Monday, November 4, 2013

Almost 10 Months!

I was thinking the other day that I've only been posting when something goes awry.  Well, I would like to start this post out with saying: We are currently healthy.......ish:)!  Lawson has never really completely kicked his respiratory junk, but he is managing it a lot better.

Both boys got to see their pulmonologist, Dr. Acton, a couple of weeks ago.  This was due to Lawson's hospitalization.  We basically just met with him to get a baseline.  He was very impressed with both boys and kept repeating how remarkably well they are doing for 27 week old preemies.  Everyone is always so shocked when we tell them that the boys aren't on any special medicine or formula.  Dr. Acton just kept Lawson's orders the same- inhaled steroid twice a day and albuterol just as needed. Sutton is not on any maintenance inhalant but can have albuterol as needed.

Onto other respiratory news, both boys were approved by insurance to get the RSV vaccination!  Andrew and I were so excited to hear this news!  Preemies are more prone to contract viruses and to be hit way harder than a full term baby- especially when it involves respiratory illnesses.  Their adjusted age doesn't apply in this case- just because they were 3 months early doesn't mean their lung development is just 3 months behind.  While they will eventually grow out of it, they have chronic lung disease which makes these respiratory viruses so much more complicated.  This RSV vaccination doesn't prevent them from getting RSV, but it's been shown to decrease hospital stay length.  We'll take it!

With cold/flu season here, we have to be more diligent than ever with the boys' health.  We are done taking any lengthy outdoor excursions as the cold temperatures can do a number on the boys' lungs.  Per doctors' recommendation we are also done attending our church until Spring due to the large crowd.  Fortunately our church live steams its services, so we can still be connected in that way.  Aside from daycare and visiting family, the boys won't be taking too many excursions.  We will be retreating back into our bubble for a few months while cold and flu season rages on.  We know the boys will still get sick, but we are really hoping to minimize their risk of getting very sick.  

Aside from trying to stay healthy, the boys are still working on sitting.  Some days I feel like we are so very close, and other days they really fight it.   Lawson and Sutton are working with their occupational therapist weekly now to help reach these milestones.  Hopefully we will start catching up in these next few months.  

Here are some recent pictures of our little men:



(S, L)

(Halloween: L, Mom, S)

(L, S, and Dad)

Monday, September 23, 2013

Health Update

Lawson has been moved from the PICU to the general pediatric floor!  Woohoo (although I loved all of the attention he received there)!  He was on room air for most of the night, but took it upon himself to yank the nasal canula right out of his nose around 4 am.  Since he was doing fine without it, they let it stay off and later took off the canula completely.  While he was at it, he yanked out his NG tube too... for the fourth time.  They also opted to keep this out since his stomach was soft and he was drinking formula.  

He had an echocardiogram done this morning to rule out any underlying health issues related to his prematurity.  It came back perfect- whew!!  Upon moving to the pediatric floor, Lawson needed to be put back on a liter of oxygen which surprised no one.  Because he's needing more oxygen now, it is a possibility he will need to stay tomorrow night unless this episode is very short-lived and he makes it through the night without any support.

Because this type of virus has struck Lawson hard twice now, he is being referred to a pulmonologist- a local one this time!  We asked if the doctors here would go ahead and also refer Sutton while they were at it (even though he's never even been to this hospital) and they did!  We know there's only so much one can do to prevent these types of illnesses, but we are happy that the pulmonologist might be able to help.

So... In a nutshell: Lawson is still receiving albuterol every 4 hours, Pulmicort every 12 hours, oral steroids every 12 hours, and is now on a liter of oxygen.  Sutton is holding strong even though we all convinced ourselves he had a cough this morning, but alas, we never heard it again- can you say paranoid?

(Lawson yesterday)

(Lawson today while off oxygen)

(Sutton... not coughing;))

Sunday, September 22, 2013

And so it begins...

We were warned about the boys having a rough winter, but the way late summer and early fall have been shaping up makes me dread winter that much more. Lawson had just gotten over his last bout with bronchiolitis when round two crept up.  He had been having a runny nose on and off for a week, but it was always clear, no fever, and he was eating like a champ.  We were keeping our fingers crossed that it was just a little cold or allergies maybe, but his cough came back Friday night.  We started up his albuterol breathing treatments again and those seemed to work for about 18 hours.  

Yesterday, Lawson started wheezing a little and we gave him a treatment around 4 pm.  Usually, the albuterol helps his wheezing, but this time it didn't.  We decided I would take him to urgent care while Andrew stayed with Sutton, thinking that it would be a short trip like last time.  Unfortunately, after several back to back breathing treatments at urgent care, his wheezing was still pretty prevalent.  They decided to admit him to the Pediatric ICU (PICU).  The reason for the PICU admission was that he was requiring breathing treatments every two hours or less and needed a one on one nurse for monitoring.  This all sounded reasonable, but did nothing to calm my fears.  We had a friend watch Sutton while Andrew came to the hospital.  

