The greatest of grand parents

Pretty Face Day 2 unedited

Today was very slow but very sweet.  Penny was on her paralytics until 1 and they didn't wear off until about 4.  I did a lot of knitting, talked to a lot of medical professionals, and stared at my smallest daughter.  She's really beautiful. Even with a swollen face, an "elvis lip" from the intubation tube, and her new necklace. She's beautiful.  She opened her eyes just long enough for me to take a little video.  They will start weaning her sedatives more aggressively tomorrow and the more she wakes up the more they'll be able to wean her vent and that's what we want!  We're hopeful that she'll be able to.

 "I tried to say no to the drugs mommy, I promise!"

 Mrs. Sam taking care of Penny

 First snuggle sans sticky cheeks

The first time all day her lips were almost touching. She's so used to that tube that she keeps looking for it.  Slightly more cute than sad.

All in a day's work unedited

Well, look who's back already! Those doc's are fast!

Go figure... She was already squirming even on the paralytic and sedatives. What a fighter, the reason why she's still with us.
Thank you, Jesus for a smooth procedure. Be with us through this next journey of learning and growing.

And guess who got to see her before he left!



A semi family picture :)

In Surgery unedited

They just came to get Penny a lot earlier than we thought! Our dear friend lily is her anesthesiologist and brought her a beautiful swan to watch
over her. It was a sweet moment to look at her one last time with tape on her face! I'll blog again when I hear anything!

Big Day unedited

This is not the first or the last "big day" we have had or will have.  But today it seems big.  I guess that's par for the course.  Of course this is not what we were hoping to have to do for Penny, and of course I'm not looking forward to all of the care and complications it brings with it, but I am excited about a few things and that's what I want to focus on.

This afternoon I will see Penny's face unobstructed! No tape, no oxygen tubing, no cpap machine, no NOTHING (I know. double negative. forgive me).  I'm just beside myself excited about that.  After a few days of being on paralytics (to make sure everything is healing up right before she moves around) Penny will start the process of weaning off of all of her sedation and will hopefully be more herself than she's ever been!  When she was awake before she was working so hard to breath that I don't think we were really seeing the fullness of who she is.  I'm excited to get to know her.  We'll actually be able to pick her up whenever we want!  I'm excited that once she's stable and moved up to the intermediate care floor, Lydia can go see her as often as she'd like! This may be what I'm most excited about!  I can't wait to watch them see eachother again.  Penny will also get to start physical therapy, occupational therapy, speech therapy and every other kind we can think of to help her catch up developmentally.  I can not wait to see her little spunky self figure things out.   So I'd say that's a good list of silver lining.

To answer a few questions people have been wondering about.  Yes, it's temporary.  As soon as her lungs have grown enough to handle breathing on their own, the trach can come out and the stoma (the hole) will be sewn up.  Because she's so small and we expect it to come out within the next few years, the scare will most likely be very small.  She will also have her g-tube scar, PDA ligation, and hernia scars although the hernia ones are hard to see even now...plus she better not be showing anyone those hernia scars! I'm already working on the story Penny can tell people about her days as a young ninja in training and how she had a run in with a tiger that left a few scars.  It goes right along with my story to explain my stretchmarks (thanks girls).

Ok, back to the questions.  She'll have to be in the hospital for a little while to determine if she'll need the home ventilator or just be able to do oxygen.  If she needs the vent she'll have to be 6 kg which is around 13 lbs and that might take a while.  If it's just the oxygen it'll be a much shorter time.  I start back to work in less than a month so, yes, this does make childcare more difficult.  More on that later.

It's time to get up to the hospital and spend some time with her.  I'll be updating with pictures from my phone as the day goes on.  Thank you so much for your prayers today and in the following days as we face this new piece of the road.

