Nora and Ryan

Retiring this blog

2009-06-13T09:17:00.000-07:00

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

2009-06-02T19:58:00.000-07:00

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

2009-05-30T05:27:00.000-07:00

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

2009-05-30T05:12:00.000-07:00

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...

2009-05-27T17:31:00.000-07:00

...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.

2009-05-25T15:27:00.000-07:00

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

2009-05-20T20:15:00.000-07:00

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...

2009-05-17T18:25:00.000-07:00

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...

2009-05-16T02:44:00.000-07:00

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...

2009-05-13T20:00:00.000-07:00

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

2009-05-12T17:33:00.001-07:00

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

2009-05-11T17:21:00.000-07:00

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

2009-05-09T04:04:00.000-07:00

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

2009-05-04T13:34:00.000-07:00

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

surgery is scheduled

2009-04-30T18:17:00.000-07:00

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.

2009-04-28T17:24:00.000-07:00

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

2009-04-24T17:11:00.000-07:00

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.

2009-04-24T03:25:00.001-07:00

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....

2009-04-23T17:48:00.001-07:00

..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

2009-04-21T18:44:00.000-07:00

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

2009-04-19T17:21:00.000-07:00

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

2009-04-16T15:07:00.001-07:00

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

2009-04-14T19:08:00.000-07:00

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

2009-04-12T06:40:00.000-07:00

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)

2009-04-11T18:30:00.000-07:00

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

2009-04-10T18:04:00.000-07:00

-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

2009-04-08T05:20:00.000-07:00

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...

2009-04-05T18:04:00.000-07:00

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.

2009-04-04T06:39:00.000-07:00

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

2009-04-02T10:44:00.000-07:00

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

2009-03-31T18:04:00.000-07:00

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

2009-03-30T17:26:00.000-07:00

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

2009-03-29T16:28:00.001-07:00

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

2009-03-28T17:14:00.000-07:00

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

2009-03-27T14:41:00.000-07:00

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

2009-03-26T15:07:00.000-07:00

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

2009-03-25T16:26:00.000-07:00

(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.

Tuesday

2009-03-24T17:08:00.000-07:00

Ryan is doing good things. He is continuing to pick up his breathing and they are backing off on his diuretics b/c he's nearly back to his usual weight/size. They are starting to give him opportunities without the ventilator assistance a couple times a day--he totally flunked his trial this morning. he's a ways off from getting the ventilator tube out of his mouth, but he's moving in that direction. they are starting to hear his gut wake up a little bit and gurgle, so that's a good sign as well.

His eye exam yesterday was OK, not great. some mild ROP--but the ophthalmologist says it's the type that often resolves on it's own--but he'll need follow-up, as do all preemies. he advised me not to worry about it. i won't. i have too many other things to worry about.

Nora opened her eyes for me today finally. She looks better, color-wise and was acting a bit more feisty today--kicking and showing she wasn't happy with how she was positioned. She's still on the ventilator and is still acting sick, but overall i think better. She does have an infection. her blood cultures were positive for probably staph. but she's on the right antibiotics. They aren't sure where the infection is coming from---lungs and gut are suspects. she is back to not getting her feeds in case the gut is the source of the infection. Her eye exam showed no evidence of ROP, but again, she'll still be following up with the eye doctor b/c she's a preemie.

Monday

2009-03-23T11:40:00.001-07:00

PM: first, we are weaning our blogging down to once per day--just a heads up. this is the last post for today. no change in Ryan--he's doing pretty well. when he is awake he is taking additional breaths beyond what the ventilator is doing so that is good. Nora deteriorated pretty quickly today and has been put back on the ventilator. she has aspiration pneumonia, it seems. she hasn't opened her eyes or responded to me at all today, which is not like her at all. she is getting a transfusion as i type this, which should help her out a bit. here's hoping she perks up quickly. if we weren't living this nightmare, i would think we were making this up.

AM: when we came in this morning, Nora looked awful. she was having lots of episodes of apnea (not breathing) and was very pale and lethargic. They had to put her back on the CPAP machine to help her breathe and she is not better. Now, she's even more floppy and not responding to much of anything--if she doesn't improve, she will be back on the ventilator. They are doing a workup on her to find out if she's infected--another spinal tap, another set of blood cultures, another urine culture. please pray for her.
Ryan is still looking better-his weight is down and they have been able to go down on his ventilator settings even more.

Sunday

2009-03-22T14:59:00.001-07:00

We spent the day at Ryan's bedside--I am constantly prodding his nurse and talking with her about every little thing. she's been so very gracious. We didn't speak with the surgeons today at all, really, so all of the following is based on the nurses observation and also from what she told us that the surgeons told her.

Ryan's peeing a lot still--this is very good for a few reasons--1- it means he is still getting good blood flow to his kidneys and -2-he is peeing off some of the excess fluid (his weight was up again today from yesterday). today he peed off more fluid than he got put into him via his ivs, so hopefully tomorrow, his weight will be down. He has been off the dopamine, which was helping him keep his blood pressure up, for the past 24 hours--so, it's good that he's holding his blood pressure up without the meds. they were also able to go down on his ventilator settings, which is great. he's awake today, finally. His eyes are open and he is responding to our voices.

Lastly, according to the nurse, the surgeons are now thinking that this piece of possibly-dead bowel may slough off itself like a scab instead of needing further surgery--we'll talk to the surgeons some more about this tomorrow. So, there are a few answered prayers here: lower ventilator settings and maybe the dead bowel issue as well. They really need to get the fluid off him, but not too fast, so let's pray for that as well as continued recovery in the other areas I've mentioned.

Nora's doing fine as far as I can tell. She is resting most of the day. She is still nursing well once per day and tolerating her feeds that they restarted yesterday. She still hasn't pooped and I really need her to have a healthy poop so that I can be reassured that she isn't dealing with NEC. She has an eye exam tomorrow to check for retinopathy of prematurity.

