A Big Day - June 26, 2007

Today was a big day for the little guy.  We met with his new plastic surgeon and got some good news!  We’ll call his office on Friday to schedule the first surgery on his lip.  The doc said he’ll do it in a couple phases with the first being the repair of the lip.  Then, later, when Jake’s 8-10 months old he’ll do repairs on the palate.  Very exciting!  Sounds like we can get the lip scheduled fairly quickly! Oh, the ENT (ear, nose & throat) will go in to check his airway when the lip surgery is being done too.  That will get us on the road to getting the trach out.  It won’t come out real soon but it’s absolutely not a permanent thing. 

That’s the big news for now.  We meet with his new orthopedic surgeon in a couple weeks.  Things are going really well.  We have overnight nursing in place which really helps.

He really surprised us both today while we were waiting to see the doctor.  Andrea was holding him and I asked her, “Did you just move his arm?”.  She said, “No.”.  He moved his right arm again, a good two inches...just to show off.  Seems like the occupational and physical therapy is already helping!  He’s got a LONG way to go but he’s getting more flexible by the day.

As always....stay tuned for future updates.........as time allows!

June 26, 2007

A big day

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14 Comments

Anonymous

Hey guys,

Great news. That little nephew of mine is  a champ. I love you baby Jake. Nate and Alex love you too, and Uncle Jimmy. Hope to see you soon.

Love,
Aunt Chrissy

Tuesday, June 26, 2007 - 10:19 PM

Anonymous

That is such good news, but what else could he do with devoted parents like you two.  We'll keep praying for you all (steady progress for Jake and sleep for the parents)

Love ya,
Aunt Terry

Tuesday, June 26, 2007 - 10:23 PM

Aunt Lorry

Well, having his lip done won't make him any cuter if that's what you have in mind! All good news and one more step in the right direction. Great news on his arm. I have been thinking about nerve endings and how stimulation makes them grow and become active. Keep up the OT!  On the other hand It also may be the thousands of stimulating toys you two bought for him!
As always keep me posted.
Love,
Aunt Lorry

Wednesday, June 27, 2007 - 05:52 AM

Anonymous

good news, glad to hear he's doing well.  Fuzzy Monkey

Wednesday, June 27, 2007 - 07:44 AM

Auntie Jo-Ann

That is great news.  But what do you expect with two parents like you two.  The Good Lord knew what he was doing when he sent such a special little guy to you two.....Can't wait to finally see this little baby angel.  He really is a little fighter.  God Bless all of you.
Love
Auntie Jo-Ann

Wednesday, June 27, 2007 - 07:58 AM

Anonymous

Really good news!  You three are constantly in our thoughts and prayers.  We love you!  Keep on workin' those limbs Jakey!

Love,
Aunt Dot and Aunt Michelle

Wednesday, June 27, 2007 - 08:11 AM

Anonymous

I am so glad to hear he is doing so well!!
I look forward to more updates and pictures.
I finally found the first few original postings in my "spam" folder. Sorry I am behind on the news!! I wish your family well!
Lisa Gates

Wednesday, June 27, 2007 - 09:57 AM

Anonymous

Hi Mommies! 
We love the updates, thank you so much for finding the time to post news.  It's wonderful to hear how King Jake is doing and we are sending lot's of hugs and kisses your way!  Hope to see you all soon : )
Love,
Leslie & Mary

Wednesday, June 27, 2007 - 11:15 AM

Grandpa Gates

Andrea & Betsy,

We were really happy to see Jake on Sunday and Amazed at how much he has grown.  He has to be over 10lbs.  The therapy you showed us is terrific and obviously is improving his flexibility.  He is on my mind every day and I have a image of those dark eyes staring up at me.  He is precious and very special to us.

Love,
Grandpa Gates

Wednesday, June 27, 2007 - 11:50 AM

Anonymous

YEAH JAKE!!! YOU GO BOY!!! Wish we where closer so we could see you all. Keeping all 3 of you in our thoughts and prayers.
Love from Harrisburg, PA.
The Meadath Family

Wednesday, June 27, 2007 - 07:58 PM

Great Aunt Chris

I am so glad God put him in your care. He could not have picked two finer people to love him. I will keep you in my prayers as usual for strength and nurture and daily joys like when Jake moved his arm. I am glad to hear that you have the night nurse. If you need any backup or babysitting I am off all summer and would be glad to help out. Love,Great Aunt Chris

Wednesday, June 27, 2007 - 09:28 PM

Anonymous

I am really glad to hear he is progressing well.  Thanks for taking the time to let us know how things are going.  Hugs, kisses, well wishes, and prayers to the family!!

