03.07 Update

Penelope - 1600 grams (3lbs 8.4oz)  Lydia - chunky dunk.

Our Penelope continues to be a drama queen but thankfully not as much as before.  She's still having her preemie desat/brady moments because she's still developing those necessary skills to help keep her body awake and active to remember to breath while sleeping.  She's still on oxygen but sitting more and more at room air or slightly above (21% - 25% O2) on 3L of flow(or rate).  They're still actively weaning her off of the high flow so that they can switch her back to the low flow canula and get some of that head gear our of her bed!  To recap, the reason for being on high flow is because sometimes when babies come off of the vent their lungs are used to being inflated by the pressure of the machine, once they get off the vent, without the resistance, the lungs collapse and they then have to go back on the vent to help get all the alveoli recruited again.  High flow, continues to push air through the canula keeping the pressure in her lungs up so that they stay inflated.  Weaning helps bring the pressure down, teaching and strengthening the lungs to work without the immense amount of flow keeping them inflated. The amount (or percentage) of O2 is what her body needs to actually oxygenate and that number is what we're most concerned about.  The higher the number means her lungs are not really absorbing the O2 into her blood stream well.  21% O2 (aka room air) is the lowest setting on the flow/O2 "blender" meaning that there's no added O2 being given to her, just what she would be getting without the flow, hence "room air."  That means that her lungs are oxygenating properly and she's doing the work on her own.  All that to say, the doctors believe that we'll be taking Penny home on some O2 because she's still desating some and because she hasn't been able to sit at 21% for more than just a few hours.  This all goes back to her BPD and her body having to grow out of it as time goes along.  So when you see us walking around with that cool O2 cylinder hanging from our shoulder, don't be offended when we tell you to put out your smoke.

She's recently been changed to some new vitamins and other minerals to help her body replenish things like calcium, potassium and iron that are being lost due to a combination of other meds she's had in the past and some she's still currently getting.  Her biliruben number is still teetering on the high side, not quite low enough to DC her meds for it.  A slightly concerning side affect to her bili issue is a change in her poop (oh yes... here we go again) For those that are interested, her stool consistency has been off for a week or so now, beige and clay like, not the healthy breastmilky stool that we've come to want and hope to see.  All you parents know what I'm talking about, everyone else... have a parent explain what that's supposed to look like.  This is in correlation to her liver not processing her bile right, causing the back up in to her blood stream aka the higher bili number.  Her skin tone has changed for the better as the number crawls back to the normal levels, she's got a nice flesh tone glow to her again and not that dull yellow tint anymore.  The nurses are pretty sure it's not going in the direction of c.diff because of the stool consistency so we're thankful that for right now and will stick that out of our minds.  They're still running labs to keep an eye out on what's going on with her numbers though, just in case there are other things that might begin to go awry.  An upside in the feeding area is that the other night, after requesting, I was able to PO feed her 5cc's from bottle!!  She handled it really well and so we're hoping that the order will stick for her to be able to have some good bottle feeding time, in small bits of course!

She's still receiving her IV antibiotics until her tests come back negative from the lab, which hopefully will be sometime this week.  It still was only showing staph aureas and nothing else.  The day that she had to get her IV in, the nurse and docs had to try over 7 times to get a good IV site because her veins kept blowing due to her jaundice.  Since then she's knocked out her IV two times and our nurse tonight believes that she's doing it just for her because she's knocked them out just the nights she's been there.  So the sooner this test comes back negative the sooner that IV port can come out and she won't have to get stuck as much!!  Her spot on her arm is progressively getting better and thankfully it didn't refill or pop up anything else around the area.

Penny's still scheduled for surgery on her bilateral inguinal hernias but closer to discharge time.  It had been originally thought that it would be after she hit a certain weight, which she has reached now, but the team has decided that they will continue waiting until she absolutely needs to have it as to keep her off the ventilator longer!  We DEFINITELY don't want her back on the vent if she doesn't have to be!

