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We got some great pics today of Nikki and Bella.  They are allowing us to now Kangaroo with Bella when she is sprinting off her C-Pap in the afternoons.  Kangarooing is basically allowing torso to torso skin contact between the parent and baby.  I've yet to engage in it, partly because she hasn't been sprinting when I have been there, and partly because I don't want to traumatize her.  But I have to say that this is my favorite picture so far:

Mom & Bella Kangaroo style

Mom and daughter…Bella with her eyes open fully engaging her mother.  Mom's symbols of life-giving nourishment.  It's rather poetic, at least in my mind.  Skin to skin.  This is what we missed a month ago when they were born so prematurely. 

Bella has been doing terrific the last few days.  They are maximizing the amount of milk she gets and she has been sprinting for four hours at a time during the day.   All would be terrific if it weren't for the MRSA.

Since the last post, we've learned that Bella does in fact have MRSA.  On Monday nite we went into the Dogwood room in the Children's Hospital NICU, where the triplets have been since day 1, and I noticed that Bella's normal spot to the right of the door was empty.  I was actually a bit excited because I thought they had moved her near the boys, since we had been requesting that for a few weeks.  But I walked over to the bed with the pink sign nearest the boys, and was shocked to see it wasn't her.

Now, the nurses tell you at the beginning that they often move the babies without alerting the parents.  But we had been in the same room for a month and I never thought they would split up the triplets. 

Turns out that since she had a positive MRSA test, and the rest of the babies in Dogwood tested negative, they moved her out of there and into a room with all the other MRSA babies.  I'm having trouble getting consistent and accurate information about this strain of Staph infection.  The doctors at the hospital tell me that once she has it, they consider her positive for the rest of her stay.  So she will be away from her brothers for the next couple of months.  They also told me that she may walk around with MRSA for the rest of her life, as a carrier.  Many people carry it but never exhibit any symptoms, and attempts to eradicate the disease via antibiotics are often unsuccessful. 

She has not had any symptoms or adverse issues from the MRSA either, and they don't make us wear gloves or gowns when we touch her, just as long as we visit her last at night and don't go back to touch the other babies. 

Mom & Bella Kangaroo again

In any event, I understand that they want to keep the infectious babies away from the others, but we were a little upset that no one had told us that she was moved, and that we were under the impression on Sunday that she had a false-positive test. 

Not to end this post on a sour note, we had a very nice night holding Bella in a secluded area of her new room.  

She's just a few grams (less than an ounce) shy of 3lbs now and in fact has overtaken her brother Owen.  Noah is at 3lbs 10oz and has been doing quite well the last few days.

We got a call at 2am this morning that Owen had a bit of a setback and wasn't tolerating his food.  We were trained pretty quick that whenever you get a call in the middle of the night, it is going to be bad news from the hospital.  So they stopped feeding him, hence his falling behind his sister in weight.  They also X-Rayed his belly and he appears to have some air pockets in there again.  Nothing too serious at this stage, they will just watch him and keep him off his feeds for a bit.  He's at 2lbs 12oz.

I've got some articles ready to start posting, hopefully early next week.  As I stated last post, I'm hoping that this blog can be expanded a bit to include information that might be helpful to other new parents of preemies and multiples as well as general help and advice to focus on the important things in life and not let them ever be at the mercy of the unimportant. 

As I learn this art and science of blogging a bit better, the site may change look and feel a bit.  As always, we appreciate everyone's thoughts and prayers.  Thank you and bless you all.

-Papa Charley

So, today marked the babies' first month birthday and I think it's safe to say that we have the deepest gratitude to our family, friends, the doctors, nurses, God, and anyone else that had a hand in praying for and watching over our children.  They have been through so much already, each having their successes, and their challenges.

Mom and Owen on his 1 Month Birthday

Owen's over his staph infection and feisty as ever.  The nurses had to swaddle him up for the day because he pulled his food tube out twice in the early morning.  He wants to be the first on the bottle I guess.  He's got the fighting spirit.  I had my first opportunity to hold him yesterday:

Papa Charley holding Baby Owen

I'm not too well versed at holding babies.  Prior to my own I've only held one other baby, a co-workers and I didn't look to comfortable with it.  But I am so happy to have hit this milestone with Owen.  We had feared that the little guy might not even make it this far, to be honest.  He had a rough go from the first moment.  So, I soaked this in as much as possible.  I tried to sing for him a bit.  I've got a decent voice, front my own band, but I couldn't think of anything that was like a lullaby to sing to him.  I ended up singing "Creep" by Stone Temple Pilots…not exactly appropriate:

Forward yesterday
Makes me wanna stay
What they said was real
Makes me wanna steal
Livin' under house
Guess I'm livin', I'm a mouse
All's I gots is time
Got no meaning, just a rhyme

Take time with a wounded hand
'Cause it likes to heal
Take time with a wounded hand
'Cause I like to steal
Take time with a wounded hand
'Cause it likes to heal, I like to steal

I'm half the man I used to be
This I feel as the dawn
It fades to gray
Well, I'm half the man I used to be….etc.

