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.