Happy Birthday Daddy!!

Just want to take a minute and wish my husband a very happy birthday.  I love you so much Matty P.  I hope you have a great year.  Thank you for giving me a wonderful life and 4 beautiful children.

Recent pics of Bella

On the way home from Salt Lake she was such a good girl. Then recent pics with older sister Abby

New pics of this week

See pics below of recent camping trip with Esplins, Moores, & Nelsons.

Home!!

We are home!!  I wish I could say that my worry was gone since the surgery, but I find that I still freak out about everything.  I think that is just my new normal.

Bella is doing amazing.  We will have to watch her head closely for the next few months but we are hopeful that we have avoided a permanent shunt.  Primary Children's was so good to us and we loved Dr. Riva-Cambrin.  Having said that, it is so good to be home.

I will try to post pictures soon.  Just wanted to say a big thank you for all the prayers and support.

5-26-12 Bella-bird

Cute, cute nesting Bella bird. She must've been tuckered out from yesterday cause she slept a long while today.

Neuro resident & On-call Neurosurgeon came in this am & answered our questions(they needed to be reminded we lived in Colorado), so one more night to monitor Bella-& then planned discharge Sunday. However, Becky will more than likely stay one more night to make sure all is well before heading back to GJ.

We are super stoked about these procedures working & preventing the permanent shunt. So so excited for Bella, although she may have headaches (she may not like this when she reads it later-but she's an "air-head"- bits of pockets of air from the mini scope remain that will take time to be reabsorbed) & tummy aches from getting rid of anesthesia & pain medicine-she continues on Zantac, Mylicon drops for the gas bubbles, & Tylenol for pain.

A special thanks to Granny for staying with Bella these nights at the hospital. Great job Gran! We love you.

Well off to bed, these late nights are catching up to us-& Dallin & myself plan on getting on the road after breakfast tomorrow(this) am.

Update 5-25-2012

So...Bella has had a good day: only 2 spit-ups total & her head has done so well they took the EVD (brain drain) out this afternoon & so far so good.
& guess what else? They have weaned her off O2 but we still think she's gonna need it while she sleeps: she is dropping her O2 Sats down into the low 80's when she's sound asleep.

The neuro resident who removed the drain said someone would be back to check in on her-to see if she is leaking spinal fluid at all.

Bella is back to pooping frequently but no blood noted- which may confirm the milk-protein allergy, so sorry for mama as she's had to cut out all dairy-what a trooper-mama doing all she can to help this little miracle baby. Way to go mom!

Otherwise we are just so happy & thankful for all the support & prayers. Thank you everyone.

We still don't know how long we will be here. If they decide to discharge us tomorrow we will stay in town at least overnight.

Post-op day 1

Update: Bella had a good night. She is back to full feeds & doing well. Had her 1st CT scan today-we're waiting results.
Incisions look good. The drain is now open-allowing fluid to come out when her pressures are increased-when she's angry or bearing down.
Pics are posted below.
Plan is to leave the drain unclamps today, then clamp tomorrow & see what her ventricles do. Then we'll know by tomorrow afternoon if she will need the permanent shunt. Let's hope & pray not.
Dallin had fun with Spiderman yesterday here at the hospital so I included those pics as well.

Primary Children's Med Center today

Well....yep! We are here in Salt Lake-it's 6 am, we're in the day surgery waiting are with about 6 other families with kiddos lined up for surgery.
We feel we're in the right spot & had the consult yesterday with Dr Riva-Cambrin. He was "pleasantly surprised" when he saw Bella's films & Bella because he expected worse.
Well-we continue to believe in the Lord's healing power & we pray for the surgeons hands to be guided by our Heavenly Fathers hands.
We bathed Bella this morning & we caught some pics of her right after- she was feeling pretty good; nice & warm.
Thank u all again for your prayers & support.