Saturday

2009-03-21T05:27:00.001-07:00

8pm: we met with one of the surgeons later in the afternoon. we came away from that discussion feeling very deflated about Ryan's progress. very deflated. they are not happy with how high his ventilator requirements are right now. also, one of the parts of his large intestine that's still in looks dead--they don't know if it is for sure, but they're keeping an eye on it (it's the part that's sticking out of his belly right now)--he doesn't exactly have extra intestine right now and they are really hesitant to go in and resect even more. They are trying to get the fluid off of him slowly--it's part of the inflammation and infection he is fighting...but the fluid is in his lungs, hopefully getting some of it off will help with his ventilator settings--so please pray he is strong and they can ease off on the ventilator a bit. Also pray that he doesn't have any more dead bowel in there--we really hoped that they'd gotten it all out originally though we were warned that he may need multiple surgeries. we really do not want him to have to endure more of this. he's been thru too much already.

1PM: Ryan looks better today to me. He is less puffy. It's looking more like the baby I knew a few days ago. He is moving more--his arms and legs and he's sucking the tubes in his mouth a bit, though he doesn't seem in pain--he hasn't opened his eyes yet and they don't really want him to--they really are keeping him pretty sedated so that he can rest and heal. They showed us his abdomen today where the surgical site is--it doesn't look as bad as I thought. I haven't talked to the surgical team yet today though.
We finally have some good news: they have ruled out NEC for Nora! Turns out that the area on the xray that they were concerned about from yesterday was probably stool--you'd think that in this day and age, they could discern healthy stool from deadly bacterial infection, but whatever. they are slowly restarting her milk today and I will try to nurse her once today. It's hard to celebrate this though, b/c Ryan was looking just fine on Tuesday night and early Wed morning before this all happened so suddenly, so it doesn't reassure me very much when they say she looks fine. I hope she starts pooping some healthy-looking poops, then I will start to let my guard down about her some.

8AM: I spoke to the nurses a few times overnight. They finally were able to get a PICC line in Ryan, so now they can draw his blood tests off his central line instead of poking him 100 times a day--this was the 4th attempt at that PICC line yesterday, so I'm glad that's over. The nurse said he needed more blood products overnight. He's still peeing, so that's good. His heartrate is down to a desirable level in the 160s -- it was over 200 the 24 hours after his surgery--so that is good.

I still don't have any new info on Nora. She's had 3 xrays since 3pm yesterday and I don't know the findings on any of them--we're not used to being left without info b/c at the other hospital, information was passed on to us very quickly, we had much more interaction with the lead physicians and it just seemed like communication was better. I know here at the U, there are more people and resources, but it's just a hard adjustment to make for us as parents. We are trying to get there early today and speak with the team when they are rounding. she was resting comfortably, still breathing without any help, when i called ths morning.

Friday

2009-03-20T11:31:00.000-07:00

2PM: They are one month old today. Here are the updates.
Nora: still breathing independently. Head ultrasound today was unremarkable--no PVL. we are so so glad. belly less full, which is good, but abdominal xray shows an "area concerning for NEC." (NEC = necrotizing enterocolitis, what Ryan has)--this is a new development and exactly what I've been fearing the most. They are continuing to hold her feeds and give her broad-spectrum antibiotics. Basically, they're treating her like she has NEC.
Ryan: is still fighting. he's starting to move his legs and toes some--I pray he isn't feeling pain associated with all of this (I think that's my biggest prayer right now, honestly, I don't want him hurting). Head ultrasound today showed no bleed and no PVL. He is still on lots of support to keep his blood pressure up. He's clotted off a few of the IV lines they had and they are having a hard time getting the IV access they need to get all his meds in him and get all his labs that he needs drawn. he got a few transfusions yesterday and overnight. They said he'd get worse before he gets better due to all the stress and injury from the infection and the surgery--he's definately worse, but the surgeons said he's not worse than they'd expect him to be.
Please pray as you are lead. thanks.

Thursday

2009-03-19T05:20:00.000-07:00

11:55PM: just held a very fussy Nora for about 1.5 hours or so--I'm worried about her--she's usually not this fussy, though she's had a rough day with all the pokes and tests and the ambulance ride and all. her belly is definately bigger and of course, with her being so fussy I wonder if her belly is bothering her. she's still breathing without any assistance at all. They are giving Ryan additional fluid to help keep his blood pressure up. We are sleeping, literally directly across the hall from the babies (I use the term "sleeping" loosely here). I am going to try to get some rest. I miss being at the other hospital--I know this is where the babies need to be right now, but the other hospital is better for me emotionally. but, whatever, my emotions are the last thing I am thinking of, really. I appreciate the comments and prayers. I'll post an update sometime in the morning or sooner if things change.

8:30PM: just went and checked in on them. Ryan's blood pressure is dropping and they are now giving him meds to help keep it up---please pray--this part really scares me.
Nora is settled in, sleeping peacefully. I noticed that she is breathing completely independently--no cannula, no oxygen, no nothing. She looks great still. I'm going to go kangaroo with her.

8PM: sorry for the late update. lots has happened. Ryan had surgery, an exploratory laparotomy, and survived, which I am so thankful for. He had about 1/2 of his intestines removed--it was "liquefied" according to the surgeon, so we are thankful he got his surgery when he did. He is now back on the conventional ventilator. Some of his IV lines are now out b/c they put in a central line. He looks better to me. He has a large horizontal incision across his abdomen and two ostomys (ies?) where the open ends of his intestines are--he will be on bowel rest for 4-6 weeks, then they will try to reattach the two ends of his intestine. fortunately, he looks pretty good. unfortunately, he lost a lot of his bowel--including the ileocecal (sp?) valve--this could pose some problems with him being able to eat and digest normally in the longrun, but it's hard for them to predict how much. He is having another head ultrasound to check for bleeding and PVL tomorrow, which he is at increased risk for now with all of this going on. He is very puffy looking because he's so sick....it doesn't really look like him right now. We are at his bedside holding his hand and touching him as much as possible. He was given paralyzing meds, so he's not moving now--he'll probably start to clear those meds tomorrow and then they might be able to back off on the sedatives.
Now for the other news---Nora is here to rule out necrotizing enterocolitis--this was what I was hoping and praying to avoid. Her belly was a bit bigger today than usual according to her docs--no other symptoms. They stopped her oral/n-g feeds at St Joes and started antibiotics just in case. They said they wouldn't have done it if Ryan wasn't so ill--they are being more cautious than usual. We requested they look in to transfering her to the university hospital now, while she's still doing well in case she deteriorates and needs surgery quickly, like Ryan did--they were able to transport her and now she is next to Ryan in the NICU here. So far, her demeanor is good, she doesn't look sick--she was really angry about all the tests they ran today. Her spinal tap and cultures are fine so far. If she still looks good in 3 days, they will probably stop the antibiotics and start feeding her by mouth again. Let's pray that she just has regular old gas in her belly like the rest of us. I'm going to go hold her tonight. I'm thankful she was able to be transported here--now we at least have 2 of our kids in the same place again. Her head ultrasound to check for PVL has been moved up to tomorrow just because they do things differently here, i guess. please pray that this ultrasound is very boring and that they see nothing abnormal. i don't know if we can handle more bad news.