Specific Prayer

• a complication free surgery
• quick recover for Penny
• peace and trust in the Lord for us
• safe travels for Jonathan (he's leaving for about 10 days)
• sweet time with Lydia when we get to be home
• patience for the wonderful people keeping her so we can be with Penny
• PRAISE PRAISE PRAISE for Jonathan Frizzell and his family.  He's getting to go home today (and I don't mean with Jesus!)  The surgery was successful, the shunt is working, and if it stops they believe they could fix it!  His mom came to visit yesterday and just looked so joyful.  A little nervous to be taking him home but so joyful and grateful for the miracle God performed.  Thank you for your prayers for them and I'll update as I get any new information.

Good Moooood unedited

Lydia's in a good moooood outfit

Penny's in a medically assisted good mood

And these two just entered into wedded bliss. They were using Lydia to see what their happy little family might look like in a few years. Pretty adorable huh?!

7-1 unedited

Life has been trucking along and all of a sudden it's the first of July!  I can't believe time is flying by so quickly.  Does that mean we're having fun?!  I think that makes it official.

It's been a tense couple of days as we went back and forth with the decision about Penelope's respiratory future.  We have decided that in order for her to get back to participating in life and for her to be able to develop as she should, she will be getting a tracheostomy. This will allow her to come off of the sedation she's been on for almost 3 weeks now and also will get that terribly uncomfortable tube out of her throat and my favorite part is that it will also get rid of the tape on her face!!!  After she heals up from her surgery (it's scheduled for Wednesday) then she should be able to get right back to regular unsedated life...just with a fancy new necklace.  With all of the physical/occupational therapy we'll have her doing she may wish she could be sedated again!  I've joked that she's missed so much developmentally that just as soon as she's alert again I'm going to be right in her face singing the ABCs!  I'm sure with all her spunk she'll be catching up quickly.

Our friend Jonathan Frizzell did really well in his surgery and for now the repairs are working.  Please keep praying for his family though as the doctors are talking more about the family's plan for when it stops working rather than if.  That's hard for a mother to hear.

Our buddy Lynnlee also could still use your prayers.  They are starting to look at the possibility of a trach for her too.  There are a few more things that they are trying before they go that direction but please pray for their family as they face these tough decisions too.

Specific Prayer (just to recap)

• Penelope's preparation for trach surgery
• Jonathan F and his family
• Lynnlee and her family
• Our plans for how to handle things when I have to go back to work in one short month

 Lydia and Eliza on a walk.  Both were very excited. 

 "It's so exhausting being so adorable" -Penny

 "uh...guys?  Don't look now but I think there's a lamb on my head?" -Penny

Penny and Mommy during snuggle time today

Post from Ellie Rose's mom unedited

This is a post from my friend Andrea who has the pleasure of being the mother of Ellie Rose.  The newest member of our "we'll show YOU doctor's report!"club.

 

Whew...joy in it's purest form!

I never, never imagined walking out of this place so happy I could skip...but today, I did!

Ellie- Asleep and completely unaware of the miracle she is, especially today, when we were given amazing news!

Praise God for relief...in the deep areas of my soul!!

Today we had our meeting with Dr. Boop, the neurosurgeon, for a post-birth follow-up regarding Ellie's potential neuro needs. I started getting anxious yesterday because I was fearing that he would see something that we weren't aware of. From what we have observed with her she seemed perfectly healthy and typical (well, more than typical...amazing...but anyhow).

Dr. Boop met with us, asked us how the birth went and how she had been doing, evaluated her and then said the most priceless words I believe I have heard since we received her diagnosis at 18-wks of pregnancy. "This doesn't feel like a Dandy Walker head to me." (as he was evaluating her). I don't think I have ever been so absolutely thrilled to hear something in my life!! It was like the stress, pressure, worry, weight just rolled off my shoulders and fell upon the floor right then and there. It was like God just placed some salve instantly to the hurting places of my heart...the places that hadn't been able to heal for fear of the next unexpected twist and turn. Of course, if you know me, you know how I get when I am excited- goofy. And so I respond, "Boy, I sure want to high five you for those words!" as I am talking to this very calm, cool, collected neurosurgeon and I am talking about high-fiving him. It was hilarious as he just smiled back at me with humor in his eyes. I am sure that isn't the response he gets from folks all the time. I told him too that I would never forget this day or the words that he spoke.

