Beautiful day for a walk

All set to go - Jeremiah insisted on bringing his flag to wave.

First walk in his stroller, not the ergo or carseat.
Loves playing with his toys.

Back home

Milestones

Well, you turned "4 months" last week on the 12th.  You have been getting to be a very difficult baby and more and more needy as time goes on.  You once had no lung power to get a cry out.  When you came home you grunted and whimpered, now you have perfected your cry and it is more powerful and you get upset a lot and we often have no idea what is bothering you.  It makes Mommy and Daddy quite frustrated when we cannot figure out what you need in order to console you.  Often you just seem tired, but cannot soothe yourself and cry uncontrollably.  You have definitely become our most fussy baby.

Some days Abby can console you better than mom or dad.  You sure love your sister and the one on one attention she gives you!

You have hit some milestones in the past month...laughing, rolling from tummy to back, rolling from your back to your side, cooing, pulling toys to your mouth...

Today you hit a milestone that I never even noticed with my other three.  You transferred a toy from one hand to another!  That was a milestone I always saw in the baby books and chuckled to myself at. I never jotted down a day or looked for this milestone with your siblings because it is minor and really, pretty much every human being can do this milestone.  It seemed hardly noticeable and no big deal...but well, you are different.  And with you I noticed.  We celebrate every milestone with you.  With your severe brain bleeding and fluid in your brain we never take those milestones for granted!

One CRAZY night!

Last night we woke up to LOUD alarms a little after 1:30am.  It was Joshua's oxygen concentrator beeping because the power went out.  Very weird because there were no storms (turns out there was a car accident nearby and almost 5,000 people in Columbus were without power!)  We have never heard this concentrator alarm before, so once we figured out what was going on, Joe stumbled down stairs to get an oxygen tank and hook Joshua up.  I called AEP and reported the outage, then tried to go back to sleep.  It took a while for me to go back to sleep because at first I was trying to calculate in my head the number of hours of oxygen we had left in the tanks. (Most of the tanks are empty at the moment)  Then, all I could think about were the gallons and gallons of milk in my freezers that better not thaw!!! 

About an hour later we both woke up to more alarms!  Ugh!  So we check all of Joshua's monitors and machines again...nothing.  We begin to wonder if it is the smoke alarm.  So we change the battery by flashlight.  Nope that's not it...but changing the battery caused all the smoke alarms in the house to start beeping to synchronize.  This woke Abby up, and she told the boys to get up because they needed to get out of the house because there was a fire and they needed to get to the neighbor's driveway.  We heard the commotion in their room and told them it was just a false alarm to get back to bed.  What a cute. smart little girl.  She learned some good things at Safety town.  It turns out that the 2nd alarm was the carbon monoxide detector.  What a night! 

And Joshua slept through it all!!!
Thankfully the power came back on sometime before morning!

Clinic visit - 7 months

We went to our monthly clinic visit at Children's.  Two of Joshua's primary nurses met up with us right outside the clinic lobby.  It was good to visit with our friends again and they always enjoy seeing how much he has grown!

This month Joshua was 11lb 11oz and 23.5 inches long.  He had a developmental assessment with the PT.  We schedule our clinic visits on Thursdays just so we can have Kim, Joshua's NICU PT.  She is great and loves Joshua.  The two of them got to play during Joshua's assessment and she got some big smiles from Joshua!  She gave us some things to work on specifically with his stomach muscles because he really fights the sitting position.  This is pretty typical with micro-preemies who never developed those abdominal muscles in the womb because they were born before they were scrunched into fetal position.  And she also gave us some other typical baby exercises like tummy time.   Overall he scored average developmentally for an almost 4 month old.  We are so thankful for all the progress he has made despite his brain injury.

The dietitian was not too pleased with his weight gain, so no oxygen wean this month.  (Weaning O2 generally makes a baby work harder and in consequently burn more calories.  And with Joshua's history from the last wean where he did not have oxygen reserve to eat they kept him on the same settings)  I really wasn't surprised about the tapering weight gain though.  Between the days he was off oxygen last month and the days he ate poorly from his stuffy nose, it wasn't surprising that he tapered off on the growth charts.  The only concerning thing was that he actually dropped below the preemie chart.  So we're still on 0.2L and have at least couple months on O2.

The PT working on sitting with you

Cute little monkey!

I actually asked if a baby can look at his hands
TOO much - you do it all the time.
Thankfully they said no.

Our Little Miracle

Well, I admit, I went on Facebook during my 40 day Facebook-fast for Lent.  There was a legit reason (even though I did get a little sidetracked)  But during my quick check for info about our upcoming March of Dimes walk I read a post in a preemie group from a mom whose baby had just passed away.  My heart broke for this mom somewhere out in California whose little girl was born on July 4, 2013, and was about as small as Joshua.  This little girl, "their little firecracker" was now almost 9 months old and had spent every day of her life in the NICU.  In picture the mom posted of her, she is smiling and is cute and chubby and so happy looking.  If you looked past all the wires and trach she looked like a healthy little baby.  Her eyes were happy, focused, alert, and bright.  In her crib was the same Baby Einstein aquarium one of Joshua's nurses put in his crib.  I felt so sad for this mom who endured 4 more months of NICU life than we did and yet did not get to the exciting end, bringing her baby home.  As I sat there reading her posts and looking at her photos, holding Joshua asleep in my arms I felt such sadness, and yet such joy and gratitude and a little undeserving guilt.