I think that's it for Queen Penelope... as for Sister Lydia, she's continuing on her growth as an at-home preemie!  She's been great to stay on schedule of eating, pooping and sleeping but we have noticed that since she's geting bigger, her schedule is starting to get off a bit.  We switched her to part formula this week, for dietary reasons, which has allowed her to start gaining more weight but has also caused her to be a bit more, well, stubborn about some things.  We're hoping that her little stomach will handle it all ok and not cause any issues.  We'll be talking more with the dietician to see what we need to do change up her meal plans and talking more with our pediatrician to see what the next goals she'll be needing to hit when she finally gets to term.  Hard to believe that they are a week away from being term babies!!  So crazy!  It has been a lot of fun to have her home and to dress her up all the time in fun new little clothes.  Still so hard to believe that this little life is now in our home and is ours FOREVER! ha!  It truly is a blessing and we can't wait to get Penny here as well.  That's going to be another game changer!  whew!

It definitely should be my turn to take over this writing business since, emotionally, I have the easier load. My dear wife has been under more emotional turmoil than I think I've ever seen and I truthfully don't know how to help her through this except to continue telling her that she's doing wonderfully at what she's doing right now.  The expectations set on her are much higher than most moms/parents would normally have to deal with because our timeline for "typical" growth patterns for these girls are all out of wack.  A lot of things that we are having to choose to do and stick to our guns about are going to be tough to explain to folks because we have preemie babies.  Like I've said before, it is a strange elite club to be a parent of ultra preemies and unless you've gone through the experience, people will not understand that our babies don't follow the same plan as term babies, they're hybrids of sorts.  She posted the other day and had expressed to me earlier that the "mommy guilt" has been starting to set in, the feeling like she's not able to take care of them in certain areas, or the "if only-ies" are haunting her along with the "what if's" clawing at her feet.  It's been tough for her to shake these demons off, letting the light of these babies' life shine through as the most important thing.  Also, the pull to be at the hospital with Penelope or at home with Lydia is starting to wear on us, causing our hearts to ache more and more.  We've been taking turns going to the hospital to spend a few hours with Penny which is a drastic change from being there 24/7 with her.  It wears at our hearts but even more so on Bethany's.  And so, these are our prayer requests.

Intercession Requests

• Penelope to continue tolerating feeds, processing her food, and continue learning the suck swallow breathe technique.
• Penelope to continue to stay healthy and to not get any more infections!
• Penelope's bili numbers to continue coming down to a healthy, normal number
• Penelope's liver to be ok and not over stressed
• Lydia to handle formula ok and not have too many "passing" issues.
• Bethany's mental/emotional well being.
• Bethany to rest well during the few hours that she does get to sleep so that her body doesn't stress out and decrease her milk supply anymore.
• Spiritual stability as we struggle with being away from our church body.
• To handle this unnatural pull between hospital and home, for us to trust that she is feeling our love and care through the short amount of time that we get to spend with her.  

It's still mind boggling to us the people that we still meet or contact us about joining us on this journey. We're humbled that God would use us to share His story of love to so many people and we continue to pray that Christ would be our guiding light and our beacon of hope and direction as we continue wading the waters of uncertainty.

And now to leave with you with a few snapshots of the miracles that you all pray for.

Daddy and Lydia posing for a picture

Lydia gets upgraded to a new bed!  This is a radiant warmer.

She's keeping up her temp so she gets to wear clothes!

One of a kind... (x2)

Shhh... I'm resting so i can stay warm!

Daddy needed some kangaroo time

"I pledge allegiance, to my paci" 

"When i grow up, I'm going to be a librarian..."

Streeetcching out.

"Does this footie make me look fat?"

"why, oh why!"

"whew! hard day's work."

"i mean, seriously can't we get those numbers to work out?"

Penelope getting some CPT (chest physical therapy) done to help clear some junk from her lungs

free massages?  yes, please!

don't look

I so gotcha...

Swing low sweet boppy chair...

Lydia snuggling with her Penny Bunny

Bethany made the panadas for their mobile.

we couldn't find the mobile parts so she took a brand new one apart and made one herself!

Guardian Panadas

Penelope's worrisome spot

"oh man! I thought the party was at your house!"

Wide eyed and wonderful.

"get that camera outta my face."

"uhh.. i didn't order the lamb chops.."

"seriously, you're crowding my personal space."

