A Bit of a Plan

Micah had another trial without oxygen yesterday morning.  He didn't fare any better than when they attempted on Monday :(  Truly, that is the only thing that is holding him back from coming home!  The doctor said that they'd try again on Monday, but he also decided to prepare for contingencies. 

If he does pass his test on Monday, that would be awesome!!  He'd be monitored until possibly Friday before coming home.  In many ways, we'd prefer this option.  So much less to deal with! 

If he does not pass, the plan is for him to go home on Monday, but with oxygen, and a heart/lungs monitor.  With this option in place, Eric and I got trained on how to use the monitor, and let me tell you that the alarm is SUPER annoying!  The good part of this scenario would be that he would be home more quickly, and he would only need to be on the monitor when he's not being supervised (i.e. naptime, in the car, bedtime, etc.).  But, he would still need to have oxygen at all times.  We'd have to regularly check in with our pediatrician, too, to ensure everything is going OK. 

The only other things left to be done are the hearing test, car seat tolerance test, and circumcision.  I really debated on the circ. because he has already been through enough and it is not really a needed procedure these days.  In the end, we gave consent mainly because Levi has been circumcised.  We don't want to have a cause for teasing or animosity in the future. 

So, we're just in a holding pattern until Monday.  We're OK with that.  We like that there is a tentative plan in place and we're beginning to see the light at the end of the tunnel... for real this time :) 

On a side note, Micah is an eating machine!  At the beginning of the week, he was eating about 70ml of milk.  Now, he will take as much as 130 ml!!  He now weighs 8lbs 8.4 oz!  A big boy!  Oh how we love our baby and can't wait to show off his cuteness!!!

God's Will

As I was driving up to Green Bay yesterday, I was thinking about a conversation from the night before...

I'm so grateful that Eric is walking this road with me.  As Eric held his youngest son the other night, we conversed about how God made Micah perfect.  He is not a mistake.  God knew exactly what would happen with his birth and seemingly long hospitalization!  He has everything in his hands!  We were just marveling at that fact. 

We were also talking about what God has been teaching us through this ordeal.  Definitely a lesson in patience and not expecting that our son would stay unharmed/recover quickly.  This is not on our timeline nor Micah's.  It's on God's!  We have been attempting to rest in that. 

I've also been learning to both ask and receive help from others.  Eric and I tend to be pretty independent with most things and feel somewhat uncomfortable "inconveniencing" others.  We'd rather just take care of things ourselves.  This situation is one where we haven't been able to do everything ourselves.  Beyond the trusting the hospital staff, we have had to rely on others especially for Alena and Levi's care.  We simply can't bring them to the NICU with us, but still want to be with Micah.  Our family and friends have been great in helping us transition!  Many people have offered and somewhat prodded us to help us out.  We have needed that!  It's amazing when a friend says, "I'll take your kids tomorrow so you can go see Micah!"  without me even asking!  I need that!  I just have to let go of the guilt of thinking I'm inconveniencing people. I'm reminded that when I offer to watch someone else's child, I don't think of it as an inconvenience!  I'm more than happy to help!  So please, ask me to help you in the future, or I may just offer :)  That's what God's community is for, the good times and the not so great!

We have been drawn to rely on praying to God and knowing he hears us, whether we see it or not.  He is our refuge, and is certainly reminding us of that and deepening our relationship to Him through it all!  Thank you Jesus!

3/4 of a Corner??

Micah is still sitting at 1/8 of a liter of oxygen flow.  I can view that as both a good and not so good thing.  He certainly went down on his oxygen dependency, however, he stopped there.  On Monday, the doctor took the cannula off of Micah to see how he would do.  Within 10 minutes, his oxygen saturation level dropped to 74, so he put the cannula back on.  Obviously, Micah wasn't quite ready for that yet!  Afterward, the doctor told me that he would wait until Thursday or Friday to try it again.  Once he is off of oxygen, I believe that he still has to stay in the NICU for a few days for observation.

So, here we wait.  We know he is in great hands, but it is still an emotionally trying situation.  We are leaving our child at a hospital.  Now that he seems to be awake a bit more frequently, it is doubly difficult!  He should be seeing his family and home when he gazes around, seeing the trees sway.  Smelling our family's smells, how our house smells.  Feeling the cool air, his mommy's touch and feeling the warmth of the sun!