1:30PM: Ryan was examined by the UM surgeons and they decided it best to operate now instead of waiting for him to get worse. We spent some time with him while they were getting him stabilized here at the U. He is in surgery now--they took him at noon and it's now 1:30. They said it would take about 2 hours but they had a lot to do in that short time. I called to find out how Nora is doing and she's still healthy, thankfully.

AM: So far, Nora is OK. I'm worried about her, of course, since Ryan seemed wonderful until 8am yesterday morning. Any hope I had about their previous trajectory is now gone--I see how quickly things have changed. She is staying here.

Ryan has just been switched to the regular ventilator at about 6:30am this morning--they needed to do this to transport him and he finally looked good enough to try that. his blood gasses are actually better on this ventilator now. his belly looks better, less distended this morning, to me and his color is much better. he is still very sick. he is going to the University now (at about 9am) and will have surgery sometime this week most likely--we will know more once the University surgeons see him (they are at this hospital too and have already seen him here)--it is very likely that he will need multiple surgeries to remove the dead part of his intestines. John and I stayed here overnight. We are going to the University with him after we change our clothes quickly.

thanks for your prayers for Ryans healing and that Nora stays healthy.

Ryan is very sick

2009-03-18T10:48:00.000-07:00

update at 6pm: he perforated his intestines--he now has a tube stick out of his abdomen to deflate it since it was filling with air and preventing him from breathing (and preventing the ventilator from breathing for him). they want to transport him to the University hospital for monitoring and in case he needs surgery but he has to be more stable first. he has been thru so much today. he has lines in both arms, both legs and one in his head. he has been cultured and spinal tapped and poked more times than I can count. this is very scary. please keep praying for Ryan. Nora is doing well today.

morning post: Please pray for Ryan. He has necrotizing enterocolitis and is very sick. He's just now being put on a ventilator again. They are watching him closely.

change of plans

2009-03-17T17:02:00.001-07:00

No brain scans this week--they are being postponed for another 2.5 weeks--no new date yet. The current attending physician says that doing them now won't change their management and they'll need to be done again in 2-3 weeks anyway. That's not bad news or good news. I guess it's one less thing to worry about this week though.

They have eye exams coming up on the 25th. checking for ROP, I presume, though I haven't asked if they're looking for anything else. Let's be praying for miraculous, unremarkable exams.

Ryan is doing great on 1.5 L of flow via cannula. Nora had to be turned back up to 1L as she didn't tolerate the decrease they tried yesterday--they'll try again in a few days. Both babies did well nursing today. Nora, in particular, nursed for 15 minutes--their nurse said that's better than many fullterm newborns--it takes a lot of energy and coordination to do all of it, especially in babies that can't breathe totally independently without trying to suck and swallow at the same time....so they can only try once per day right now and both babies need additional oxygen while they try to nurse otherwise their oxygen levels drop too low. next week we'll try twice/day/kid. once they get nursing established, they'll start on bottles and transition off the n-g tube feeds over the course of many weeks.

both parents are exhausted. i can't think of anything else right now. thanks for reading and praying and supporting all of us.

Don't forget the March for Babies--- click here to donate or join our team. i've been asked to clarify that this money does not go to our family. It goes to the March of Dimes. The walk used to be called WalkAmerica--I remember doing this walk with my mom as a kid.

whoever said...

2009-03-16T15:56:00.001-07:00

"don't cry over spilled milk"--was obviously not referring to human breastmilk. I'll spare you the ugly details behind that comment.

Anyway, both babies are gaining--Ryan is 3lb 1 oz (was 2lb 15.4 ounces 2 days ago)--Nora is 2 lbs 15.5 ounces (was 2lbs 14.7 ounces 2 days ago)--they are both up to 28cc of milk every 3 hours and tolerating their feedings very well. The neonatologist says this is a huge accomplishment--to get babies getting nutrition via their guts, pooping and peeing appropriately and gaining weight is such an important thing for preemies.

They are weaning down the flow of air into their noses now. They started this morning and there were very few alarms today, so I think they did well. Ryan is down to 1.5L/min of air via nasal cannula. Nora is down to 0.75L/min of air via nasal cannula. Nora had a little trouble maintaining her oxygen level while nursing today--she forgets to breathe. Ryan decided he would rather sleep than nurse today, so we will try again tomorrow.

They are both still in little incubators called isolettes, but the temp inside the isolettes isdown to nearly room temp now as they are able to maintain their body temperatures better (it started out at body temp when they were first born)--so a few more fractions of a degree lower and they will be out in a regular crib, still bundled up all the time.

Visitors Sunday: Amy L, Wayne and Pat

Monday: Grandpa, Emily

Nurslings!!

2009-03-14T17:45:00.000-07:00

I walked in this morning and the NP said nonchalantly "you can try nursing them each once today if you want....they won't do much but it's fine to try." This was one of those moments I've been waiting for. I was so excited (they'd previously told me it'd be another week and a half before we could attempt)--that seems like an affirmation that they're doing really well. So we did nurse--both babies latched and nursed for a few seconds at a time--the RN was impressed with them nursing at only 31 weeks gestation. This is also a big deal for me as I've been feeling pretty helpless with them being in intensive care and here's something that only mama can do, so it was a great pick-me-up after a rough day yesterday.

