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.

Waiting on Extubation

We had a great day yesterday- Saturday.  We met with the PCICU doctors, surgeon, nurse practitioner, fellow, respiratory therapist, cardiac team, and nurse during rounds and they decided to wait on extubating him for another day because he still had too much fluid around his chest. It would cause too much pressure on his lungs when he breaths on his own and with his condition, he already has compromised oxygen through his body.  So waiting another day was hard to hear, but definitely a good decision.  We decided at the last second that it seemed like he would have a mellow day and he was in wonderful hands with his nurse, Dana, so we escaped to Franklin for the afternoon.  We watched the boys' baseball game, where Jake got super hits and Cooper almost caught a fly ball at second base!  It was awesome and a beautiful day.  We spent the afternoon playing Monopoly, painting figurines, riding big wheels, and just enjoying the kiddos.  It was great to get to use REAL toilet paper!!!! Sounds silly, but wow!   :o)  Even little things like real cups and non- hospital food--- it was SO good!!!  Our friends have been so amazing feeding the crew, mowing the yard, and many other tasks that have been such a blessing to us.  To drive up and see the yard looking so nice meant the world!  (For all that know Zack, he would've spent ALL day mowing/ weed eating, however, having it done enabled him to enjoy family time!!)
We did get a call from the nurse late in the afternoon and she said that he need to have his femoral artery line taken out of his leg and put an arterial line in his arm.  He was not having good pulses in his left foot and the suspect was that it was caused by this line.  Upon us arriving back at the hospital, the nurse was unable to feel any pulse in that foot and it appeared very blue.  I was very nervous all night, worried about blood clots and worse; however, this morning, it looked a lot better.  He still has a weaker pulse in that foot, however, they are not overly concerned at this time.
Leaving the kids last night was torturous.  We were so blessed to get the spend the day with them and I kept telling myself this; but, tucking them in and hearing little Bo tell me to "stay home", just tore my heart to pieces.
Today the plan is to extubate Caleb.  The nurse turned off his Morphine early this morning (7 a.m.) and we are waiting on him to "wake up".  He has to be awake so that he will breathe on his own.  It is now 1:30 and he's still out of it!  Prayers that he tolerates being off the ventilator.  He will be on Vapotherm which is a "stronger" nasal canula.  The nurse compared it to the amount of oxygen that a dog gets when he sticks his head out a car window.  This just will help Caleb give him that boost he needs.

What's In A Name!

Since today has been a nice, slow day as far as Caleb is concerned over his first week and a half of life, Ashley wanted me to give you all a little more background on our choice of name.  For you who know Ashley and I well, you know the probability of us agreeing on a name for our latest child was slim to none prior to him being born.  We just have different preferences that rarely merge into an agreeable selection.  Over the past weeks as we got closer to Caleb's arrival, we, as has become common with our other four children, were preplexed on a name selection! So one night I spent the evening really thinking about it and doing some additional research on names that I felt would fit the long road ahead that our little one had to face.  I quickly singled out the name Caleb.

For a little Old Testament history and reminder, Caleb was one of the key figures in the Exodus of the Israelites out of Egypt, and along with Joshua, was the only spy that after seeing the promised land and the Caananites that they must defeat, remained faithful to God and his promise (Numbers 13:6 & 13:30). Caleb was not only seen faithful to God, but that he served the God of Israel with his whole heart. Upon return, he was the first to speak up and say, "let's go and conquer this land that God has promised". It wasn't Joshua but Caleb who was encouraging Israel to follow God in spite of the opposition and fear of the other 10 spies. Due to their "faith", the only adult Israelites allowed to survive the additional forty years of wandering by the Israelites and enter Canaan and the promised land were Joshua and Caleb as a reward for their faith in God. Caleb is called "my servant" by God in Numbers 14:24, a position of the highest honor previously used only for Moses.

As indicated in the story, the meaning of Caleb in Hebrew is "Faithful" and "Whole Hearted," which quickly caught my attention and are the two things that we wish for our son.  Although he will never have a whole functioning human heart, we wish that he live out a life of faithful following of God's word and plan for his life through the reconstructed "half of a heart" that he has been given by this initial and future surgeries.  He is truly a blessing that has bestowed on us by God and our prayer is that he will be used by the Lord in a special way.  A truly "wholehearted, faithful" servant to the Lord is our daily prayer for our miracle child.

Thank you all again for your "faithful" prayers and thoughts for not only Caleb, but our entire family.  Please know that we pray for you all each day as well and are so blessed to have family, extended family, and friends that love us so much. We are so blessed and feel the love of God in this difficult situation we have and continue to face.

