Surgery Day (Hospital Stay #5)

We arrived at 10:30 the day of Halle's surgery to get ready for a noon shunt surgery.  Things went very smoothly getting checked in, we got settled into her pre-op area, met with the anesthesiologist and surgeon, and then sent our precious 3 week old (to the day) daughter into surgery.  The surgery would place the shunt in her brain and the tubing would run all the way down to her abdomen.  She would have a total of 3 incisions: the front right of her head, behind her right ear, and the right side of her abdomen.  The actual surgery should last about an hour, but the anesthesia and recovery time would add more time. 

 

Mama and Daddy were blessed to have Nana, Papa, Aunt Kara, Mary Grace, Auntie Ashlee, and Uncle Richard all there to keep us company during surgery.  We knew we were also joined by hundreds of others by prayer and could certainly feel it!  And our sweet friend, Halie, was on Camden duty yet again!  The first 1 1/2 hours passed relatively quickly and Mama and Daddy felt good about things...the last 30 minutes seemed to last forever and the more time passed, the more nervous we were.  Such relief was felt when they called our name to meet with the surgeon and he said everything went well!  He told us what he did, what to expect in the next few days, and said we could see her recovery soon!  My heart was so ready to see my precious daughter!  Filled with thankfulness, we filled our family and friends in on the good news.

And into recovery we walked and saw our beautiful daughter! She had already come out of anesthesia once, but was back to sleep. It was amazing, but we could already see some visible improvements! We spent some time with her and were then sent to our room where we got to hold her again. Halle seemed to be recovering well minus her appetite still being pretty small, which was expected due to anesthesia, abdominal incision, and her jaundice level. The next day the neurosurgeon team came back to check her out and gave us the green light to head home! How incredible to get to go home just a day after brain surgery. We headed home in great expectation of never having to return to the hospital again and so grateful that the Lord allowed things to go smoothly through surgery!

 

Surgery day cuddles

Halle had to wear a hospital gown...it was HUGE!

About to head into surgery...

Our sweet girl in recovery.

All bundled up nice and snug!

Seeing Halle awake for the first time since surgery.

Mama and Daddy holding Halle for the first time post surgery.

Sweet eyes!  And we were thankful that they didn't have to shave her head like we expected.  They just clipped a little near the incisions. 

Our surgeon has a great sense of humor and told us he gave Halle her first tattoo; he even said he put it in a tasteful place.  We thought he was kidding until we unwrapped her a few hours later!  It was a brain with a band aid...love it!

Home Again, Home Again

During the next 1 1/2 weeks, we experienced somewhat normal life with a newborn and a 2 year old.  Halle was still extremely lethargic and hard to feed, which caused Mama to be very concerned about her.  Every feeding felt like a battle to help her gain weight!  We had our 2 week pediatrician visit, a series of more test to check for blood disorders, another pediatrician visit for reflux (oh yeah-she started spitting up a lot too!), and jaundice checks.  In between all the appointments, we tried to figure out what life at home looked like.

 

All the while, Mama and Daddy were looking for the warning signs they listed if her hydrocephalus reached the dangerous state.  Although her symptoms never grew extreme, we were concerned because we could see a visible change in her head circumference, her veins were becoming more prominent, and there was no improvement in the eating department.  Waiting for two weeks to see the neurosurgeon seemed like an eternity and we were so nervous that we would wait too long.  Mama felt constantly attacked with temptations of worry and was really struggling to give it over to God.  The whole time Mama felt a peace about surgery and felt it was going to happen eventually, but the in between period was killing her.  Daddy had been very hopeful that the situation would resolve itself, but also quickly saw that things did not seem to be getting better.  If hydrocephalus goes untreated it can lead to brain damage and other problems; the waiting game is such a tough place to be.  We talked with neurosurgeon on call one night and he reassured us that if her symptoms were not extreme, she was ok.  However, during a pediatrician visit just four days after the prior one, our doctor also expressed concern over the rate her head was growing.  She put in a call to the neurosurgeon too and they moved up our appointment. 