Happy tune!

Anyway, he'll get over it….someday…after Grandpa C (my dad) or rich Uncle Mike (my bro) foot the $20,000 bill for psycho-therapy.

Owen is up to 2lbs 15oz and is eating like a crazy man.  They will put him on the bottle once he weens off the C-pap. 

Our favorite moment today was having the opportunity to each hold Bella.  She's still a tiny thing, at 2lbs 9oz, after holding Noah, she felt like a Nerf football.  But I damn near cried when I had my chance to hold her and I know Nikki felt the same. 

Mamacita and Babycita June 28

We had a MRSA scare with her this week.  MRSA is a rather resistant strain of Staph infection.  She tested positive on a sample taken from some discharge around her eye.  She is on antibiotics and since then has tested negative, so we aren't sure if the first one was a false-positive or a contamination issue with the sample.  Either way, they caught it early and are treating her.

Daddy's first pic holding Bella

She make burbling sounds and stuck her tongue out at me a fair bit, when I held her.  I decided to overlook these transgressions since it was her birthday, but by 2 months she better shape up and start calling me Sir (just kidding…I'll give her to 3 months).  She's also started sprinting a couple of hours a day without the breathing mask.  Can I tell you how proud I am that she's recovered so quickly and come so far from her Pulmonary Hemorrhage?  I think I just did.

Noah is doing terrific.  He sleeps a lot and eats a lot…reminds me of rich Uncle Mike, but I digress (need I mention, poops a lot?  Nay!).  He's up to 3lbs 7oz already, and he has been sprinting as many as six hours at a time with out the breathing mask, twice a day.  The doctors believe he has developed Retinopathy of Prematurity which is a disease of the eye that affects some preemies.  It is something that may work itself out, or it could lead to detached retina or even blindness.  I would imagine that he would get surgery if it ever got more advanced, but for now they are just watching it.

Lest you tire of looking at ugly Papa Charley, I give you, Grandma Sue and Noah:

Noah wrapping Grandma Sue around his finger

That pic was actually from a couple of days ago when Nikki took her mom up to see the kids during the day.  They still have the Swine flu ban where only the parents and the grandparents can visit the kids in the NICU.  This I feel badly about.  Many members of my extended family are coming to town this week and I would like nothing better than to bring them up.  Hopefully something changes in the next few days. 

Well, as you can see, the babies are doing well.  I try to have fun with things when I write about them, and I am so very grateful for every moment I get to spend with the children.  Make no mistake, we are very aware of the seriousness of their conditions but all you can do is hope, pray, and put on a good face. 

So, as if this entry wasn't long enough, I have been giving some thought as to how to use this blog, not just as a means to update family, friends, and other parents on the babies, but as a tool for putting together thoughts for my children.  I am a far better writer than verbal communicator.  I may utterly screw up those moments in the future when the opportunity comes to provide guidance and a lesson.  So I thought that I would try to get my best thoughts and advice on living mindfully to the kids and put it out here.  At some point I would, in theory, put it together in a book for them (if there are still things such as books eighteen years hence).  I am still tossing around a posting schedule for this sight.  The baby updates may only be once or twice a week, and then I think I may add the odd article in, weekly, on some mindful living subject matter.  I tell you this so that the group of regular readers here don't become shocked one day when they see an article on 50 Little Known Uses for Tube Socks or How to Sneak a Case of Beer into Your Dorm (credit to rich Uncle Mike), or some other important life lesson.  Anyways, it's after midnight here in Buffalo right now and I am exhausted.  As such, no proof-reading this post, it's going right out there.  Enjoy, and bless you all.

-Papa Charley

Noah looking up at Mama

Short post tonight with a few pictures.  I want this post to just be about the happy moments we had today.  No infections, collapsed lungs or anything else.  I am so happy and proud that we were able to both hold our son, Noah today.  He had been making very good progress on his breathing and they were starting to ween him off the mask for a few hours a day.  And now that he's up to 3lbs he's a bit bigger and heartier. 

My wife was at the hospital earlier today and they let her hold him for about fifteen minutes. He looks fabulous in the pictures and he was very awake and active.

