21 March 2011

Sister Sister

What a precious precious moment we were blessed with.  One of our first family hang out times complete with simultaneous crying, dirty diapers, and lots of hugs and kisses.  There are just no words to describe how this felt.  After months of being separated from our two girls, finally having us all together was just bliss.

19 March 2011

03.19 Update

(by Bethany from http://iamknittogether.blogspot.com)
Well the best laid plans of mice and ophthalmologists...

Penny didn't have her procedure yesterday as we had thought, but it may be for the best after all.  When the retina team didn't come yesterday we had the nurse contact the ophthalmologist who was very helpful in making sure everything was taken care of.  The retinal surgery fellow came to see Penny this morning and called to explain the procedure in great detail and also to confirm that there would be no danger in waiting until Monday.  So that's the plan.  At 830 Monday morning I'll be there to sign the consent form and be there when they're finished to comfort my sweet Penny.  The nurse showed me the needle they would be using for the shot and it was the size of one strand of hair. Tiniest thing ever.

Jonathan has gone now for this tour.  It was a tough trip to the airport but the Lord has been faithful to give us his strength thus far and He'll continue to do so I'm sure.  Thanks so much for your prayers and encouragement.  Please don't stop!

Specific Prayer

  • Penny's eyes to do well until Monday and for the procedure to be successful
  • Lydia to continue to do well
  • Jonathan and me as we adjust

18 March 2011

3.18 Update

By Bethany Chu from iamknittogether.blogspot.com

Penelope - 1940 g (4 lbs 4 oz) Lydia - 8 lbs!

Ooooook. It's past time for an update and I'm sorry for the delay. Things got a little crazy with my neck situation, Jonathan getting ready to leave, and life in general. The good news is that there is good news (and some bad, but mostly good.)

Lydia is gaining weight like a champ, learning to sleep 4 hour stretches at night, increasing her food, and becoming more alert. She's starting to follow things with her eyes and definitely looks directly at us when we talk to her. Precious. Her gas seems to be closer to a normal level since we've been using Dr Browns bottles and we're getting used to washing all of the extra parts! She had an eye appointment and her eyes are steadily maturing. She'll be getting her second Synagis shot this week to protect her from RSV and once the season is over she'll be able to be out and about more! Can't wait to show her off!

Penelope has had many positive steps too. She started taking feeds from a bottle once a day, then to twice a day, and last night she took her entire 30 cc (1 oz) feeding from a bottle. It must have been her going away present for her daddy because it meant the world to him to give her her first full feeding. She proved that she really knows what she's doing by repeating her performance today! I'm almost hesitant to say this but it seems she's turning a corner with her growth. She's also started to gain weight steadily for the last week. She's gaining an ounce or more most days and hasn't been losing. It's so exciting to call in the middle of the night when we're up feeding Lydia to see if they've weight Penny yet. It reminds me of when Jonathan and I were first dating and I would anxiously await a call or an email. That feeling of calling to check on her is similar to the feeling of checking my email hoping for something good from him. Silly? Yes. But true. Her oxygen flow is being weaned VERY slowly in order to give her the best chance at success with her bottle feedings and it seems to be working for her. Her hernia surgery, which we're all a little nervous about, will be done when the surgical department feels that she's big enough. That tends to be about 2.5-3 kg which is about 5.5-6.5 lbs. She'll have to be reintubated for the surgery so the longer it takes the better chance her lungs have a healing and getting stronger. Our little fighter has just a few more battles to win.

Speaking of battle for Penelope, her bad news is nothing catastrophic but it is a concern for us and a matter of immediate prayer. Last week the ophthalmologist saw the beginning stages of Retinopathy of Prematurity (ROP) which basically is the growth of extra blood vessels in the eye that if left untreated could end up detaching the retina and causing blindness. It's a common thing for preemies and they've come a long way in the treatment of it and the study of the cause of it. They're still not sure exactly what causes it but believe in is in some way related to over exposure of oxygen. Our sweet Penny has stage 2 ROP in her left eye and stage 3 in her right. What used to require hours of laser surgery and total sedation involving intubation, now can be fixed with a single shot per eye in just a few minutes. Because Penny's eyes are worsening so quickly, the retinal team has been called in today to do the shot in her right eye. If they get there today and her left eye appears to be in stage 3 (the qualifying stage for the shot) then they will go ahead and do the shot on the left eye as well. Now I know that a shot in the eye makes most people cringe (me included) but she's been having weekly eye exams involving numbing drops and dilating drops as well as the doctor using the eye speculum to keep her lids open. This procedure will be no more traumatic than that. She won't be happy about it, but it sure beats having to be on the ventilator again! So this is a prayer request but also a praise for what the Lord has done through the development of medical technology. Please pray for Penny right now that the medicine does it's job quickly and without any complications. She doesn't need any more complications!