 

 

The neurosurgeon that we originally met with was out of town, so we met with a different doctor that we really liked.  He actually performed the exact same surgery on another baby we know!  We went in that morning and had a CT scan done to compare with her previous MRI and then had a follow up to go over the results.  Although we were happy to hear that the original blood clot had been absorbed, he quickly agreed that her body was not draining the fluid as it should and that things were not improving.  He went on the recommend putting in a shunt the following day.  Although this was not the news we hoped for, Mama felt a huge relief.  The waiting was over, a plan was established that would resolve the issue, and then we could move on. Hearing that your 2 1/2 week old was about to have brain surgery was not fun, but the Lord immediately granted peace.  We went over all the specifics with the surgeon and felt good about the life that Halle will lead.  The great news is that everything else looks perfect in her brain and that there appears to be no other concerns.  Shunts are put in with the goal to last a whole lifetime and there will be no limits to what she can do.  Yes, she can play basketball like her Mama if she wants to!  The first couple of years will bring more doctor visits and scans than the normal child and the shunt will be visible for a while, but eventually life should be pretty normal for Halle.  What a blessing that the Lord has granted medical know how to correct this problem and that we live in a place where the treatment is readily available!  My heart immediately hurt for children in other countries who reach the brain damage state because they cannot have this problem corrected.

 

The rest of the day was quite the whirlwind getting prepared for surgery...a physical, paperwork, pre-op evaluation and more torturous blood draws (don't worry, it didn't take 2.5 hours this time, only 1.5). Poor girl is a tough stick! We were very thankful that we got to spend the night before her surgery at home. This gave us time to pack our bags (something which our friends and family had to do before), enjoy time with Camden, sleep in our own bed, and experience corporate prayer over Halle. That night we both felt a peace about the surgery the next day...

 

 Sweet girl home from the hospital!

 Kisses from Mary Grace

 Cuddles from Mimi

 Halle got to meet lots of friends like Cambry!

 All dressed up for a doctor visit

 We recreated the "nest" they had her sleep in at the hospital and created an incline for her to sleep on.

 Hanging out with Grampa

 

 Sleeping on Daddy

 This was around when we started seeing a change in her head size.

Exhausted from another doctor visit 

 Hanging out during our long pre-op day

Resting on Daddy while waiting to see the surgeon



A Change in Plans (Hospital Stay #4)

We arrived at Childrens Dallas and quickly got settled into our new digs.  After 3 different hospitals, we felt we had the routine down and knew what to expect.  Mama and Daddy were anxious to meet the neurosurgeon team and hear what the plan was for surgery.  Things moved pretty slowly after our arrival which meant lots of waiting...which is always really hard.  After what felt like forever, we met with a neurosurgeon PA and went over the plan of action to prepare for surgery the following day.  Halle had to go off of milk (which was tough since her weight was already a concern) and only be on Pedilite and IV fluids in preparation for the next day.  She also had to have several hair/head washes to prevent infection during the surgery.  Although this was a tough night, we also felt a peace about what was coming.  Mama especially felt good about the surgery and was just glad to have an answer to the problem and a solution.  That night members of our lifegroup came and prayed over Halle (yet again-they were amazing at dropping everything to come pray!).  Mama, Daddy, and Halle all slept relatively well the night before...well as good as you can with the every other hour visits from nurses. 

 

 

The next morning brought some very unexpected news.  One thing about being in the hospital is that you never know when people will come in.  Mama (who always has make up on and hair done) was once again greeted by the neurosurgeon team at 7 am and so they got to meet us in her pjs!  Daddy joked that this was good for Mama to not always look like she "has it together."  The lead neurosurgeon came in with his team and said after reviewing Halle's case, he felt it would be inappropriate to operate at this time.  He wasn't comfortable making a life long decision when he felt there was a good chance that her body could absorb the clot and resolve the issue without intervention. We were so surprised (no one had mentioned this as a possibility), relieved, and excited!  He went on to say that he would be discharging us, told us what signs to look for in the next two weeks if her case became emergent, and scheduled a follow up appointment.  He did caution that there was still a chance she would need shunt surgery, but wanted to give it some time. This gave Daddy quite a bit of hope, but Mama still had a gut feeling they would be back for surgery.  We would most likely know in the next three to four months if surgery was needed.  And with that, a few hours later (nothing moves quick in the hospital), we went home!  What a relief tha our 10 day old baby was not going to have to have brain surgery.