Nikki and little Noah

I was so happy for her when she called me to tell me this.  We went up to see the babies again after dinner tonight, and much to my surprise, they were about to take the mask off him again at 10pm and I got my opportunity to hold him for fifteen minutes. 

Tattooed Papa and Noah

He opened his left eye a few times to look at me briefly, but slept most of the time.  I just rocked him a bit and concentrated on my deep breathing, sending him positive thoughts and energy from my third eye to his.  He felt so light (obviously…3lbs) and smelled sweetly like babies do.  I just remember telling myself that I didn't want to ever forget this moment.  I will cherish this just as I will cherish the moment I hold my beautiful daughter, Bella, and my brave little fighter, Owen. 

I'm going to end this post with just one more picture:

Zen Moment

Namaste

-Papa Charley

owen-fussy-video3

Today was my first Father's Day, so forgive me that the post is a bit late.  I spent most of the day milking this for all its worth.  I accidently got a nice video of Owen on my camera, when I thought that I was actually just taking a picture of him.  I can't figure out how to embed the video, in this post, however.  It's pretty cool, he's kicking around for about five seconds.  I think the link above should work.

The NICU now has some restrictions, as a result of the Swine flu case at the hospital.  Currently, no one can visit the babies in the NICU aside from parents and grandparents.

When we walk into the NICU, Bella is always the first bed on our right, so we usually go to see her first.  I got a couple of good pictures of her with her eyes open:

Bella Awake June 21

She's been very active lately.  If you look closely at this next picture below, you will notice that her right leg is safety-pinned to the bed.  Turns out that she's quite the feisty little girl.  We may need to heed this lesson when we bring her home:

You can only hope to contain her

Our little girl is up to 2lbs 6oz and she is now off her antibiotics from the pulmonary hemorrhage scare.  She's still on the ventilator to help her breathe but they started feeding her again today, 1/2cc per hour, so she is doing very well.  Honest to God, she is just so beautiful.  Nikki spent alot of time with her today and Bella just kept looking up at us, trying to figure us out.

Noah has had a terrific few days.  The big guy is up to 2lbs 13oz and he is now on the C-Pap where the mask over his nose just gives him a bit of oxygen as he does his own breathing.  Before we left tonight, they set his C-Pap to 21% O2 which is the same level as normal air.  If he can handle this steadily for a few days they may take the Oxygen mask off.  Nikki spent a lot of time with Noah tonight, stroking his head and also changing his diaper.  She showed great skill, despite the wires involved.  Here's a pic of Noah today:

Noah Chowing Down

I took a turn at changing Owen's diaper next.  It took me several minutes as I had to work around his wires and his colostomy bag.  He took it well, I think he was just giving his old man a break on Father's Day.  I joked with James, the nurse, that he was probably dreaming of being abducted and probed by aliens as I was doing that.  James was very nice about it all, but I'm pretty sure he had to go back and fix Owen's diaper after I left.  It's not easy, what with reaching your hands in the incubator holes to do all this.  It's clear that my wife has the early lead in the skills competition of Diaper Changing.

Owen had a bit of a respiratory setback with his Carbon Dioxide levels (registering 64 when they should be no higher than 45) in his blood, something they call testing the blood gases, and they will often do it two to four times per day.  His heart rate kept dropping, too.  As a result they had to put him back on the Si-pap at 10 breaths per minute.  He's also being treated for a Staph infection, though we're not entirely sure which one.  We know that the MRSA culture came back negative, so it's not one of the more nasty infections. 

On the plus side, having his small intestines sticking out of his belly hasn't seemed to have affected his appetite.  He is getting 5cc's of milk every hour, and if he goes up to six without any issues, they will take out his pick line (feeds lipids into his body) and just feed him the milk.  One less wire to worry about.  Hopefully we will see that milestone achieved this week. He's up to 2lbs 9oz now

All in all, it was a terrific Father's Day.  My wife got me an IPOD Touch so that I can spend even more time digitized.  Not sure she realized the ramifications of her gift purchase, but she soon will, that I can assure you.  The babies are doing terrific and apart from still not being able to hold them, and Nikki's father not being alive to see them, we feel pretty grateful about everything.

Happy Father's Day!

- Papa Charley

First of all, many apologies but I have no new pics tonight.  I try to take them when I see an appreciable difference in their appearance or we get lucky and they are awake or they are being weighed and don't have their masks on.  Lying in their Isolation chambers everyday often means that there isn't much outward change in them, though their little bodies are doing so much on the inside to change and grow. 

