Wednesday, November 2, 2016

God is a God of Miracles

It has been over a year since I last posted.  
And, this year has been a healing year in so many ways.  

I have been humbled and re-humbled!  And hope that I continue to try to be better in that area!  I have learned a lot about how much Heavenly Father does for each one of us.  I have been able to look past my heartache at times and see others and their heartaches.  I feel like this has been such a blessing, when I finally let go of my own craziness and can see how God is truly trying so hard to bless each one of us. . .especially through our crazy hard moments.   It is AMAZING how much God will teach me. ..and how much of His love encircles me when I do this!  I have been humbled by how much we all carry individually.  I am amazed at how much we all go through and have been reminded that we are not alone in our heartaches. . .even if they are not similar. . . the emotions are similar.

My last post was a hard one for me.  It was hard to share, hard to accept, hard to move forward. . .all while dragging my feet.  But, I feel. . .now. . .it is SO IMPORTANT to share.  To share how GOOD Heavenly Father is.   To share the miracle of Vivienne with everyone!

Since that post, our life has consisted of regular Dr. appointments with an ENT, a few appointments with an Audiologist, Neonatal follow up care, Clinics, Regular Pediatric visits, MRI, Sound booth tests, and weekly visits with our Parent Infant Program Person (PIP) who helped us more than she knows.  We got in a routine and the older that Vivienne got. . .the fewer appointments we had.  As the appointments decreased, its like I started to feel a little bit of the old Heidi coming back.  It was hard, and still is, almost like the old Heidi is looking at the new Heidi and wondering 'What just happened? Who is this "new" person and when is she leaving?'.  I have struggled and have even had a lot of anxiety and panic attacks that I would never be 'me' again.  But, through this, it has humbled me in ways that I am very grateful for, and I think prepared me to see Gods hand in my life again.

We started noticing that Vivienne responded to music better than anything else, and spent a lot of time recording her dancing!  


video

We then began to notice more and more. . .watching as she would turn to the sound of the microwave beeping, the front door opening and later the bath water turning on and her walker toy playing music when it was down the hall.  Up to that point, we had had a lot of talk at appointments of Cochlear implants, when to get them in and how soon we should move forward.  I couldn't do it.  It didn't ever feel right.  Now, if she wasn't responding, dancing, crawling to find her sister who is singing her name, and turning to the exact noise that was made. . .then I think I would have moved forward.  But, I kept holding off. . .and I know that a few of the Drs were really starting to wonder about the amount of denial I apparently had to be in.  But, Heavenly Father kept helping me. . .even as I struggled to accept His will...He was still there helping.

It wasn't until beginning of this year, while sitting in our ENTs office with Vivi on my lap facing him and he brought up cochlear implants again that I said, "Are you sure she needs them?".  I then asked Vivi if she wanted to dance and she started dancing, I asked her is she wanted to clap and she started clapping.  That is when we scheduled the first sound booth test.  She did great. . .and according to those results, they recommended hearing aids.  We still had concerns.  We continued learning sign language, and kept moving forward.  In May we had another sound booth test.  They scheduled 2 audiologists to do the test.  I went to the appointment with Jillian and Vivienne.  I sat in the booth holding Vivi on my lap and the audiologist on the other side of the glass with Jillian coloring by her side.  It was at that moment, watching Jillian play happily through the glass and holding Vivi on my lap, that I remember saying a silent prayer.  I prayed that Vivienne would respond to what she needed.  And that I would be ok with whatever that meant.  After the test, the audiologists, not knowing anything about our history, gave us the results.
She told me that 15 is normal for children and 25 is normal for adults.  She told me that with these results they wouldn't recommend any form of hearing device.  I am pretty sure she (and I) weren't ready for my reaction.  I started sobbing.  Full on can't catch your breath, crazy woman sobbing.  After a quick 'uh, here's some tissue' moment. ..I left and called Jake.  We felt an enormous amount of love from Heavenly Father and FOR Him!  And continue to feel A LOT of gratitude!

