Ending the year with a BANG!

Yay!  This year is going out with a bang!  Joshua had his last eye exam today!!!!  This was the first eye exam that I watched and I have to admit it was hard to see my little son's eyes pried open with paper-clip type tools and another thin tool being slid behind his eye inbetween his eyelid.  The ophthalmologist looked at his eyes for a while and looked at each eye twice which made me a little nervous, but when it was all said and done he said, "That's it!  They're fully developed.  He doesn't need another exam for a year!"  YAY!!!  I clapped and cheered.  What a relief!  That has been one thing that has been looming over Joshua for a while and I felt like he was doomed for surgery.  But praise the Lord we can move on from that!

In rounds, the doctor said to wean Joshua's flow to 0.5 at 100%.  This is VERY close to an amount that Joshua could go home on.  The doctor explained that we want to get him a little lower though just in case he were to get sick at home, then I could bump Joshua up without getting re-admitted to the hospital.  Fair enough.  So far he's handling the change well especially since he just got bumped to 1.0L yesterday!  Two big improvements in two days!

We still have a ways to go on feeds though.  He gets very, very tired and is too tired to take in the amount of calories he needs to grow.  I spoke with the doctor at length about feeds and Joshua's growth chart, fortified calories and mL/Kilo, ad lib and on demand feeds...and I'm glad I was able to clarify and communicate some things - we seem to be more on the same page now...at least until the next doctor comes on Friday.  Joshua has been taking on average half of his volume by mouth and half get gavaged through his NG tube.  Joshua breastfed really well today though which was a relief after this past weekend.  He's ending the year on a great note...Here's to a much better 2014!!!

Our nurse last night made a fun photo for us!

A different kind of Christmas

This Christmas was a different kind of Christmas.  We did not do the things we usually do...did not send Christmas cards or write a newsletter, I did not put one single ornament or string of lights on the tree (the kids decorated it with Joe while I was at the hospital with Joshua), I only baked one batch of cookies, presents that we purchased were very minimal, we did not put out any outside lights, did not drive around to see neighborhood lights or zoo lights, we ate leftover lasagna on Christmas Eve - a freezer meal that someone had provided for us, and Christmas was celebrated in town with no family visitors.  However, we were blessed.  The kids received generous presents from family, friends, and people who called themselves St. Nick.  We were given a working oven from a friend that heated our leftover lasagna.   We were invited to a friend's house for dinner on Christmas Day.  They offered to watch the kids too - so Joe and I could go to the hospital to see Joshua together.  It was hard to not have all 6 of our family members together, but we were so grateful for the Bolins.  We enjoyed a delicious Christmas dinner together with their family when Joe and I got back. 

Truth be told behind the smiles in the photos I have shed many, many tears in the past two days.  Christmas was very difficult this year.  I had to forgo opportunities to visit and feed my son in order to spend time and do memory-making activities with my other three.  On Christmas Eve my heart felt ripped in two as I had to choose between sleep and seeing/feeding Joshua.  It seems silly I know, but almost 4 months of stressful jam-packed days and late nights are really taking its toll.  I desperately wanted to go to the hospital and hold him and cuddle with Joshua on his first Christmas, but physically it would not have been a good choice.  Then on Christmas morning after all of the presents were opened I really, really had a hard time.  Emotionally and spiritually I was pretty much at rock bottom.  Thankfully Joe helped me to pull it together and enjoy time with Joshua and with our friends that evening. 

 The Lord has heard my cry, has seen my tear-stained cheeks, and knows my heart.  I need my son home...soon. 

Head to Toe update...

I have been having a hard time writing posts lately.  Partly because I have a hard time finding time to write.  Partly I feel dumb stating all of this boring medical stuff to anyone out there reading it.  And partly because I am not always brave enough to acknowledge my feelings to an audience.  Joe reminds me this blog is for me and Joshua - and doesn't have to be some cutesy or inspirational pinterest worthy blog.  It is just simple and boring.  Someday I may change this blog back to private ;)  But in the meantime here is a general update on Joshua and photos from the past few days.

