Saturday, May 30, 2009

100 days

From Daddy:

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

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

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

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

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

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

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

Nora's Surgery

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

Wednesday, May 27, 2009

ROP saga...

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

Monday, May 25, 2009

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.

Wednesday, May 20, 2009

updates...and more cuteness

Ryan--"D" word's being thrown 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.

Sunday, May 17, 2009


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.

Saturday, May 16, 2009

In Typical Ryan Style...

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

So, I get there on Friday morning at 10am ish and his nurse relays the following story to me:
His surgeons, including Dr. G, who was the attending surgeon who lead his most recent operation, were there at 8:30 for the extubation--respiratory therapy was there, nurse was there.  Nurse was ready to go.  Tube comes out and .....nothing.   no breaths.  They start "coaxing" him "COME ON, BREATHE, DAMMIT!"  He takes a few quick breaths, then....nothing.....nothing.  Few more breaths.....nothing.  They emergently push some Narcan into his veins and he immediately opens his eyes wide and takes some breaths. and continues to breathe.  no more problems.   every one else exhales.

Seriously, Ryan.  enough.
I'm just glad I wasn't there for that.

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

Wednesday, May 13, 2009

Not out of the woods yet...

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

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

Tuesday, May 12, 2009


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.

Monday, May 11, 2009

Tuesday--Surgery Day

Ryan's surgery is Tuesday, May 12--probably late morning.  Please be praying it is complication-free and better than anyone could imagine (no more dead bowel)--that his recovery is quick and pain-free and that he is comfortable and feels the love.  Please be praying for the surgeon's hands and decision-making.
We appreciate the prayer support and will update when there's news.  Thanks and we love you too!
(post comments, please! we are finding encouragement in them!)

Saturday, May 9, 2009


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.

Monday, May 4, 2009


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