The coolest part is that I feel like he, the doctor, was God's messenger today- telling our hearts to calm and be at rest for the first time in what has almost been a year of constant worry and fear about the unknowns in the future. We have dealt with many doctors along the path of this last year and this doctor has been the highlight of all of them. Even if we hadn't received positive news today, I would view him the same and be thankful that he would be caring for our baby. You know there are just moments in life when you know, clearly, that God is using someone directly in your life to speak to the most inner parts of your heart. And so, in that simple sentence I have found some unbelievable peace and absolute joy!

Even when I went to the OB for my post-baby appointment today she cried over how amazing Ellie is and the miracle God performed in her lil' life already. Hearing from her how difficult of a pregnancy we had gave me a bit of perspective, for if she sees so many pregnant sisters all the time and thought we had a rough road then it must have been a bit bumpy.

I feel like we are looking at Ellie like she is a newborn again, with an absolute awe of what God has done in her 6-wk old life to defeat the odds and show the world the healing of His hands. Share our story with someone and let them see how God has rocked it and flexed His muscles big time!

We do have future follow-up appointments regarding Ellie's heart and neuro, so please continue to pray that all stays positively consistent with what have learned today. We'll continue to update the blog, I guess it will begin to serve as just a plain ol' family blog...I like that...I can handle some boring!!

Pray for Jonathan Frizzell unedited

Our friend I mentioned yesterday needs your prayers. A little background. He is a 26 year old preemie who suffered a massive brain bleed at birth. He's spent his life in a wheel chair suffering seizures and many other complications from the bleed. His cognitive functioning is very low but his mom (who's name is Penny) says he is a very happy and loving young man. He has had many brain surgeries to try to help improve his quality if life but none have been a permanent fix. Last night they took him back to surgery to try to repair something else an it was unsuccessful. The best neurosurgeon in Memphis has been working with them and told them after the surgery that there was really only one more option that they had and that is the major surgery that he will be having tomorrow. I don't even know how to ask you to pray other than pray for Gods healing hand to be on their family. For peace and healing however He sees fit to bring it.

This is how Lydia rolls unedited

Well. Technically this is an attempted dramatization of the roll she

did while no cameras were on. I say attempted because she asked for no
paparazzi before we got a roll out of her. But I swear she really did
roll from her back to her tummy without assistance! If you trust the
word of a completely unbiased mother.

We also got a call from TEIS and her developmental analysis showed
she's only delayed in 2 areas. Cognition and communication were the 2
areas but this is figured
chronologically not gestationally!  Which means she's acting like a 6
month old not the 3 month old she's supposed to be!!! I'm so proud of
her I could burst! Again, I'm not biased.

6-27 unedited

I would love to report great improvement and miraculous healing. But I can't. All I can report is a baby who's getting used to the sedation drugs and has spent the majority of the afternoon looking around contently and kicking her chubby little feet. The vent settings are up to a level to make sure that she doesn't have any more atelectasis (collapsed alveoli) and so far her co2 is staying in an acceptably high range (low 50s). Every time we try to wean she raises her co2 and the alveoli collapse again. Not fun for anyone.

This led to a good but hard conversation with her doctor about the possibility of a tracheostomy. It's a very real possibility. If she is unable to wean from the vent then a trach is a means for us to get her out from under sedation and to a place where she can develop regularly with assistance for her lungs. It means staying in the hospital until she is a size that they feel comfortable discharging which is around 12 lbs. That could be a while. But it would be a while where her quality if life was markedly better than it is now.

So, the plan is to give her one more shot. Once we have ruled out any other contributing factors (infection, fluid retention in the lungs) that could be setting her back, we will start weaning again. Her pulmonoligist had a few other tricks up his sleeve that could give her a better chance at successful extubation and if that doesn't work then we know we did the best we could.