We have not had any brain ultrasounds lately, but based on head circumference Joshua's bleeding and fluid on his brain seems to be stable.  They will not need to do any treatment (shunt) as long as it stays stable.  We'll just have to wait and see if/how this Grade 3 IVH and the hemorrhage in his cerebellum will effect him as he continues to develop.

You like to grab onto things...this is a bootie

Holding your paci in

Joshua had another ROP eye exam this week and the vessels are still stable.  They still have some growing to do so his eyes will continue to be monitored.  His next exam is in two weeks.

At 38 weeks (about 3 weeks ago) the PT suggested that it would be time for Joshua to have some entertainment in his crib.  So he now has a mobile hanging from his crib.  And we now have a mirror and aquarium that we switch in and out.  During the past week Joshua has really taken to the aquarium that lights up and plays music or ocean sounds.  He loves to suck his paci and watch it after his care times.  He will focus on your face or sometimes on the mobile.  He will look in your direction when you are talking.  I have yet to see him follow an object, but I would guess that will be coming soon now that he is full term. 

We have been breastfeeding twice a day for over the past week and he is doing GREAT!  Yesterday was the first day that he did not show interest because he was too tired.  They had just weaned his flow though and was probably tuckered out from working harder at breathing.  He started out on 3L of flow on the cannula and on Saturday the bumped him to 2.5L and he did great.  They said he didn't even notice the change.  Yesterday they took him down to 2.0L and he was bradying and desatting more and he didn't want to feed...but at 6am he finished his first FULL bottle!  All 50mLs of it!  Way to go Joshua!  He needs to take all feeds by mouth before going home.

The doctor is continuing to slowly wean Joshua's flow on the cannula.  They do not want to wean it too fast because putting Joshua on 100% oxygen at a flow that he could go home on may cause his eyes to deteriorate.  So right now Joshua is on blended air (which you are not able to go home on).  He could go home on less than .5L at 100% O2...still a ways to go.
He still has BPD or chronic lung disease and he sounds like an old man with a wheezy obstructed cough.  The nurses say his lungs sound clear, it is just because of the bad lung tissue.  As he grow, hopefully he will get more and more healthy lung tissue to help him breathe more easily and clearly.
They have taken him off of albuterol and Lasix and so far he is handling the adjustment well respiratory-wise.

A second without your cannula!  Look at your handsome face!

Joshua's fracture in his arm has most likely healed.  They do not recheck to see how it is doing.  But since he has osteopenia the nurses just try to handle him extra gentle so more fractures don't occur.  Fractures aren't something they check for unless he would get super fussy or if they would notice it on an x-ray for some other assessment. 

Joshua has a huge umbilical hernia that looks like a little button that is going to pop when he bears down, cries, or gets mad.  It is getting bigger and may need to be repaired in the future, but right now it is not causing any problems.  They are still watching the two inguinal hernias that he had repaired and are concerned they may recur.

Right now his intestines are handling my breast milk.  Right now I am not altering my diet any and he is doing well with it.  Joshua still has some residuals in between feeds, but right now they just adjust his volume of feeds based on how much residual is in his stomach before the next feed.

Joshua officially hit 3 kilos this week!  Which is about 6.5 lbs!  He is 47cm long.  In newborn sized diapers and officially out of preemie clothes!  He's getting to be a big boy!  Still considerably smaller than any other newborn I have given birth to!

Blessed

Even though I've been struggling lately, I cannot go without saying how blessed we have been by friends and acquaintances who wish to help in ways that go beyond the ongoing needs of our family for meals and childcare...

One good friend entered our story in a radio contest in order to give us a Christmas wish.  He won gift cards for us to help us pay for Christmas presents, gas, and a nice meal out.

Another friend dropped bins by for me to fill up with our Christmas gifts.  She is going to wrap them all and bring them back when she is through.

Another good friend decided to be St. Nick to our family and sent the kids some extra gifts this year to alleviate some of my stress of Christmas.

The receptionist at our dentist office called up and asked how they could help.  Instead of doing a staff cookie exchange they will be collecting some nut-free and allergen free cookies to bring to our family.  (It is especially a blessing since our oven is now broken!)

After our oven broke yesterday a friend offered us her oven that's still in good condition they just wanted to switch to gas!  Why yes, we'd love it!  We are hoping to get it to our house later this weekend.