After that, we still had Drs comment, "Well, she's not talking yet, and she should be. . .so you don't know WHAT she is hearing."  And its true.  We didn't know what she was hearing.  And she was behind.  But, I felt PEACE!  It didn't matter anymore to me.  I knew and was reminded that God was with us, guiding us!  And I knew that I would help Vivienne thrive, no matter what she needed.  Yes, it still is overwhelming at times.  But, I don't throw my adult tantrums as often, so I feel like I am progressing! 

This fall we had our new PIP person start coming.  Our first one is out on Maternity leave and we hadn't been able to really catch up in a few months.  Summer travels, and sickness in our family kept lots of distance before her baby came, so she hadn't seen Vivi and how much she had changed in the last few months.  The new person came and asked a bunch of questions.  At first, as Vivienne sat there quietly getting used to this new person, I could tell that I was getting the ANSD speech (a bit like I was unaware of what it was) and her feeling like I was in denial.  Again, I said a prayer.  That I would be OK with whatever Vivienne needed.   And then Vivienne warmed up.  She proceeded to start babbling EVERY WORD she knows!  Up, Please, Happy, Mommy, Daddy, Jillsie, Jesus, More, Baby, Puppy, Blanky, Water (Which is Wa-Wa right now) and just kept on talking as we played with this new lady for her visit.  She even said Night Night as she got tired towards the end of the visit.  This new lady looked so confused.  She looked at me and said (with a very confused look on her face), "I think you need to get her retested. I don't think she has ANSD anymore.  You need to get another ABR done."  I asked why she felt that and she proceeded to tell me that it is rare for those with ANSD to develop clear speech.  Sound is jumbled for them and so it makes speaking very difficult.  She looked at Vivienne. . .confused and went through her chart and said...'Ya, you need to get another ABR done.'

When she left I just had so much gratitude that Heavenly Father has blessed her with so many miracles.  Her hearing yes.  But, SO MANY MORE!  That the bleeding in her brain didn't cause long term damage, that she sees from her eyes, that she is breathing on her own, that she hasn't needed surgery on the hole in her heart still, that she rolled over, crawled and started walking, that she is talking and understanding us more and more!!!  I am so very grateful that I have been able to see so many things that we have been blessed with.  I am grateful for all of the amazing people in our lives that have asked if they could learn sign language with us.  For the nursery leader who asked as Vivienne was coming in to nursery if she should learn sign, for the Primary doing signing songs, for the family members who learned a few signs a day and taught their kids!  The love of so many has truly been overwhelming!  







Looking at my little family...I KNOW that God is a God of Miracles!  And will forever be grateful for the miracles that He has blessed me to see!

Photo credit: Valory Jean Photography

  



Wednesday, September 23, 2015

Vivienne's Journey

 About 2 weeks before Vivienne was released from the NICU,  I was watching a video that a friend had posted on Facebook.  It was a video of a family I had gone to school with and I knew the two older boys.



After watching it I thought it was cool that someone had found their story and made this video, but didn't think much about it until 2 days later when the Doctors told us about Vivienne's new trial and what it meant for our future.

I'm finally in a place where I can share what I wrote.

DAY 79

The last few days have been hard.  I've been so off lately.  I just want to be done. To be done worrying.  Be done getting bad news. Be done waiting.  To be whole and home.  I feel like we have been living moment to moment for so long.  It's been a long two years, and I really want a happy nice little "wrap up" to our struggles, but that seems to not be the plan.

Yesterday we were told that Vivienne has Auditory Neuropathy Spectrum Disorder (ANSD).  In a nutshell, her hearing is somewhat like an FM radio. . .coming in and out.  In essence, she doesn't hear right... or at all.   I'm so very tired and this news has been harder for me then I can even express.