After a "KA-BOOM" of a morning wake up call, Ally comes running downstairs to alert me that the neighbors house had just exploded....yep it was engulfed in flames, so i got dressed and in the meantime noticed what looked life fireworks going off in the back yard -->these happened to be the downed above the ground power-lines popping/slicing/hissing at each other. The 2 residents in the Home were safe, but lost several animals due to smoke inhalation. So that was the start, got everyone safe an saved a cat. Appears that the fire was started by a propane take lighting up...but possibly it was left on? or was the resident too close with cigar

et butt/ashes. Its a possibily, but it was brought to my attention we need to write up and practice our family emergences.

Then off to work to a meeting, then on to another meeting be before that had to check on the staff in the ICU. I then received a phone call from Beck about some CSF leaking from the left incision - which is where it had leaked before.
Anyhew, got her in to US at 1:15, then straight to Dr Hemley's office for 3 hrs to perform a CSF "letting' procedure. Get home at 6:30, Eat, feed Bella, Bella launches food, Then Bella in a fit. Until gas drops and eating again. We are hoping praying for her not to have to go through anymore pain, no more surgeries....

Thank you all for your support everyone..... have a splendid night

Emotional Day

Bella is back in the NICU.  Her surgery went well.  Her MRI showed that her right ventricle was enlarged from the last head ultrasound.  So the shunt we put in a month ago wasn't working right.  Our hope and prayer is that this will be the last head surgery she has to have.  Our neurosurgeon said that a permanent shunt was probable.  But Bella has defied the odds before, so for now, we remain hopeful.  Thank you all for your continued prayers.  We invite you to continue to pray for a speedy recovery without any complications and prayers that her doctors will continue to be inspired and guided.  Thanks!

Bella back into NICU after surgery

Before & after pics from surgery today

Well now...5-9-2012

What an unexpected turn of events, but not totally unexpected. Yesterday, the lump was worrisome, we took Bella to the neurosurgeon's for a check up on it: "it's what we expect" then a lot of feeling, poking, massaging of the lump that only ticked off Bella...into a red-faced(red hot chili pepper color) tizzy where she almost passed out.

Long term VP shunt placement was discussed, Dad's idea of prepping the lump area under sterile technique & drawing off fluid was shot down, & worried parents left the office wondering how much longer before the dang thing either pops from being too full of shunted CSF or when it becomes time for the VP.

We consulted our Bishop last evening, who came through with more wisdom & faith based stories that related to our situation. By the power of the Priesthood which we (Bishop & I) hold, we laid our hands upon baby Bella's head, anointed her with consecrated oil & gave her a blessing of health. No this isn't the first one & definitely will not be the last, but lately we have been praying more fervently for answers, for solutions... the typical "why our family & why more surgery?" & "did we not make the right choice 3 weeks ago by choosing a subgaleal(temporary) shunt?" and "what else are we to learn from this trial? Why Bella?"

The blessing was given & we seemed to key in on the words that through Bella her doctors, surgeons, & those who care for her medically will be inspired by the Holy Ghost to know what's the best option for her. We felt at peace, the Bishop helped to increase our faith by sharing a true story of placing the right surgeon on the team to perform surgery on a prophet's ailing heart. He encouraged us to stay positive, even to do things to remain on the positive side of as many things as we could.

And wouldn't you know it? Guess who called Becky today? Bella's neurosurgeon. She had pondered & thought of Bella most of the night & was even prompted to call a pediatric neurosurgeon colleague of gets who resides/works in New York. They discussed Bella's case in its entirety & both concurred it's not the best time to place a VP shunt, but rather remove the two subgaleal shunts that are in her head. To give Bella another chance to relearn the pathways to absorb the excess CSF & rid her of the stagnant pocket of CSF that is causing the tennis ball-sized lump on her head. When you ask? Well, as early as Monday, yep the day after Mother's day. The day after her scheduled church blessing day.
A coincidence? Or do you believe as we do that part of the answer to our prayers & the realization of the blessing, are coming to pass through the kind-heartedness & thoughtfulness & many hours of pondering of Bella's neurosurgeon-as if Heavenly Father is directing/guiding her. We know that man does not have all knowledge & where his (or her) knowledge ends, Heavenly Father's knowledge continues on forever & ever.