Lydi lamb snuggling with Penny

Holding on to mommy.

Some Papaw time

"some assembly required..."

"If i only had some wheels..."

Trying to be a Nobles.

"Step One... find step two."

After a half hour of work... this appeared. Thankful for Mah Mah and Yeh Yeh 

"Penny's new palace"

Penny being shy.

3.3 Update

Penny - 1500 g!!! (that's 3 lbs 5 oz)  Lydia - bigger every second

Well I heard somewhere that the prayers of a righteous man avails much, so I'd like to know which one of you is righteous...because our prayers are being answered!

Jonathan wrote yesterday about Penny's scary spot on her arm and her symptoms that seemed to point to infection. They drew plenty of labs to run plenty of tests and  so far (knocking on Jonathan's noggin) they are showing nothing of concern.  The culture from the spot on her arm came back as having staph aureus which is normal skin bacteria and after it was cleaned out to be cultured, it has been looking better.  The good news is that she won't get her first big pimple on her forehead on her first date.  She's still having some trouble with her breathing and keeping her sats up when she's being messed with.  She's also been unable to take a bottle again because of her breathing.  With her increased feedings (going in her NG tube) she's been gaining weight though so that is excellent news.  I can't wait to get there this afternoon and see if I can tell that she's gotten bigger!

Lydia was snoozing away in the Moby wrap while I typed but now she's getting hungry and letting me know.  She and I had a photoshoot this morning.  She's wearing some newborn sized clothes now and most of the preemie outfits we have! Can you believe it?!?!  She's still on the NICU 3 hr feeding schedule and everything else is going smoothly.  It just fills my heart with joy to be able to do the things for her that a mother should.  It also fills my heart with gratitude when my mom, Jonathan's mom, or Jonathan do them so I can get a little extra sleep!  We have been blessed beyond measure and we're proud of it...mostly because we did absolutely nothing to earn it!

Specific Prayer

• Penelope's sweet little lungs to mature, heal, and work properly
• Penelope's first pimple to go away soon (it's embarrassing for her, you know)
• Penelope to continue to gain weight
• Lydia to continue doing well, gain weight, and grow!

This is from a week or so ago but I just thought it was adorable...Lydia with her MahMah

 Lydia and YehYeh...she's working on getting him wrapped around her finger already

 Lydia and her Nana

 Lydia sporting a fancy new (only slightly big on her for the moment) outfit. She has the matching blanket too...and the hat...and the bib...she's just too cool for me. None of my clothes match!

Lydia and Uncle Matt

 Lydia and Aunt Sam

 Lydia Snoozin

 This is Penny-Bunny...she hangs out with Lydia when Penny is away

 This is Lydi-Lamb. She hangs out with Penny while Lydia is away

 Penny snoozin too

 A little bit of Penny's eyes..even if she looks a bit afraid of her armboard

 Now the armboard is hilarious!

L-diddy rockin the headband

 "oh I know I'm cute, you don't have to tell me"

03.02 Penny Update

Hello all,

     This is Jonathan writing for Bethany because she's currently at LeBonheur with Penelope.  There has been another set back for us today with her so I thought I'd write for Bethany so you can start praying for her.  Last night, our nurse found a small pimple looking spot on her forearm near the elbow where an IV might go in.  She's never had an IV there so it's not something happening because of that so the nurse covered it and informed the doctor what was going on.  This morning/afternoon she started desat-ing more and looking more pale, presenting signs of a possible infection/sepsis so they decided to start IV antibiotics.  This is obviously a step in the wrong direction.  They aren't sure what is going on so they're culturing the site and beginning the process of figuring out what it is that's happening.  It's hard to see/hear that she's yet again going through another infection, especially so much later in the game since she's had no open ports into her body for almost two weeks. 

There was a concern two nights ago that she might be presenting signs of colstridium difficile (c-diff) which is an infection of the intestines but there weren't enough markers yet to completely confirm it.  C-Diff occurs when the normal bacteria that helps the body digest is killed off because of prolonged exposure to antibiotics.  Ironic, yes that the thing that she needs to help rid her of an infection also can cause her to have another infection.  If she were to have this then she would half to be put in an isolate again and anytime we would visit we would have to don the yellow space suits to visit her.  I'm sure that this will be addressed and looked at as she's getting a full lab run today as well as whatever new tests might be added on. 

