Seizure Activity

Caleb did not have his plication surgery today.  He had a seizure midday.  The ICU doctor said it was a clonic/ tonic seizure that lasted 30 minutes.  They had to give multiple medicines to stop the activity.  The medicines caused his blood pressure to drop into the teens so they had to work to get it back up.  He's had a cat scan of his head, has had an echo, and is now being monitored by an EEG.
Please pray for the little guy and the neurologists and entire team as they try to determine the cause and monitor him.  Surgery is postponed until this is controlled.  This was very scary for us and his little hands are stilled turned in and tightly clenched which they believe is the after affect of the seizure.  His entire sweet little head is covered in gauze to hold all of the sensors.  He's going to need a lot of work to get his hair back to his great hair styles he's had after this!

Moving x-ray to assess paralyzed Diaphragm

Caleb looks great today.  He sleeps great and has a lot of awake time.  He really wanted to suck on the ventilator and was even trying to fit his fingers in his mouth along with the tube-- didn't work.  He went on another field trip today, which is always a production requiring many to help get him set up to go and they bag vent him the whole way.  They took him down to fluoroscopy to do a moving x-ray which showed his diaphragm moving (or not-moving) and how it is affecting his lungs while he breathes.  After review, the surgeon said that Caleb needs to have the surgery to plicate his diaphragm.  He is scheduled for tomorrow.
On a different funny note, I'm attaching a picture of Zack's car that I drove today.  Thank you Greg for going and getting glue for the hanging side mirror and a headlight cleaner kit so that we can see!!!  For all that know Zack and his history of car issues- from a bullet in his windshield, having his doors stolen, no air or windows that role down (these were all in his previous car), this is nothing to him, but I'm not so used to driving it!  :o)
Please pray for Caleb as he undergoes his second surgery in two weeks.

Worry of a Gallop

I decided yesterday that i was going into the day with an optimistic attitude. I was singing "This is the day that the Lord has made, let us rejoice and be glad in it!". It helped me to stay in the day and not worry, but pray for the now. I went to mass at the chapel in the hospital. It was just what I needed to refocus, have quiet time and pray.
During rounds, I was ready to ask a lot of questions about the diaphragm issue. They said that it was confirmed paralysis. This can happen when the phrenic nerve gets nicked during surgery. The diaphragm is a muscle that on Caleb is now not retracting on one side and is putting pressure on his lungs and not permitting it to fully inflate. The plan is to let him rest all weekend, keep him on the ventilator, and give him lots of nutrition. They added nutramigen to his breast milk to give him extra calories. It adds about 4 calories to every ounce of milk which is an average of 20 calories.
Yesterday (Friday) they heard a Gallop when listening to Caleb as well as felt weak pulses in all 4 extremities. I was concerned when I heard this (& researched online-- mistake!) but tried to keep my positive outlook and put it in God's hands. My Starbucks run and yummy chocolates I was treated to by a friend helped! :) They did an echo which thank goodness came back showing nothing negative for heart function. Praise The Lord! They said hearing the Gallop could've been a result of extra fluids he needed overnight.
He's had a great night and day today with many awake periods. I even caught him with a slight smile while sleeping. He squirms a lot in his little bed. The nurses get him all snuggled and wrapped and within minutes he has an arm out trying to hold a wire. He also stretches his long legs out to the end of the bed! I think he'll be ready for that miracle blanket wrap that all his siblings loved!!!
Aunt Courtney & Robby came in town and surprised Jake with an early birthday movie night with pizza and cake!

Lung issues- IPV Therapy

So, I'm starting to think Caleb is getting used to the ventilator. (me- not so much!)  Today he has been sucking on it, and not just a little (which he's been doing), but actually like it is a pacifier- loud.  They are concerned about his lungs and did IPV (Intrapulmonary Percussive Ventilation) therapy and then took an X-ray this morning and then redid both again midday.  After comparing the two, this afternoon's X-ray of his lungs looks worse and one side of his diaphragm looks more enlarged which could be putting pressure on the lungs.   The lungs appear to have spots that are partially collapsed.  They are going to stop c papp trials and just let him rest on the ventilator overnight which will prayerfully expand his lungs.  An X-ray will be repeated in the morning and then possibly do a "moving X-Ray".  There are a lot of questions about why the X-rays look like they do.  One guess is that there are little nerves around the diaphragm and during surgery one could possibly have been nicked.  Thankfully, his blood gases all look good and he appears good.  Just pray that a good day and night of rest is all that he needs.  Sometimes, just rest works and then they take them off the vent and they do great; other times, they have to go back to surgery and tack the diaphragm down.  Praying for the lesser invasive to work!!!

On a different note, I went to the little boys' Muffins with Mom this morning at their Mother's Day Out.  We are so blessed to be at an amazing preschool.  It is such a super special group of teachers, staff and families.  Bo, once again, was like a little leach, not letting go of my leg.  He was very proud to give me a handmade card, beautiful flower in a specially painted pot, and attempt to sing a special song.  Cooper just wanted to eat a LOT of muffins ( I stopped counting).  He made the most beautiful bracelet for me out of shrinky dinks!  It was a wonderful morning.