Additionally, they were moved into a quieter corner of the NICU today so that they can get more rest. Previously they were basically inside the nurses station because they were the smallest babies in the NICU, but now they are stable and "just convalescing" so they are moved to a less acute bed. that's more great news.

Weights are up, but again, not as much as we'd like. They're supposed to gain an ounce every few days and they're not. They are gaining though--still a hair under 3 lbs each--hopefully they'll hit that 3 lb mark by Monday when they get weighed again.

Here's the babes in their new duds....aren't they cute?

You can't really see Ryan's "Property of MOM forever" onesie, but it's super cute. He was too comfy and sleepy to bother by the time we got the camera today.
Nora is so chilled out now--she really is not that same fussy baby that screamed bloody murder with the CPAP a couple weeks ago--she is still acting appropriately, not lethargic or anything, just crying a lot less. I think she's way more comfortable without so many interventions and pokes all the time.

Thanks to our growing March for Babies team!! Keep the add-ons coming and invite more people as well. the more, the merrier.

Visitors Friday: Jaimie

Visitors Saturday: Steph, Auntie Joanie

Thursday's update

2009-03-12T16:44:00.000-07:00

IVs are OUT! if you go back and look at the pictures, you can see that Ryan had a PICC line in his right leg for TPN and Nora had one in her right arm--no more! they are IV-less as of this afternoon and just on oral feeds now. They were both weighed and are now 2# 15 oz each (no gain for Nora--small gain for Ryan), which was a bit disappointing, so they are now adding more calories to each feeding. They will continue to get weighed every 2 days. They are too cute in their preemie clothes, which really are too big for them--I'll try to get a picture soon.

So now, they are working on growing bigger to put on weight and growing older so that they get better at breathing. I'm told that in about 1 week or so (around 32 weeks gestation) we will attempt nursing a couple times a day with each baby. Right now they are getting pacifiers during their n-g tube feedings so that they can associate sucking with a full belly--they are both demonstrating a strong suck, so that is really good.

Lastly, both are due for their second routine ultrasound of their brains in 1 week (on the 19th)--the doctors are looking for evidence of PVL--I would by lying if I said I wasn't worried about this--I think, particularly with Nora, since she was so sick immediately when she was born--I worry that she was deprived of oxygen for some time--I've asked the neonatologist about this and he didn't really comment either way. he thinks the risks of PVL at their gestational age is only about 1%. Anyway, we could really use prayers for this--i'll be sure to mention it again as the dates approach.

Also, I'm still in need of teammates for the March of Dimes March for Babies---I have a three-person team right now and we can definitely do better. It's a family affair, so bring the kids--it starts at 9am, so should be over by naptime, right? see the entry below for further information. I would do a better job of trying to get participants, but I'm not very creative right now (or ever, really, if you know me) and I'm tired, so I'll just continue begging--PLEEEEASE???!!!

Overdue Updates

2009-03-11T04:28:00.000-07:00

OK, lots of good stuff coming at you. John and I are both really encouraged right now at their progress. Basically, both babies are progressing similarly, except Nora's a little bit better at breathing than Ryan. Nora is breathing room air, but the cannula pushes the air directly up her nose. Ryan is on a smidge of oxygen (he's at 23%--room air is 21%) and is doing great--off the CPAP totally for the past 5 days. Both babies' o-g tubes were out once the CPAP was stopped and now they have naso-gastric tubes (n-g), which are much more comfortable for them. They are both getting 16cc's of milk every 3 hours and, as of yesterday, their milk is being mixed with "human milk fortifier" to give them extra calories and nutrients. Their milk will be mixed with the fortifier for at least a few months. Yesterday I changed tons of nasty diapers--yay!

IVs should be out TOTALLY within the next 5 days! They stopped the IV nutrition already and babies are both just on some sugar water for the next couple days while they adjust their feeds a little bit.

Nora is now 2 pounds 15 ounces (born 2 lbs 8 ounces). Ryan is now 2 pounds 14 ounces (born 2 lbs 11 ounces). They think that the reason that Ryan is not gaining weight as well as Nora is that he's been burning more calories trying to breathe than she has.

Also, now that they are both breathing so well and the staff doesn't have to watch them breath so much (to make sure they aren't working too hard to breathe), they are now dressed! I'm going to go shopping and get them some preemie clothes. They are both getting a "preemie head"--very flat on the sides--from laying on the sides of their heads so much--they are starting to do some "head shaping" and encouraging them to lay on the backs of their heads more. Problem is that each of them has strong preferences for laying on the sides of their heads--it helps them breathe easier when compared with laying on the backs of their heads. hopefully the headshaping helps with this. Here is little miss Nora--she has a little halo-looking circle pillow that she lays on--this is part of the head-shaping.

waving hello...

Ryan in clothes

And, just to end with a funny story: I tried on my pre-pregnancy jeans yesterday. the end.

Monday visitors: Amy W, Elka, Julie

Tuesday visitors: Grandpa Wayne

Wednesday visitors: Nana, Aunt Patty

March of Dimes March for Babies

2009-03-07T18:50:00.000-08:00

This was the one real constructive thing we could think to do with all our nervous energy.

We are walking for the March of Dimes in the March for Babies at the end of april. I am the team captain (self-appointed, of course!)--and I need some teammates--there's more info below, but PLEASE consider joining our team--let's make tons of money for this great organization that serves to prevent preterm births and birth defects and to promote awareness of neonatal health concerns (and more).

The March of Dimes, March for Babies has more information about why to walk and where your money goes and what their organization does at this website.

Join our team "Walking for Nora and Ryan" or make a donation toward our team if you can't walk (I hate soliciting, but I will for this). please, please, please. Let's get a great big team together and do good things together!

Weekend Update

2009-03-07T18:21:00.000-08:00

Still wonderfully boring--boring is good.