 

Our talented friend, Sarah, came and took pictures of Halle the night before we expected surgery.  She did a great job of capturing Halle's beauty and these will forever be a reminder of the journey our sweet daughter has been on.  

All the While...

You may be wondering what Camden was up to...I assure you, he was not short on fun times and attention.  It is so cool to see how God took care of all the details through this past month.  First of all, God created Camden to be a flexible, social two-year old who is totally fine with being away from Mama and Daddy.  He LOVES his friends, our friends, and his grandparents.  In fact, I think he prefers them sometimes which was perfect for this time period.  I am also thankful that he was still so young that he didn't understand that this was not normal or realize the severity of the situation.  Whenever he would come to visit, he would usually ask about the lights, IV, or wires, but would quickly move on to the next thing.  He enjoyed coming to visit us at the hospital and was also well behaved enough that we were ok with that.  It did Mama and Daddy a lot of good to spend some time with him...we really missed him and were so proud of how he handled everything!  We have also tried to have some dates with him mixed in with all this craziness.

 

Swimming with his buddy Ryan

Playing in his new sprinkler courtesy of Nana and Papa

Lunch with Mimi and Grampa after a fun trip to the aquarium

Building towers in the bath

Frozen yogurt date with Daddy

Running to Target with Mama and this guy insisted on carrying the basket the whole time...what a big boy!

Riding with Mickey 

Hard at play

This picture warmed my heart...my sweet friend, Halie braved taking a 3 yo, 2 yo, and 1 yo all on trikes to the park.  She deserves a medal!

Chase, Cambry and Camden on the swings

"Night night" pic from Aunt Kara

At the park with Mama

Chickfila date with Mama...he ate about 10 bites of this HUGE ice cream!

Too many hours to count have been spent building and playing cars

Mimi and Grampa got Cam a new big wheel...he LOVES it!

How fun!  He got to eat lunch in his pool.

 

I will forever be grateful to all of the people in our lives who took care of our little man.  Anytime we needed help, all of those around us were happy to help.  And he wasn't just plopped in front of the TV, he got some great entertainment.  Thank you, thank you, thank you to our friends and family.  Both sets of parents have spent more time at our place the past month than their own!  Cam loves his grandparents!  My friend Ashlee spent the night last minute and my sister stayed 2 nights with us to help out.  My friends Halie, Michelle, and Courtney watched Cam multiple times for us while family was en route or at the hospital with us.  We are so blessed to have so many people who served us by taking care of Camden during this time.  The Lord worked out all the details so we never once had to worry about our sweet boy.  And here is some of the fun he had!

What's Wrong??? Hospital Stay #3

After being dismissed the night before, we headed back to the hospital the next morning for a jaundice check and to meet with the lactation consultant.  The jaundice level came back about the same as when we were dismissed which is not uncommon since babies have stopped receiving light treatment.  However, when the lactation consultant saw how sleepy she was while feeding and her lethargy in general, she expressed concern.  Even though it was Saturday, she had our pediatrician come up to evaluate Halle.  All along I had known something else was wrong; even if she was a laid back baby, this could no be normal.  She had never once initiated a feeding on her own and it was a battle to get her to stay awake to eat at all.  I had told Toby the night before that I thought we should take her to Childrens Hospital to be checked out, so I was very glad that our doctor agreed that was a good move.  Even though it was scary, I was anxious to get more answers.

 

Our time at Childrens Legacy was probably the scariest period of my life...I had no idea what was wrong with my child, but I knew it was something.  The visit there got off to a rough start as they wanted to draw blood and start her on an IV.  2.5 hours later, they finally got it in.  Yes, you heard right...2.5 hours of watching my week old baby be poked all over by at least 8 different staff members.  They even called in the transport team who responds to 911 calls and has to start IVs on the move and they couldn't get it in!  After trying both arms, both hands, and both feet multiple times, one nurse finally got it in one of her veins in her head.  What a sad sight!