Love, Zack

Chest closed up

Caleb had his chest closed up this afternoon. He tolerated it well and looks great. Prayers that his pressures stay level, that his lactic acids drop, and that he continues to get "skinny" (rid body of fluids-urine). It was another "real" moment for us when we saw his closure. Seeing his miracle scar that we will be looking at forever just makes us so grateful for the chance at life he has been blessed with.
We talked with his surgeon for a while after today's procedure & as I was asking a ton of questions, he finally said "it's okay to just love this little guy. He's going to be going home with you." Zack and I were talking about how amazing he is and we genuinely see how much he cares and loves Caleb. It's the best feeling to have that trust and confidence. He compared the surgery on Caleb's heart to working on something the size of a walnut and the aorta- which he completely rebuilt- to the size of a lo main noodle! Prayers of thankfulness for him!
Caleb was a bit too awake this morning. Although he was still heavily medicated with pain meds, he had his eyes open and actually tracked Zack as he walked near him. He was looking a bit in pain though, so they turned up his meds and he's been sleeping comfortably since.

1 Week Birthday and Eyes Open

Today was Caleb's 1 week birthday!  He had a stable first 24 hours after his Norwood surgery.  All of his pressures continue to stay level.  They did not close his chest up this morning due to his lactic acid levels being up overnight over 8; however, it has continued to drop throughout today.  It is at 2.9 currently.  Our goal is that it get under 2.  We are praying for a "boring" night tonight (which is good in post-op terminology) and that his lactic acids continue to drop so that he can be closed up in the morning.  His swelling looks incredible.  We were prepared for him to look like the dough boy, and he was definitely puffy, however, not to that extent.  He has had a lot of urine output today (thanks to Lasix) and that has helped a lot to reduce the swelling even more.
The kids came up and visited.  They zoo brought animals and put on a show for the siblings.  They loved touching a hedgehog.  God gave us the most perfect moment today when Kate and Jake were visiting their brother.  Kate held out her finger and he gripped it.  She was mesmerized and talked sweetly to him.  He then opened his eye!!!  This was the first time any of us have seen him open his eyes!  My heart melted.  It made him seem "real" for the first time in a week.  I absolutely loved it, for myself, but so much for the kids.  They were just elated.  I was, of course, so worried that he was hurting and really just wanted him to sleep, but the nurse assured me that he is on heavy medicines to control his pain.  Cooper and Bo then had their turns and were very proud to see him  (Bo's first time to meet his little brother).
We ask for prayers that Caleb has a good night and gets his chest closed tomorrow.  We are prepared that after that procedure, it can be a roller coaster for a while.  We pray that he does well, stays strong, and God gets him through that smoothly.

Caleb's Norwood

We walked Caleb down to the operating room around 6:45. The anesthesiologist opened his tent for us to give him a kiss on his adorably spiked hair and then they turned one direction and we went to wait in the other. We were expecting a very long procedure and had the best company in all of Caleb's grandparents to sit with us, pray with us, and even laugh a few times. Although we knew it would be long, I don't think we had prepared ourselves for what was a TEN hour surgery. The nurse called every hour to update.
Dr. Mettler came walking out, looking quite exhausted, around 4:30 for his update on the surgery, although Caleb still was not out of the operating room. I just cannot thank God enough for our surgeon. What a blessing to have been given the gift to give a 6 day old the chance of life with a single ventricle heart! I just wanted to hug him! He said he can't do many more surgeries like Caleb's-- too long and took years off his life!
Overall, he was pleased with how everything went. He came off the heart lung bypass and then had to go back on as he needed to repair a part of the aorta that the coronary artery was resting on that he had repaired earlier in the day. Overall, he is optimistic. Little man looks restful, and we are expecting a significant amount of swelling. His chest was left open to help with this. Zack and i are so grateful for all the prayers today. We felt the love and support from near and far! We ask and are SO thankful for continued prayers!

A Great Day in Prep for Surgery Tomorrow

Caleb has his big day in the morning.  He will go back to surgery at 7 A.M.  We appreciate all your prayers.  We had a perfect day today with him, which was great after last night started off a bit rough.  He de-statted about 4 times last night (meaning his oxygen dropped down into the 40s.  They want it to stay in the 70's.  It dropped and then would go way up into the 90s.  The respiratory therapists adjusted his nitrogen while the nurse was giving him air to level him back out.  After these occurrences, he didn't do it again and today stayed stable.  Our priest, Father Bala came up, prayed over him, and blessed him.  His Godparents, Lindsay and Robby were here in our hearts and will be such a special part of Caleb's life.  We will have a BIG celebration in a few months!  Zack and I escaped for a bit this evening and surprised the boys at their baseball game.  They were ecstatic and it was so nice to breathe fresh air and get hugs from my kiddos and many of our friends.  It was not so easy to leave them as they wanted to come back to the hospital with us.  We got to facetime them upon our return and they sang their favorite nighttime song to their baby brother:  "High Moon Up in the Sky."  Then our nurse told us that her priority was to give us a chance to hold Caleb tonight before he was taken off to surgery first thing in the morning!!!  She had to call and get special permission.  It is a really big deal because he hasn't come out of his "tent" since the first day.  We were a bit nervous and worried about affecting him; however, she reassured us that she was monitoring him closely and how important this moment was for each of us.  Words cannot describe the feeling of when she placed him in my arms 6 days after he was born.  I just melted.  It was the most perfect time.  Zack loved his time with his little man, too and just rocked him back and forth.  It was super hard to give him up and my arms ache for him right now.  But I pray that it won't be long until we get to hold him again.  They will give him 2 baths overnight.  The first will be a regular little bath and then an antibacterial wash and then he will get another antibacterial wash a few hours later.