Michael

Saturday, June 30, 2007 - 12:24 PM

Love, Bruce and Edna

We are so thrilled to hear of Jake's progress.  You continue to be in our prayers and we look forward to meeting Jake and seeing all of you.  Keep up the the good progress and thank you for keeping us all up to speed on Jake's progress.

Saturday, June 30, 2007 - 07:58 PM

chacha

We are thinking and praying for yu three angels.  Thank you for taking time to keep us updated on Jake's progress.  We love you lots, and pray for your continued good news updates. 

cha, noel, and the three bears

Saturday, June 30, 2007 - 11:35 PM

His first 3 weeks home - June 11, 2007

Well, to say it’s been an adventure thus far would be a HUGE understatement!!!  We got him home on May 22nd.  When we got home, we didn’t have all the supplies we needed and we didn’t get overnight nursing coverage for about a week!  Luckily, between myself, Drea, and Mary Anne (Betsy’s mom) we had it covered.  Unlike most babies, who can sleep unattended, Jake needs to be monitored during the night.  If his trach gets congested, he needs to be suctioned.  And, while he does wear a heart/respiratory monitor at night, if he just starts crying...as most babies do...we can’t hear him unless we’re in the room.  He’s got a whole bunch of equipment that makes lots of noise and that doesn’t help hearing him!

All that being said, he’s making GREAT progress.  He’s up to 9 lbs. so far and gaining like a champ.  We started giving him a special bottle at feeding time to try to get him in the habit and he’s really catching on that sucking and swallowing go together! 

After doing a bunch of research and talking with other AMC parents, we’ve made the decision to move over to Children’s Memorial Hospital for Jake’s doctors and future needs.  The specialists we’ve found there have had plenty of experience with kids with AMC which goes well with our eagerness to get him on the road to start hydrotherapy.  In order for that to happen, he’ll first have to be rid of the trach.  So, keep your fingers crossed!!!

We’ll update this as often as time allows so if you don’t see anything for a while and are curious about Jake’s progress, please send us an email!!!

June 11, 2007

His first 3 weeks home   

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3 Comments

Aunt Lorry

I miss you all and wish I lived closer so that I could continue my fine job of nagging! Of course I miss Jacob the most especially that face he made whenever he heard my raspy voice!
Send pics of your yard please (or should I say my smoking area)

Tuesday, June 12, 2007 - 05:28 PM

Grandpa Gates

There is an old expression from the thirties "Everything is Jake"  meaning that everything is ok.  Well, now that he is home we can say Everything is Jake with Jake!

We really enjoyed having Jake at our house with his cousins Alex and Nate on Sunday.  Jake has been a great addittion to our lives.

Tuesday, June 12, 2007 - 06:06 PM

Anonymous

AUNTIE JO-ANN
I CAN'T WAIT TO HOLD THIS LITTLE ANGEL.  YOU GIRLS ARE DOING A GREAT JOB........
LOVE
AUNTIE JO-ANN

Wednesday, June 13, 2007 - 08:18 AM

He's home - May 22, 2007

May 22, 2007

He’s Home

A Busy Week! - May 18, 2007

This has truly been a busy, yet super productive week for the little guy!  On Tuesday he went in for a 4 1/2 hour MRI.  Because he’s an infant, they had to sedate him to ensure that he didn’t move during the MRI.  He did great!  When they wheeled him out after the procedure, he was already awake and wide-eyed.  The results came back good too.  His central nervous system looks to be in order which is a HUGE relief!

