the docs and respiratory therapist and a few nurses gather around Nora, getting ready to pull her vent tube to extubate her.  All of a sudden, Ryan's alarms start going off--his oxygen sats are down to 40%.  i'm freaking out.  his nurse starts to assess him to find out why he's not getting enough oxygen suddenly---then I hear "he's extubated!"  The docs leave Nora before she can be extubated and go to Ryan.  Turns out, he literally slimed (or is it slimmed?  what's the past tense of the verb "to slime?") the tube out of his mouth--the tape holding it in place got too loose from his mouth gunk and it just came right out.  They were paging the surgery staff to find out what to do and one of the neonatologists suggested they just see what he does without the ventilator since he was breathing on his own at that point.  So, they put a cannula on him and get him settled in and see what he does.  First he starts having a bit of trouble and one of the surgeons says that he won't be able to hold his own on the cannula.  Another surgeon says that he might be able to do it-he'll let us know within the first hour or so, she says.

Then, they turn to Nora, get her extubated at about 2:30 this afternoon--it takes her a while to be happy about it, but she finally is.

We left at 4ish-Ryan's blood gas was fine after being off the vent for an hour. both were still doing OK on their cannulas.  I called at 6pm and Nora was breathing room air, just using the cannula for air flow into her nose.  Ryan was doing fine on minimal oxygen and was comfortable still breathing on the cannula.  I called at 11pm and there haven't been any changes still.

So, that's the story.  Even though they've been separated for 5 weeks, they are most certainly twins.  what are the odds that Ryan's tube would literally fall out the exact moment they were taking Nora's out?  anyway, we'll see how Ryan does--it's clear that he may tucker out and need either the CPAP or the ventilator again.

Other news is that they stopped Ryan's feeds at about 1AM in the morning since he spit up a bit--they'll retry milk in a few days and see how he does.  if he still has trouble, they might try a pre-digested formula to see if he'll do better on that.

Thursday

Ryan is eating breastmilk and so far so good.  he is getting very tiny amounts--1 ml per hour via a pump.  He's so funny when he opens his eyes and looks around--he looks so suspicious of everything.  i guess i would be too if I'd been through what he's been through.  He has no other IVs other than his central line, which will stay in very long-term.  so he is looking pretty good.  he's comfortable and they are weaning him off his agitation and pain meds over the next few days. once he's off the ventilator, we can hold him-- i can't wait. oh, and he stopped needing his diuretics as well.

Nora, on the other hand--very uncomfortable and she is making it clear that she HATES that et tube in her mouth for the ventilator.  Now, today, they've added another antibiotic for pneumonia--she was on it two days ago and it was stopped, but now they think that she has pneumonia again--so we've got her being treated for a bloodstream infection, staph, with vancomycin, presumptive NEC with vancomycin and gentamicin and pneumonia with gentamicin and zosyn. ugh.  I did get to kangaroo with her today and during the 90 minutes I had  her, her oxygen requirements went down from 30% to 23% (they were 50% yesterday)--until she started wretching and gagging on the et tube--it all ended very abruptly and horribly and she was pretty pissed about it, but she ended up being OK.  I don't know if i'll be able to do that again until she is off the ventilator.  I'm just going to be praying that she can get off the vent really soon.  she is so so uncomfortable on it.  on a positive note--her oxygen requirements and ventilator settings are lower today than they were yesterday--her color is good again (she got more blood overnight)--and she is back to complaining a lot about her discomfort, so that is a good sign as far as I am concerned.

Wednesday

(Sadie--if you are reading--i added a comment to your comment on the post below--thanks for your questions)

Ryan: still better.  started back on caffeine so that he might do better on his breathing. he pooped, which is good--if he does have some more bowel movements, he will be fed a tiny tiny bit to see how he tolerates it--this should happen sometime within the next few days. otherwise, we were told he'll be in the hospital for 3-4 months to tweak his feeds.  he'll be on long-term IV nutrition, at least to provide some of his total nutritional requirements.

Nora: i don't know.  they don't know.  now today, they're back to treating her for presumptive NEC. and a blood infection, that might be a contaminant and not a real bug causing her to be sick? and a pneumonia? maybe?  basically, they don't know.   she looked worse to us today again.  she's getting puffy from being septic, like Ryan, but not as bad as he was.  she's on an awful lot of oxygen.  the medical team says she looks better to them today.  i don't really agree.