Overdue Updates

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

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

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...

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

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

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

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