Apologies again that this post may be short.  I am very tired, my wife is already in bed, and the stress of work, getting our new home ready for the babies, and worrying about my four precious one's (yes my beautiful, recovering wife often gets lost in this ordeal that I write about.  For this I shouldn't be forgiven.  I love her with all my heart and she is a true inspiration in selflessness for what she bravely went through to get the babies to this point). 

Okay, maybe this won't be a short post.  I'm over-tired, and now endeavoring to just make sense for a paragraph or two.

Owen took a huge step on Tuesday and was removed from the Si-pap.  This is the device that would provide some assistance in breathing for him via various breathing frequencies.  He had gone down from twenty breaths a minute to five on the Si-pap and then Tuesday he was taken off of it.  Now he just gets a little oxygen through a C-Pap to make sure his body stays saturated with O2.  In the day and a half since, he has done extremely well.

When Nikki and I were at the hospital last night, sitting by Owen, he had just had his diaper and bedding changed and was beginning to settle in.  He was quite interactive with my wife and there were some nice moments of him grabbing her finger and staring up at her.  It was easily the most touching moments so far in that I felt that he was actually understanding that we were his parents and he was trying to acknowledge that. 

At one point, we actually witnessed one of these spells that I have been writing about, where he stops breathing and his heart rate crashes.  Interestingly, he was very agitated during that time, so it may have just been a malfunction because he was moving around so much, but he looked really uncomfortable and Nikki got visibly upset by the ordeal.  She feels their discomfort and pain, not that I don't.   I am so full of gratitude that they have made it to where they are, and that while there is sometimes one step back, (and no parent wants to see their children in pain) we are more often taking two steps forward as a family.

Owen has been "eating" more now too, getting 1cc of breast milk every hour and tolerating it well.  His small intestine seems to be passing waste well and is actually on a colostomy bag now.

Noah is off his antibiotics for his belly issue and today was his first full day on breast milk again.  He is getting 1/2cc every hour.  He continues to grow and looks terrific.  He's now 2lbs 9oz and with his blond hair I am beginning to wonder if some 6'4" German bodybuilder is not his true father instead of me (kidding…but I think we should get a paternity test…just kidding…secretly wondering if the all night Walgreen's has a home paternity test…I'm a kidder).

I was surprised and honestly a little perturbed to hear that they attempted to move Bella off the Oscillator and extubate her of her breathing tube today.  The normal process is to go from Oscillator to Ventilator and then to the Si-pap (where she is extubated).  They kind of skipped an important step there, thinking she was ready, because she was doing so well on the Oscillator.  She was fine for about an hour on the Si-pap but then crashed again.  So they had to put the breathing tube back in and at least she is on the ventilator right now.  No, big deal, she is still improving from even the beginning of the day and she really is trying her hardest.  You can see her struggling over the machine and attempting to do her own breathing.  It's difficult to watch because you just want her to relax and let the machines make her better.  She didn't seem very restful the last few days but she will often calm down and rest if you put a hand on her head and another on her bottom.  Just a bit of pressure and she seems to like that. 

Okay, so I guess this turned out to be a lengthy post after all.  I truly enjoy writing these updates, but even at that, it felt like it was going to be a chore tonight.  Once I got into it, it flowed and took less than an hour to write.  If you forgive my grammar mistakes I will forgive you for being anal retentive (again, with the kidding.  I'm too much).  Thank you very much to everyone for your kindness and love.  All five of us thank you.  Right now I have a date with a pillow and my beautiful wife…just in time for her to get up for the midnite breast pumping.

-Papa Charley

Bella June 15th - on Oscillator

First, a nice pic, above of Bella.  Her hair is starting to get long.  It's so nice to see her without the mask on.  It's really hit or miss whether we can get a nice picture of the kids.  It so happened that tonight they were running some tests on Bella and Owen and they had the top of the incubators off.  Crazy dad started taking pics, with ninja-like efficiency.  Unfortunately, we didn't have as much luck getting a picture of Noah. 

Bella had been doing fantastic to this point.  The nurses warn you again and again that there will be ups and downs.  She had her first major down Sunday morning (June 14).  At approximately 6am she stopped breathing.  The kids often have spells a couple times a shift but she didn't start breathing on her own again.  They tried to coax her along but she started turning colors and looked really bad, by their accounts.  The practitioner said that there was about ten doctors around her (find that hard to believe since there's not that much room but that's what she said) and they worked on her for about forty-five minutes before finally suctioning out a fair bit of blood from her trachea and getting a breathing tube back in her. 