 I've felt so alone, disconnected and exhausted through it all.  I have moments of hope and light at the end of the tunnel and then my tunnel collapses and I'm left digging my way out again.  I'm trying to have faith and hope, but feel like I'm constantly falling short of the strength I so desperately need.  Jake seems to be managing this a bit better.  He has a brighter hope and resolution of the future...I just feel deflated.  I'm tired. I want peace.  It hasn't come yet.  And maybe it's because of my lack of faith.  My lack of hope.  Maybe it's just another trial to overcome.  But I need peace now...whether I deserve it or not, I need good news. I know it sounds bad. And I wish I didn't feel it....but I do. But, right now, I'll just try to do this.  I'll try not to fall apart.  I'll try not to get angry.  I'll try not to feel as if I deserve anything.  I'll try to have hope that she will be in the small percentage of infants who seem to "outgrow" this disorder. We seem to be really good at landing in the group of small percentages.  I'll try to get sleep at night.  I'll try to smile and be ok. I'll try to be happy about the small successes.  I'll try not to worry about what else could possibly be coming our way.  I'll try to move forward.  I'll try to lean on others....since I am so very tired. 

I hesitate in publishing this...because it is me.  It's all of me.  It's my fears, frustrations and lack of understanding....for everyone to see.  But, this is for me.  For me to hopefully look back and see more clearly Gods hand in my life.  I am too close to see clearly now.  Even though I KNOW God has not left me to do this alone.  Not even for a second.  But, sometimes...I'm just too close to see.  So, for now, I'm trying to try....until I can see.


After the ENT Doctor finished giving me the results of her tests, I held Vivi and sobbed.  Why? How?   I had a lot of emotions flood my mind.  I was alone that day.  Jake was at work.  I yelled and sobbed at Heavenly Father to fix this as a drove down the main road away from the hospital.  I told Him I had done enough and He needed to fix this.  That I deserved this miracle. (Something I have apologized to Him for multiple times since.) As I came up over the hill to enter onto the freeway, tears running down my face, I was reminded of the Featherstone family.  I thought of the boys.  All they had accomplished.  I thought of the relationship between all of the brothers.   I thought of their Mom.  How did she do it?  I almost drove straight to their house.   But, instead I drove home in a heartbroken mess.  That night I showed my husband the video.  We both cried.  We cried because we knew Vivienne can still do ANYTHING she wants.  And we cried at the new challenges we thought this would bring.  The possible isolation and loneliness.  We told our families and I pretended to move forward.

The first month home was really hard.   Doctor appointments, hospital visits, shots, more tests. .. all this while telling others how relieved we were that it was "over", and knowing we had really just begun.  One day, maybe I will feel like it is important to share all we experienced that first month home, but for now, it was hard and I'm grateful its behind us.

 Just like with any obstacle or trial, it gets easier with time.  And time has passed and we've been able to see many 'hidden' blessings that we missed when we were too close to the heartache.   Once a week we have someone coming in and teaching us sign.  We LOVE signing together.  I can sign to Jillian that its time to go home from across the park, and right now she comes because I signed it to her.  It's like our family's secret language and we love it!  We've learned that we need to improve how we communicate.  We need to be better at making eye contact, not talking over each other and listening until a person is FINISHED talking.  We were very lazy communicators and its been a good thing for us to learn to improve in this area.   We've learned patience and a new way of dealing with hard things.  And I am so grateful that Heavenly Father has let me see this.

Because I'm not as close now. . . .I can see more.  I can see a glimpse of how amazing Heavenly Father has been to me.


I have recognized so many tender mercies that have helped me get through this crazy NICU journey and now Vivienne's new journey.  We still have hard days.  I don't think that will change.  I am grateful I know that hard days will come and that that is ok.  I'm grateful for Vivienne and her squeals, her babbling, her hand babbling, her incredible smiles, for the days her hearing is better and she responds to our voices and for the chance that I have to be a mom to such amazing girls.   I'm grateful for so many people wanting to support us by learning sign language and for the love that we are constantly being shown by friends, family, acquaintances and complete strangers.  I am so very grateful that I didn't give up on Heavenly Father.  That I was blessed to hold on long enough to see His hands in my life.  He is ALWAYS there.  We just need to pay attention.  I'm grateful for that and hope that I can pay attention when the next challenge comes our way!



Thursday, March 19, 2015

Turning a corner and starting the "Glad Game!"