 

They immediately started testing for things such as infection, meningitis, and lots of other things.  The doctor decided to start her on antibiotics just in case there was an infection.  It took just a few hours for some results, but 24-48 for some of the cultures to grow.  We were moved to a room and got settled in.  After two nights all of her test results were negative, so the doctor told us they wanted to do a head ultrasound the next morning to rule out something there.  She really didn't think it would show anything, especially since I saw a specialist with monthly sonograms during my pregnancy due to losing Beckett last year, but thought we should check it out.  This news was unsettling to us, but we also doubted it would show anything.  The next morning they woke us around 7:30 am to say we were going down for ultrasound.  We proceeded down (me still in my pjs and glasses) to the imaging department.  Needless to say, this time period was awful.  It was very obvious that the tech saw something she didn't like, but she was not authorized to tell us anything.  After about an hour with her, we were sent back up to our room with no news.  Toby and I were both scared beyond belief...I thought the area they were focusing on must be a tumor.  We waited...and after only a few minutes, they called and said they needed more images.  I was so upset!  We went back down and spent about another hour getting more images.  Within a couple of hours, the doctor came in and told us that she had consulted with the radiologist and the pediatric neurosurgeon and Halle had hydrocephalus.  Hers seemed to be caused by a blood clot that was preventing the fluid in her brain to drain properly.  They ordered a MRI next, so we headed down for that.  In this time period, we're trying to figure out what that exactly means and everyone seemed so puzzled by the fact that Halle had it.  Hydrocephalus usually occurs in pre-term babies that are vaginally delivered.  Halle was full-term and a c-section; no one seemed to know why she would have this problem.  I felt a little relief knowing that there was no tumor and they explained that long term people live perfectly normal lives with shunts, but it was still so frightening.  The MRI was hard to watch, in fact, I stepped out and had Toby stay in.  The reality of what was happening really hit me. My 8 day old baby was being strapped down for a MRI to see what was wrong with her brain.  I couldn't believe it!

 

I will say this whole time we were surrounded by such a great support system physically, but what meant the most was knowing how many people were praying for Halle.  We were so grateful that so many prayer warriors were pleading for healing and the whole time I was confident that God was using Halle to further His Kingdom.  We knew this was part of Halle's story and that hopefully it would draw others to Him.

 

After the MRI, things moved quick. We needed to be transferred to Childrens Dallas to the neurology floor and the transport team would be taking us with 30 minutes. We rushed around getting everything together and trying to process the news. They also told us that Halle would need a shunt put in and that surgery would occur the next morning. The neurosurgeon team at Childrens Dallas would meet with us to go over details upon arrival. And with that, Halle had her first ambulance ride...

 

 Sweet girl was exhausted after all the poking!

 All smiles heading into her MRI...

And of course this sweet boy added some smiles and laughter to our scary experience...he LOVED the Kung Fu Panda they had at the hospital!

Hello Lights! Hospital Stay #2

Originally we went home from the hospital on Monday morning and went in for a weight check at our pediatrician on Wednesday afternoon.  Halle's jaundice level when we left the hospital was 4.4, but when we went in for our weight check the doctor thought she looked very yellow.  They did a blood test and she said she would call that night with results.  We were out on a family walk around 8 pm when she called to say that Halle's level had elevated to 19.1 and she wanted to admit her to the hospital that night.  We were very disappointed, but quickly made arrangements for Auntie Ashlee to stay with Cam, Courtney to babysit the next morning, and my mom to come in mid day.  Our doctor hoped that a day or two under the lights would help significantly and help with her poor eating and lethargy too.  We stayed two nights and her level dropped to 12 something, so we were dismissed.  Halle was still so sleepy and hard to feed that we scheduled to come back the next day for another jaundice test and to meet with the lactation consultant for help with feeding.  We were so excited to get to leave the hospital....little did we know we were just getting started!

Looking back at this pic from the doctor's office, you can see how yellow Halle was.

Our little glow worm lit up the whole room!  We were thankful that she got to stay in the room with us at all times.

I'm sure she'll hate this later since it looks like she's picking her nose, but here is a shot of the goggles she wore.

We were so thankful we got to be with her and cuddle our little girl during feedings.

Sweet big bro loved coming to visit us and we were thankful for the normalcy of hanging out with him.  Daddy and him had a good time playing in the courtyard!

Daddy waiting to take Halle home.

Heading home, take two...