I didn't get a chance to talk to the neonatologist today, but in speaking with the nurse, all is well. Both babies are still tolerating the increases in their tube feeds every day. For the first time today, Ryan held a pacifier in his mouth for quite a while without forgetting to breathe--previously his heartrate would plummet every time he tried to suck the pacifier, so this is some progress. I kangaroo'd with Ryan today--what a sweetie he is--he just cuddles right in and sleeps. Every once in a while if I talk, he'll open his eyes and turn his head toward my voice. Today, the plan was to not put on the CPAP, but instead to just watch him all day and see how he was doing--so, when I call the NICU tonight for my nightly report with the third shift nurse, I'll be able to see how he did--I don't want to push him before he's ready, but it's such a big step to get off that CPAP. We're told by the respiratory therapist that even if he does get off the CPAP, he may tire out and need it periodically again (they told us the same thing when he came off the ventilator 2 weeks ago)--they'll just watch. I think they tell us that so that we don't get too down if he does tire and need the CPAP again.

Nora slept the whole time i was there today, but John got to kangaroo with her when he was there later in the day-unfortunately he got fired from kangarooing as Nora started having 'events' during their time together--but not until they'd spent nearly 2 hours together, so that's still some good time with daddy. She is now above her birth weight for the past few days (maybe I mentioned that in a previous post? i don't know). By the way, who knew 'kangaroo' was a verb?

Thanks again everyone for your prayers--by all accounts the babies are doing as well as could possibly be expected for their gestational age--just 2 weeks ago, they were both on ventilators! As for me, I've had a few good days in a row after a string of bad days. I know John is beat b/c he's back to work in the midst of all of this. Caitlin needs more time with me, that is evident. so I'll need to work a bit harder to make that happen--she's a trooper though.

Visitors: Maria and Kevin visiting with the babies and John. Nana visited with the babies and me. (Big sister was coughing yesterday, so no visits from her for a few days at least)

Playing with a Full Deck...at least our 3 year old is...

2009-03-06T16:46:00.000-08:00

From Daddy:

Having a 3-year-old sometimes gives us all the laughs we need to distract us from our worries. Like when Jessica was still in the hospital, and she offered Caitlin a roll from Mom's food tray, and Caitlin nonchalantly said, "no, that looks terrible."

Well, when Jessica came home from the hospital she was pumping breast milk for the babies and Caitlin was extremely curious and asking mom about every little thing that she was doing. Moments later Caitlin asked me to go to the basement to get one of her baby bottles. I thought nothing of this because Caitlin is always taking care of her babies. Later on, while I was doing the dishes and Jessica was on the phone, Jessica was snapping her fingers to get my attention and pointing to the corner of the family room. There was Caitlin, sitting on a chair with her shirt pulled up and two decks of cards on her chest with the bottle in her lap. Thankfully she only tried it with the cards and not the actual pump! Anyway, Caitlin's ensemble in the picture above is what happened when Uncle Dan allowed her to pick out her own outfit.

With Dad back at that not-so-interesting-thing-they call-work, Jessica is pulling double-duty on the kangaroo care. Here is a great picture of the three of them back together again for the first time since Nora and Ryan's birth.

In other news, both of them moved out of their first isolettes. Their new ones are for slightly more stable babies. They are now up to 8ccs of milk at each feeding and tomorrow will move up to ten, and they have outgrown their blood-pressure cuffs and moved on to the next size. Here is a picture of all the monitors the hospital uses to make sure each baby is safe.

And finally, Caitlin got to see her brother up close for the first time last night.

Thursday Visitors: Aunt Julie and Jaimie

Friday Visitors: Jaimie and Grandpa

Wednesday

2009-03-04T17:53:00.001-08:00

well, it was John's last full day with the babies. I'm so glad we got to spend these past 12 days together with the babes during the day. I will be flying solo tomorrow.

Updates on the babies:

Ryan--did not pass his 9 hour off / 3 hours on CPAP test yesterday. By the 8th hour off the CPAP, he started "alarming." So they didn't make any changes today--but, from my observation, he did way better today. I didn't hear his alarm go off at all at the end of his 9 hours. otherwise, they did increase his feedings today and will continue to increase his milk and decrease his IV fluids over the next 8 days (assuming no pitfalls) to "full feeds." he is still super cute :)

Nora--they turned down the oxygen flowing through her nasal cannula today to see if they could get away with a bit less. She did OK, but I suspect there will be no real change in that tomorrow. Every time I checked on her today, she was chewing the cannula, so that could be why she wasn't doing stellar. She's much more calm now--still complains with diaper changes, mouth care and anytime anyone fusses with her, but settles quickly. She's on the same track as Ryan with regards to meals. she is still super cute :)

Niki came to visit us today.

As for me, I'm getting comments from friends and family on the blog and in real life noting how strong I am--fact is, I'm not. if someone asks me how I'm doing, I cry. If I stop to think for a moment about these babies, I cry. As I type this, I weep for these babies. I hate that they are struggling to breathe air that they should have no exposure to for another 2 months. I hate that I couldn't provide them a safe home for a full 9 months. I hate that their birthday was the worst, hardest, scariest day of my life. My babies are in the hospital for an undetermined amount of time. I start to think about all the "what ifs" that they may face in the coming months or years. It's hard to breathe. I hear the NICU alarms and beeps in my head when I'm home constantly. My womb is empty and my arms are empty---it's just not right.

Fact is that I am not strong. I've never felt more helpless, scared, inadequate and lost--I even feel guilty, like it's my fault, even though in my head, I realize that's not the case. I don't know what happened on Feb 20th, the day they were born, which frustrates the scientific side of me, endlessly. But I do know that we are being held up by a faithful God (whom I am angry with at the moment, I confess)--He has given us some peace and calm in this storm and has assembled an army of friends and family to take care of our practical needs so that we don't have to worry about things like making dinner, grocery shopping, care for Caitlin, rides to the hospital, etc. Nora and Ryan are doing well for their gestational age and making good strides beyond expectations. So, while I appreciate the thoughts that I am strong, I would like to take the opportunity to share that only God deserves that glory. He is getting us through this. Otherwise, I don't know where we'd be. We can't imagine facing this alone.

Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.