On the other hand, we trust the doctors and nurses.  Our other option is to have him at home, but on oxygen and with a very noisy monitor (so we've heard).  With 2 other kids in the house, I sense that having that apparatus at our house might not be an ideal option.  I suppose time will tell.  They're saying early next week he might be home. 

I stayed in the hotel by Micah until Tuesday afternoon and then went home.  Micah had been nursing really well, and the doctors saw that.  That's one huge box checked for his preparations for home life!  There are many babies who are off of oxygen, but aren't home yet because they are unable to bottle feed or breastfeed well enough.  Thankfully, that is not our issue!  I know that my other kids need me, too.  Life has been kind of crazy for them with someone watching them for at least a period of time every day.  They can't go to the NICU (age requirement is 13), and Eric and I feel like we need to see Micah everyday.  At least with having me home, Alena and Levi have a little sense of normalcy! 

Levi also has a cold, which is somewhat tricky for us.  I certainly don't want to catch his cold or bring those germs to the NICU!  I've just been doing a lot of hand washing for both me and the kids!  Pray that it doesn't spread!

Pray for the maturity of Micah's lungs!!  It's the one piece that is holding us back from being a complete family at home!!

Pray for divine patience and emotional strength to make it through what we hope is the actual home stretch!

So Thankful for Great Insurance!

Quick note to reiterate how grateful we are to not only have insurance, but to have decent insurance!  We just checked out our insurance's website where you can view claims.  Let's just say that the NICU charges a flat rate of $3000 per day, not including other incidentals, tests, or the bills from the Manitowoc hospital.  Thankfully, our insurance will be covering a HUGE amount of that and it takes a BIG worry off of my shoulders!!  And, that makes me sooooooooooooooo thankful!!! 

Turning a Corner??

So my Mommy-ness made me want to stay with Micah for the weekend.  I figured that Eric could watch the kids, and I thought that I could work on nursing with Micah!  So, I headed up on Friday evening.  Jeremy and Leslie Edwards met me there and got to snuggle with Micah, and sing him songs.  It's so sweet how they have been supporting our family!

Smiley, yet sleepy Micah on Thursday.

It turns out that between my Thursday 11am visit and my Friday 8pm visit, Micah had been doing great with his bottles!  Maybe that made me a bit jealous, but I thought I should jump on the chance to work on breastfeeding him!  I really wanted to make sure that Micah was more than OK with nursing when the time came for him to come home.  I know that he has to be able to take all of his feedings well before he can go home, and I have no intention of regularly giving him bottles!  I talked to a nurse practitioner, and he agreed that working on breastfeeding wouldn't hurt.  It seemed like Micah certainly had the stamina and was ready for it!

I stayed Friday night at my dad's new apartment in Green Bay, and headed back to the hospital with the intention of staying in the hotel room for the next few nights. 

Thankfully, Micah picked up nursing right away!  He has been doing much better than previously!  In fact, he was doing so well that when he pulled out his feeding tube, they decided to just leave it out.  His oxygen level also changed on Saturday morning.  The doctor switched his cannula to a much smaller one with just 1/4 liter of flow (at 100%), and Micah did an amazing job!  His stats were great!

Eric brought the kids up on Saturday morning, and we spent some fun time at Bay Beach with Grandpa Cance.  It was a great day!  Afterward, Eric got to snuggle with his youngest baby, and I got to take the 2 older ones for a walk.  I found this great trail that is literally across the street from the hospital parking lot.  I burned off the rest of their energy (not that they had much left to begin with) before Daddy took them back home.  Grandpa Hawkins got to meet his newest grandson, too, when he and Grandma stopped by for a visit!

Out for a walk while Daddy visits with Micah.

I stayed and nursed him at night, and went back to Manitowoc on mid day on Sunday to pack up some supplies.  When I returned, they had switched him from 1/4 liter to 1/8 liter of flow, and he now has "ad lib" feeding times.  So far, he hasn't done as well with the reduced oxygen flow.  His oxygen saturation levels have been in the low 90's and dipping a bit lower at times.  I'm praying that he keeps up his hard work and raises his stats and tolerance level!  He has been needing to have his own feeding schedule for a while now, and the nurses know to call me whenever he's ready to eat.  He really has come quite far in the last 48 hours!!