Our hopes are that this has been caught early, whatever it might be and that this new round of antibiotics won't cause any more issues and that she will fight off yet again another infection.

Intercession Requests

• Penny to rest, reserve her strength and to fight off this infection, if it is that.
• For the antibiotics to not cause more issues than help. (C-Diff.)
• The docs to find out what might be going on and a plan to be developed to help her overcome the current situation

Thank you all for your continued prayers for our little ones. 

Jonathan

2.28 Update

By Bethany Chu from iamknittogether.blogspot.com

Penelope - 1420 (woohoo! she gained! that's 3 lbs 2 oz)  Lydia - bigger

Today was a pretty good day all around!  I got to spend the morning with Penelope at Lebonheur while Mom and Jonathan worked their tails off around the house.  Seemed like a fair deal to me!  Penny is doing pretty well. She's been having trouble gaining weight, which could also be attributed to the fact that her body has been working extra hard to keep her temperature up whereas before it was done for her by the bed.  If she's unable to gain, she'll have to go back in to an incubator type bed so that it can help her with her temp so she can focus on growing.  Growing is the goal here, just in case you've not been reading carefully.  Her bilirubin numbers are sloooowly coming down, but coming down none the less. She's still having a tough time with her rapid breathing but according to her doctor, this is normal for her BPD (bronchopulmonary displasia - or lung disease because of prematurity) and should improve with time, growth, and maturity.  In fact she said that all of the issues our sweet Penny is having are the things that are not uncommon and will resolve with time.  That helped me to take a sigh of relief for sure!  While I was visiting, Penny gave me the gift of lots of open eye time.  We had a staring contest.  I won, but I've been playing for longer than she has, so it's only natural.   It really was a precious time with her.  Jonathan and I have been taking turns every other day visiting her, but I'm not sure if that is going to work out.  I think I may need everyday.  We'll see.

For Lydia, she's still doing very well.  Tonight she is sleeping in her "I "heart" mommy" sleeper....it's a newborn size.  Yup, she's been stretching the footies out of her footie pajamas the last couple of days so she graduated tonight.  The funny thing about baby clothes is that they're not all a uniform size....so some preemie things are too big and some are too tiny (which works out for Penny).  But the truth of the matter is, that tag says newborn and that's a big deal!  She's been doing pretty well with her eating, still choking occasionally when she's too distracted by other, shall we say, rumblies in her tumbly, or in her diaper is the case usually is.  She's also been keeping us laughing with all of her facial expressions and grunts.  She has one sound in particular that she makes before or after eating time that sounds like a little pig.  It's like she knows it would be funny. And she's right.

After a morning away from Lydia for my visit with Penny, it was hard for me to pull myself away again, but it was for a good cause.  Tonight I went to my first "Mother's of Multiples" meeting.  Going in I had no idea what to expect.  I was a little worried that it would be all designer clothes wearing, perfect manicure having, spending more money on their hair every 6 weeks than I do on clothes for an entire year kind of women.  And here I was with my maternity clothes wearing, dirty haired, spit-up smelling self just looking to find someone who'd been down this road before. When I pulled up I had to laugh, because in the parking lot was a row of van after van.  I drove the Prius just to be different.  All my fears were abated when I walked in to find a small group of women who looked alot more like me than I thought.  Most of them looked like they had showered more recently than I, but still, they understood.  There was a speaker on the topic of saving money with coupons, which is something I've always wanted to do but never had reason to.  So now that I have reason to, I took copious notes.  Then afterwards I was able to talk to a few moms whose roads have been similar to mine and found great comfort in what they said.  In fact, one of them had met my mom in the baby aisle of Target just after the girls were born, and another is in a Bible study that's been praying for us all along.  There are no accidents.  It was well timed and just what I needed to realize that we can do this.  Another sigh of relief.

