Pediatric Surgery Update

Sutton went on another road trip to KC yesterday!  This time I drove us because Andrew was already in KC for work.  Thankfully Sutton slept the entire way which allowed me a calmer time getting lost in downtown KC when my phone GPS stopped speaking out loud to me:).

Our appointment yesterday was a consult with the pediatric surgeon.  He decided that since the fluoroscopy and CT scan could not definitively show if there is a hernia or not, he would need to do a scope.  Before we schedule that, Sutton will need to have another echocardiogram just to make sure he's strong enough for the procedure.  The doctor does not foresee any issues with that and fortunately that can be done in Columbia.  The scope/possible hernia repair will most likely be done sometime this summer.  

The surgeon echoed Dr. O'Connor's thoughts about having diaphragmatic hernia now as opposed to having it at birth is such a blessing.  The issue with having it in utero or at birth in a preemie would be that it can keep the lungs from fully developing causing a lot of breathing issues.  Fortunately, Sutton's lungs are developed and this isn't the case with him.  An untreated hernia can have serious consequences though, so even though he is not symptomatic aside from some occasional quick breathing, the surgeon would like to take care of this as soon as possible.

We felt very comfortable with the surgeon and Sutton was very taken with him- he kept giving him his gummy grin every time the doc looked at him.  We took this as a great sign that Suttie is once again in great hands.

Lawson got to hang out with Lulu again and decided to spend the whole day smiling at her.  He is such a happy baby:).  This weekend we will finally introduce the boys to my extended family and we are so excited!  Then for the fourth, the boys will get to meet their cousins and uncles on Andrew's side (they've already met their Aunt on his side).  We cannot wait to see them and meet our new nephew Greyson who was born in March!  It's so fun to finally share the boys with all of these special people! Have a great weekend!

CT Results

What an adventure we had!  Sutton had his CT scan on Monday.  We left Columbia at 5:30 on Monday morning and got to KC in plenty of time to feed Suttie his last bottle for what would be about 9 hours- what a trooper!  

(Trying to snooze on the car ride)

He first had his fluoroscopy at 10-  little guy did not like being pinned to the table while this quick moving x-ray was done, but fortunately it only lasted 2 minutes and Andrew and I were able to be in the room.  The radiologist told us she believed the issue was a diaphragmatic eventration- basically the muscles controlling his diaphragm are weak causing it to not stay in place.  This procedure couldn't tell us anything about his lung, so the CT scan was still necessary.

We were able to take a little break.  Apparently, there was a miscommunication and they decided Sutton did not need to drink the oral color block and they would just give it to him via feeding tube after he was sedated.  We took this time to meet up with our friends Dawn and Ryan who just happened to be in KC as well!  It was great to have a distraction for a little bit, plus Dawn made a mean chicken pot pie!

("Who needs food?  As long as I've got my paci and puppy, I'm good!")

We arrived back at the hospital around 1 for our 1:30 appointment.  However, they didn't call us back until 2:40.  Then they began the sedation process.  The nurses placed an IV in Suttie's arm for the anesthesia.  What a champ!  He cried but then remembered that the nurses dipped his paci in sucrose water and he was a happy boy once again!

("What IV?")

They finally took Sutton back for his anesthesia around 3:40.  Andrew and I waited in the waiting room until the CT was done around 5:30.  They said he did great, but because he was a preemie and they were worried about possible apnea spells, they wanted to keep him in the hospital overnight.  Apparently, there was a miscommunication from the radiology department and the anesthesiologist.  While we were told by radiology that S would go home as long as everything went well, the anesthesia department always keep babies born at his gestation overnight for observation.  Bummer:(, but we understood and appreciated the care they were taking.  We were told we would most likely receive the results by morning after the pulmonology team reviewed the scan.  Sutton was very groggy until about midnight (thanks for the all night party, bud).  He did great though and had no apnea spells and only slight drops in his oxygen saturation.

(Sutton trying to shake of the anesthesia)

("I'm awake!!!!!")