So for now we wait and pray and ask God to guide every step. This is not new.

Specific Prayer
- miraculous response to weaning
- wisdom for all involved
- peace for sweet Penny
- patience for sweet Lydia as she deals with all if this chaos
- a friend we have made here who's son is in so much suffering that they are praying for his suffering to end even if it means the Lord has to take him home. His name (ironically) is Jonathan

The picture is Penny hanging out with "lydi on a stick"

Pretty in Blue unedited

6-24 unedited

Penny - 8 lbs 11 oz      Lydia - 14 lbs 8 oz 

Sorry I haven't been good with the details the past few days.  Honestly I just have been having a hard time dealing with the whole thing.  Normally I can handle the ebb and flow of a sick baby pretty well but I guess the ebb just got me this time.  Penny is doing fine, it's just that she's not improving the way my optimist self would like for her too.  She's still on the ventilator and still sedated for the most part and I'm pretty sure it's wearing on her as much as it is on me.  The plan as of Wednesday was to extubate her on Friday morning.  On Thursday her co2 went up a little too high so they had to go up on her vent settings and postponed the extubation.  Yesterday she did a little better so they were able to wean her settings back down and so far she's doing well, but I'm just bracing myself for the next blood gas just in case it's high and we're back to square one again. 

After the little pity party I threw myself yesterday, the Lord told me very clearly exactly what i needed to hear.  Imagine that!  I realized that when we chose to trust God with Penny's life and refuse "selective reduction", this is what we chose.  I want my sweet Penelope more than I've ever wanted anything and that means I want this.  I want whatever it takes to preserve her life because I believe God has a purpose for it.  And that makes all the difference.

Specific Prayer
-praise that her atelectasis is getting better
-pray for healing for her lungs
-pray for discernment and wisdom for her doctors
-pray for wisdom for me as I balance both babies

Here are both of my girls happy to be alive!

Friends of the PICU unedited

We just met the sweetest ladies! On the elevator on the way up to see
Penny there were 3 ladies with bags and bags of goodies. Turns out
that they were going to the PICU and the goodies they had were to love
on PICU families. Never have I been so excited to be a PICU parent!
They have been making hats for the sweet babies here and when Penny
got her first one it touched me so much. With the way the pregnancy
went and this whole crazy road we've been on I haven't been able to
make the kinds of things for them that I always dreamed I would do for
my babies. Seeing my sweet girl in a handmade hat just gave me the
comfort I needed at that moment. It was just another way the Lord has
provided for me every little need. So meeting these ladies was a very
special moment.
Today Penny got a new hat that tops all I've ever seen. Thank you
ladies if the Southwind Garden Club for loving on us and our baby
during this difficult time.

6-21 unedited

We just got to the hospital today to visit with Penny and she surprised us by being up in her cute little bouncy seat. Her lungs looked the same today but apparently moving around can help the little alveoli to open up so today's goal is to get her moving as much as possible. She is loving the chair and it's so adorable.

Her vent settings are still inching down. She's on a rate of 20 now so at least shes having to do some work on her own rather than riding the vent like she did yesterday. There's a chronic lung and pulmonary hypertension specialist coming to visit Lebonheur tomorrow and her pulmonoligist said they may present her case to him at the residents conference tomorrow to see what he has to say. Should be interesting and hopefully enlightening as to what she needs.

Specific prayer

- discernment as to the best treatment for her
-opening of her aveoli
- no more complications!

6-20 #1

I know it's time for an update when I start to get text messages more frequently. There isn't a whole lot to update on today. She's hanging out and trying o rest up for another extubation attempt in few days. She's been started on some new meds (one to lower bicarb, one to treat pseudomonas in her lungs) and has gotten an increased dose of the Sildenafil which treats the pulmonary hypertension. She's responded well to it but could use a little more help. Her spasms have been fewer and more far between as have her desats so we are pleased. It's all such a delicate balance that it feels like it could tip over at any second. Kinda scary.