They took some cultures, of which we don't have the results yet, but the early indication is that she suffered a pulmonary hemorrhage in the upper quadrant of her right lung.  The lung also partially collapsed.  So, right now they have her on an Oscillating ventilator.  This is the gentlest of ventilators that basically inflates the lung and literally pulses it hundreds of times per minute.  I am sure she is happy to have her mask off for a bit, to give relief to the pressure on her face and head, but this is a rather serious condition, less common than Owen's bowel perforation. 

The nurses suction her lungs every few hours and are still getting a bit of blood, but not so much as before.  By all accounts, she looks a thousand times better than yesterday, and has had no further collapsing of the lungs, but they will be watching her very closely. 

She looks so beautiful in this picture.  I was nearly overcome with emotion and love for her when we said our goodbyes and left the hospital tonight.  Again, we are extremely fortunate that the nurses were watching her.  Had this occurred when in our care at home, the results would have been tragic.  On the positive side, she is up to 2lbs 1oz now and looking very good.

The boys are doing terrific as well.  Here's a nice pic of Owen a moment after they took off his mask and Si-pap so that they could weigh him:

Owen June 15th, No Mask

His face is a bit smushed from the mask but you'll forgive him for having a rough few weeks.  Just above his diaper, the little red area that looks like it might be his belly button is actually his Stoma (small intestine) that is sitting outside the wound from his surgery.  They let me change his diaper tonight.  I imagine that it was comical watching me trying to wipe his doodle quickly and then pop the diaper over it before he might accidently let the fire hose loose all over me.  I was clumsy at it but I am guessing I will become quite the pro after doing thirty diapers a day between Nikki and I when they finally come home.  Owen is now up to 2lbs 4oz and he is getting 1 cc of breast milk every hour.

Noah is on his last day of antibiotics from his belly issues and we are hoping they start to feed him tomorrow.  Undaunted, the little guy is still putting on weight.  He is up to 2lbs 7.5oz and we couldn't be happier that they are all beginning to grow.  He looks terrific, really filling out.

Signing off for the night.  Thank you everyone, for your support, help, thoughts and prayers and God Bless.

Bella June 12 - No Mask

 We got lucky today at the hospital with our timing.  The nurse had to administer Bella Marie some medicine through an inhaler and so they took off her mask and allowed us a brief window to snap a picture.  Someday she may look at this picture, the first picture we have of her without a mask on and it may upset her or embarass her because of how small she is and wrinkled and bruised.  I hope she doesn't react that way.  I want her to know that I know she is a beautiful little girl just like her mother and this picture exhibits the strength and willful resiliency of a little girl who will be very successful in life because she's had to work very hard from the first scary moment she entered this world, just like our two sons.

So in New York State, the Newborn Screening Program screens babies for forty different congenital diseases and the HIV virus.  Most of the disorders screened for are quite rare, but they are usually very serious, particularly if left undiagnosed and untreated.  Typically, the screen is done on the day that the baby leaves the hospital, however, since it was already known that our babies would be in for awhile, they did it the day they were born.

The Newborn Screen is generally a "no news is good news" situation.  The State will call the hospital right away when there is an issue, but if the screening is clear, they typically take thirty days to report it.  Based on this, we thought we were in the clear but learned on Wednesday that Noah, in fact, tested positive for Congenital Adrenal Hypoplasia (CAH).  We were quite upset to learn this two weeks after the fact.  The hospital was a bit non-chalant about it, indicating that they didn't want to unnecessarily worry us. 

With CAH, the lack of an enzyme can cause shock or death in infants because the kidneys lose too much salt.  The condition is treated with steroids and special minerals to replace lost salt.  Of the diseases screened for, it is moderately common, occurring in one out of every 15,000 births.  The doctors are not yet treating him for the condition because they have not noticed any clinical signs that he is having issues.  He would typically have a low pulse (low heart rate) and be lethargic, but in fact, he has been quite active and despite the occasional spell, his heart rate has always been in the normal range.

I understand that the nurses think there is a lot going on for us, as new parents with three very premature babies, and that they don't want to burden us with all of the things that can go wrong, but we both feel a bit betrayed by not being told before now.  Yes, I know that disclosing or not disclosing the issue to us doesn't change the reality of the situation, nor the decision on treatment, but I feel like we put a great deal of trust into these professionals and I would expect honesty and full disclosure in return.  After discussing my feelings on the subject with them, I think they understand and we can put this matter behind us. 

I have no quarrel with the nurses and staff, they really do an excellent job, but between this and the issue of initial non-disclosure with the blood on the brain that I wrote about last post, we had a bad day (Wednesday) and left the hospital a bit upset. 

In any event, they will continue to monitor Noah and in two weeks time, they will administer another Newborn Screening.  He looks good, a fair bit bigger than the other two babies and as I said, doesn't seem to be showing any clinical signs of issues.