In the morning we were visited by lots of doctors.  Everyone agreed (including the pulmonologist) that he definitely is dealing with an eventration.  It is not conclusive if he is also dealing with the diaphragmatic hernia as well though.  The plan for the eventration is just to keep an eye on it.  Hopefully the weak muscle will strengthen with time and no treatment will be needed.  Sutton has a follow up appointment with the pulmonologist in 3 months.  The pediatric surgeons would like to see Sutton next week for a consult about the possible hernia.  Not having spoken with them yet, we are still a bit confused how they plan to tell if he actually has a hernia and will likely be talking to our pal Dr. O'Connor for his opinion if they decide to do an exploratory surgery.  We will keep you updated!

The great news is that the CT scan didn't show any issues with the lung!  Thankfully this mother's intuition was wrong this time!  Whew!  The prognosis is great for both of these issues and Sutton received great treatment from Mercy even if they were a bit disorganized getting information to us.

Meanwhile, back in Columbia Lawson was having a great time with Grandma Lulu!  They played a new game called "Puppy on My Head."

Big Day Tomorrow

Tomorrow is Sutton's CT scan.  Up until today, I have felt really great about it.  But now that it's almost here, I'm starting to get nervous.  I've kept my promise to Dr. O to not Google anything, which has been good for me.  I've talked with lots of people about diaphragmatic hernias and have gotten positive feedback.  That's all well and good, but my fear is that it is a hernia AND something with his lung.  I'm no doctor and I certainly wouldn't even begin to guess what lung issue it could be.  All I know is that the x-ray the pediatrician took and the one the pulmonologist took looked different... to me at least.  The pediatrician's showed a hazy area in his lung, but the pulmonologist's focused on his stomach which I did not see in the other X-ray.

I just don't want our little guy to have any more health issues.  I know we are so lucky to be able to make it out of the NICU fairly unscathed, but I just wonder when we can breath a little ( and yes, I know a parent never stops worrying, I just want to get to the normal worrying part:)).  A good friend reminded me that God has been in control this entire time, and I need to let go a bit.  It also helps that one of God's angels on Earth, Dr. O'Connor, is only a phone call away.

Here's how tomorrow should go down. We will leave Columbia around 5:30 am- Grandma Lulu has been a rock star yet again and will be hanging out with Lawson all day. Suttie will have his last bottle at 8:15.  He will have his fluoroscopy at 10 and start drinking the disgusting "color block" for his CT scan at 11:30.  We will meet with the sedation specialist at 2 and he will have his CT scan at 3.  Unfortunately, he will need to be intubated to protect his airway from the gross liquid he has to drink.  This is unsettling for us as the last time he was intubated (inguinal hernia surgery) it took nearly 12 hours for him to get extubated.  Granted, he was still 4 weeks shy if his due date and still on a bit of oxygen.  Because of his age and our distance from the hospital, they have reserved a hospital bed for him as a precautionary measure- hopefully he won't need it.

Please pray for a complication-free CT scan and for Sutton to bounce back quickly from his intubation.  Please pray also that the doctor's are able to definitively diagnose this issue(s) and have a swift plan of action for treatment.

Now on to some fun stuff!:). The boys have been super into books lately.  They really like listening to me read and looking at the pictures.  A couple of times I have been reading to Lawson while Sutton is still sleeping only to look over and see Sutton with a big old grin.  They are both smiling a ton which Andrew and I LOVE!  Lawson has been consistent with sleeping through the night for over a month now.  Sutton has had a few nights here and there where he has slept through as well.  Last night was the first night both boys slept in the nursery!  They both fell asleep by 9 and were awake by 6!!  I thought I should feel super rested, but I think I kept waking up to look at the monitor and make sure I wasn't missing someone's cries.  Here are some pictures of these cuties:

We love Corduroy!  

Visit to the doctor.

You lookin' at me?  (S)

Ohmygoshsocute (L)

Happy 5 months!!

Our sweet boys turned 5 months (2 months adjusted) today!  I don't have it together enough to do those cute pictures with the month stickers on their onesies, but at least I remember:).  We celebrated by going out to eat with the boys for the first time!  It's one of the first  social outings we've had.  Nanny and Poppy (Andrew's parents) were in town, so we had help on hand if the boys started losing it mid-meal:).  Fortunately, they were very well behaved and we had a great time!  Happy birthday sweet angels!