Sneaking Home for a Night

Warning, this is a venting post.  I escaped last night with Zack to stay home for the first time in 2 weeks.  Caleb had a great day and the night was to be a very calm night with CPap testings.  I was thrilled to surprise the kiddos and sleep in a real bed rather than a pull out chair.  It was wonderful to get to go through the "normal" weeknight routine of feeding, bathing, bedtime, laundry, and getting them ready for the next day.  They all wanted me to lay down with them and snuggle, to which I wanted to just never get up from!  Sweet Bo didn't leave my side for anything and kept repeating "my Mommy" OVER and OVER.  He would even sit right beside me and attempt to climb in my lap as I pumped!  This morning was very, very hard for me.  I couldn't wait to get back up to the hospital; however, leaving the house just hurt.  I got great big hugs from all of the kiddos and Bo had to be pealed off me.  Zack said he was fine within a few minutes, but my heart just ached for him.  As I drove out of the neighborhood and saw friends going about their daily routines, I just longed for our "old normal".  It is so, so hard to think about having a new baby that I've only held 2 times in over 2 weeks for a total of a few minutes... and not knowing how long this will be, or how he'll do today/ tomorrow/ next week.  I miss my kids, my grocery runs, hugs, dirty hands, not being so insanely crazy over germs/ sick friends. It is so hard to not get upset and truly get mad.  I am a mom that is obsessed with my children.  They are my life and to have to turn 4 over while I stay at the hospital just is tugging at me.   I am honestly trying to stay positive and think how grateful I am for the moments when Caleb looks up at me, and for sleeping at home last night (and that Bo woke up in the middle of the night and came and snuggled with me-- sorry, all that are helping care for them, I will spoil them when I'm around!)  :o),  for the grandparents, aunts, and uncles that have paused their lives to help us, for the friends and neighbors that have kept the kids, made amazing meals, snacks, and yard work so that Zack and I can have some relief.  As I am having this moment, I think God is nudging me to get down on my knees and see all these positives and happy moments and thank Him for them, as well as a reminder to PRAY for everything.
One more big thing to praise God for-- Jake had his annual cardiologist appointment yesterday.  He did great, thanks to a super friend that helped by bringing him to the hospital, distracting him by letting him listen to his iPod, and even showing him around the clinic to all of the behind the scenes offices!  Jake loved getting this special treatment and it made the appointment (which he was very anxious about) go great.  The report was super.  The gradient across his aorta has not changed in the past year.  He got some special private time with baby Caleb after the appointment.  Daddy met us up at the hospital and Jake got to eat in the foodcourt and even get ice cream!

Back to Yesterday's Room

We had a restful day after we were moved back to the room we were in yesterday.  Zack suspects that we were moved prematurely yesterday and that during all the action, Caleb got upset and basically never really settled down, causing his oxygen sats to be compromised.  The room we are back into is under much closer watch which he needs during this stage.
Today, Caleb slept almost all day.  They stopped his morphine drip around noon and he stayed relaxed all through the afternoon.  We think he was just worn out from last night's episode.  An ultrasound was done on his right leg due to a weaker pulse.  It came back negative for blood clots.  They suspect that it is due to having the femoral line in that leg (that they've removed) and it will just take time.  Tonight he's been awake.  He hasn't been upset, but just agitated and gagging on the tube down his throat.  He suddenly spit up a lot and his nurse was able to pull a lot of flem/ fluid out of his stomach.  They did a quick xray to confirm that all his tubes were in the correct position, which they were.  He continues to gag, though, which is a scary sight for me.  It makes it hard to leave his side in fear of him spitting up again!

Off the Ventilator and then back On the Ventilator

Caleb got his ventilator extubated around 2:00 this afternoon.  He looked amazing afterward.  Just precious and relaxed.  I got to hold him!  The feeling of him in my arms is indescribable.  He was so warm and just melted in my arms.  Zack left this evening around 7 to head home to stay with the kiddos for the first time since Caleb was born.  Within 5 minutes of him leaving, the little guy started crying and appeared in pain.  I called for the nurse a couple of times.  We couldn't figure out what was wrong. He was inconsolable.  (In my head, I was telling myself that it was because he wanted me to hold him!)  She tried pacifier, changing diaper, patting bottom, meds... and on and on.  Luckily, Dr. Mettler walked by and questioned what was going on- his oxygen stats were in the 60's.  He had a blood gas drawn which showed that Caleb's lactic acids were up to 6.2.  The ICU team came in and decided to reintubate him.  So now he is back on the ventilator.  They assured me that this can happen and is not a sign of something wrong, but just that he wasn't ready and they can't take a chance with Hypoplastic babies.  Once they saw the oxygen levels low, they had to get him on the vent quickly.  Praying his body rests, he gets more fluid off his chest, and his lungs will be ready.