Esophageal Atresia

What is causing Simon to be in the NICU?  Esophageal Atresia is the issue which Simon is dealing with, Molly and Clint started learning of this at the 20 week ultrasound.


Definition:  Esophageal Atresia is a disorder of the digestive system in which the esophagus does not develop properly. The esophagus is the tube that normally carries food from the mouth to the stomach.


Esophageal atresia occurs in about 1 out of 4,000 births.


The cause of esophageal atresia, like that of most birth defects, is unknown.

The best part of having to wait....the #1 surgeon for this returns to Akron on May 1st and Molly & Clint and working to make sure he performs the surgery for Simon.

Update

Simon continues to have very good days!!  He has gained between 4 and 6oz. in weight!  His feed  Last week when I was there I heard him cry...such sweet music considering all that is happening.

For the next four weeks there is a bit if a waiting game.  When Simon turns 6 weeks of age the surgeons will reevaluate the distance between his esophagus and his stomach.  They will put some dye in the esophagus and his stomach and take X-rays to see the gap.  This will then determine what will happen for the connection surgery.  So pray for the gap to decrease and for this surgery to take place.  This is what Simon needs to be able to eat on his own and COME HOME!!

Molly is a free woman today!  After almost 6 weeks of bed rest and 2 weeks after baby, she can DRIVE!  Really all this means is we don't pick her up and take her to or from the hospital...she will do that herself now! :)  As any new mom can remember...she wore NON-MATERNITY pants yesterday!  Always the best feeling!

Simon's 1st Graduation

Molly & Clint received good news very early this morning, Simon graduated back to the NICU Room 4.  What does that mean?  There are 4 rooms in the NICU, Room #1 being for the babies who have the most issues....to Room #4 who are the NICU babies who are in the best of health...for the NICU! :)

  Simon is now in room 4!!!!

Here is Simon in his new room! : ) 

Can his legs be any longer?  Can you say 6 foot 5.  His toes and fingers are SO long, too cute!

So this is very good news!!  He looked strong and happy when I visited yesterday.  He was laying on his side and smiling...especially at Grandpa Conger.  He also had a massive diaper yesterday....very good news.  It was nice to see him off the lights and free of goggles.

So it looks like the week is ending better than it started.  Your prayers and good thoughts are working!!  Thank you!

Eyes Wide Open

From Molly....
"So the last 2 days have been relatively quiet visitor wise. Grandparents, aunts, and Sonny's sisters (Simon's Great aunts) and my AZD friend Stacy"

The biggest thing has been some heart rate issues, his HB has dropped very low at times.  His oxygen level remains strong and amazing!  Molly thinks the suction tube (which catches his saliva was not working correctly) she was persistent in this and they finally fixed it last night....all has been well since with his little HB.

Simon's feeds are kind of stuck at 12cc's of fortified breast milk. They aren't upping it because his tube is leaking.. its actually more of a seep.

The good news is his lights and goggles being gone. It is great to see his little eyes. He follows you with his eyes, they are so precious!  He broke my heart today, its like he was saying....let's get out of here!

Please pray that although hurdles are expected, long term health is the key for baby Simon!  Molly & Clint are more than patient and Simon's best advocates!  The NICU is a great place. but watching Molly and Clint with their parental instincts in full force already is more than powerful....Simon is one lucky little man!

Monday...I don't think Simon likes Monday!

Simon had a nice weekend with lots of rest....sleep means he is growing, so they tell us!  He looked so peaceful and cuddly when I visited him last night.  He enjoyed visits from all the grandparents, his aunts, and he met Uncle Mark for the very first time.  Ashley & Ryan visited and brought delicious dinner....Molly & Clint thank you!  I had the genius idea to take my kids to visit with their favorite Auntie and Uncle in the family center, the boys loved seeing Clint & Molly, but Leah was crazy so that won't happen again anytime soon!

Here is Simon today (above)  He actually had a few rough moments today with his heartbeat.  Molly was there when it all happened and has been assured it is normal preemie stuff, however, any mother would be scared when the heartbeat is not what is should be.  Made for a long hard day for Molly, she took a rest, and went back to the NICU when Clint came home from work.  

Please pray, that although Simon will have is good days and bad, let the good out number the bad and may his long term health be what counts!!

What is that blue tube?  I asked the same thing!  Since Simon can't swallow anything, but he goes through the motions of swallowing, this tube takes care of all the saliva, etc. for him.  His milk is placed in his feedin tube down on his belly.  He is now up to 12cc of milk per day...and yes...popped again, his first monster one yesterday!!  Gross for some, but us moms & dads know the importance! :)

More later this week!

Big News

Clint finally held the baby for the very 1st time last night, heard he got in an hour or so of snuggle time!    They did skin to skin, or what is called kangaroo care. It was so amazing to watch, as reported by Molly!  