Today I feel so grateful.  Grateful for good doctors. Grateful for amazing nurses.  Grateful for loving family and friends. Grateful for a patient and loving Heavenly Father who loves me unconditionally.  And grateful, that over a year ago, I started writing this blog.  This last week, as I reread some of the things I wrote during our Anneliese experience, I felt like past Heidi served present Heidi a nice slice of humble pie.  For the past two weeks I had been feeling sorry for myself.  Dwelling on how hard this situation has been for us.  Living in my own pity-party....constantly.  Doing this got me pretty angry.  I started comparing my heartaches to others.  I felt guilty seeing people who thought I was being so strong, while on the inside I was raging about how unfair (I felt) life had been to me.  I  started comparing this NICU heartache to my experience with Anneliese.  And even though it was just a year ago, I started thinking that I handled my heartache and loss better with Anneliese.  I started thinking I wasn't as strong now as I was then. . .and that is why this NICU experience has been so hard.  But, that is why I am so grateful for this blog.  I decided to reread some of the posts I wrote before Anneliese was born.  As I read, I realized just what past Heidi would have given to have had the chance to be going back and forth to the NICU to see her little girl.  How would past Heidi, pregnant with a little girl she KNEW she would be saying goodbye to, have felt hearing present Heidi be so ungrateful for the many miracles that were happening.  That moment I decided to change. It never ceases to amaze me how easily we can lose sight of our blessings and how quickly our joy can be stripped away because of our own ingratitude. A dear friend shared a quote by Mark Twain last week that really helped me to turn that corner fully and find joy again, "Comparison is the death of joy." I was in shock with how much I had been comparing everything in my life.  I had even started comparing Vivienne's progress to the baby next to her who was born at the same age of gestation and was already in an open crib, was eating orally and seemed, from my perspective, to be progressing much faster than Vivienne.

That quote made me start thinking, I was killing my joy.  ME.  Comparison in my life and mind was destroying my joy! And not just my joy. . .my whole family was suffering because of this.  I came out of my own pity party and realized the damage comparison had caused.  Poor Jillsie was falling apart and Jake was trying so desperately to be positive for all of us that I could see the strain in every glance.  I started working on taking comparison out of my life and found that I kept thinking about the movie Pollyanna.  Do you remember that movie?  Well we borrowed it from my mom and started playing Pollyanna's "Glad Game" at home.  So, when we don't like a situation, instead of getting bugged or mad we think of something to be glad about.  :)  It might be cheesy. . .but it has worked WONDERS! Because we are recognizing the good again, this past week has really helped us to finally see our blessings and the progress that Vivienne is making personally.

Almost immediately we have noticed her growth and progress again. She is now in an open crib and maintaining her body heat perfectly! She has moved down from the high-flow cannula to the regular nasal cannula, she is down from 25% oxygen to 21-23% for the most part, and is down from 4 liters to half a liter which has allowed her to start oral feedings! She is now working with the occupational therapist and me every day to latch and eat on her own! On Sunday, she latched on within seconds and my bond with her has continued to strengthen more and more every day since then as her ability to eat on her own has developed more and more. She gets fatigued quickly and struggles breathing afterwards from all of the hard work, but this is her form of exercise right now and she has every reason to be exhausted after working so hard. Jake and I laughed about it the other day after walking the 4 small flights of stairs at the hospital and landing out of breath. We don't know if this is completely normal, but it made us feel better to think so:). Vivienne is such a little fighter and her personality is coming out the more she learns and grows.



She is not without a new set of struggles however. The fun roller coaster experience of the NICU. Each week we reprioritize our prayers for those things she needs to learn and develop so we can bring her home. This week's prayers are:

1) BREATHING. We pray she can continue to come down on her oxygen and breathe fully on her own. We would love her to come home without oxygen!
2) EYES. Vivienne's eye exam this week revealed that her eyes are now struggling from the constant oxygen she has been on these past 8 weeks, and her oxygen has increased again slightly because of her therapy in learning how to eat orally in mastering her suck, swallow, breathe reflexes.  She now has to get eye tests every week.  So, we need her eyes to develop properly with no long-term side-effects of her current ROP disease
3) HEART MURMUR. She still has a small heart murmur, which they will continue to monitor.  We pray it will close again completely and stay closed, so she wont need surgery
4) FEEDINGS.  She needs to master and tolerate her feeds orally and not have oxygen problems during or after.

