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. 

We have a due date! - March 25, 2007

Well, the docs called last week and have FINALLY made a decision about the method of delivery.  Betsy will be having a c-section on April 18th - one week before the regularly scheduled due date - or 39 weeks, for those counting along at home!  Unsure of the time yet, we’ll know more after our appointments on Thursday.  We’re both kind of relieved actually.  No need to put more stress on the baby than there will already be.  Stay tuned for further updates!

Most Recent Dr.'s Appt - March 5, 2007

Well, we had both an ultrasound as well as a regular OB appointment last Thursday.  I’m happy to report that there is nothing new!!!  Whew, feels good to say that.  I’ve gained about 8-10 pounds so far, and the baby weighs 4 pounds as of now.  Next time I post here, I’ll include a picture! 

Next week we meet with the pediatric “plastic surgeon”.  From everything we’ve heard he is a fantastic doctor.  He does amazing work and does work for kids in other countries - maybe even with Doctors Without Borders.  We’re both looking forward to meeting him so we can get some of our questions about the cleft lip procedure and implications answered.  With the doctor we’ll also get to meet the orthodontist who works right along with him. 

So far, our team is GREAT and they seem to be in constant communication with each other after each of our visits.  We go back to the OB next week and have another ultrasound at the end of the month.  They’re still trying to determine whether or not I’ll need to have a c-section.  The concern is that the little one may not have the necessary flexibility to ease on out of the birth canal without getting stuck!  Stay tuned for more details on that.

We appreciate and are VERY thankful for all the great thoughts, prayers and everything else you’ve all been sending our way!

Things are Looking Up! - February 18, 2007

Well, we managed to make it through January and most of February without too much more bad news.  We did find out that the little one (notice, no hint of gender!) has some possibly serious issues with his/her hands.  The docs can’t tell yet if fingers are present and if they are, if they’re all there....so...more wait and see.  Betsy did have an MRI to check the baby’s brain development and the preliminary findings look good.  We’re waiting for the top neurological radiologist to get back from vacation to confirm those prelim findings.

We got to meet the the majority of our new TEAM of doctors.  There’s a neonatologist, pediatric orthopedic surgeon, a hand specialist, a maxilliofacial/cranial specialist, our 4 ob’s, 2 maternal/fetal nurses, a social worker, a genetic specialist and his assistant.  Sounds to us like the little one will be getting the best available care. 

We got to take a tour of the NICU (neonatal intensive care) where the baby will go immediately after birth.  A nice facility!  No one is sure yet how long he/she will be there.  Sounds so far like treatment will begin during the first week.  Physical and occupational therapy will continue for several years.

That’s what we know for now.  We have another ultrasound on March 1st and from what we’ve been told, Betsy will get to have another MRI in the next month or so.  If you’ve never had one, it gives claustrophobia a WHOLE new meaning!!!

Thanks for all the love and support!

A Long Stressful Month - January 28, 2007

This had to be one of the longest, most stressful months of our lives.  On January 2nd, we had a regularly scheduled ultrasound appointment.  It seemed as though things were going fine - when the little on felt like cooperating.  At the very end, at least when the tech was done, she paused and looked at us so seriously.  She said, “I usually don’t say anything and let the doctor come in and talk with you but since I’ve worked with you for so long, I have to tell you, I see some problems.”  WHAT?!?  Just a month ago things were fine.  We asked what the concerns were and she said with the face and the limbs.  What did that mean?  She said the doc would be right in to go over things with us.  When the doc came in, he basically repeated the entire ultrasound, showing us the trouble spots in 3D.  He said that there’s a cleft lip (unsure of the palate since he can’t see it) and two clubfeet.  He also said that the umbilical cord only has two of the usual three vessels.  Any of those taken independently, he said, we no big deal  BUT when found together (and he also thought that there was a problem with the hands too) they can be indicative of a fatal chromosomal defect called trisomy 18.  With trisomy 18, if the fetus makes it to birth the lifespan is no more than a year.

We were devastated!  Well, I guess that’s an understatement.  The doc said only an amniocentisis would rule out trisomy 18 definitively so we did it right then and there.  Unfortunately, even the preliminary results would take 2-3 days with the final absolutely conclusive results taking 10-14 days.  Waiting for the preliminary results was absolutely horrible.  We ran through every possibility good and bad.  And we waited.  Finally, the doc called on Friday morning to tell us that the prelim results were normal - no indication of trisomy 18 but we’d have to wait for the final results to be absolutely sure.  So...we waited.  The doc called the following Friday with the final results....normal - NO trisomy 18 nor any other chromosomal problems. 

WHAT A RELIEF!!!  This meant that yes, we will in fact have a child.  The little one will need surgery for the lip and probably casts for the legs but both are fixable and well suited to a normal, fully functional life.  That left us with a question about the hands.  Since there’s no chromosomal problems, one of the other docs (there’s 4 in the group) told us that it would be REALLY rare for there to be any problems with the hands.  Chances are, the little one isn’t opening his/her hands during the times we’ve had ultrasounds.  Oh yeah, we also had a fetal echocardiogram to check the heart, it’s all good, as is the brain.

Our next steps involve starting to meet with a team that includes a maxillio-facial doc, a pediatric orthopedic surgeon, our ob’s and a social worker.  We’ll meet with them for the first time early next week to discuss everything from what we can do now until birth and what will happen after birth.  From what we’ve read, most of the fixing will start almost immediately after birth.  So, it’ll be bumpy at first but eventually smooth!  Keep the good thoughts, prayers, support, and love coming. They say it takes a village and we’ll need all the help we can get.

More updates to follow as we know more!

It's Official - October 26, 2006

This is the moment we’ve ALL been waiting for.  After a year of trying and being disappointed time and time again, Drea and I are FINALLY pregnant!  I’m about 13 weeks along and doing good so far (knock on wood!).  The baby is due on April 29th.  For the first 12 weeks we were at the doctor every week and have the ultrasounds to prove it!  Now that we’re at the OB doc, we’ll go about once a month.  Needless to say, we are thrilled, shocked, amazed, and truly excited.

As soon as we get a good, clear, ultrasound photo, I’ll post it!