Every parent knows the importance of POOP!  Yep, I said it!  Well, poop is finally a part of Molly & Clint's life, Simon finally did that last night.  They were waiting for it since he now on milk.  Good news, all systems a go! :)


Simon will be enjoying the visitors of many this weekend and is loving all the eCards, thank you all!  They are hanging over his little bed area.  

eCard

Yesterday while in the NICU I noticed drawings from one of Aunt Shannon's friends' kids.  I also noticed an eCard, all of which Molly was loving to read and show off.  So I researched how to send the Conger's and ecard and here is the link https://www.akronchildrens.org/cms/get_well_ecard/index.html  I know many of you feel helpless on how to send your thoughts and prayers towards Clint, Molly, and Simon...here is an easy way!  :) 

Here is the eCard from my friend Audra to Molly, Clint & Simon, thanks Audra, so nice of you!   (oops it is sideways, I'll work on that.  But they hang right over Simon's bed)

Visiting afterschool and will post about his day!  I do know he is off Oxygen and Molly is spending the afternoon snuggling with him!  Simon also took 6cc of milk already today...that is double yesterday!

eVENTless Day!!

Today was a big Day for Simon.  He had his vent removed and is breathing on his own!  He is 33 weeks 2 days if he was still in Molly's belly, but he is breathing on his OWN!!  To top it off he received 3 cc's of milk tonight, his first official feed in his feeding tube!

So today he made his first sneeze and Molly texted me this afternoon they are excited to wait for his first cry!

Molly looked well rested and calm today!  What a week.  Thanks for your thoughts and prayers.  Our Simon blog is live now and excited to share with everyone Simon's progress.  This will also help Molly & Clint keep everyone informed of all the news at the same time.


I visited with him today just before the vent....he was chilling with his shades on today!

Resting peacefully with no vent, he is almost smiling.  There is some Oxygen there, but this is just a precaution.

Say a prayer for another great day tomorrow!

Successful Surgery!

Simon had his first surgery to insert the feeding tube into his belly this morning around 10am.  The surgery took about 90 minutes and he did a great job!  He will get to "eat" his first "meal" tomorrow!  His little belly is grumbling so we know he is hungry!  Clint and Molly waited in the waiting room together.  Aunt Beth visited and Mary Ellen too.  Right before he was finished with surgery the grandparents started arriving.  Hopefully Simon will rest today!  Tomorrow starts the journey to growing big and strong so the next surgery can take place!  Keep Praying!

Under the lights

Tuesday, 4/17/2012

Today Molly was finally released from AGMC, a free woman!  Well, what this really means is she can now spend her days with Simon at the NICU.  The wait to get over there was more than painful for Molly, as we all know, getting released from the hospital takes far too long!  To keep Molly happy (and I love Simon) I walked over the ACH at my lunchtime and had a chat with Simon.  He was sleeping like a baby and under the lights. They say he is jaundiced, but he looked good to me!  The lights must be working.  His hair was precious today, looks like he already has more!  I prayed with him and let him know he just needs to grow bigger and stronger so the surgeons can fix his throat.  Keep praying, pray for Clint & Molly too, they need it!

Hurdle One

As they say on the road to health, there are ups and downs.  Baby Simon had his first struggle last night.  Molly and Clint  were told that Simon needs to grow bigger before they attempt to repair his esophagus.  The wait could be as long as 6-8 weeks.  The news is, as expected, devastating to his mommy and daddy.  This means much more time in the NICU than expected.  That is all we know at this point.  Feeding tube scheduled to be placed in on Wednesday.  Please pray for Simon to have a nice easy surgery and some yummy milk when it is all over!

Happy Birthday!

At 3AM on Saturday, April 14th Baby Simon decided it was time to make his grand entrance!  Sure he is over 7 weeks early, but he is strong and looking healthy.  I keep thinking to myself for as bad as this situation is, it is the best it can be today!  Molly looks wonderful despite a C section, she is feeling great!  The 32 week headache she has had was instantly relieved the moment baby Simon was born.  Clint is a beaming new dad and is just taking it all in!  They look so happy, well deserved after all they have gone through.
Here is baby Simon just before he was taken over to the NICU....It was a calm time, the staff at AGMC were wonderful and made it as peaceful as can be!  The nurses and doctors were phenomenal with everything, Molly is so thankful!

All we know today is the esophagus does have the confirmed gap.  We will learn more soon.  Simon is resting in the NICU, Molly will join him after released from the hospital.  In the meantime she enjoys the kind doctors and nurses allowing her to ride over the Akron Children's to visit with Simon.


Here are some more pictures from Simon's first day of life.  It has been a long 1st day.


Final Stats:  4# 1oz 18inches long!  He has super long legs and big feet, hmmmm, just like 2 of his favorite people!  He has amazing little calf muscles...I think a future marathon runner has been born!

Day 2

Today Molly and Clint went over to the hospital...Molly is still at AGMC and Baby Simon is at Akron Children's.  NOTHING but good news this morning!  It appears the doctors are more than surprised how well Simon is doing.  If he did not need surgery he would not be on the vent.  His lungs are in perfect condition and he is doing perfectly!  It looks like the surgery to connect the esophagus will take place in the next day or two.  Molly & Clint will know more about this tomorrow.

Thankfully Molly knows her limits and it going back to AGMC for some meds and rest time, she needs it.