So we are not begging, because we know you already do it, but just in case, here's a little reminder: Please, please send more prayers to Heavenly Father on behalf of this little miracle baby. We know you've already blessed us so much from your continual prayers & support, but please be specific in regards that she can tolerate being without the shunts for good-what a huge relief that would be for all of us. We know that God heals through His son, Jesus Christ, & we also know that through His holy spirit He can guide & inspire the thoughts/intents/actions of anyone-including the right surgeon, the right team, & the loving parents to make the right decisions regarding this little miracle.

We love you all & please do not take offense if we haven't called, have forgotten a birthday, or something else important in your life-because as you know ours has been a very stressful, ulcer-creating, yet faith-promoting roller coaster ride & we are still on it-as if we have been on it continuously with no potty breaks & feeling a bit like if we had anything in our guts we would have puked it out a few tight-cornered, upside down, curling twisty-loops ago!

Ignorance is Bliss

Just a note before I begin my thoughts for the day:  I am grateful!  Thankful that Bella is here with us.  Grateful for the progress she is making.  Thankful because things could be worse. 

Now, having said that.  I am learning that the old saying "ignorance is bliss" is very true.  Not ignorant in a bad way.  Let me try to explain.

I miss the days when:

The baby crying meant one of three things:  feed me, change me, put me to sleep.  Now, is could mean those same things or it could mean the shunt isn't working, the blood in the poop is more serious then the doctors think.  Or it could really just mean feed me, change my diaper, and put me to bed. 

Breastfeeding was so simple.  The baby cried you put them to breast and bam, baby and mom are doing great.  Now, I am used to numbers.  That is something the NICU will do to you.  It is all about numbers.  How much volume per feed.  How many ounces of weight gain.  How often you feed.  Babies in the NICU eat a certain amount at a certain time.  When they send you home it becomes a different ball game.  So breastfeeding is no longer easy for me.  I am in a constant state of "did she get enough to eat?  Should I give her a bottle just in case?  Is she gaining enough weight?  Should I be fortifying more of her bottles so she gets more calories.  Is it something I am eating that is causing the blood in her poop?"

A slight fever, a stuffy nose or increased crankiness was something you could just wait and watch.  Now, it is, do I call the pediatrician or do I call the neurosurgeon or both.  Can you say PANIC!!

I miss the days when my medical knowledge of babies involved words like: colic, diaper rash, and reflux.  Now, it is: chronic lung disease, retinopathy of prematurity, intraventricular hemorrhage, periventricular leukomalacia, sub galeal shunts and so many types of therapy I won't name them.

I know that the blessings of the last 5 months WAY out weigh the negative.  I still just have to mourn my lost ignorance.   Lost are my days of not worrying about every little thing and wondering what it means.  Gained is my increased faith,  my reliance on my Heavenly Father, a knowledge that Jesus is the Christ and that he died for me, that He sent Bella with a specific purpose to bless and enrich the lives of everyone she meets.  Gained is my greater appreciation for my children and my husband.  Gained is my increased ability to want to serve those around me.

It is hard to grow sometimes.  Sometimes, it would be easier to stay in the "comfort bubble". 