Thank you, Thank you....1,000 times thank you.  We are blessed.

Santa and Mrs. Claus

Today Santa came around to the unit.  I was supposed to be there during Santa's visit, but the family that was going to watch the older three called to cancel because their family was sick.  I was so disappointed I couldn't be there...  I really don't care too much about Santa, so I really didn't know what made me so upset.  We've only taken our kids once to see Santa in seven Christmas's.  But I realized it was more about missing out on something special with Joshua than it had to do with Santa.  I have missed out on so much already I don't want to miss out on opportunities to make Joshua's first Christmas unique and special.  I just hate missing so much of his little life. 

So we had a great nurse who is an advocate for Joshua; she figured out a way to take a photo with Santa and Mrs. Claus even though the couple wasn't allowed in Joshua's room with the MRSA contact precautions.  Suzanne unhooked Joshua temporarily from all his tubes and monitors, told him to take a deep breath and rushed him over to the door to get a quick photo with the jolly ol' couple.  It really means so much when a nurse goes out of their way to do something special for us. 

So here is Joshua's first photo with Santa...

Uggghhhhh!

I'm done, I want to throw in the towel, I want to quit.  I've thought this many times throughout the course of this journey and am feeling it again today - The weight is too heavy.

I am so weary and worn.  Although Joshua is doing better, life still is awful.  At least when he was very sick I felt a little more justified in my sadness, now I just struggle more with feeling these thoughts.  This new life has been going on for over 3 and a half months; one would think we are used to it.  I talk myself into trying to suck it up and make it work, but I can't, I falter and fail on all accounts.  The kids are so tired of being taken to and fro - even when it is to their best friends' houses they whine or complain.  I don't spend much time (let alone quality time) with the older three because I'm either pumping or at the hospital or driving them to friends.  They say they want Joshua home so that Mommy and Daddy don't have to go to the hospital anymore.

My relationship with Joe is strained and all five of us are on edge or emotional.  The boys wake up in the middle of the night crying and discombobulated and need extra hugs.  Our home is in such disarray; we don't have time for keeping things organized or clean, plus I'm not home long enough for that.  With being able to breastfeed Joshua it presents new issues with wanting to be there to feed him twice a day.  In addition to adjusting my pumping schedule to keep my milk supply up.  I'm waking up again at night to get my supply more consistent.

Even when I'm with Joshua at the hospital my visits are not the same.  They are very structured and timed to get there to feed and pump afterwards.  It is rare to have kangaroo time anymore or hold him after feeding because I've gotta pump the rest out.  Joe is encouraging me that this tedious pumping is most important for the long run even though I just want to sit there and enjoy my son in my arms.  Putting him back in  bed will hopefully allow me to exclusively BF someday.  It is hard.  I need that cuddle time in addition to feeding him.  So I feel like a failure.  The weight on my shoulders is very heavy.

With Christmas coming there is an added stress of all the expectations of the season.  Presents, cards, baking, crafts, decorations, parties...There is a lot that I have let go of this year, but that doesn't make it easy.  These things that I want to do with our kids clutter my mind and sit on my shoulders even though I know I won't have time for them.  I want to go shopping (something I really enjoy) and just buy the kids everything on their wish list, as if "things" will make everything better, but it won't.  It won't buy me time and it won't buy true happiness.  I'm VERY thankful for friends who have decided to help us out with Christmas shopping and wrapping. It helps lighten the load.  Donna the desk clerk at the NICU has reminded me that this is a year to be a gracious receiver.  That I'm always a giver to my kids, my husband and others and it is okay this year to switch roles.  And I'm constantly reminding myself that this year IS different and it is okay to forego some of those traditional activities in order to be present.

This Christmas I have been reminded again of Emmanuel - God with us.  God is always present.  I constantly need reminder of this Truth because truthfully I don't feel him, I don't feel him lightening my load when I ask.  I pray that this Christmas I can somehow get this weight off my shoulders.  That even though I give it to the Lord time and time again that finally He would hear and I would feel these burdens lifted.  That I would feel His grace and presence strengthening me and giving me peace.  That I would have more time physically and emotionally to enjoy being present with my family and celebrating the season.  That my kids would know how much I love them even when I can't be present as much as I would like.   For now, I'll keep trudging forward.

