Wednesday, August 22, 2012

75 days old. 8-23-12


I know I haven’t blogged for a few days.  I have been busy.  This past weekend we decided to stay home since I was fighting a cold and we didn’t want to share germs with the little man.  I slept for a lot of the weekend and ended up feeling a lot better by Monday.  Monday was a great day for us.  We woke up late and didn’t have a very restful night of sleep but walking in the NICU to see Jordan on CPAP was the perfect day changer.  They had said that they were going to put him on CPAP on Monday but until he was actually on it, I wasn’t going to get my hopes up…or I wasn’t going to admit that I had my hopes up.  Lol.  It was so great to see him on the CPAP though.  We are so blessed with Jordan.  How amazing that he has graduated to this awesome step.  He is no longer considered to be on life support! What an awesome miracle his life has been.
Since they had just changed to CPAP, he was a little unstable with his breathing.  They told us that it takes a couple of days for him to adjust to the lower level of respiratory support.  Jordan also didn’t seem to like the CPAP mask at all on Monday.  I think he was glad to have the tube out of his throat but the mask over his nose was not working for him.  He kept trying to pull it off or move it with his hand.  Even when they tried to put his hands under the blanket he still managed to get them loose and mess with the mask.  Some of the faces he makes looks like he is trying to cry.  I can’t wait to hear his cry.  That seems like a weird thing to be excited about.  
Yesterday was a home day.  We did a lot of cleaning and then we had some friends over for dinner.  It was nice to do something different.  Looking forward to when Jordan can come home and be with everyone.  Yet also in all honesty I am scared of him coming home because I am not as qualified as his awesome nurses and doctors.  But I know by that time they will make sure I am ready to take care of him on my own.  Jason had so much fun having his friends over yesterday.  He loved showing them all his toys and having his own stuff around him!  It was cute to watch him. 
This morning we got an update from the email about a few things that they were doing to help Jordan’s breathing to stabilize while on CPAP.  They are giving him a medication that makes him pee more frequently.  They are also only giving him IV nutrition.  This is to eliminate the extra fluids that could make him bloated.  The CPAP machine causes a lot of air to go into his tummy so they have to take that air out so that his tummy doesn’t bloat and push up on his lungs. 
Today they placed him on a different type of CPAP.  It looks more like the oxygen nasal prongs except the prongs fill his nostrils.  This one is a little different but it doesn’t put air into his tummy like the other one so it is better for him.  They have the pressure setting high and the oxygen setting high as he is stabilizing.  He was doing a lot better today.  His oxygen was staying stable with very little Desats.  He also seems MUCH more comfortable with this new CPAP because it’s not a big mask but just a small tube.  He still messes with it but he doesn’t seem extremely irritated anymore.  Today his CRP was up a little so he was given a small dose of antibiotics.  It’s at 1.3 CRP but after the antibiotic it went back down to 1.0.  He is having a problem making platelets.  The doctors believe this is because of bone marrow suppression that is caused by having back to back infections and being on antibiotics for a long time.  They treat this by giving him a transfusion.  If they didn’t give a transfusion he would be at greater risks for bleeding.  Praise God he has had no bleeding in his brain whatsoever.  He also has one swollen lung.  This is normal for Chronic Lung Disease babies and it is improving with the CPAP.  He is actually doing very well and making a lot of progress.  We are so blessed.
Today since his oxygen levels were stable while we were there they decided to allow me to hold him outside the incubator.  This was the first time that I had actually cuddled him in my arms.  It was very amazing.  I was so very happy to be able to cradle him.  He even opened his eyes and stared at me for a while during the cuddle time.  I gave him a few kisses on his little head.  These were his very first mommy kisses.  What a special moment that I will always remember.  I have been looking forward to holding him.  Although it is amazing a perfect it’s also a little scary.  He is still so tiny and seems to me to be fragile.  It’s like he is my perfect and amazing baby but I once again have brand new mommy syndrome where I feel like I have no idea what I am doing or what I am allowed to do.  LOL.  I remember feeling like that with Jason but it’s a little different with Jordan because he is so much smaller.  Hopefully on Friday we will be able to start kangaroo care.  This is skin to skin contact.  It is beneficial because it maintains body temperatures but it also allows him to reconnect with me and the sound of my heartbeat.  It allows us to basically bond again after being separated so abruptly.  Most mommies get to cuddle their newborns right away.  We had to wait until he was almost 11 weeks old to cuddle ours.  Let me tell you, it was worth the wait!  He is absolutely perfect in every way!!
Lord thank you for the three wonderful guys I have in my life.  I have an awesome husband that loves me for being me.  He treats me like I am beautiful and supports me in ways that only a soul mate can.  I am honored to share this journey with such a loving man.  I praise you for bringing Jason into our lives two and a half years ago.  This very handsome and energetic little boy is a huge reason for the joy and laughter in our home.  He brightens our day, makes us smile, and loves us unconditionally.  We are beyond blessed to be his parents.  I praise you for the miracle that you have given us in Jordan.  This little body against all odds survived his early birth and is thriving.  He is fighting daily to overcome the issues that surround his prematurity.  You are working in his life daily and are allowing us to watch your work first hand.  You have timed out the many moments that we share to be perfect and complete.  You do miracles in his body daily.  We are beyond blessed to be his parents.  I ask that you would continue to watch over my family.  I pray that you would give Jacob guidance and purpose as he thinks about his schooling and his career.  Show him the paths you want him to take and lead our family behind him.  I pray for Jason.  That you would continue to give him the energy that makes his life full and exciting.  I ask that you would help him to learn the boundaries of life at our teaching.  Help us to teach him honor, respect, and most importantly, your love.  I pray for Jordan.  I ask that you would continue to allow progress to be seen.  I specifically ask that his breathing would stabilize and that his body would resume natural production of platelets.  Give him strength to fight each and every battle.  I ask that you would allow Jordan to outgrow every effect of his severe prematurity and allow him to lead a normal and healthy lifestyle.  Allow him to be a testimony of your power and grace.  Lord thank you for your blessings.  Guide us along this path and allow us to lean on you in our moments of weakness.  Give us strength, patience, and rest.  Lord please be with the plans for our move.  Orchestrate everything to be perfectly and smoothly and send us to a place where we can be used by you.  We thank you for giving us life and showing us what the meaning of love really is.  In your name, Amen.

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