(Lawson on left, Sutton on right)

Pulmonology Report

We took big Suttie (he weighed in at over 10 lbs) to his appointment today.  He had all of the nurses swooning over his big, blue eyes:).  We were so lucky that Sutton's nurse turned out to be a NICU nurse who was helping out at the clinic!  You know how we love those NICU nurses!!  She was so impressed with how great Sutton looked knowing how early he was born.  We immediately felt that Sutton was in good hands after meeting her.

Poor little guy had to have some more x-rays, but was an absolute champ and hardly fussed at all!  The x-ray showed that his stomach was pushed up fairly high which is what is compromising the left lung's full function.  The pulmonologist has narrowed the lung issue down to three possibilities now:  diaphragmatic hernia, diaphragmatic eventration, or diaphragmatic paralysis (that last one sounds just awful, but it's ok).  She seems to be leaning towards the hernia, which would most likely require surgery in the near future.  Essentially, any of the 3 could require surgery, but in order to figure out the diagnosis and its severity, he will have a CT scan and ultrasound on June 17.  

Andrew and I had a difficult time fully understanding the doctor's explanation of each issue, her accent was very thick.  We had her write them down knowing we would call the boys' Uncle O'Connor, I mean Dr. O'Connor:).  We did catch the NICU nurse on the way out and she told us she had seen all 3 of these many times and that Suttie would be just fine (she also gave me a big old hug- yea, she was most definitely a NICU nurse:)).

We called Dr. O'Connor and he echoed the nurse's words.  He said while these issues are fairly uncommon in the grand scheme of things, it's not an uncommon thing for pediatric surgeons to deal with.  He also advised us to NOT Google these issues as they might sound worse than they are.  I told him we were completely comfortable with letting him be our Google.

So... All in all, the visit was fine, Sutton is in great hands, and Lawson was spoiled all day by Grandma Lulu!

(Sutton didn't seem to mind the trip at all!)

Summer is here!

I can not tell you how excited we are that summer is finally here!  I went back to work for three weeks, which was a good amount of time, but I'm so glad to be able to spend the entire summer with the boys!  While I was back at work, we were so lucky to have BOTH of the boys' grandmas take care of them!  They're not spoiled at all;)!

For Memorial Day weekend, we headed to the Lake to hang out with family.  This was the first out of town (non-medical) trip we've taken with the babies.  Things went pretty smoothly!  It was so much fun to have the boys around their cousins Hap and George (not like any of them paid attention to each other, but it was cute nonetheless).

Thee boys have been doing really well since being home.  We've settled into a pretty nice routine which still involves quite a bit of sleep.  The boys will turn 5 months on Friday, but their adjusted age will be about 9 weeks.  At their 4 month appointment, the doctor was very impressed with the boys' progress.  For their adjusted ages, Lawson was in the 75th percentile for height and 25th percentile for weight!  Sutton was in the 50th for both categories!  The doctor used the word "awesome" to describe how they were doing.  Now, at 5 months, both boys are around 10 pounds!

(Lawson on top, Sutton on bottom)

We do have one health concern for Sutton.  The week before I went back to work, I decided to call the doctor's office because I had always noticed that Sutton breathed faster than Lawson.  It was not a new development or anything, I was just curious.  They had me bring him to the office that day and took an X-ray.  We immediately called our doctors over in the NICU to just ask what they thought.  Bless their hearts- they actually let us bring Sutton in to see them!  Reason number 75435678 why we love them so much.  Off topic- we still call them at least once a week to ask some question- Dr. O'Connor jokes that we purchased the long-term package by having 27 weekers.  Anyway, the neonatologist and pediatrician looked at the X-ray together and deemed that Sutton has a sequestration in one of his lungs.  Essentially, 1/5 of one of his lungs isn't inflating.  We are seeing a pulmonologist in Kansas City on Thursday.  We are hoping that there won't be any surgery involved, but the doctors have warned us that it is definitely a possibility.  We are not worrying ourselves yet.  Both boys are thriving and that's more than we could have hoped for 5 months ago.  God has been so good to these babies and we know he will continue to do what is best for them.

Thanks for checking in!