Owen started getting some breast milk for the first time today, which is a great sign that he is recovering well.  He gets a half a drop (cc) every hour and has been stomaching it well all day.  Nikki had the opportunity to change Owen's diaper before I arrived tonight and I later watched her struggle a bit with Bella Marie's.  She's a bit feisty (Bella, not my wife…actually my wife is too, but that's besides the point) and she is so, so tiny (Bella, again ).  The wires from her machines are often in the way and the diaper, as small as it is, is comically large for her (think clown pants).  I could see why she had so much trouble (think microsurgery while wearing mittens).  It was a funny and cute moment. 

The babies were doing great today and I feel absolutely ecstatic about it.  We spent a fair bit of time touching them and placing our hands gently on their heads to calm them when they got upset.  I think I could learn to like this parenting stuff.

- Papa Charley

Owen Resting Without Breathing Tube

Relaxing with a Guinness as I write this and am quite contented.  Some folks at work have commented that I seem calm and rested through this process.  I'm not sure if that's necessarily true, but I do what I can.  You have to take care of yourself as well, during this time.  The really interesting moments where sleep will become a precious commodity haven't started yet.  But there are simple things I do.  I make sure I exercise still, do a little stretching (which is a more macho way of saying that I'm really doing Yoga) and even more simply, I decide when I go to bed every night that I'm going to wake up refreshed and have a good day.

Yesterday, June 9th was a good day.  The nurses removed Owen's breathing tube (extubated him) and, with his brother and sister, reached this encouraging milestone where they are breathing largely on their own.  He's been doing great in the day and a half since.  He's got a good set of lungs on him and has been doing a bit of crying on and off.  Music to my ears.  I just have to keep reminding myself of that.  As new parents, we think every cry means the baby is in great distress and/or pain.  Of course, we logically know that's not true, but we want to be the one's to fix everything.  The little blue thing on his nose is a Psi-pap and as mentioned in my last post, that gives him a little help with about twenty to twenty-five breaths per minute.  All three still use the Psi-pap.

Bella is on room air (20-21% oxygen) through her Psi-pap, which is excellent progress,  She was very peaceful tonite except when they tried to put a new pickline in her arm.  The wife said she screamed bloody murder for that and I don't really blame her. 

The Chest PT - this thing is pretty cool.  Noah was getting it yesterday.  It looks like a tiny rubber mallet.  And the nurses will basically bounce it gently off the babie's chest and back around the upper and lower quandrants of each lung.  It breaks up secretions in there and recruits airation to the lungs.  I joke with the nurses that it's time for the babies' Swedish massages (a comment they've probably heard one million times before from other parents but I crack myself up anyway).  Between that and the sun lamps for their Bilirubin and the humidity and heat controlled (read Sauna) incubator they are in, and it's like they're in a day spa.

Bella is up to 6 cc's of breast milk at each feeding, so she is doing terrific.  The boys are not "eating" at this time.  Owen, for obvious reasons, after his surgery, and Noah, for precautionary reasons.  Noah's abnormality in his intestines from the weekend has subsided but as a normal course of action they keep him on antibiotics and off breast milk or formula for a week.

I've got a lengthy post to write about Noah and his Newborn screening but I am going to have to save that for another day.  I just want to say thank you to everyone for their thoughts and prayers.  We appreciate them all.

-Papa Charley

Noah - Mask Removed June 5th

It's hard to get decent pictures at this stage.  What my wife and I see of our children in the NICU is mostly a series of breathing apparati, feed tubes, and monitor lines.  We cherish the moments where we can reach into the incubator and touch their hands, gently, or to stroke their heads ever so lightly.  We ache to be able to hold them in our arms, but we know that this luxury is several weeks away.

Noah Opens Eyes

The beautiful moments this weekend were on Saturday, June 6th, where all three babies opened their eyes while we were there.  They were quite alert, even little Owen, just a few days after his surgery.  I'm not understating that this was one of the truly wonderful days of my life. 

While Owen is doing quite well recovering, the nurses are now being cautious with Noah as they found some abnormalities in an X-Ray on his abdomen.  They are concerned, because of what happened to his brother, that Noah may be developing intestinal issues as well.  They continue to give him regular X-Rays and so far they have no reason to believe that his issue is nothing more than a bit of intolerance to the breast milk.  They have taken him off his regular 9cc's of breast milk every three hours and continue to watch him, but so far, no other news on that. 

Bella swaddled

We spent a fair bit of time with Bella on Saturday.  She lay on her side as shown above, while Nikki stroked her fingers and hand.  She opened her little eyes and just stared at mom while I stood with my arm around my wife.  It was a Zen moment if there ever was one. 