Ok...Specific Prayer

• Penelope to grow grow grow!
• All of these things she's battling to go away when she's growing growing growing
• Lydia to continue on her path to real baby-hood
• Rest for Jonathan, our moms, and me as we do the round the clock feedings

 Our posing Penny

 Lydia's already working on her smug expressions 

 I think she's almost done cooking now...her hair is turning darker

 Our first visit with Dr. Stacey

 I don't think he likes her any (this is our Pastor Larry Ray who's love both girls is irrefutable!)

On our first fresh air excursion...don't worry it was very warm and she was in her Moby Wrap

2.26

By Bethany Chu from iamknittogether.blogspot.com

Things we've learned in the past few days.

1. Mylicon is a beautiful thing (baby gas relief drops)
2. Sleep is not necessary
3. Lydia looooves her Boppy seat with the heartbeat sound
4. Lydia loooooves to wiggle her arms out of swaddling
5. Penelope looks adorable in clothes
6. Penelope loooooves to be swaddled (therefore covering up the clothes..but what she wants she gets right now)
7. God still has strength left to give us when we run out

We've been taking turns going to see Penelope and she looks bigger to us every time even though she's still either maintaining or losing weight the past few days (run on sentence? yes. do i care? no.).  Her tachypnea has gotten better, but she was put back on the high flow oxygen because she kept having desating issues.  When the night shift nurse came on duty she suctioned out a HUUUGE..uh...shall we say...mucus extravaganticus...and her sats got better. She's still on the high flow but I fully expect her to be off of it soon. Mostly because I don't think she needed it in the first place.  The BIG news of the day is that Penny is destined for a big girl bed! She's not in one yet, but she's out of her heated giraffe bed and is holding her temperature nicely with clothes on and swaddled up.  I'm so excited!  It's a definite positive move.  Now she just has to get her breathing together, and start taking her bottles again.  These are to big hurdles, but big hurdles are nothing to our little Penelope and her big God.

Lydia continues to adjust well to being at home.  Jonathan and I are having so much fun learning her every grunt and grimace.  Some of them are important and some of them are just funny.  She' loves her mobile and (as mentioned above) her Boppy papazan chair that has a heartbeat sound.  She slept like a rock in it today.  She didn't sleep well in our quiet room for the first few nights.  I guess it was just too quiet.  We just can't wait to have both of our girls home so that we can get settled into the chaos that is our new life.  As a mother of twins told me today, the order is baby, bed, then bath.  So for me, ponytails are totally in this season! 

On a completely different note, and speaking of notes, I'm trying my hardest to eek in a few thank you notes whenever I can.  If you've given something for the girls, cooked something, done something, or just been awesome, and haven't received a thank you note, please know that that is in no way indicative of the level of our gratitude for you.  There's a good chance you'll get a thank you note...and there's a good chance you won't.   Please don't take offense either way.  What a wonderful blessing it is to have TOO MANY thank you notes to write!

Ok...Jonathan has Lydia, one of our favorite nurses has Penny, and I am going to bed.

Specific Prayer

• Penelope's breathing to improve and for her to be off of oxygen before we know it!
• Penelope to do well with keeping her temp up (as her daddy says....she needs to be a hottie)
• Penelope to get stronger and to gain weight at a faster rate
• Lydia to sleep, eat, and grow well
• Lydia to be protected from any illnesses
• Jonathan and me (and our moms who have tirelessly been helping us) to have supernaturally restorative rest

02.24 Update

Well, maybe it's clear by our lack of update, but things have been a bit busier with little miss Lydibug home.  It's a good kind of busy though.  Lydia is adjusting wonderfully to life in the real world.  We've had doctor's appointments both mornings she's been home.  Eye doctor yesterday and pediatrician today. Both appointments went well, and I can't explain the pride I had walking into a public place with her in the carseat.  I felt like "hey everybody!  she's here!  aren't you excited?!?!"...but no one seemed quite as excited as I thought they would be. Oh well, their loss.  Her eyes are actually improving (zone 3 from zone 2..for those of you who get what that means) and she weighted 5 lbs even today!  She's waking up every 3 hours hungry and eating really well, burping really well, and pooping really well. We're so proud.  It's so much more natural feeling than I expected.  It's like she's where she belongs. Because she is.