Now, about the big baby in the family. Apparently my body decided to be quite clear about the level of stress it has been under and how it feels about that. It tried to warn me with the eye twitch and the discombobulation, the Lord even provided me with the means to manage the stress with medication, but nooooo, I was stubborn. I'm listening now! The muscle where my neck meets my shoulder has taken on the position of slowing me down. It began to spasm on Sunday and didn't become close to fully functional again until yesterday. Thanks to multiple visits from my friend the massage therapist, and a few different kinds of muscle relaxers and pain medications, we found our way through. But it wasn't pretty. We had to call in the help of some special "troops" and appreciate them more than they could ever know! It really taught us alot about depending on others and trusting that they are the hands and feet of God helping us in our time of trouble. It sounds a little over dramatic, but it's a really humbling experience to call someone to come to your rescue. It's even more humbling to have to ask them to help you put your shirt on, scratch your face, or get out of the bed...but that's a story for another day.

With all of this going on, it became glaringly obvious to me that something had to give or I wasn't going to be able to keep going. There are very few things that I have a choice about at this point in my life, and the choice to continue pumping breast milk for the girls is one that I have taken great joy in. It was the way that I was able to mother them when I wasn't allowed to do anything else. It's the most amazing gift that the Lord gives to provide exactly the nutrition that a baby needs (and at just the right price!). It was a very difficult decision for me to choose to stop doing this, but it is one that I had to make. The physical demands, the emotional toll it had (when I was in the other room pumping alone while other people got to hold and feed my baby), and the amount of time that it was taking away from the rest of the demands of life just became too much. So, farewell little pumping machine. See ya sucker! (hehe...get it?)

Finally, in regard to the decision about the antidepressants, we've decided that it's best for our family to use the medications that the Lord has allowed people to create in order to function properly. My mom made a great point that really helped me come to grips with it. If the doctor had told me that I had hypertension and that I needed blood pressure medication, I wouldn't hesitate for a moment to take it to help my body function. This is the same thing. My body needs some help for this season to be working at it's best so that I can be the best for my family. So, I'll be taking the pills, and making passing jokes about people not making me mad because I'm a little crazy. It'll be fun.

And last but not least, this is Jonathan's last full day at home before leaving for 7 weeks. Needless to say this is going to be exceptionally difficult for all of us and we covet your prayers greatly. He'll be on a secular tour which means that the environments he'll be in may not be the most positive, and the tour schedule itself will be pretty grueling. Not to mention that Penny will be having her hernia surgery, probably coming home, and both girls will grow and change so much in almost 2 months! Fortunately we have all of the video chatting available to us that we can afford and plan to make sure they hear their daddy's voice as often as possible. It's just going to be tough no matter what....but he's not going to war and he is coming home and he loves us all very much...so it could be much much worse.

Specific Prayer

* Penelope's eye treatment today to go smoothly and without complication
* Penelope's left eye to go ahead and qualify for treatment so she doesn't have to go through this again
* PRAISE for Penelope's weight gain
* PRAISE for Penelope's bottle feedings
* Our little family as we deal with Jonathan's being away
* Lydia's continued growth and development
* Bethany's crazy body

I'm sorry that this was so long and I didn't proof read it so if there's a grammatical error or it doesn't make sense...just use your imagination :) We love you all so very much and will appreciate your prayers until the day we die!

14 March 2011

Photo Bomb 3.13

I figure since my range of motion is limited to putting my hands straight out in front of me, and I can't hold my baby, at least I have some time now to post some pictures of my sweet girls to make myself and you all smile.  Silver lining people...it's all about the silver lining!