The doc I talked to today guestimated that Micah might be able to come home as early as the end of the week or next weekend, depending on many factors.  Boy, this mama can't wait!  He has now been in the NICU for all 24 days since his birth... over 3 weeks!!!  We never would have initially thought that he'd still be in the hospital!  The doctors have said that boys tend to take longer to get better, and larger babies take longer, too.  With that in mind, I guess its not entirely surprising.  He is up to 8lbs 4.3oz! 

Peeking out from his swaddle that the nurse did for him on Sunday.

 

 

Happy birthday, Daddy!

Micah missed being home for Daddy's birthday (yesterday), but he said to send his love!  Today, Daddy got to hold him again, and Micah did a great job at melting Daddy's heart!  I think that Eric felt much more comfortable holding him today since his monitor wasn't beeping... at all!  That was a definite first!  Maybe he is starting to get better?!?  We noticed that Micah's weight had changed since yesterday.  He is up to 8lbs 2.3oz! 

Micah on daddy's birthday

Both are all pooped out while snuggling tonight!

He is also getting more of my milk, and the nurse asked permission to give him bottles when we're not there.  I don't really want him to want the bottle more than nursing, but the nurses assured me that they haven't seen problems with that.  The nurse said that it looked like Micah was soooo hungry and rooting at times.  She wants to help to soothe him.  I thought that maybe having a bottle every now and then might help him to get used to sucking to eat.  I told her that it was OK as long as it is not every time, or the feeding just before I arrive for nursing. 

A doctor that we haven't seen in a week or so stopped in to encourage us.  He said that Micah looks so much better than last time he was there, and that he is seeing improvements, though slower than initially anticipated.  It was so nice of him to stop by!

Thanks again to the friends who have been so gracious to us with watching Alena and Levi!  We all appreciate it!

A New Day

Like every other day for the last 17 days, I visited Micah.  He was up to 50% oxygen, and his monitor would beep whenever he got down to 95% oxygen saturation or below.  That is a significant change from the last 16 days.  The nurse commented that they're no longer trying to wean him off of the oxygen.  They want to keep his saturation high and not push him too much.  Of course, as parents, that's not exactly what we'd like to hear, and I think that Eric was a little discouraged.  I, as always, felt disheartened.

Before we left, we asked to talk to a doctor or nurse practitioner as they're the ones who are supposed to update us daily.  I always feel silly talking to them because up until now, it has been more of the same, day after day.  They'd say, "we need to take it a day at a time and follow Micah's lead."  Yes, I know that.  It also doesn't give me too much confidence or comfort.  I know he's being well taken care of, but it seemed like there were so many unknowns and we got vague answers.

Today was different.  The doctor asked us to explain what we understood as Micah's issues.  Eric did his best to summarize what we knew.  The doctor, in reply, went into more detail.  She said that Micah definitely has RDS (respiratory distress syndrome) which is common in premature babies.  She also explained that his chest x-rays have shown a bit of improvement - the pneumonia is pretty much gone.  A normal chest x-ray would show the lungs as black, full of air.  Micah's are various shades of grey, indicating they're not full of air.  She explained that Micah's lungs have looked more like a typical 32 week old baby's lungs rather than a 35 week old (which was his gestational age when born).  Given that, he should be starting to improve within the next 2 weeks as his lungs mature, getting closer to a gestational age that would have fully developed lungs.  She added that she is fairly certain that he also has high blood pressure in his lungs, also a reasonably common occurrence in his situation.  It seems that its another small complication to add to the mix, and one that needs gentle care.  He is still on the longer end as far as recovery time is concerned, but not out of the realm of normal. 

At that, I think things changed for me.  It helped me to realize that he probably does need a lot more time and help than I initially realized!  Quantifying his condition seemed to make things so much more clear to me!  The doctor added that if we don't see him improving within about 2 weeks, then we'd start looking at other options for additional help.  I feel like that is much more reasonable given the discussion we had tonight!  I now understand how the doctors changed tactics on his care:  they want to give him time to rest and heal.  They don't want to push him when he is simply trying to develop more!

It really is deceiving that he is so big, looking less like a newborn, and that everything else is so well developed on him!  Why didn't anyone level with us like that before?  In any case, I was so extremely thankful to the doctor for her frank conversation with us!  On the way home, I commented to Eric that I felt like a weight was lifted off of me.  I have more definite answers as to his condition and probable outcomes.  I now view his stay in a different, more secure, positive light!  Thank you doctor!