Due Date!

Today was your due date.  It was a bittersweet day for Mommy.  You have come so far in the past 3 and a half months, but Mommy's heart wishes for what should have been.  I should be meeting you for the first time, spending some one on one time with you, cuddling and breastfeeding you.  Even though we got to meet you early I still feel like I haven't spent much time with you.  I am constantly saying goodbye.  So I wanted to be close to you today and I decided to snuggle with you and spend the night with you.  Daddy left around 11pm so he could go back home and get a good rest before work.  I stayed for your midnight care and held you and breastfed you.  Then I held you through your 3am care and our nurse just gavaged your feed.  For about 5.5 hours we slept and snuggled; it was a nice and greatly needed time.  I put you back in bed shortly after 5am so I could get back home and see Daddy before he left for work, pump then take a quick nap before I started the day.

Grandma Weide was in town and so the older three had to be dropped off at friends' houses so Grandma and I could visit you and then so Daddy and I could visit you.  We are so thankful for all of our friends who have offered to help out especially now since your siblings can't come and visit you with flu season going on.  That has definitely been an answer to prayer!  Mommy and your brothers and sister stopped what we were doing one day to pray about this together.  It stresses Mommy out to figure out where to bring the older kids so that I can come and see you.  It scares me that if people don't step up and offer that I may not be able to see you.  Or if I have to come in the evenings when Daddy is home from work then I will never see Daddy and that is not good for our family either.  Finding a balance has been very difficult on everyone and is one of the greatest stresses on our family.

I was at the hospital about 14 hours (spread across three separate visits) on your due date; it was a long day with little rest for me, but truly needed.  We have missed so much time together Joshua.  Time where you should have been hearing my heart beat and feeling the warmth of the womb.  I've said this before, but I wish you were my first so I could spend more time at the hospital with you!   Now, I am trying to make it in for two care times so I can breastfeed you if you "cue".  Generally you do better with the breast than the bottle which Mommy is very happy about, but that means that I want to be there at the hospital so much more than is physically possible.  I'm trying to coax them to allow me to BF you more than twice a day...because breast milk is best...oh wait...breast milk is best only if it is fortifed and fed through a bottle...don't start me on that one...or on "cue based feeds."  That will be a post for another day.   I can't wait till you are home and I can carry you around the house...might be a little tricky though if you are attached to oxygen and monitors.

You love the aquarium!

That bear is shrinking...or you are growing!

Get that paci in my mouth!

Trying to pose for a cute picture...BUT...

Then you started eating my face...we'll call it kisses!

Mommy & Daddy

Mommy and Daddy don't get to visit you together too much anymore.  Daddy only comes in to visit you a couple times a week.  It has been hard on both of us...and I'm sure you miss Daddy too.  Tonight we were both there enjoying our time with you!

Exercising My Arms

Back a few weeks ago I was really having a hard time - as always.  Living day to day and just feeling down.  But I noticed that when I talked with another NICU mom I would try to put a bright spin on what was going on with her child.  I could look at the brighter side for her child, but why couldn't I do the same for mine?  Why did I feel so downcast? I got to thinking and reflecting about what has brought me joy in the past and different instances when I was able to see the brighter side.

Ever since I was in high school I was the one on my cross country and track teams making locker signs and writing encouraging notes.  My personality shone through the ways I would serve my team.  I was quiet - still am, but loved to braid hair, loved to cheer teammates, loved to make locker signs, loved to make good-luck gifts.  I made a scrapbook for my sister at her graduation.  During college I would make cards and write notes to my sibs.  During my dating years I would draw cards, write out Bible verses, and make good luck notes for Joe.  Since kids that part of my life has pretty much died away, but it used to bring me joy.  I also remember how much I enjoyed encouraging others when I was a high school math teacher.  Kids would get down about math or about life and I really enjoyed talking with them to help them look at the brighter side, helping them to have hope.