Mrs Amber visiting her little buddy
Penelope playing peep-eye

Penelope's snuggle time with MahMah

Penny the Poser

Uncle Matt getting his baby fix with Lydia

Aunt Sam slaving away while Uncle Matt held Lydia...typical

Aunt Shelli feeding Lydia

Penelope's foot got grounded for kicking at her daddy

Penny was having a talk with her bear in sheep's clothing while her bodyguard Panda Pal watches over her and her Lydi-Lamb whispers in her ear....think she's got enough stuffed animals?

reminding Eliza that she'll always be our favorite "dog"-ter

Mommy and Lydi

Daddy and Lydi

I mean really....how cute is this

there's just too much cuteness

Sweet Penny being coy....pretty girl...still working on her bilirubin

Penny wrapping herself around daddy's finger...it's mutual

And last but not least...Lydia's ballerina outfit. And I said I didn't want lots of pink clothes...who was I kidding?!?!

03.13 Update

(by Bethany from http://iamknittogether.blogspot.com)

Well God's timing is hilarious to me sometimes. This morning my sweet sister offered to watch Lydia so that Jonathan and I could go to church together before he's out of town for forever. My mom went home for this week so that Jonathan and I could try this parenting thing just the two of us, so we were grateful for the extra help.  Just before the service started I got a shooting pain in my neck (not Jonathan..this was an actual pain) which I recognized as some residual weak muscle from a car accident I had a few years ago.  This has happened once before where the muscle that controls the right side of my upper body just goes on strike and I can't raise my arms, turn my head, lean back, lean forward, swallow too hard...you get the picture...without the muscle seizing up and causing sharp pains. 

As you can imagine this makes taking care of a baby impossible.  And now Jonathan has 2 babies at home and one at the hospital.  Except I'm probably more of a toddler.  I have to walk very slowly and cautiously and I keep trying to do things that I shouldn't do so that he has to make sure I don't hurt myself trying to be independent.  It's a comical scene but not an ideal one for the situation we're in.

Normally I would take muscle relaxers and rest but because I'm breastfeeding that complicates taking medicines.  The whole breastfeeding is another issue in itself because I can't physically feed Lydia or even pump without pain.  The question of when to stop the pumping has been hanging over our heads for a few weeks now as we try to find balance,and I'm afraid this may end up being the deciding factor.  See how hilarious God is sometimes?  A dear friend who is a massage therapist is coming over tomorrow afternoon sometime to see if she can help the muscle relax, but until then Jonathan is going to need a LOT of extra prayer for stamina, patience, and supernatural rest.

OK, enough about the big baby (that's me).  The girls are both doing very well.  Penny gained up to 1710g which is 3 lbs 12 oz.  She took 15 ccs (that's right...half of her feeding) from Jonathan from a bottle last night which is HUGE!  She's still a little tachypnic (fast breathing because of her lung disease) but seems to be slowly improving there as well.  It's just a longer road for her.  There is a big decision to be made about when to do her hernia surgery.  When she has this surgery she'll have to be intubated again which could mean more damage to her little lungs.  We had hoped that we could wait for a few months for her lungs to develop before having to put her through being intubated again, but these hernias are very very large and it's not regular practice for the hospital to send babies home with such bad hernias for fear of complications.  Also the doctor said that a few months wouldn't make very much of a difference in her lung health to outweigh the risks of taking her home and then having to put her back in the Pediatric ICU instead of the Neonatal ICU (where all of her favorite nurses and doctors are who know her and her situations).  Anyway, your prayers are coveted here as Jonathan and I make yet another difficult medical parenting decision. 

Lydia is still thriving.  She's starting to wake up sooner and hungrier so I anticipate a growth spurt soon.  She's still weighing in around 6 and a half pounds.  We are having a little bit of difficulty with gas and some painful little digestion issues, but nothing out of the ordinary or excessive for a newborn (even if she is almost 3 months old).

Specific Prayer

  • My neck to heal miraculously quickly so I can get back to being a mama
  • Jonathan to have supernatural strength (even more than his superdad/superhubby abilities)
  • Penelope's lungs to heal and her breathing to improve
  • Penelope's bottle feeding attempts to continue to improve without any setbacks
  • Penelope's hernia surgery decision
  • Lydia's little gassy self
P.S. I know we've been delinquent with the pictures...they're coming soon..I promise

08 March 2011

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.