Vivi at 31 weeks

Vivienne will be one month old on Friday.  This whole experience has been crazy.  The roller coaster of emotions is insane.  Updates seem hard because they are CONSTANTLY changing.  One moment Vivienne is doing great and the next we have 6 new worries we didn't know even existed.  We used to say 'Today is a good day' or 'Today was rough', but we've discovered that it's more moments than days.  So for now, Vivienne is having a good moment.  And I am so VERY grateful for these moments!

Vivi's Update...for now :)
HEAD- Her head ultrasound went well and the bleeding they did see is small and raises no concerns for the Drs.
EYES- Vivienne's first eye exam was going to be yesterday but they pushed it back to next week so...one less thing to stress about for now;).
HEART-Vivienne had the heart ultrasound (echo) as well. It still showed the PDA murmur in her heart but it is small so they are seeing if it will close and stay closed on its own now. They hear it sometimes and other times they don't which means it is probably popping open every now and then. If it doesn't stay closed, most likely she'll need surgery. But, once again, a stress for a different day.  LUNGS- She is still on the high flow nasal cannula but they lowered the pressure from a 4 to a 3 and is in between 28%-37%.  She still has a lot of desats (where her oxygen saturation drops pretty low) but is having less brady cardias (where her heart rate drops because she's not breathing well).  We are praying lots for her lungs and heart to be healthy and strong. Her PDA does affect her lungs and whether the lungs will function to the best of their ability, so getting the murmur resolved quickly will help her so very much!
INTESTINES &FEEDS- She is doing pretty good on her feedings.  They did slow down the amount they usually increase her foods by, because she had a lot of food still in her stomach that she hadn't digested on a couple feeds.  So because of her NEC infection that she just fought off, they really want
 to take it slow so her intestines can handle it.  They also are trying to decrease the extra fluids in effort to keep the PDA in her heart closed.  But, once she gets up to full feeds they will stop the IV nutrition, take out her PICC line and add fortification to her milk to get her nice and chubby for us.

We are so grateful for each day with her and are so very ready to have the joy of bringing her home.  We know she is where she needs to be and pray that we can patiently endure this crazy roller coaster ride.

I have been reminded constantly of the MANY miracles along the way and have tried to focus on those so I don't drown myself in the 'whys' and 'if onlys'.  We have bad days and frustrating moments.  I cry a lot and feel sorry for myself even more.  I envy pregnant women who get to their last trimester and envy women carrying car seats with new little babies. It seems the heartache of infertility is very similar to leaving a baby in the NICU.  I get frustrated with myself for feeling this way and have
avoided seeing people who know me and know of our last two years of heartache as much as I can. After losing Anneliese, it took awhile to feel like I could have conversations with friends and neighbors without feeling like I was just putting on a happy front.  Now, I didnt prepare mentally for this.  I wasn't ready.  I wasn't ready for the mirrored sadness in others eyes.  I wasn't ready for such a hard heartache again.  I wasn't expecting to want to avoid everyone I know for fear they'd ask about how I was doing or how Vivi is doing?  Asking is definitely not bad...it's just that I'm scared to answer.  This is when the 'what ifs' come into play for me.  What if I run into someone at the store and fall apart as I'm grabbing a gallon of milk  and can't stop the sobs that come on a regular basis.  What if they ask a question that I haven't thought of yet and have a new worry.  What if it's a REALLY bad day.  What if I feel like I can't do one more day of this at the moment I see someone.  What if.

 So for now, I try hard to control my feelings in public so I can function. So I can be a mom that doesn't cry all the time.  It's been a hard two years and I pray Jillsie forgets how much I've cried.  I
know that if I can stop the tears long enough I will begin, once again, to see the many miracles and joys along the way.  The joys of stress free moments.  The joys of a smile from my girls. The joy of planning for Vivi to come home.  The joy in planning for Jillsie to meet her sweet little sister.  Jillian, Anneliese and Vivienne are AMAZING little girls and I'm SO GRATEFUL that I have been blessed to be their mom.  I have been taught so very much by each one already.  But the thing that they have taught me that has been the most valuable, is the glimpse of my Heavenly Fathers love for me and of my Saviors love for me.  God is aware of me personally.  The Savior knows my heartaches perfectly.  They have not left me alone.  And for that knowledge, I will be forever grateful that I am a mom to my girls!