JUST BELLA

We have taken Bella a few places over the last couple of days.  Between all the doctor appointments and the other kiddos stuff we have been a little busy.   It has been..interesting to adjust to some things that having a preemie baby brings.  As many of you know, our sweet Bella has a baseball sized fluid pocket on her head.  It does look abnormal.  It is also one of the first things you notice.  Being around her all the time I am used to it.  I just see Bella.  Over the last few days we have gotten several different "looks" when people see her for the first time.  I am happy to say that most people are very sweet and compassionate when they ask what is wrong with our baby.  A few have given us the what I call "pity" look.  And even fewer have looked at us like we were carrying around an ape instead of a baby.  At first it was hard for me.  I want people to see Bella for the miracle that she is, not the lump on the side of her head.  And then I realized if I want people to see Isabelle as I see her, I need to be ready so share her story (tears and all).  Because when you tell them she is a 24 weeker who had a bilateral grade 4 brain bleed, chronic lung disease, coded a couple of times, required several blood transfusions, had stage 2 ROP, has had 2 surgeries to place shunts (hence the lump on the head), that she defied odds again and again you begin to see the looks on their faces change.  I then get to bear my witness that God is real.  That Christ lives.  That miracles still happen.  That even though I would never have said "pick me" to the whole preemie roller coaster, I can now see even more blessings that have come to our family.

I hope that as we continue on this new path that God has set before us that I can continue to see, and help others see: JUST BELLA.

Doctor Updates

We had a head ultrasound and appointment with neurosurgeon today.  Her ventricles look good.  Her left one is normal and appears to be functioning as it should!!  We are still unsure if her ventricles are communicating or not (we want them communicating or sharing fluid).  The right ventricle is still slightly enlarged.  Part of what makes it look so large is due to the fact that when Bella had the massive brain bleed, the blood spilled out of the ventricle and onto part of her brain.  This area of the brain was damaged by the blood.  So, she is missing a small portion her brain.  What does this mean?  Possibly nothing, or it could mean some more significant disabilities.  We have the good old "wait and see" approach.  Our neurosurgeon is amazing and always helps me look at the positive.  She reminded me to "treat the patient, not the scans".  Meaning that Bella is so neurologically appropriate for her adjusted age so focus on what she is doing and not what her scan says.  This is great advice.  It is still hard for me though.  The doctor is giving Bella about another month to see if her brain can figure things out.  If not we will be placing a permanent shunt. 

Bella also had her home visit with the therapists yesterday.  They too feel that she is right on track for what a 1 month old should be doing.  The whole adjusted age thing takes some getting used to.  Everywhere I go, I say she is 5 months, 1 month corrected.  People kind of look at me funny sometimes.

I took some pictures today after her bath.  We had to change her o2 cannula and "dots" so I took advantage of having her completely free of tubing to take some photos.  In some of them you can really see the "softball" sized pocket of fluid on her head.

I am still learning lots as we continue on this journey.  I am not always great at explaining things but here we go.  I have learned that to really be able to "accept God's will or plan for us" is easier said then done.  I have learned that it is ok to pray for what I feel is the best as long as I remember the Lord knows better then I do.  I struggled for a while, wondering what I should be praying for.  Should I be praying for Bella's head, eyes, body to heal or should I be praying to accept the God's will no matter what.  The answer I got was that it is absolutely alright to pray for the best outcome.  So that is what I do.  I pray that her head will heal without needing further surgery.  That she will grow and develop normally and meet her milestones on time.  I feel these are good things to pray for.  But I have also realized that God will mold her and me and our family in the best way.  Maybe that will happen just like I am praying for.  Maybe it won't.  What I know is that God is good.  That this life is temporary.  That eternally we will all be well and whole.  That we are meant to struggle to grow.  Does that mean I love the situation that we are in or that I would have chosen this for Bella and our family?  No, it doesn't.  What it means is that I know that no matter what, Heavenly Father will be by my side.  He will provide a way for us to make it through. 

Do I struggle to be ok with our current situation some days?  Yes, yes I do.  Do I cry, almost daily.  There are happy and sad tears.  Happy the day Bella looked at me and smiled.  Sad for the days when I ponder on the unknown.  I read an article recently about "what is normal".  I am struggling to find our new normal.  What does that normal mean for me, Matt, Bella and the rest of the kiddos?  I don't quite know yet.

Prayers for continued healing and being able to accept God's will.