In the PICU, they placed an IV in his head (after failing three previous attempts-ugh) to keep him hydrated.  He was also placed on oxygen because his oxygen saturation (which ideally is in the high 90's) was in the mid to upper 80's.  They are giving him oral steroids which should help open his airways over time.  We decided Andrew was the best choice to stay at the hospital since he was just a tad bit calmer than me;).

An initial RSV/flu test came back negative, his chest x-rays don't look too bad, and we are waiting for the respiratory virus panel results that we should get later today.  The plan for now is to stay in the PICU for tonight at least, keep the iv going, continue frequent breathing treatments, and continue with oxygen.   My mom is on her way to Columbia now to help take care of Sutton.  While our priority is getting Lawson healthy, our other equally important priority is protecting the health of Sutton- who has a runny nose...

Please keep Lawson and Sutton in your prayers as we work to get over this hurdle.

Sunday, September 8, 2013

8 months!

Our sweet babes turned 8 months this weekend!  What an amazing milestone!  We were able to spend the day tailgating with my family for a couple hours before it got too hot.

(Andrew with the boys [L, S])

The last few weeks have been very busy for us.  Lawson's respiratory virus really rocked his world (and ours) for a little while.  Little Buddy had it bad!  After going to the doctor on a Friday and then Saturday, we found ourselves at urgent care on Sunday when he just couldn't stop coughing and was having trouble catching his breath.  After some intense saline squirts and major suctioning, we were sent home.  I felt that it was time for some serious reinforcement at this point- grandma!  My mom came from St. Louis where she was already helping my sister with her two boys- sorry, Katie!

On that Monday Lawson was really wheezing badly, so we went back to urgent care.  They ended up giving him a breathing treatment and sent us home with a nebulizer.  That really helped a lot, thankfully!  My mom watched Lawson for the next two days while we sent Sutton to daycare.  Fortunately, by the end of the week. Lawson was much better and Sutton has still not gotten sick- fingers crossed!

This last week, Andrew's mom came in to help out while Andrew was out of town for work.  So basically, I got spoiled for two weeks by the boys' grandmothers!!  I guess I have to start cooking, cleaning, and doing the laundry again (although none of that will be done as well as they do it)!:)

At eight months, the boys are suuuuuper fun!  They are both rolling from their stomachs to backs, and very close to rolling from back to stomach.  They are smiling all the time- especially Lawson!  They are eating baby food twice a day.  Sutton LOVES to eat!  On top of consuming up to 40 oz. of formula a day, we can't feed him his solids fast enough! In between bites he frantically kicks his legs until the next bite. Lawson is a bit more reserved when it comes to eating, but seems to enjoy it too.  Both boys are very vocal now!  Between Sutton's shrieks and babbles and Lawson's grunts and nervous cry/chuckle, things are pretty loud around here!

In occupational therapy, we are working on sitting.  Lawson seems like he is getting closer to sitting independently, but Sutton has a little ways to go.  Sutton had a month long break from tummy time while he was recovering from surgery, so he has a little more core work to catch up on.  

I'll leave you with more of our favorite pics from lately:
(L, S)


Saturday, August 24, 2013

Twin Update

Sutton had his post-op appointment this week in KC.  The doctor was very pleased and said that he just needs an x-ray every six months until he is two.  Fortunately, we can do this in Columbia so we think our trips to KC are done for now.

My school year started up last week.  I had been dreading leaving the boys, although a part of me was excited to get back into the classroom.  Morning #1 was rough!  The boys started going to their sitter and they seem super happy there.  They are going to an in-home daycare with 4 other little ones.  We love their sitter!  She has six children of her own ranging from elementary to adult.  Sometimes when we go to pick up the boys, one of her kids is holding or playing with one of the boys- it really warms our hearts.  There is so much love in that house and our boys get so much attention!

Before taking the boys' to daycare for the first time, I had a little chat with the boys' pediatrician.  I expressed my concern about taking them to any daycare/sitter and them getting sick.  To me, daycare represents my boys going out into the real world where there are new people, new germs, and catching a cold or virus is inevitable.  The doctor warned me that this winter would be very rough on both boys due to their prematurity.  Their lungs and immunity are less developed than full-term babies. He said that we will be seeing a lot of each other this winter.  