Vivienne

Vivienne Update

She has a PICC line in her left arm now, and they took out the other central line IV and 2 other IVs (yep, every little limb, but one foot, had an IV)
Took out respirator and back on high flow nasal cannula(they tried to ween her down on the pressure because she kept high SATing but when they did she had a lot more Apnea and Brady cardia episodes. . .so for now she is staying at a 4 at 21%-24%)
Anderson tube is also out (which provided suction and vented belly) and OG tube in (vents belly)
Just finished Antibiotics for pneumatosis on Monday and closely watching belly for increased NEC signs or symptoms
Still NPO (no food-just IV nutrition)
DRs hoping she can tolerate feedings again starting today so she can start gaining weight and growing more
She has two heart murmurs and will be doing an echo today to check the heart more fully
She also has another head ultrasound today as well.

They allowed me to hold her on February 14...really hold and snuggle her against my chest for over an hour.  I finally felt that glimpse of being a mom to a newborn again.  It made saying goodbye that much harder and I fell apart on Sunday as we left the hospital.  I can honestly say I hate this.  Yes, I know that hate is a strong word. But, I hate leaving Vivienne.  I hate not knowing if she is truly doing ok.  I hate leaving Jillian.  I hate that this is stretching her at such a young age.  I really hate that she hasn't met her sister yet.  I can't wait for that day.  There is SO much about this NICU experience that I hate, but we have also experienced SO much love that it has truly humbled and lifted us.  I know I will never be able to thank everyone who is praying for our sweet little girl and our family.  I can't even begin to thank everyone for the love they have shown us.  We have been on the receiving end of so much service, generosity, and pure Christ-like love now for so very long that "Thank You" just seems SO inadequate.  I truly wish you could see in my heart so I could show you my gratitude.  It has been very humbling for me.  Thank you!  Thank you for the prayers on our behalf.  Thank you for your love.  Thank you for your friendships.  Thank you for the cards, gift cards, gifts, meals, service, love and your strength.  I hope one day I will be able to pay this forward. Thank you!

After fasting and prayer. . .Vivienne is defying the odds!

We are very humbled from the events of the last day. 24 hours ago we were rushing to the hospital thinking our non-responsive and lifeless little girl was going into surgery on her intestinal track to remove a dead section of her large intestine. Now, this morning, we are counting our blessings! The nurse practitioner called last night to tell us they had ordered another head ultrasound because Vivienne's eyes were dilated, with her left eye dilated more than the right. She was concerned that Vivienne was suffering from blood on the brain, but that it could also be a side-affect from the morphine they gave her prior to her transport to Primary Children's Hospital. This was at 6:18pm last night. Heidi and I hung up the phone and offered up a quick prayer that it would not be blood on the brain and within 10 minutes received a call back from the nurse saying that the imaging technician was already there and from the looks of it there was one small bleed, but that the dilated eyes were most definitely from the morphine ONLY, and the small bleed was nothing to be concerned about at the moment. She told us that the radiologist would review the film around 9pm and confirm her initial assessment. The nurse left a VM a few hours later that the radiologist agreed with the NP and all was well with Vivienne. Her lab tests continued to improve throughout the day yesterday and last night, and this morning we received a very positive report from the bedside nurse that Vivienne looks much better already, has gained 40 grams in the last day, and the antibiotics are clearing up the infection. They were taking x-rays every 4 hours the last couple of days to watch her bacterial infection, and based on the progress of the past 24 hours, they no longer feel they need to take any more x-rays today! 

Vivienne is responsive to the nurse this morning and doing and looking well. The nurse is optimistic that surgery will not be needed at this time, but the next 7 days will confirm that. When an episode of this magnitude occurs they have a policy to not allow us to hold her for 7-10 days, and they try to keep the incubator closed as much as possible except to change her diaper a few times a day along with take her temperature and do minimal cares. 

We cannot thank you enough for the combined faith and prayers of the past 24 hours. Together we have moved a mountain of sickness, doubt, fear and concern! God has heard and answered our prayers without delay! We are humbled by your faith and sacrifice on our family's behalf. She is responsive this morning, "Awake and alert" according to the nurse, which we have not seen or heard since Monday night. Today is a good day!

My brother, Rich reminded us of President Uchtdorf's talk where he taught that we cannot "See the End from the Beginning," and it was just what we needed to hear to help us regain a faithful and grateful heart in the face of adversity. For some reason, yet unknown, we have been given these trials and challenges at this time.  Hopefully some day we will be able to look back on this season of our lives and recognize the blessing these trials are for us to prepare us for that future day. To be honest we aren't there yet, but the events of the last 18 months of our lives have taught us that answers do eventually come when we are ready to receive them. We have been humbled by the immediate answers to our prayers today. We just hope the Refiner's fire will simply burn what logs he has already thrown on it at the moment, and that he is fresh out of fire wood for a while that it can cool down a bit;). Nevertheless...

We love you all! Thank you for following our story and praying with and for us! Thank you for your faith! Thank you! We could not do this without your support and faith! We are feeling sustained from moment to moment.