No attachments!

No tubes, no wires!  That's you about 99% of the time!  I am still not quite used to it.  I pick you up from your play mat and don't have to thread you back through from the place you scooted from.  I can pick you up and not worry about me or the kids tripping over tubing.  The concentrator (aka portable heater) is not heating our house to 100 degrees on those hot spring days we've had!  I can take you WHEREVER I want to in the house and not worry about if the tubing will reach!  You seem so light and portable!  I don't have to hook you up to an oxygen tank to wear you in the ergo!  Going to church or on a walk is so much easier!  And I'm finally getting used to your new "look" with no tubes and stickers on your face.  You looked so different to me the first couple weeks without your old accessories!

The reason I haven't posted about how well you are doing is because for some reason I feel superstitious and feel that if I post something about you no longer needing oxygen then something will happen and we'll need to break the cannula back out.  But pretty much you spend the whole day tube and wire free now.  We will hook you up to the pulse-ox at night or during the day if you aren't acting like your normal self to do a "spot-check"  (The pulse-ox is not very accurate if you are kicking and active so we can't leave it on or it would be constantly beeping!)

Even the times when we have been concerned that your O2 saturation may be low because you are not eating well, or sound congested, or sound wheezy you still sat about 95% which is the minimum of where you need to be.  Each night I watch the numbers thinking they are going to drop low, but they don't.  Daddy also has had many nights where he saw 95, 96, 94, 96 and felt that you weren't going to stay high enough, but you did.

Right now as I write this you are bouncing back and forth between 96, 97, 98.  And we had never seen 100%........ until tonight.

You are too active.  I can't sit and hold you anymore.  You bounce and are fussy,  squirm and cry, want to move and never want to snuggle.  It is pretty irritating to hold you when you are like this so usually that means we just put you to bed and let you fuss till you fall asleep.  But tonight I had endurance through your irritating behavior and eventually you fell asleep on my chest in the kangaroo position (although we weren't skin to skin)  After about a half hour of holding you this way you began to wheeze and it didn't stop, so Daddy got out the pulse-ox and hooked you up.

100%!!!!!  and it picked up right away!  I guess the kangarooing is still good for you!  So many, many hours of holding you like this...and it really did help you and it still is!  I love snuggling with you, I just wish you would settle down more easily so I could snuggle more often!

Two special visits

Last week you had two visits from some very special people.  On Thursday one of your primary nurses, Suzanne, came to visit.  It had been over a month since she saw you at a BPD appointment.  It was so good to see her and catch her up on all you have been up to.  She got to hold you for the first time with no gown or gloves, to just love you and get smiles out of you and just see how far you have come.  It was a wonderful visit and we talked a little about your stay in the NICU.  She talked about the one day she was working and how your lungs were getting worse and they had to up the ventilator setting to keep your sats up.  One of the NNPs came in to talk with Daddy and me about a new diagnosis that they had found for you, PIE (Pulmonary Interstitial Emphysema) but she continued to say that for as many bad diagnoses that you had, they rarely escalated to need the severe interventions.  Joshua, you gave us many, many scares, but the Lord had mercy on you and we are so very grateful!!! 

Forgot to get a new photo of you two when she visited - next time!

Your second visit was from Mommy's friend Tiffany.  She lives 2 hours away, but has visited you more than any (non-grandparent) relative or even more than any of Mommy's friends from Columbus.  She was not afraid to see you in your most sickly state just after you were born.  She cried with Mommy and always checked up to see how you and I were doing during those long hospital days.  Mommy is so grateful for her friendship!  It was so exciting that she got to see you and hold you after all that you have been through!  She was amazed by how active, smiley, and alert you are!  You bounced on her lap and gave her arms a workout.  You are my little miracle and the people who saw you at your worst understand the most just how much the Lord has been with you every step of the way!

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Hey! Look what I can do!

In the past week and a half you have hit two milestones...

I held the WHOLE bottle for the first time!
You don't do this every time though!  and....

You found your feet!  Yay for working those abs!

Big sisters are the best!

Abby loves all her brothers, but you are definitely her favorite, Joshua.  Why wouldn't you be...you can't talk back, say no or runaway.  You are a captive audience!  She is a little mommy to you and very helpful to me.  She can comfort you even when I have tried and failed.  Sometimes I wonder if she does a better job with you than me.  When the physical therapist comes to the house she sits down with us and answers there questions right along with me.  "Yes, he does _______, no he doesn't  _________."  Most of the time she is really gentle and handles you very well.  She protects you from your older brothers who like to get a little to crazy or rough around you.  She reminds them to wash their hands before touching you.  She reads with you, plays with you, gives you your wubbanub, works on tracking, sitting, reaching, head control.  She has undivided attention to give you, and me...well I struggle with balancing your needs and everything else.

She got a camera for her birthday and loves taking pictures and videos of you...here are some of them from the past month....I love seeing the moments she captures playing with you!

Mid-sneeze!

Abby's idea because we have 4 kids now!

I think David took this one!

That boy loves to chew his cannula!

A Jeremiah sized 5 diaper on Joshua!

Happy Mother's Day!

It is fun because I remember taking pictures of Aunt Hannah with my first camera.  I am about the same age difference from Aunt Hannah as Abby is to you...although Abby has a lot more pictures - digital photography is great!

