Update on our rollercoaster week!

Let's see!  We finally made it out of isolation and were doing great early this week.  The doctor started our 7 day countdown to go home because Lenwood hadn't had any brady's since the 22nd.  Yesterday, on Day 3, he started having bradys again - 4 to be exact.  Not sure why.  They'll be running some tests tomorrow to see if he's sick or might need another transfusion.

Maybe he just misses his mom.  On top of all that, I haven't been able to see him since Thursday night.  Friday morning Conrad and Teague were diagnosed with micoplasma aka walking pneumonia which is highly contagious.  Guy and I are doing a round of antibiotics to be safe.  The doctors think it best if we stay away.  I will possibly get to see Lenwood tomorrow with a mask, but they want to confirm that it's ok with the infectious disease person in the hospital when she arrives in the morning.  I miss him so much that I just don't know what to do with myself.   I've tried to stay busy and distracted all weekend, but it's been so hard.  I'm trying so hard to stay positive and focus on the fact that I will get to bring him home in time, but not seeing him is tearing at my soul.  I was barely surviving that by focusing on it being just a few more days until we could bring him home.  Then the bradys returned and well....I just can't even describe it.  I just can't.  There just are not words to describe how awful it is to not be able to touch him, hold him, and smell him  He is six weeks old today.
When you have a baby, every part of your being feels like you should be caring for your baby.  With a NICU baby, there's so much that a mother just cannot do to help her baby.  The one thing I've been able to do is be there with Lenwood even during the first weeks when I couldn't hold him or hardly touch him,  I could be there and talk and sing to him.  What do I do know?  I still pray.  I still pump milk and deliver it to the NICU door (heart wrenching to go and have to walk away).  Mostly, I just ache for him.

Let's see...I know this isn't my usual positive post, but I just wanted to be honest and not try to sugarcoat it.  It stinks and I'm so sad, but I'm going to end with something positive and try to remember this:  He will come home.  I will hold him again.  I will kiss his face again.  I will smell his sweet skin again.  I am so blessed because he is growing and breathing and one day this will all be a faint memory and happiness will fill our home as the laughter of three boys floats through the air.  I am blessed.  Thank you, God, thank you.    'For I know the plans I have for you,' declares the Lord. 'Plans to not harm you but to prosper you. Plans to give you hope and a future.' Jeremiah 29:11

The Day of FIVE

So, today Lenwood is FIVE weeks old and his weight is FIVE pounds!  He's also got IV number FIVE put in for his ten day round of antibiotics.  He doesn't have five IVs in all at once.  They  keep getting to where they are not working and they have to remove one and put in another.  He's had one in his head, one in both hands and one in both feet.  He seems to be doing better.  They'll check his white count again tomorrow and if it's back in normal range we'll likely get to at least get rid of the gown.  Might keep the mask and/or gloves a few days.

He's up to 60cc feedings every 4 hours and seems to be tolerating this well.  They are also stopping his caffeine.  He's only been having one brady every couple days since the reflux was addressed and he received the transfusion, both on Thursday.  It's possible he'll have more once he comes off the caffeine, but maybe not.

Thank you for the prayers!  They are working.  Please keep them going.  He still needs them.  We aren't at the end of our NICU journey just yet, but hopefully we are getting closer.

Isolation

Update: Aug 20th

Just got some positive news from the nurse: The part of his white count that was dropping has doubled since yesterday. Yeah! Not sure if this gets the count back in the normal range or if it's still low, but I'll find out when I visit at 4pm. I was so excited that I forgot to ask.

August 20th

Promise I'll get some complete updates in here soon, but right now these quick updates are the best I can do.    Our visit to Lenwood last night was really difficult.  It was heart breaking to have to suit up from head to toe to touch your child.  He was not acting well either.  He wouldn't take his bottle and then spit up more than he'd drank.  They felt it was just that he was worn out from all the extra activities (tests, moving rooms/beds, getting transfusion, etc.), but it still worries a  mom sick.    They decided to feed him by tube during the night to let him rest.  When I called at midnight he had perked up and  was so alert that his nurse decided to give him his bottle.  He did great with it.  I've talked to them several times since and he's continued to do well with his bottle and hasn't had any bradys.  Continued prayers that diagnosing and treating the reflux in combination with getting the blood transfusion will give him the strength he needs to get over whatever he has and get well enough to come home.  It gets harder everyday not to have him here.
Today is Mommy Day with Conrad and Teague so we're off to try to have some fun.  My heart is elsewhere today, but I'm trying.  I love and adore these three boys so much and it's killing me to have them separated.  We are so ready to have our family together.  I know it's in God's hands and I trust him to do what is needed for everyone in our family, but some days it hurts more than others.  The last few days have been those kind of days.  However, I am thankful that Lenwood got sick before he came home and not after.  he is in wonderfully capable hands there and I know they will, with God's guidance, heal him and make him strong to have a full, healthy life when he comes home.

Another update

Please continue praying for Lenwood.  He's receiving a transfusion as we speak (his third) and has been moved to an isolation room due to his white count continuing to rise and drop, rise and drop.  It's been low the last few days.  They'll be testing his immune system tomorrow.

Update

Lenwood has grade 3 reflux (4 is the worst).  His hematocrit is getting lower (29) so he may need a transfusion today or in the next few days.  They haven't mad rounds yet so i don't know what they'll say.  It's been a busy day in the NICU.  Pray for them too!  They are wonderful!