Our journey in the NICU was often day to day, even through the first few months after Joshua was born he was still very critical and could not breathe on his own.  And like with this little girl who died, things could have changed for the worse with Joshua so easily, so quickly.  I am very grateful for all the prayers people lifted on behalf of Joshua and our family.  Our Lord heard these prayers and performed a miracle, healing our son.  But why our family? Why our son? Why are we deserving of such things?  I do not feel deserving, I had many dark, dark thoughts and struggles and yet the Lord answered our prayers.  Our son is home.  Life is so precious.  I am so grateful that I can hold my son (as I write this post one-handed)  grateful I get to see his smile, smell his sweet scent, kiss his soft cheeks, hear his giggles, and hold him close.

People could argue that it is modern medicine, but yet modern medicine does not "cure" all micro-preemies.  Doctors are not god; they can only do so much to sustain a life.

"The Lord gave, and the Lord has taken away;
Blessed be the name of the Lord."
Job 1:21

And the time in which Joshua was born shows Gods plan as well.  According to my OB about 10 or so years ago during the early days that she practiced, children born with their eyes fused shut were not given any resuscitation measures.  With Joshua's tiny eyes fused shut and an Apgar score of 1 at birth, he would not have made it out of the operating room.  Even with modern medicine it took a team of neonatologists 15 minutes to get Joshua's heart rate and respirations stable enough to leave the operating room and travel down to the NICU. 

Thank you Lord for our little miracle.  I know you have big plans for Joshua.

Our first big outing!

Well, we did it!  Our first big outing - just Mom and the kiddos!  I took all 4 kids to the zoo!!!  The weather was finally spring-like in the upper 60's and it was sunny and warm, but pretty breezy.  It was as good a day as any come out of our viral season hibernation!  We went with some friends from Springfield and also ran into several other friends who were enjoying the warm weather too!  It took a while to get the car unpacked and the stroller situated with all of Joshua's extra medical equipment and baby gear, but we saved some time with our handicapped hang-tag (because of Joshua's oxygen) so we could park front and center.

Joshua did great most of the trip.  He stayed covered in his car seat under the canopy of the stroller.  But when I took him out at lunch to feed him I realized that he has spent the first 7 months of his life out of direct sunlight.  Even going to doctors appointments we covered his car seat with a blanket to shield him from the cold...and this winter has been very cold and grey.  So this was the first time he saw the sun and he did not like it!  (or maybe it reminded him of not-so-fun procedures under bright lights in the NICU) Anyway, the sun coupled with the wind did not made for an easy feeding time, but I got him back in the shade quickly.  Hopefully this spring weather will stay soon so we can show Joshua more of the bright, beautiful outdoors!  One of the best parts of today...4 of us came back with rosy, sun-kissed cheeks.  Oh how I missed this!  Haven't had that since early August!

The older 3 thanked me many times for taking them out.  It is really a novelty to leave our house on a weekday these days!  They had a great time!

Planning out our trip as we wait for our friends

We made it!  All 5 of us!

I opened up the canopy to sneek a pic of our cutie

Joshua's first big outing!!! 

A great day!

7 weeks home! 3 months corrected!

Wow!  It is hard to believe Joshua has been home for just over 7 weeks!  The adjustment into the new normal has been pretty difficult.  Yes, there are more precautions we need to take with Joshua - keeping his weak immune system away from as many people and germs as possible.  And there is extra equipment that we need to carry around behind us or make sure the older kids don't trip over.  There is the fact that this is child #4 and bringing a forth child into any home will definitely make things more stressful in a household.  But overall the biggest part of the adjustment has been recovering physically, emotionally, and spiritually from the past 7 months.  So much was just dumped on our family and we went into survival mode.  We did what we had to do, we tended to the essential needs of our family and everything else went on a back burner.  Joe and I tended to Joshua's needs first, the older kids second, our personal needs next and our relational needs last.  It takes a while to recover from the stress of not knowing whether or not your child will survive...and if he survives what will be his needs.  And, for as much time as Joe and I spent with Joshua in the hospital, connecting with him is still so different than how we connected to our other babies because we had to guard our hearts for so long in case he didn't make it.

We still don't have all the answers on Joshua's health, but Joshua is doing quite well for all he has been through!  He is three months old corrected (from his due date)  He is hitting milestones like smiling, cooing, tracking objects, reacting to sounds, his movements are smooth, and his muscle tone is balanced.  We will have a while longer on the oxygen, but that is okay.  We had 6 days of oxygen only at night!  It was great to be able to walk around without kicking tubing with our feet, to be able to bring him around the WHOLE house without wearing a backpack with an oxygen tank on our backs, to be unattached to anything for the first time in his life!!!  But then the other day he started having feeding issues and just was much more tired.  So consulted the BPD clinic and put him back on oxygen.  The BPD clinic has been a little concerned about his weight gain and so we need to make sure he is getting his calories to build new lung tissue and catch up gradually to where he should be for his actual age.  So far so good.  Today is his 2nd day back on oxygen and he is back to eating really well!

He was 5.1kg or 11lb 4oz at his appointment on Tuesday of this week.  We are averaging about one doctor appointment or clinic visit per week.  The visiting nurses stopped coming after 6 weeks.  We went on our first walk this week when the weather was around 60 degrees.  It was so nice to get out even for a short bit!  I'm definitely looking forward to warmer weather when we can get outside and let our guard down a little bit and bring Joshua out!

First walk - March 10 - one of the days you were without O2

Comfy and warm snuggled up to mom