BPD clinic - 8 months

We went for your monthly BPD clinic visit Thursday morning.  The older 3 went to the kids clubhouse.  It was the first time they had been to NCH since November...weird to think about...brought back many memories.

Anyway, you had a great check-up and I was pleased with the doctor this visit, unlike others.  You were 5.95kg = about 13lb 2oz and you were 24 inches long...twice your birth length!  Your weight still wasn't back on the charts, but you had caught up enough that they weren't as concerned.  The dietician said to keep doing what we are doing with nursing and bottles.  You are taking about half bottles now and half BFing.  Although the BFing is really stressing me out because milk doesn't come out of me like it comes out of the bottle and you don't seem to like it from me anymore.  I'm not sure how to continue...BFing vs pumping vs weaning.  I really want to give you breast milk till your first birthday, but every day feeding you is so stressful!

So the big question was how to wean your oxygen...this doctor wanted to go cold turkey off the O2 again, but I told her we needed a pulse-ox if I was going to try that after what happened in March.  So she agreed to switch the apnea monitor out (yay!) for a pulse-ox and once we get that we will take you off the O2 and monitor you.  I'm a little more confident this time that you will be successful...last time I had a gut feeling you wouldn't be.  We'll see how it goes!  We need to keep your sats above 95% or put you back on the oxygen.  Other topics of discussion were your hernias, hydroceles, and IVH.

I asked to speak with the PT too because I was a little concerned you weren't progressing as well as you should. (plus I love our PT and wanted her to see you again)  After a long discussion we decided we would wait until next month's developmental assessment before we decide if you need more therapy.

So I was playing with you on the floor after we got home and I seriously think you must have heard my discussion with the PT.  I did our normal work with your abs and trying to sit and roll over etc...but this time you actually pulled up and used your muscles!  And you did it with a HUGE smile on your face!  You were like..."Hey mom, I can do this!  I am strong, don't forget that!  I don't need any extra help with the therapists, I just need you!  You are doing a good job, all your work is paying off."  It made me so proud of you to see you applying some resistance and pulling up with your abs and arms.  We have some more work to do, but I think we will impress Kim at your next clinic visit!

Little scooter!

You are 5 months corrected now...and today I turned around when you started whining and found you like this...

Digging your heals in and sliding up on your back!
You started out in the middle of the blanket
under the activity mat!

We are not ready for this!  Time to think about baby proofing the house again!  Hopefully you will get off your O2 at your next appointment because tubes make this a little tricky.  We have to pull you out from under the play mat with those tubes of yours.  Our little scooter!

Rejoicing and Celebrating!

This weekend was a very special weekend for you Joshua!  We had a lot of family coming in to celebrate your NICU baptism which was back on November 18, 2013.  We had a public recognition of your baptism at the church service.  Grandma and Grandpa W came in early, Aunt Hannah too to help get everything ready.

Sunday morning came and we dressed you up in your handsome little Easter outfit and off to church we went.  We asked the pastor if we could personalize the service, so when the time came, the six of us went up to the altar.  Daddy introduced our family and thanked the congregation for all of their prayers.  And told a little bit of your early start to the people who did not know how fragile your life those early months.  We showed one slide of photos from your birth and one slide of photos from your baptism day as Daddy spoke and I held you.  Then Pastor Eric went through the service similar to a dedication but acknowledged your baptism in the NICU, our faith and commitment to raise you in the Lord.  He anointed you with oil and prayed for you.  I walked to the front with your oxygen in tow and gave you to Pastor Eric so he could hold you up and show you off to the congregation a little more.  The congregation gave the Lord a standing ovation, seeing the work He has done in you is truly a miracle!  Several people commented that there was not a dry eye to be seen.

Daddy thanking the congregation and telling your story.

What an exciting day!  but all you wanted to do was
look at that interesting hand of yours!

After the service we had 18 adults and 11 kids at our house for lunch with family.  The food was good, there was plenty to go around (which I was a little worried about) and it did not feel crowded.  We opened some presents and then it was time for round 2...open house for people at the church.  An additional 30 people had rsvp'd, so I was a little nervous about 60 people fitting in our house, but the Lord blessed us with decent weather so people could go outside and people came and went and it never felt too crowded to me.

You got passed around to different family members who held you so Mommy and Daddy could visit.  This was a little nerve-wracking to Daddy and me; you have never been around so many people or been held by so many, so we prayed for your health and so far the Lord answered and you've remained healthy.

This has been such a long journey, but the Lord has answered so many prayers.  The Lord sustained your life.  He deserves so much thanks and praise for how far you have come!  We have been waiting over 8 months for this day!  This day to celebrate your life and show you off a little.  The service ended with this song.  A song that really could not have been more appropriate so I stood and sang it to the Lord with tears in my eyes and tightness in my throat.

How Can I Keep From Singing

There is an endless song
Echoes in my soul
I hear the music ring

And though the storms may come
I am holding on
To the rock I cling

How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing

I will lift my eyes
In the darkest night
For I know my Savior lives

And I will walk with You
Knowing You'll see me through
And sing the songs You give

I can sing in the troubled times
Sing when I win
I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer
I can sing with my last breath
Sing for I know
That I'll sing with the angels
And the saints around the throne