Thursday, August 09, 2012

Inch by Inch

Today Micah is 4 lbs 7.6 oz.  We call every morning around 2 or 3 am to check on her.  We ask about her oxygen.  We ask how she is laying, did she digest her food, and how much she weighed.  If there are labs we ask about those too, although she does not have them often any more.  Her Hematocrit (sp?) came back at a 27.8.  They wont transfuse until she is below 26, so this always makes me nervous.  Her RETIC (a test to make sure she is in fact making her owb blood) came back higher.  So we know she is making her own blood, but she needs to make more.  She does look a little pale.  Also she has a bad diaper rash that makes me super sad.  They have to add nutrition to my breast milk and they switched what they are using and she is having loose stools that seem to be the culprit here.  They got a prescription Butt Balm today!!  LOL.  Hoping that works.  Also she is able to be held TWO times a day now!!!  When we hold her, she becomes putty!  SHE LOVES IT!  Her SATs are good and she relaxes.  She got her PICC line out the other day and we are praying she will not have any more infections.  Infection is a big culprit in the hospital.  You would think it would not be such a problem, but it is.  Several babies have been diagnosed with MERSA already.  We have had 2 contact isolation's we have gone through in our NICU rooms.  They require you to gown and glove before you interact with your baby, so in other words, no skin to skin touching...try telling your crying baby that!!!  Then when your baby's test comes back clear, you can resume contact. The first time this happened, Micah was very small and we were not able to hold her as much, so it was hard. The other week it happened again, and it was very difficult.  I am hoping it does not happen again while we are here.  The eye doctor came by yesterday and said her eyes are looking better!  I am still so pleased with how the doctor handled this with Micah.  She is doing super well on the C-PAP.  They decreased her pressure 2 days ago to a 7.  The doctor told me the plan is to decrease it again on Monday (13th) to a 6.  Then HOPEFULLY (PRAISE GOD!!!!) on Thursday (16th) she will go to Vapotherm!!!!!!!!!  She is very ready to have her cute little trunk off.  It is a blessing though, and we do our best to help her get comfortable with it on.  Then, once stable with this, we will begin to breast feed for nutrition.  She has to suck, breathe and swallow, which can be hard for preemies.  I know it may take some time, and I am willing to have the patience with this upcoming process.  She has been doing well with the non-nutritive, so it gives me hope that she will do well when it comes to eating for real.  Her Occupational Therapist said she is doing very well and has had no problems with her muscles or joints.  Her Pulmanologist (lung doctor) is also very pleased with her progress and says we are doing wonderful.  He has talked with us several times about making sure when we go home to really keep Micah away from crowds and sick people. 

I continue seeking the Lord in this season with desperation.  I am tiring, but I know I approach the finish line soon.  I think about how easy it is to give up sometimes.  Remember the story I wrote about several months ago about the swimmer who was going to beat the world record and gave up because of the fog and when she got in the rescue boat she was literally only feet away from the finish?  I don't want to give up when I know the Lord is working!!!!  It is easy to want to give up in this life sometimes.  We feel like we are done and just can't go on, but the best times I have ever lived through were the tough times, because they really do decide who you are.  I have not always been proud of my responses, but I know that I have sought the Lord through those times and I know they have always brought me closer to Him.  However, if we are alive, then God is not done with us yet!!!  Another day will come.  Another season will come.  Things wont always be this way.  If I know what I live for, then I must live for it.  I do not want to just say that I do, but here again is an opportunity to believe well.  I trust the Lord.  I follow His truths, and I will Trust Him even in this time. 

Saturday, August 04, 2012

The Hardest Thing

The hardest thing beyond a shadow of a doubt is protecting Micah from the spiritual realm in the NICU.  More and more I find myself in tears as I leave her there knowing that I have no control over who says what near her, what goes on around her, what music plays nearby, how nurses, doctors, and other hospital workers treat her...do they acknowledge her...or is she just "the baby over there"?.  Can a nurse really understand my struggle when I see my child crying and can't do anything to help because of the wires, gadgets, feeding tube, alarms, and worrying if I am stepping on their toes?  Can the doctor truly sympathize and say "I know this is hard?"  Can they actually expect me to come visit my daughter for several hours a day and that be enough?  Could it?  My question when I am confronted with someone thinking I am there too much is...what else in the world would I want to be doing?  My child at this age would never have to be apart from me for one moment.  I am not one of the NICU parents that simply visit for a couple hours and then somehow feel like I am done for the day.  I want to learn Micah at every moment I can.  The fact that they sometimes are surprised at how much we are up there or call to check on her is beyond me!  I just don't get it.  Micah is my heart, my joy, and a delight.  I know I have to rest.  I have learned that years ago when I struggled with my disease.  If I don't rest, then I get sick.  But this season, Micah in the NICU and me being there with her, is not me pressing myself in anxiety or worry...my being up there is because she is my daughter and that is where I belong.  I am taking great care of myself and feel like the Lord is giving me the right guidance to do so.  When I am tired, I rest.  But for people to assume that my presence in the NICU is from panic, and not love, is so strange.  In fact we are in a room there in the NICU where several babies NEVER EVER EVER are visited by ANYONE!!!!!  It hurts my heart!  So this is my present struggle today.  I pray for a spiritual hedge of protection over her all the time.  I pray the worship music we play is what she hears.  I pray that when I call the Lord somehow strengthens her spirit.  I pray that we get nurses who Believe in Jesus.  I pray that Micah gets well soon and can come home.  I pray that nothing that is not of Jesus will impact her right now.  I pray, I pray, I pray....

Thursday, August 02, 2012

SUPER SQUIRREL!!!

Just a quick update...Micah is doing FABULOUS on C-PAP!!!! We are all so amazed at the strength and healing the Lord is giving Micah!!! She has been doing so well breathing on her own!!! The doctor said the next step is Vapotherm. This could be a matter of several weeks. Micah has also been doing really well with the non-nutritive breast feeding! We have been able to practice 3 times already and she is really doing well. Once we switch to Vapotherm, we will be able to breast feed for nutrition. It is a sweet blessing from the Lord and I am very happy to be able to comfort Micah in this way. Our holding times have been incredible!!! The shortest we have been able to hold her is about 2 hours. Today I held her for 4 hours!!!!! I felt so happy. I am able to move her, switch her positions, and kiss and touch her without being worried about it bothering her.  Don't know if you read updates from Bryan's blog, but several weeks ago we elected not to do a spinal tap and just do an extra week of antibiotics.  She had 2 infections and normally they check for meningitis as well, but we felt the Lord telling us to not have the spinal tap done because it is very invasive and they were already worried they would not get any fluid out to begin with to test because she is so small.  So she still has one more week of medicine left and then we can take her PICC line out and as the doctor said...."Be done with that chapter!!!"  Thank you for praying!!!

Micah on C-PAP!  Hip-Hip-HURRAY!!!!

Gracey on C-PAP!!!!!!!!! LOL!!!!  We brought
this home for Gracey to sniff and HAD to
try it on her!!

Look at that sweet face!!!!  She was holding her
binky all by herself!  What a BIG girl!!!