So I thought maybe now in life's current circumstances I should rekindle some of those things in order to see more positives.  So I did something about it...  I found an encouraging blog post about NICU moms and posted it in the mother's pumping room.  I helped Joshua make a scrapbook wall hanging for a friend in the NICU.  I made a blanket for the same friend in the NICU.  I've initiated conversations with a couple more moms and gotten out of my comfort zone in order to help them look at the brighter side.  And in all of it, I'm seeing a little brighter side too.  It certainly helps that Joshua is improving.  And there are still many days when I am still struggling with life, but digging up this passion of mine to encourage and love others in verbal and tangible ways is finally helping me cope with all that is going on.

Another thing that has helped me cope is a kind woman I've met...There is a wonderful clerk at the desk when I walk into the first NICU unit.  She is a Christian and a true light.  You can just see Jesus shining in her eyes.  She often comments about my smile or the light she sees in my eyes.  Sometimes I think she is crazy when she tells me that I'm shining a light here in this dark place.  I don't feel like I'm shining Jesus in this time when I'm trudging through life day to day.  But I'm trying to see that God can use me here, in this awful place to be a light to the people that I meet.  Even with my quiet, boring personality, somehow this clerk sees a light in me.  She encourages me with scripture, she encourages me when I tell her about Joshua's progress, she asks about my other kids, and homeschooling, and Joe.  Working in this setting she knows how hard it is for babies to make real progress..."Inch by inch is a cinch, yard by yard is too hard."  is what she likes to tell me.  She has been through quite a lot of things in her life and knows how hard it is when you struggle to put your hands together to pray.  She says she is helping me "exercise my arms" to lift them up to the heavens, to thank and praise the Creator for my little miracle.  I pray that someday I can have that light and hope I see in her eyes too, shining for Jesus.  Thank you Lord for Donna!

Right now I will try to keep encouraging other moms that I have met and try to initiate friendly conversations with the other doctors, clerks, environmental services staff, and nurses.  And I pray that God uses me as a light for as long as we are here at Children's and gives me the courage to do so...and gives me grace when I feel so overwhelmed with life that I don't have the strength to step out of my problems and smile.

First Bottle

Today was your first bottle.  It was exciting, but a little anticlimactic because you've done so well at breast and I'm a breastfeeding mom, so ultimately I don't even want you to drink from bottles regularly.  BUT it was a NICU milestone and I wanted to be the one to feed you the first bottle.  You did great - no brady's or desats.  In 30min took about 32mL of the 50mL bottle; they fed the rest through your tube.  The nurse said you do so well with your sucking, swallowing and breathing.  Taking breaks to rest and catch your breath and then starting back at it.

I much prefer breastfeeding, but it has been a hard balance between figuring out how to pump and breastfeed and keep my milk supply up.  It is hard to get on a schedule of pumping so that I am able to come in and feed you and be full enough for you to be successful.  There is a huge learning curve for Mommy on this combo pumping and BFing and I'm praying I can keep my supply up so we can be successful to exclusively BF some day.  Then I can donate my 8+ gallons of milk in the freezer!

Baby Blue

Trying out the hat mommy crocheted.
It fits just right.

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100!

Today we hit 100 days of life!  I hate it that we have been in the hospital so long, but at least when people ask me how Joshua is I can honestly say he's making great progress!  He's had a good day!  Thank you heavenly Father for finally helping us turn a corner.  Thank you for letting us *breathe* the past 5 days!  For progress without instantaneous back-sliding.  For progress that we get to rest in for more than 24 hours!  Thank you Lord!  Thank you for a good eye exam.  Thank you for success on the high-flow cannula.  Thank you that Joshua's belly is tolerating 25% breast milk, 75% alimentum so far.  Thank you for success in sucking, swallowing, breathing!  Thank you!

Yesterday I tried non-nutritive breast-feeding again.  The lactation consultant was right there to keep an eye on Joshua's stats and again he did great!!!  I felt a let down and asked if I needed to stop because he was swallowing and getting more than previous times...nope we'd just pull everything back out.  So Joshua fed for 10+ minutes and got 12mLs!!!!!!!!!!!!!!!  And again Chris the lactation consultant said, "Well we knew you were a tv star, but we didn't know you were going to be a rock star at feeding too!"

Still so little

Look at me holding you...you are still such a little boy.