Owen Resting After Surgery

Owen is our little fighter.  We are so proud of him.  His will to survive and thrive is really inspiring.  It's difficult for us to see him like this but he seems to be comfortable most of the time.  Tonight, he was resting on his belly and looked very comfortable.  In fact, all three babies were resting on their bellies today and the nurses noted that they all seem more comfortable that way.  Noah, particularly, gets extremely fidgety on his back.  This may be how the tubes rest inside their bodies, particularly when they are trying to breath. 

Owen is the only one of the three that is still on the ventilator.  His ventilator is sending him air that is 24% oxygen, so he is getting there.  By comparison, normal air is typically 20% O2.  Noah and Bella breathe mostly on their own, though they have a device called a Psi-pap with a little mask that goes over their nose that helps them breathe part of the time.  Bella's Psi-pap helps her breathe twenty times per minute.  She averages about 45 breaths per minute so many of those are on her own.

Noah's Psi-pap is set to help him breath twenty-four times per minute, and he too is averaging forty-five breaths per minute.  Both Bella and Noah sometimes suffer from what the nurses call "spells."  This means that their heart rates sometimes crash and they sort of forget to breathe.  If it happens frequently during the nurse's shift, they may intubate the baby again with a breathing tube.  This occurred with Bella early last week, but she was extubated again two days later.  They both had some spells today as well, so we will have to wait and see.

Owen, due to his surgery, is regularly having his tummy pumped out of waste.  They have started doing something similar to Noah as they watch his progress. 

Finally, Bella and Owen are back on the Bilirubin light to help treat jaundice.  The therapy uses a blue light (420-470 nm) that converts bilirubin so that it can be excreted in the urine and feces. Soft eye shields are placed on the baby to protect their eyes from damage.  Jaundice, untreated in infants, can lead to brain damage or cerebral palsy.

It sounds like a lot, and I apologize if it seems like that I only write about the problems they are having, but again, I think that understanding the machines they are on helps Nikki and I cope with what they are going through.  We know that the machines and tubes are there to help them and we try to find some solace in that.

Just a note, these posts are pretty much stream of consciousness, so they often jump all over the place and may sometimes be repetitive.  My apologies for that, but with everything going on right now, I don't really have time to edit.

At the end of the first week with the triplets in the NICU (Neo-Natal Intensive Care Unit) baby Owen had a bit of a setback. Poor little guy has been fighting since he got out of the womb.

Nikki was recovering at home on Thursday June 4th, and I had elected to also work from home that day to watch her in case she was having any issues.  She had just been sent home from the hospital two days prior.  The night before (Wednesday), I remember commenting to Nikki about how good Owen looked, and how he had put on a fair bit of weight recently.  In fact he had caught up and surpassed Noah and was now the heaviest baby at 2lbs 1oz.  As a side note, babies, particularly preemies tend to lose 10% or more of their weight in the first week or two.  This is because the fluids they had retained in the womb typically get passed during that time.  Noah had lost five ounces to go down to 2lbs and Bella had lost a couple of ounces too.  The only one to put on weight so far was Owen.

Anyways, on my lunch I took my bike up to the local Wilson Farms to get some Gatorade for Nikki, which helps keep her hydrated during the frequent breast pumpings for milk.  I decided to do a quick couple of miles up and down McKinley Parkway because it was the first time I had the bike out this year and it was a beautiful, warm spring day.  All told, I was gone a half hour at most.  When I got back, Nikki was on the phone with the nurse, and I recall her asking the nurse something about what happens if he loses his bowel. 

Nikki handed me the phone as she was getting upset and the doctors, for whatever reason, prefer to deal with the father when something is going wrong.  The RN told me on the phone that Owen had NEC (Necrotizing Enterocolitis) and that he would be having surgery shortly.  She said we needed to come down immediately.  NEC is often lethal, particularly for babies as premature as ours.  Basically, it means that your intestines are dying and no one really knows what causes it. While Nikki was dressing, I Googled NEC and, of course, the first few hits were about stories of tragic loss, so I was feeling crushed on the inside.  I don't hide things from my wife, so I discussed some of the potential issues surrounding NEC, and then we left for the hospital.

Ironically, on the day the babies were born, the research staff asked if we would enroll our babies in a study on NEC.  All they wanted from us was permission to have their used diapers and stool samples.  We agreed, as we felt there was no harm to our babies…unlike other studies that the research staff had asked us to participate in (fodder for a future post).

