Retiring this blog

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

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

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

thanks again.  love to you.

The O'Neills.

holy crap

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

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

first time off monitors

ready to go!

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

last few minutes in the NICU

home at last

our IV room at home

100 days

From Daddy:

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

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

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

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

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

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

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

Nora's Surgery

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

ROP saga...

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

From Daddy: 

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

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

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

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

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

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

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

updates...and more cuteness

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

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

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