The doctor told us today that if she can do 2 of these 4 things we will be able to bring her home! We joke as parents that "Home" is a four letter word the doctors NEVER use.  So for someone to EVER say "Home" IS HUGE! So, Yes...they used the "H" word and told us for the first time exactly what was needed for her to come home. There were no other "concerns" mentioned. When Vivienne's eyes look good and eats orally then she can come HOME! Her PDA can be monitored through regular checkups and is not bad enough to keep her at the hospital, since she can come home with oxygen if necessary. We just need her to grow and develop a little more and we can bring her home to meet her sister! There is much to be grateful for and we are excited that she is doing so well! We know she won't be home tomorrow, but we are hopeful it will be soon!

   

Thursday, February 26, 2015

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!

Tuesday, February 17, 2015

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!

Sunday, February 8, 2015

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.

Saturday, January 31, 2015

Our NICU Rainbow

A "Rainbow baby," is a baby that comes after a loss.



Since having, and saying goodbye to, our daughter Anneliese...I've struggled with the fact that often times lost babies are considered a dark storm in our lives.  In a lot of quotes or stories about rainbow babies it seems to refer to loss in such a negative way.  While it, and still is, hard...she is anything but a dark storm in our lives.  She brought rain.  I love the rain.  I love rain clouds.  I love the smell when it rains.  I love the comforting sound of rain.  I love the way everything is fresh after.  Rain brings and renews life.  Rain cleanses.  Rain changes a hot stuffy day to a refreshing one. Rain is a new start.  Rain helps produce beauty.  Anneliese is our rain.  She changed us.  She has brought a new perspective to our lives. She helped lift and renew us and so many around us.  She cleansed our hearts of many doubts and turned us to Our loving Heavenly Father and Savior.  She brought hope and new knowledge. She gave our lives so much beauty, love and peace.  She helped anchor our family to Our Savior more fully than ANYTHING else could have.  She was our renewing rain and she prepared the way for a beautiful rainbow.



Vivienne is our rainbow.  A rainbow that I am aching to see completely.  A rainbow that I want more than anything to be full and perfect and arch all the way across the sky. I want to see all of the glorious colors and enjoy all of her beauty. I want the Sun to come out and shine fully so I can truly enjoy this sweet rainbow.  But, for now, I only see a little glimpse.

I love visiting her. She truly is amazing and brightens my day.
Her Dr told us this morning that he hopes to take her off of the CPAP early next week as she is already breathing on her own mostly!
I got to comfort her this morning during her cares prior to them drawing blood for her labs. She weighs 2 lbs now and is eating 7ml every 3 hours. She is digesting her food well and tolerating her feedings! I have been so blessed to produce plenty of milk for her to begin her feedings while here at the hospital so her immune system can be strengthened and hopefully she starts gaining weight in the next few days. 

I get released from the hospital this afternoon...and I know the heartache of leaving with your arms empty and aching for your child.  I know what emotions are coming today...and I don't want them again. I don't want to leave empty handed again.  I don't want to explain to Jillsie that what we told her a few months ago, about how we would get to bring this little sister home with us, is not yet happening, but hopefully soon.  I don't want to explain to others how Vivienne is doing when I, with my limited understanding of it all, have no idea myself.  I don't want to drive back and forth from the hospital everyday.  I don't want to wait 14 weeks to bring her home.  I don't want the stress of wondering if Vivienne will be a full functioning child or not.  And so, you get to see ALL of my craziness.  I'm letting you see me.  Because even through all of the things I don't want to do, experiences I don't want  to experience or have as my trial...I still am anchored to my Savior because of the beautiful rain I experienced before.  I know that no matter how much of Vivienne's rainbow we get to experience or if the rainbow is complete or not, we will still have a loving Heavenly Father and Savior who are constant!  They are always there and waiting for us...no matter what!  My hope is that, once again, I can learn to turn to The Lord completely and trust in His timing, and His will for our family.  He helped me enjoy the rain, and I KNOW that He can help me enjoy every aspect of this sweet rainbow!




-Heidi