When we arrived at the hospital about a half hour later, the nurse had us speak to the attending doctor, who was a bit unsure about his earlier prognosis.  He told me that they had given Owen an X-ray and that it was definitely suspicious.  Babies should not be vomiting bile, first of all, and they then informed us that Owen had vomited nearly 13cc's at around 12:30 that day.  When the doctor showed me the X-Ray he pointed to some spots that indicated some irritation in the areas surrounding his intestines.  There were a few areas that were possibly pockets of air outside the intestines, but the doctors weren't sure.  The pockets of air typically mean that the intestines have been perforated. 

Cautiously, they began treating Owen with antibiotics.  They noted that opening up a premature baby to surgery has its own inherent risks, not the least of which is opening up the possibility of further infection to internal organs.  They don't want to operate on a baby unless they are absolutely certain it is a necessity. 

So, not being sure, they decided that another X-Ray was in order and so they placed Owen on his side for about a half hour so that any pockets of air would sort of float to the top (his side facing upward) just like bubbles roll to the top of a glass of soda. They also began to suction out Owen's stomach of additional bile that was still collecting. 

I apologize for the somewhat graphic detail here, but as this is a blog, widely available on the web, it is my hope that somebody else who may find themselves in our position some day, would benefit from reading this.

I kind of lost track of time at this point.  The doctors kept taking me over to the X-Ray and ultrasounds to explain things.  I am a reasonably intelligent person and I catch on to new concepts fast, but I was a horrible Biology student in high school.  I was catching on to most of what they were talking about, but failing miserably in trying to disseminate it to my wife.

After a subsequent X-Ray came thru, the doctors saw that the suspicious area near his ribs had expanded and there were now fairly certain that it was air.  The presence of which, indicated that his small intestine was probably perforated.  The doctors told us that they didn't think he had NEC, but wouldn't know for sure until they opened Owen up.  They thought he might have what is called Sudden Intestinal Perforation (SIP), which is more common in preemies who are still on a feeding tube.  Basically, his intestines are too immature at this stage to handle passing waste.  While Nikki and I were still very worried, we felt a lot better that it didn't seem like Owen had NEC.

The surgical team was then called together to come upstairs to talk to Nikki and I about the next steps.  The lead surgeon, Dr. Caty, is someone with a great deal of experience in operating on premature babies and he immediately had a calming effect on us as he told us about the surgery and how this was rather routine for him, and not uncommon in preemies Owen's age.  He told us that they would make a two inch incision in his belly and search for the perforation.  They would the remove the performated portion of the intestine and leave the good end of the small intestine sticking out of his wound for about six weeks, while they watch it.  They would also suction out the waste that had spilled into the cavities around the intestines.  They hope to see some green fluid coming out of the intestine after a week to ten days and then they watch Owen to make sure he is putting on some weight.  After six weeks, they will reattach the small intestine to the large intestine.  It is a procedure that, if successful, the baby should have no further issues in that respect.  A second perforation is extremely rare for a baby.  The surgeon told us that babies typically do just fine as far as whether they can survive the surgery.  The biggest concern is how much of the intestine if perforated.  If it is a large enough section, there is not much that the surgeons can do for the baby.  You need your intestines to survive.

We were given a few minutes to be with Owen before the surgery and we gave him our love.  I used a breathing technique and visualization exercise to send Owen love and strength.  Basically imagining myself transferring energy to every cell in his body, in the form of love.  Yeah, I know I'm a flake.  Desperate times call for desperate measures.

It actually took longer to assemble the surgical team than to actually perform the operation.  Forty-five minutes after they put him under, the doctor came to talk to us in our private waiting room and told us that the surgery could not have gone any better and that Owen did wonderfully.  I cannot thank the staff at Children's hospital of Buffalo enough.  We are so very lucky that Owen was there, being watched by the nurses in the NICU.  They responded quickly and made all the right moves.  I hate to think what would have happened if Owen had gone to sleep that night without being treated.  I don't think he would have woken up the next morning.

So Owen is doing well.  At regular intervals, the nurses will put a vasoline-soaked gauze on his wound, to keep the tip of the small intestine moist, and then they cover it with more gauze and a diaper.  So, when you see Owen, you would not know that he just had major intestinal surgery.

While he looks like he may be in pain, his blood pressure, clotting, blood gases etc, are doing very well.  He even opened up his eyes for us for the first time today, just two days after his surgery.  I cannot tell you how happy that made me today when the little guy stared up and his Mommy and Daddy.  My parents and my Aunt Donna were also there to see this little miracle, wide-eyed (for him) as if to say to his parents, "tell me it gets better."  It does, little buddy, it does.  I promise.

- Papa Charley