Penny is holding steady. Literally.  She's still tachypnic and has been losing and gaining weight to the point that she's just maintaining (1400 g today).  She looked bigger to me when I went to see her today,  but her weight is the same.  She's really starting to look more like Lydia everyday.  Because of her tachypnea she can't take her bottle feedings.  They've done an x-ray so hopefully that will shed some light (get it? rays...light) on the cause of the breathing issues.  She also was seen by the surgical team and they've decided that her two inguinal hernias will need surgery before she goes home. They anticipate her growing enough in the few weeks left that she'll be able to handle the surgery. So, rather than Pedi-flight her to Germantown and then back to Lebonheur, she'll stay at Lebonheur until she comes home.  This will be a little farther away from us, but it won't make it any easier to leave Lydia even if it is a slightly shorter drive to Germantown.  Plus, because of our extended time there, we've made such great relationships with the staff (everybody from doctors to maintenance).  So much so that they stop in and check on, dote on, and care for Penelope even when we're not there. What a blessing. What a comfort.

I could write pages and pages about all the emotions we've been feeling the past few days.  It still wouldn't cover it.  The main emotion is joy but it's weighed down with the feeling of being torn.  Once again, every moment of bliss with Lydia makes me wish we could do the same with Penelope.  And one day we will.  But today, we took a walk. Just Jonathan, Eliza, Me, and Lydia.  We all missed Penny.  Maybe we should look at it as a chance to have one on one time with Lydia and also a time to look forward to a time with Penny soon.  The truth is, it will be no time before we're all together and we'll be craving alone time with each of them.  It's all about perspective.  Jonathan went to see Penny yesterday and had a few hours of dedicated time with her.  I got to go today and do the same.  So I guess that's the silver lining.  We are focused on each girl when we are with them. Which in the end is good for everybody.

Specific Prayer

• Penelope's hernias to not need surgery until she's big enough to handle it
• Penelope to start to gain weight and turn the next corner and get home soon
• Lydia to be safe from germs that would be harmful for her
• Lydia to continue to grow and thrive
• Jonathan and me to handle everything emotionally

Just a few pictures of Penny and her favorite doctors.

 Penny trying to look pitiful

 Dr Goodwin-Samson

Dr Ravi

2.22 Lydia's Home!!!

One down one to go!!!!

Our sweet Lydia got to come home today!!  It's such a bittersweet feeling to be overjoyed to have her where she's supposed to be and at the same time being sad that Penny can't be here to enjoy it with us.  We know that she's in the best of care and that she'll be home before we know it...but it doesn't keep us from wishing we could all be together sooner. 

Penelope's ultrasound on her head and spine today both were normal.  Oddly enough, when Lydia's diaper was being changed last night at the hospital we noticed she had a very similar dimple at the base of her spine but hers was mostly covered up with her cute little booty!  Our favorite Dr diagnosed it as "funny booty crack" and said there was no known treatment.  So at least Lydia has a strange diagnosis too!

And to add to the hilarity of it all...once we got Lydia home and settled, we were washing some dishes in the sink and discovered that our disposal and all of the food in it was backing up behind our washing machine...and smelling like old pork.  Yum.  And we thought the dirty diapers were smelly!!!  Jonathan jumped into action with my lovely mom at his side and they are working on it now...but I just think it's funny.  What timing!

On a more serious note, I just want to stop and praise the Lord for all of the miracles that He has done to get us to this point.  They are countless.  In all of this commotion of re-learning this new phase of parenthood, I don't want to forget how far we've come and how grateful we are and rightfully should be for every single breath our girls have.  Thank you so much for praying with us and journeying with us so far.  Please please don't stop now!

 "I'm ready for my close up!"

 some of our fantastic friends from Lebonheur

 part of the nutrition team (Ruth (the world's best lactation consultant) is on the far left)

 "uh...guys....what's going on?"

 Ms. Jane...PCC extraordinaire

 One last visit with her sister before we left

 Daddy's view on the way home

 Lydia was impressed with the ride home - her second trip down Poplar Ave

 Nana was here to welcome us home

 3/4

 Eliza was very excited to meet her little sister...Lydia was only mildly interested

Lydia and her Aunt Shelli...the first of many snuggle times for them