Well, imagine my surprise when both boys developed a runny nose this week.  I played it cool for a day or two and didn't call the doctor.  The next day, they both had a tiny cough.  Yesterday morning we woke up and I thought Lawson's cough sounded a little worse, but he still had no fever, was eating his full feeds, and had slept great the night before.  By the end of the day though, he wasn't eating as well and had a low-grade fever.  I made an appointment and the doctor squeezed us in yesterday afternoon.

Lawson's cold had turned into bronchiolitis (the most well known bronchial virus is RSV although the doctor said he does not have RSV at this point).  The virus causes asthma-like symptoms so needless to say Lawson is not too comfortable.  This morning, he woke up with no temperature and was eating great.  After a short nap though, his temperature had spiked to 101.  I called the doctor and he wanted to see him in case there was a secondary illness.  After bloodwork and an x-ray, all signs are still pointing to a virus.  There's no medicine to treat it, so we are just using saline, a nasal bulb syringe, vapor rub, and a humidifier.  We are keeping our fingers crossed that the virus clears up and doesn't get any worse.  The pediatrician told us that most of the boys' colds will turn into bronchiolitis this winter- bummer!  Welcome to the next 6-7 months of our lives!

On a happier note, here are some pictures of our cuties:
(Lawson, Sutton)

(Sutton, Lawson)

(Lawson eating carrots for the first time)

(Sutton rocking the Bumbo)

Friday, August 2, 2013

Getting Back to Normal

Well, it's been a little over a week since Sutton's surgery.  His pain seems to be under control and he's not needing as much ibuprofen.  We are seeing his happy side a lot, but his cranky side has been coming out in full force as well!

The last time we spent the night in the hospital, it took a day or so for him to get back on schedule.  This time though, we are definitely a long way away from our routine.  It's no surprise it's been a rough transition home.  There was zero routine in the hospital as he went a couple of days without eating.  He was also awakened several times throughout the night to have his temperature taken, get medicine, and have his diaper changed.  So for the past week, it's be an accomplishment to get him to sleep before 9 (he had been going to bed at 7:30).  He is also waking up around 2 and 4 whereas he had been sleeping all the way until 5 without waking up.  In the past 5 days, he has probably taken a total of 1 1/2 hours of naps during the day.  Needless to say, he's spent a good deal of time crying when he should be napping.  It's been a long week:).  Thankfully Andrew's mom was here to help!

Lawson made an easy transition home- one out of two isn't bad:).  That little guy is learning to sleep through some pretty intense screaming!

Here are the boys in one of Sutton's happy moments:

It's hard to believe summer break is almost over.  I've absolutely loved getting to spend so much time with the boys.  I was hoping I would feel more "ready" to go back to work, but I'm just not there yet.  I hope as soon as I get back into the swing of things, it will get easier.

We've got one more follow-up post-op appointment in KC at the end of the month and we are hopeful to put Sutton's health issues behind us.  Thanks for the support!

Sunday, July 28, 2013

Home Sweet Home

Praise God that Sutton was healthy enough to be discharged from the hospital today!  I spent all morning staring at his monitor with an anxious feeling in my stomach.  Anyone who has spent any significant time around heart/respiratory/oxygen saturation monitors know that they can be a blessing and a curse.  NICU parents tend to base their kids' progress on these monitors all the while knowing that one shift in position or tiny foot kick can show an inaccurate reading.  I am highly aware of these facts, but I kept feeling a surge of panic any time Sutton's oxygen saturation dipped (even though I could see his rosy cheeks beaming at me). Suttie's "incident" is one we won't shake for quite some while.

The surgical team came in today and told us that if his stats remained good while he took a nap off oxygen and his next feeding went well, we could go home.  This was music to our ears- we were so excited to have our healthy baby back, plus we couldn't wait to see little Lawson!

After a good nap and feeding, we gathered our belongings and got the heck out of that place!  The staff was amazing and the nurses were so sweet to us, but we were ready to put this experience behind us.

Andrew's mom is coming up to Columbia to help with Sutton's transition back home as Andrew leaves on a business trip.  On her way she met my parents at the lake to pick up Lawson.   How lucky are we that our precious babies have two sets of grandparents who have continually rearranged their schedules and made special trips to help us take care of our family?!  We really could not have survived these past six months without such amazing parents.

We are hopeful that this is the last surgery for Sutton.  The doctor is confident that the procedure will prevent further diaphragmatic hernias as they sometimes reoccur.  Sutton has a follow -up appointment in August.  From there, we will follow up with x-rays every few months to make sure those pesky organs stay in place.  

Thank you for your Facebook messages, texts, emails, phone calls, thoughts, and prayers.  The comfort and support we received over the last few days was a tremendous help.

("I feel better!")