—Isaiah 40:28-31

no news is good news

2009-03-03T17:59:00.000-08:00

Just a quick update on the babies. nora is still doing great on her nasal cannula and feeds, her bilirubin actually went down--just plugging along, no real changes. the past 2 days she's been way more subdued--I guess she doesn't have much to complain about now that the CPAP is on hold. Ryan is improving on the CPAP--he is down to just 3 hours at-a-time, twice a day. The rest of the time he's on the cannula and he does well on it. We expect that if he does well overnight tonight, he will be on cannula all day long starting tomorrow---we're hopeful--he seems much more comfortable on the cannula (he's got sores in his nose from the CPAP). Ryan's also doing well with the M.E.N. -- but his bilirubin went up a bit more, so he'll probably be under the bili lights again after the next blood draw if the trend continues (which it is expected to).

In 2 more days they are going to start advancing the feeds and giving them more--so they should start gaining more weight at that point. Right now they are both gaining weight finally, but are both about 80 grams shy of their birth weights still.

Each day we are spending 1-2 hours kangarooing with them which is supposed to help them breathe easier, sleep better, help my milk supply--John has one baby and I have the other and we switch each day--we also read that babies who are kangaroo'd are discharged sooner than babies who are not. So we think it's worth every minute and we wish we could do it longer, but inevitably after 1-2 hours we either need to pee or we are overheating (they wrap us up in warm blankets with the babies on our chests) and need a break.

John is going back to work on Thursday, so I will be there with both babies all day, then John will come up to the hospital after work and after picking up Caitlin from preschool. the juggling act gets much more difficult as we add a full workday for daddy into the picture, add a family dinner at the hospital somedays and hope that Caitlin can sit still long enough for John to spend a bit of time with the babies. This is only the plan for 2 days since I still can't drive until Saturday--after that, we'll be able to switch up and separate our times a bit more. Thanks to my parents and Aunt Julie for driving me to the hospital in the next few days.

Once John is back at work I will be the lone parent during the weekdays. My schedule will look like this (once I can drive--starting next week):

-get Caitlin to school--usually at 9ish

-hospital at 9:30/10AM and listen to rounds and get updates from the RN, MD, NP and resp therapist. greet babies if they are awake.

-10:30 pump

-10:45 baby care for both babies (diapering, take temps, clean their mouths, which get gunky)

-11am-1pm Kangaroo one baby

-1pm lunch

-1:30-pump

-1:45 baby care for both babies

-2-4pm Kangaroo other baby

-4ish pump again

-then either leave to pick up C from preschool or wait for John and C to come to hospital (this part will vary depending on the day)

-if I'm still there at 5pm, will do baby care again

It'll be very busy days--but I'm so thankful we're able to be so involved in their care.

Thanks for continuing to lift us up in prayer--we feel it. we really do.

Visitors today: Kathy

2009-03-02T11:21:00.000-08:00

From Daddy: It seems that our little Nora has gotten a reputation for being feisty. Although they originally wanted to have her go part time cannula part time CPAP, Nora would have nothing of the CPAP. They tried putting her back on the CPAP and she threw such a fit that it was defeating their oxygen goals anyway. So...they put her back on the cannula and she has been fine ever since (it's been 48 hours now). This morning as the docs and nurses were all doing rounds the NP called it this way, "by her choice, Nora is exclusively on cannula."

Additionally, to all the nurses' dismay she has figured out how to turn from her belly to her side, which prompted the NP to jibe, "that's impossible for your gestational age!"She has pulled out her feeding tube four or five times (once with just her tongue and lips). Her nurse said, "uh-oh, you're a bad girl Nora." To which I quickly responded, "she's not a bad girl, she just makes some bad choices." This won't bode well for me when she is two, but will come in handy when she is a teenager and needs to set some boundaries with the boys!

Ryan, on the other hand, well, he is just laid back like me.

Both babies are making good progress, eating a little more, breathing a little better, and fighting their nurses a little harder. (The nurses here are very gracious and appreciate the spunk.)

Meanwhile, a special thanks to Uncle Dan who took on a weekend watching Caitlin so we could come up here unfettered. Both child and caretaker (I'll let you figure out which one was which) came out of the experience all the better for it.

Visitors: Katherine

2009-02-28T09:25:00.000-08:00

From Daddy: Only God knows how many people have been praying for these two babies and our family this week, but we have seen and heard an amazing show of support. We enlisted the prayers of our close friends and family, our co-workers and close contacts, and they in turn enlisted the help of their friends and family and so on. So that you all know--these prayers are being answered in amazing ways.

Though we have many "rivers to cross" and fear creeps up from time to time, I feel bolstered by all these prayers. I have taken the practice of quietly reading the Psalms to Nora and Ryan and this is what jumped off the pages today:

"Lord you have assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance."

Praise to God for all the help, especially the family members that have pitched in to take care of Caitlin, the close friends (and mere acquaintances) that have brought/sent food, co-workers that covered for us, and myriad other things, but mostly the prayers on our behalf.

Visitors Saturday: none

Visitors Sunday: nana, grandpa, petra, jamie, jaimie, amy l

Pictures from today

2009-02-27T16:23:00.000-08:00

A few posts down I shared about our day today. Here are some pictures, as requested by many :) enjoy!

First is Ryan--he did awesome on the cannula today--he even took off the cannula during his brain ultrasound and was perfectly fine for a few minutes--the doc was impressed. He earned 2 cannula trials a day for 3 hours each by doing that (they weren't inclined to do it previously, but now he's doing just as well as Nora is, so they are on the same schedule of cannula trials).

I got to hold him today without the CPAP, so it was the first time I've seen his face since Saturday. His face gets really puffy from the CPAP. (ignore my 87 chins)

Next is Miss Nora--take note of how the o-g tube goes in her mouth...

Here she is with her o-g tube in her hand! (you can see it sticking straight up in the air). The nurse had just replaced it 10 minutes prior b/c she pulled it out. Notice all the comfort objects--they do that to help her feel nice and snug.

As promised, the teeny-tiny preemie diaper in John's hand.

Visitors today: Cassie and big sister Caitlin

27 weeks 4 days along

2009-02-27T16:18:00.000-08:00

I took this about 24 hours before the babies were born.

brain ultrasound results

2009-02-27T12:48:00.000-08:00

Neither baby is having any bleeding in the brain! we are so thankful. Ryans ultrasound was perfect. Nora's showed no bleeding but something that is either "artifact" (which means that it's nothing, essentially) vs. an early marker of cerebral palsy. They are not worried about it right now and think it's more likely artifact, but since premature twins are at high risk of CP, this is something to follow-up on. They will get another ultrasound at 28 days of life (in 3 weeks), so we'll know more then.