Specific prayer
-healing for Penny's lungs
-clarity of what she needs
-wisdom for the doctors and nurses
-protection from discouragement for her family

Happy Father's Day unedited

This fathers day is a special one. Never has there been a fathers day that I have watched the man that I love love on his daughters so tenderly. Never has there been a fathers day that I have appreciated the love of my earthly father more. And never has there been a fathers day that I have felt the love of my heavenly father more strongly.

6-18 #2 unedited

Today has been one of the hardest so far. I don't have the energy to write about it in detail so I'll be brief. Penny's lungs didn't get worse over the day so we decided to give her a shot at extubation. It didn't go well. She tried really hard but just couldn't do it so she had to be reintubated. It was a really rough little bit of time that I'm sure I can't accurately estimate because it felt like an eternity to me! She got settled and resedated and I ended up getting very sick. Let's just say I owe the sweet housekeeping lady after what she had to deal with today. The Lord provided what I needed though by way of Jackie (Lynnlee's mom) and my sister. After some rest I was able to get to the car so my sister could take me home. I think it's a stress induced migraine and is easing up a little. Hopefully I don't make a habit of this though!

I'm going back to bed now but here are a few moments I managed to capture today.



Sofia and Jenifer visiting from the NICU last night

Sweet Pea with everything off of her face. It didn't last long but she looked so beautiful!

Reintubated and resting

Lydia hasn't rested well all day (I think she knows penny isn't well) and so when it came time for night night she was ready. HUGE thanks to Aunt Linda the Great for loving on my baby for me when I couldn't.

6-18 unedited

I woke up this morning at the hospital thinking that Penny would be extubated any minute. Silly girl apparently didn't get the memo. The lower part of her left lung shows some atelectisis (alveoli that aren't inflating well) that have to be reinflated before she can do well off of the vent. So she's getting some different treatments to help open those little guys up and get her moving air! We are still hopeful that she could be extubated this afternoon so please pray that her lungs return to full function and that she has no other complications that might slow down the process.

Stars of Mommy's Blog unedited

Lydia and I had a sweet night and so did Penny and I. Lydia took her rice cereal from a spoon with lots of giggles and Penny let us bathe her and change her clothes and bedding an even weigh her with not a single desat! I was so proud! She now weighs 3.8 kg which is 8 lbs and 6 oz and Lydia weighs 14 ish lbs.

Instead of turning blue Penny has started to turn red which just makes me smile. Praise the Lord for medicine! Now all we have to do is make it to the morning and she can be rid of that silly machine for a while! Ok, I could go on and on talking about boring things like emotions but right now I must make the most of this hospital couch and it's pancake pillows and get some rest.

Lydia sporting her fat rolls and some rice cereal

Penny sporting her "star of mommy's blog" bib and a pouty lip

Doing Great unedited

They gave Penny another cpap trial and she's passing with flying colors.  The plan is to give her a few more hours on these settings and then put her back on low vent settings for the night so she can be rested up to be extubated in the morning!!!  I'm so excited!  She's such a tough little cookie!

I came home to shower and love on Lydia and she's already grown so much in 24 hours...it's crazy!  She's just so precious.  Right now she's trying to go to sleep in her bed but that gorgeous baby in the mirror keeps talking to her.  Who can resist such a face?!

6-16 unedited

Penny and I had a nice little slumber party last night. A pretty nasty looking storm came through but we were safe and sound here in the PICU. She has been started on the medicine for her pulmonary hypertension (it's viagra. Go ahead and giggle) and it seems to be helping with her spasms. She also is on pretty low vent settings to the point that she can either do it on her own or she can't. The next step is to put the vent settings on "cpap" and see how she does. Basically that gives her support but let's her do most of it herself. The first time they did it she dropped her sats a little so they put her back on vent settings. She will get trials like this every so often until she does well then she can be extubated. Her sedatives are also being weaned so we are having more and more sweet awake time.