Yesterday he went into general surgery to have several things done.  They inserted a g-tube (for feeding), he had a muscle biopsy - to determine if his issues are neurological or muscular, and they did his circumcision.  Again, he was sedated and came through like a champ!  The muscle biopsy got sent out and we’ll get the results in 2-6 weeks.  The g-tube was put in so that he can get fed until he figures out how to swallow.  During the swallow study they did last week, he failed to swallow at all.  That doesn’t mean he’ll never swallow, it just means that we need to continually work on oral stimulation via a pacifier, our fingers in his mouth - he doesn’t care for gloved fingers too much though - and massage on his jawline.  Hopefully this will help him connect sucking with swallowing.

The best news of the week though is that he’ll be coming home early next week!!!  YIPPEEEEE!!!!  We are thrilled!

And, of course, I added a couple new pictures to the Photos of Jacob page!

"King" Jake's progress - May 15, 2007

Jake has had a long couple weeks.  He’s now officially been in the hospital over 3 weeks.  He’s doing pretty well...physical and occupational therapy are both really pleased with his progress so far.  Of course, we’re starting small with therapy but he’s coming along.  Drea and I do stretches with him daily and he gets some custom made splints on his wrists 4 times a day.  His flexibility gets better every day.  Our biggest obstacle now is getting him to swallow.  They did a swallow study and he didn’t really do much.  At first the docs told us to discontinue oral feeding altogether for the time being.  Today, after getting the results of his MRI from yesterday, the speech therapist said we could start trying with the bottle again REALLY slowly.  We don’t want him to aspirate (choke) on his feedings.  That being said, we have some decisions to make that will help get him home to us soon!

In the picture above and a couple on his pictures page, you’ll notice tape going across his upper lip.  That’s actually helping pull the cleft together and helping his nose get reshaped.  He’ll probably get the surgery on his nose/cleft in August or September.  For now, that’s the only timeframe we know of as far as any surgery goes.

I know I’ve been really slow in updating everyone but please be patient with me!!!  Most of our days are spent with Jake at the hospital.  He’s looking adorable and has a lot of personality.  More updates soon.....

Progress so far - April 29, 2007

Lots has happened in the last few days.  They took Jake in so they could get some pictures of his airway, lungs, voice box and trachea.  We weren’t expecting to find anything besides the tongue issue.  Suffice it to say, the Moms were more than a little surprised  when the surgeon told us that they had to give him a tracheotomy.  Apparently his airway was much smaller than we originally thought.  Once the initial shock wore off (and some soothing words from my Aunt Lorry who knows a bit about these things!   Thanks Aunt Lorry!!!) we could see that he’s MUCH more comfortable.  His breathing isn’t as labored and now, the only thing that has tape on his face is his feeding tube. He’ll keep the trach at least until the first surgery which should now be when he is 10 lbs. and 10 weeks old.    We haven’t been able to try feeding him with a bottle just yet.  We’re waiting, now, for him to get a few days under his belt with the trach tube before throwing a bottle into the mix.  That being said, he’s eating, and keeping down more milk than he should be.  It’s great! 

So, now we wait to see what’s next.  Hopefully we’ll be able to try feeding him with a bottle this week  but that’s about all we know for now.  I’ve posted a couple pictures and will post more as we take them!!!

He's FINALLY here!!! - April 27, 2007

Jacob Tyler Wood Gates-Ehlers made his debut into our world at 10:14 am on April 19, 2007.  He weighed in at 6 pounds 1 ounce and 20 and a half inches long. 

After preparing for the worst, the Mom’s were pleasantly surprised to see (Andrea saw anyway, I was still in surgery) that Jake has 10 fully formed fingers!  At first the doc’s thought that he had a cleft lip AND palate but on closer examination from the face doc, we were pleased to learn that it’s just the lip and part of the upper gums.  He does have the characteristic flat nose on the left side that will be corrected before the lip surgery.  His chin is slightly recessed which causes his tongue to block his airway from time to time, that being said, since birth he’s been breathing on his own.  The chin will be corrected, hopefully, with surgery in the very near future. He’ll definitely need at least casts but more likely than not, surgery on his clubfeet since they are pretty tight according to the orthopedic doc. 

All things considered though, he’s doing great!  He is still in the hospital and will be for a while longer.  His lungs are working great and he’s eating above and beyond the amount of breastmilk that the docs like to see....there have been messy diapers to prove it!

It’s a lot for a little one to go through but with all your prayers, love, good thoughts, and support we’ll make it through this.