The surgery is expected to be long.  Please join us in prayer for Caleb.

Game ball

Caleb scored his first game ball today! A super proud moment for his brothers! They are still working to keep his oxygen stats stable to give him a few more days until surgery.

Discharge for mommy

I'm about to be discharged. I stayed an extra day in my "resort room" due to the spinal headache situation yesterday. This will be an odd way of being discharged-- with no baby in my arms & no husband by my side (he took the boys to a spring football scrimmage on campus). Not the normal picture for the baby book. oh well, I'll never get those complete anyway! :).

Ready to be over with the baby!

Meeting his Siblings

Caleb's oxygen levels were at a better rate today. The doctors were pleased. We tried good old Nuk pacifiers to comfort him and he seemed to like them. The kids came up to visit and played teddy bear clinic. The older 3 got to meet their new little brother! It was priceless to see their smiles of pride. Made me long for bringing him home from the hospital.
I started having a headache midday that went from bad to excruciating. I hardly remember part of the day. They called it a spinal headache which I had been cautioned about since they accidentally went too far when they put in the epidural and pulled out spinal fluid. Sure enough- it happened! Ugh! They did a blood patch which is basically another epidural and taking over 50 ccs of blood out of my arm & putting it in the hole in my back; creating a "bruise". The headache feels better; now just sore back. But I'll take it so I can get back to seeing my little man soon!

Nitrogen head tent

Day 2: Caleb is under a head tent to control the oxygen his body intakes. We normally intake about 21% oxygen when we breathe in regular air, but they turned his down to less than 16% to help his profusion (kind of like circulation) of his blood level to stabilize out. Prayers needed for this so they can hold off on his surgery for a couple of days.
We facetimed the kids so they could "meet" their new baby brother. They were thrilled and actually were more interested than if they were there in person-- the power of technology & kids is silly!! Bo was precious and kept giving kisses and asked if "mommy was almost done"!
Caleb went on his first "field trip" tonight as they decided to move him from the NICU to the Cardiac PICU to be in a more specialized unit.

Baby Caleb is born!

Precious baby, Caleb Bradshaw Daniel, was born this morning at 11:11. He was 7 pounds 14 1/2 ounces and 21 inches long. They had difficulty getting his lines in and had to whisk him away to the NICU after letting me give him a quick kiss. They continued attempting to get his lines in including IV s and lines through his umbilical cord; however, could only get one. They had to put in a pic line eventually. He was whimpering a good bit.
He's very cute and has a head full of dark, dark hair!

Pedicure Day

Kate and I snuck in some special Mommy/ Daughter time and had spa pedicures today!   She was home "recovering" from being sick the day before.  (Prayers that we all stay healthy from here out!)   She was completely fine today and it was actually nice to have her home to spend time together while all the boys were in school.  (Like I said in my last post, I do not like to be by myself!)  Although all the cleaning and sanitizing has become a full time job; Darci pointed out, we turned lemons into lemonade and thanked God for this extra time together before baby arrives and just had a great girls' day!  I haven't had a pedicure in years and this was her first experience.  It was so nice for us to get to have this special one on one time to feel so relaxed and girly.  She thought that they were just going to paint her toenails and was so surprised by the special massaging chair and all the extras.  She said that she could definitely get used to the pampering and can't wait to go back!  Well, back to the laundry, bleach, and lysol!

Bo Going to School

     Reality is starting to kick in.  It's been a bit of an emotional week as we get closer to the birth of our little one.  The doctor will induce me next Wednesday.  We started Bo at preschool where Cooper goes.  He was signed up to start next year; however, Zack and I decided it would be helpful to have two days a week where they would both be in school.  I know he is going to have a blast playing with his friends and has the most special teachers and staff loving on him all day; however, it was a super hard day for Mommy to leave him.  It was the first day in 9 years where I had all of them in school!  I didn't know what to do with myself and after my 2 hour doctor appointment, just went up and sat in Zack's (empty because he was in a meeting) office and cried!  Well, I prayed, too, and it was nice to have some quiet time; however, it just hit me that he isn't just going to school only for fun, but because of all of the change that is about to occur.  It just was hard to swallow.
     He had a great day and fit right in.  We do need to search our house for a boy backpack-- how can we not find one with all these boys??  The only extra one I could find was Kate's girly monogrammed one!  Luckily he didn't mind.  I guess that comes with being the fourth child!