I'll be going home soon to spend some time with Lydia and maybe get some rest. I'll try to post a picture of her soon. For now here's Sweet Pea and her sleepy eyes

Pretty Pretty Princess

Ok so normally I'm rather anti "princess" because I think it fosters
an elitist and selfish attitude but in this case I had to make an
exception on account of cuteness.

She's baaack unedited

Penny got back from the cath lab and did really well. She does have pulmonary hypertension but it is mild and responds a little bit to the medicine so hopefully she can get on it and do well. Now we will start weaning the vent which has been a struggle in the past so next hurdle here we come!

Penny in a Cath Lab unedited

We just got back from taking Penny to the cath lab. It should be routine but we need to pray that it is just that. Please pray for our nerves too and for Jonathan as he has to leave before Penny gets back. Thank you so much for facing this with us.

Daddy's Tweet unedited

Jonathan Chu (@chuviolin) 6/15/11 8:01 PM Goodnight vent, goodnight sats, goodnight little crocheted hat. goodnight wall with o2 air and goodnight to my Penny bear.

6-15 #2 unedited

Thank you for praying today we really feel it! Penny's decision to blow her last iv made for an interesting afternoon. She ended up getting a PICC line (I said it wrong before, it's a peripherally inserted central catheter) just in the nick of time before her sedation wore off and she got really angry. It all worked well, we got a surprise visit from my dad, and her brochoscopy went rather uneventfully. They let us stay in the room and watch which was very cool. The cooler part was that there was nothing abnormal going on. Now we wait for her cath lab visit tomorrow. This will tell us whether she has pulmonary hypertension or not. We hope!

On an even brighter note, her nurses get extra bonus points today. They have advocated for her, gone out of their way to make her comfortable and do the best thing for her. I could not be more grateful. This is not the first time we have had exceptionally awesome nurses but it's the first time we've had them since I had a phone I can blog from and take pictures with. So to the other great nurses we have had, please check our "nurse appreciation" post.

6-15 unedited

So we had a good night all around. Jonathan and I tore ourselves away from Penny to spend some sweet time with Lydia. I'm sure that will always be a painful balancing act but its necessary. Lydia is starting to learn how to roll over along with laughing and smiling and eating rice cereal with a spoon! So it was a fun time to spend with her.

Penny had a nice quiet night with not as many clamping episodes or tachypnea (which she was struggling with a little yesterday). Her intubation tube had moved a little so once they fixed that she settled down. She also got a blood transfusion yesterday which seems to have perked her up a bit too. Today she will be having a brochoscopy, which is just a little camera run down her intubation tube to check for anything that might be causing trouble. The pulmonoligist mentioned that she may be having trouble with her diaphragm being flat so this will answer that question. Because she has also been having to get ivs regularly and they only last a few days, it looks like she will be getting a PIC (peripherally inserted catheter) line while she is sedated for the bronch. I take that back. She's getting it now because she just blew her last iv. Hopefully this will greatly reduce the number if sticks and pricks she gets so this is good. Please pray that both of these routine procedures go routinely.

Although there are many differences between the PICU and the NICU that are difficult to adjust to, there a few we really like. Mostly that miss Penelope can have anything and everything she wants from home. I just brought in a huge bag of clothes and blankets to decorate the bed and she even has her mobile from home! Last night he was moved to another room to make space for newly admitted kids and in all of the hubbub she started looking around. Jonathan was here with her and said that she found her mobile and just stared and stared at it. I'm so grateful that that little thing was a comfort to her. In such a seemingly helpless situation it's nice to be able to provide something for her. I guess we should take a lesson from her. When everything is changing and nothing makes sense, we can just look up an find comfort in what we know. In her case it's panda bears but you get the point.

Specific prayer
-smooth procedures today
-Healing for her lungs
-definitive answers from these tests
-stabilization of her blood gases
-focus on gratitude for all of the unbelievable blessings we are receiving

Penny and her mobile

Lydia and her new Teddy bear buddy