Otherwise, Ryan's now getting cannula trials and did well today for 2 hours. Both babies are moving their milk through their gut, so that's good. Nora nearly pooped right in my hand as I was changing her diaper.
We got some nice pictures today of Ryan since he had his CPAP contraption off for a while. We also caught Nora being a stinker and pulling her o-g tube out--we'll post pictures when we get home.

Neither of us slept well last night--I had a nightmare that Ryan's alarms were going off and he wasn't breathing and no one was helping him--ugh, it's all starting to catch up with us. Hopefully we'll rest better tonight.

more good news

2009-02-26T12:10:00.001-08:00

The most important news is that both babies' PDAs have closed! Nora is back on her canula trials (three hours at a time, twice a day). Ryan remains on CPAP but no longer requiring additional oxygen--he may get cannula trials tomorrow. Both babies are starting (or re-starting in Nora's case) "M.E.N." which stands for "minimal enteral nutrition" which is basically a very slow introduction to food. They get 2 mL of breastmilk through their o-g tubes every 3 hours. before each feed, they check for residual milk in their bellies to see if they're moving the food along or if they need a break.

Both babies are scheduled for brain ultrasounds tomorrow. These are done routinely 1 week after birth in babies as premature as Nora and Ryan to check for bleeding in the brain, which, unfortunately is not uncommon.

We both got to kangaroo today, simultaneously. I held Nora and when I would sing to her, she opened her eyes and tried to look my way. she loves her pacifier still and I swear her cry is getting louder already. John kangaroo'd with Ryan. Ryan is also loving his pacifier now and was nice and quiet and happy with daddy the whole time. He is starting to complain quite a bit with diaper changes, which is good, we like him to voice his opinion. We are looking forward to Ryan getting off the CPAP so we can see his sweet face.

I was asked to change Nora's diaper today---I've got to take a picture of these diapers so you can see how teeny tiny they are--it's crazy. Anyway, the nurses told us today that we'll start to become more involved in their care from now on--diaper changes, taking their temperatures, etc. So that's exciting for us as well.

Thanks for your prayers for the PDAs to close! God is good. Now, let's pray for the brain ultrasounds to show nothing abnormal tomorrow.

Jessica forgot to mention...

2009-02-25T15:56:00.001-08:00

From Daddy: When we came home from the hospital with Caitlin three years ago, Jess came down with a fever of 103 leading to a whole series of disastrous events including me sleeping on the ER floor and Nana coming to rescue us. So...

Yesterday evening was the first night home for Jess, and amidst the hustle and bustle of coming back home she started to get feverish. As I went upstairs to rummage for the thermometer I had flashbacks of three years ago. The first reading was 100. The second was 101. So I did the only thing I could do--I got angry with Jess, turned out the lights, threw her a blanket and pillow and went up to bed.

People always say that God won't give you more than you can handle, and well, this was more than I could handle (given everything). I said, "God, this is more than I can handle," and went to sleep. I woke two hours later to check on Jess and the fever was down to 99. Praise God!

Needless to say today was a shorter visit; but, I did get to change Ryan's Diaper and he showed a little character as he peed all over the place while I was doing it. Who knew this would be something I would celebrate.

Wednesday's update

2009-02-25T09:58:00.000-08:00

Last night was my first night home--it went OK. at least I slept. It's tough to leave them here, but it's a reality we'll have to get used to.

Today, when we arrived, they said that after 2 doses of indomethacin, they can no longer hear Ryan's murmur! so that's promising--they'll do an ECHO tomorrow to verify the PDA closed after the 3rd dose. Once the PDA is closed, they'll start the o-g tube feeds. Also, Ryan is under the bilirubin lights today.

Nora hadn't gotten her 2nd dose of indomethacin yet by the time we arrived this morning b/c her urine output decreased so much from the indomethacin (expected side effect). so, now she's peeing again and is getting her second dose of indomethacin. Good news is that when the med makes them decrease their urine output, it's usually a sign that it's going to do the trick for the PDA, according to the neonatologist. Anyway, Nora still has an audible murmur, but it's much quieter than yesterday, which may be a sign that it's shrinking. Again, she'll get a total of 3 doses of indomethacin and then will be rechecked with an ECHO tomorrow morning. She's back on CPAP due to the PDA, but once that's cured, she'll go back on her cannula trials and feeds. Nora's off the bili lights, but it will probably be something she's on-and-off of throughout her stay here.

Please pray for:
-the PDAs to close by tomorrow
-continued good progress on their respiratory status
-john and I not to feel guilty as we juggle daily NICU trips with trying to meet Caitlin's needs and, of course, keep our marriage in a good place.

2 Steps Forward, one step back...

2009-02-24T11:48:00.000-08:00

From Daddy: Reader beware: you are receiving this information through my filters which tend to mix a few of the details up and skew a few of the more technical terms. Today I told someone that Nora was able to be on the "canola" for several hours today. Oops!

The steps forward include Nora getting to do more Kangaroo care with Mom and breathing with just the cannula. Ryan also seems to be doing better with breathing and is moving closer to getting to spend some time with Mom and Dad holding him.

But, they do have heart murmurs, and an echo confirmed that they both have PDA. (In the high school that I teach at that stands for Public Display of Affection.) Here we are talking about two small holes in the heart that are necessary when babies are in the womb, but need to close up once they are born. They are going to give three doses of medicine (something like Advil I guess) that will help these holes close up. They will do another echo Thursday to see. Please pray that it does.

Mom goes home from hospital today, which is also a step forward even though I am sure we will both be upset that we are leaving here without our babies.

A personal thanks to all the wonderful people in our lives that have been calling, praying and visiting. We got visits from Don and Jaimie today.

Other updates from jessica: Nora was doing OK with her oral-gastric tube feedings of mommy's milk all day yesterday, but they found that she wasn't moving things along as fast as they'd have liked and her feedings were held today. We also thought Ryan would get some o-g tube feedings today, but with the PDA, they are going to hold off until it's closed. Ryan did get his arterial line out of his arm today, so mom was able to hold him. He does have the CPAP on and has a PICC line for IV nutrition, but the rest of the stuff is wires for monitors. Both babies are just on caffeine (to help their immature brains remember to breathe) and IV nutrition (and the indomethacin that John alluded to above--but hopefully that'll be all done by tomorrow and the PDA will have closed).

Here's our little Nora on the nasal cannula...

Here's Jess with Ryan during his first kangaroo time--you can't really see him b/c of the CPAP contraption--it's really just in his nose, but the whole helmet thing keeps it in place in his nose and there's a chin strap to keep the air from blowing into his nose and directly out his mouth--so his mouth stays closed and the pressured air goes into his lungs

Visitors today: Don

Monday, Feb 23, 2009--NOTHING BUT GOOD NEWS

2009-02-23T19:53:00.004-08:00

Happy Birthday Daddy!
Your birthday gift: Ryan was extubated this morning and is doing well on CPAP!!!! surprise! Ryan also got a transfusion this morning which is apparent with his improved color and his ease of breathing compared to yesterday. Word on the street is that his arterial line will come out tomorrow and we will be able to hold him, which we are so so so looking forward to. He was on decreasing oxygen throughout the day and when I went in at 10pm to check on them, he was essentially on room air--great progress, but his O2 sats aren't ideal--hopefully they'll improve. The respiratory therapist told us that little caucasian preemie boys are known to be "wimpy" with regard to their respiratory status early on, so she's not surprised he's lagging a bit behind his sister.
Nora is a little spitfire--she continues to tug at her CPAP and complain when she is uncomfortable. She has got a nice set of lungs on her and can complain nice a loud to let everyone know. she takes comfort in her pacifier and LOVES her kangaroo time with mom and dad. During kangaroo time, she is just on a nasal canula (they take off the CPAP) and she has 95-100% O2 sats the whole time, so they are going to give her a few 2-3 hour-long trials of just the nasal canula tomorrow--she is really showing great improvement since her transfusion as well, but we are warned that she will likely need another at some point. this morning she was under the bilirubin lights, and that will be something she'll be on intermittently for quite a while.

Caitlin got to see the babies in person today, but no touching yet as she still has a hint of a runny nose. She is a very proud big sister.
so, really nothing but good news today!

Visitors today: Julie, Amy and Phil, Caitlin

Prayer requests:
-mommy's milk comes in so that both babies can get the good stuff.
-Ryan is able to wean off the O2 and get that arterial line out so that we can hold him
-Nora does well tomorrow with the nasal canula trials
-Both tolerate breastmilk
-blessings to the FABULOUS hospital staff that is taking great care of these babies.

Here's daddy's first kangaroo time with Nora (she had her CPAP contraption on):

Sunday, Feb 22, 2009

2009-02-23T19:53:00.003-08:00

(more updates to come--I'm delirious right now)

Here's a picture of Nora and mommy doing her first kanagroo time. Nora has quite a bit of black hair and a cute little upturned nose (like her big sister had) and is spunky (also like her big sister)

Ryan has much lighter hair (and very little of it) and a narrower face compared with Nora. Here's Ryan, intubated:

Visitors: Auntie Ella, Jamie, Amy L

Saturday, Feb 21, 2009

2009-02-23T19:53:00.001-08:00

Overnight...

Visitors: Nana, Grandpa Wayne

Birthday

2009-02-23T19:52:00.001-08:00

Friday, Feb 20, 2009 started out like any other day of my bedrest. At 3:30 I noticed some weird pulling cramps--lasted about 10-20 seconds each and were coming pretty regularly at 10 minute intervals--they were very minor, barely enough to complain about. I called my OB after an hour of this and was told to continue to rest for another hour and call back. During this hour, a 35 minute interval went by were I had no cramps--so I didn't call back. Then at 5:30ish they started up again--every 3 minutes--still painless, but I was starting to get freaked out. I told John to get a book for me, a clean pair of underwear and socks (thinking I'd be admitted for monitoring overnight like last time--that was honestly the worst case scenario that crossed my mind) and said that I wanted to go to labor and delivery regardless of what the on-call OB would advise. John wondered if we should take Caitlin to a friend's house--I said that I just had a strong feeling we needed to get there ASAP--Caitlin would come with us and we contacted a dear friend who offered to pick her up at labor&delivery. Luckily she was out of the room by the time I got examined and they told me that I was dilated to 5-6 cm! I could not believe it--I totally lost my mind--screaming and crying like a maniac. People started coming out of the walls. The neonatologist came to talk to us--that's when I started having some pain that felt a bit like contractions, though weak, and again only lasting 20 seconds, maximum. I took 3-4 breaths and they were gone. An hour later--and probably only 3 contractions later, I was fully dilated and pushing. we could not believe it. Thankfully, my beloved OB made it in time--he exudes peacefulness and that really helped us.

After 2 pushes, it was clear that Baby A's cord was presenting first (cord prolapse, i think) and it was decided that a c-section was the safest plan. So, that's what happened. On the plus side, the nurse aenesthetist (sp?) said I had a "nice small back" and the resident physician said I had "nice sewing skin" so those were nice compliments (read my sarcasm).

Born at 27weeks 5 days gestation
Baby A: Ryan Michael. 2 lbs 11 ounces. 15.5 inches. at 9:29pm
Baby B: Eleanor Elizabeth. 2 lbs 8 ounces. 15 inches at 9:30pm

I still cannot explain why I had nearly no labor pains. I had a very classic labor with Caitlin--strong, long, regular contractions--this was totally different. Anyway, Ryan came out crying and kicking and breathing on his own with good color. Nora came out very pale, dehydrated, anemic and unable to breathe independently. It was also discovered, during the course of the c-section, that Nora's placenta was torn (this is a different placenta than the one that had a slight tear 3 weeks ago--that was Ryan's and it healed)--there were lots of clots and blood trapped behind her placenta, so I had no way of knowing that she was suffering. perhaps giving me a nearly-silent labor was Gods plan to get her out of an unsafe environment? we'll never know. I had gone to my OB appointment 24 hours earlier and had no cervical changes, no signs of labor and a negative fetal fibronectin the week prior.