Heather Bird Photography

We had Zeke’s hearing test this morning.  This was his fourth hearing test since birth.   Initially he failed the newborn screening in his left ear.  Since then the results have gotten better, little by little.   This doesn’t necessarily mean that his hearing was improving, but that each time they did a better test, less sensitive to movement and other factors.    Today’s test was one of the best tests for truly getting an accurate result because it measured his brain activity in regards to the sounds.    And our little man passed with flying colors!   The audiologist said, “those were just beautiful results at all four pitches.”   And “you can’t really get better results than he got!”

We will continue to test every 6 months as children with Down Syndrome have smaller ear canals and are more susceptible to fluid, ear infections and other things that could affect his hearing but to be starting at this point is fantastic.    We are so relieved and thankful!

In other news.   Zeke is very alert and loves to look around at various things, his favorites being the ceiling fans, Christmas lights and of course all of us.

He’s getting stronger day by day and is working on holding his head up.  Unlike some babies, he doesn’t seem to mind tummy time, but was extra proud when I sat him up like this.

And the biggest news… he’s starting to smile is response to us.   The boys can sometimes get a smile, I can usually get a smile and Nana (my mom) can ALWAYS get one.  He has started to smile even when I just say her name.

Thank you again for your love and prayers.
Much love,
Heather

I realized, after many people have inquired over the last week or so, that I haven’t updated most of you since we were in the hospital.   So here is a little recap and an update on where we’re at today, which is SO thankful!

There were a few initial concerns and reasons why Zeke remained in the hospital in the Special Care nursery for some extra time.   He was initially sent there about an hour after he was born when a nurse spotted his lips looking blue.   He spent the rest of him time at the hospital in the Special Care nursery.   Initially they said that he had Pulmonary Hypertension which is extra pressure in the arteries that carry blood from your heart to your lungs.    An echo-cardiogram (ultrasound of his heart) determined that he had a Coarctation of the Aorta which is a narrowing of the main vessel that carries blood to the organs.   Everyone is born with a hole in your heart that typically closes up after 2-3 days.    There was some concern that this hole may not close or that when it did close, the Coarctation would become worse making it an immediate concern.    The only way to correct the Coarctation would be surgery and it would have to happen almost immediately.    Because of these things Zeke was on oxygen and was being monitored.   He also had jaundice.  And he failed his newborn hearing screening in his left ear.

All of these things coupled with various explanations of each coming from so many different doctors and nurses made for an overwhelming time.    Then additional people  (Social Workers, Early Intervention therapists, etc.) popping in and out to give us information about Down Syndrome and to see how we were handling the news made it pretty difficult for me.    In hindsight, we had it pretty easy compared to some.   I know the specialists coming were there to make sure we had all the information we needed.  Even though I didn’t really want to see them then, I’m thankful now that they were there.    Zeke only had to spend 5 days in the hospital.   Although it felt like an eternity, I know many that have spent months with their babies in the NICU and I can imagine how difficult that can be.   We were lucky to have such amazing nurses caring for our little man, who also helped us smile through those tough days and nights.

By the 5th day, Zeke’s jaundice was in a low-risk range and he was on a fairly low amount of oxygen yet we remained there until they could determine if heart surgery would be required.   Another echo was done that day and it was determined that the hole did close and that there was no Coarctation and no surgery!   I don’t think I’ve ever felt so relieved in my life.    Both relieved his heart was okay and relieved to take our baby boy home!

We came home with Zeke on oxygen.   He was still needing some until he could get stronger.    Three weeks later, I now realize that the oxygen wasn’t so bad, however initially it was, again, so overwhelming.   They showed up at our house with a huge tank and many small portable tanks and listening to all of the many instructions made my head want to explode.   But we got the hang of it.   It became less overwhelming and eventually just more of a nuisance.    He has a pulse oximeter that measures his heart rate and oxygen levels that despite the constant beeping throughout the night during that first week home has given us much peace of mind.

And… I’m so thankful and happy to share that we’ve spent the last 5 days with Zeke on NO oxygen!   We started weaning him during the day and slowly added nighttime and he’s done just fine.   We still use the pulse oximeter at night (mostly for my own anxiety) but it’s about time to send back all of this equipment.

 

Zeke has had 2 additional hearing screenings since he failed the initial test.   Each time his hearing has improved some.   We aren’t 100% sure yet, but the ENT (Ear, Nose and Throat) Doctor said that he didn’t suspect that we would have to worry about any hearing loss.  We have another test at the end of December but for now we are thankful it’s only one ear and seems to be minor.

After so many initial scares, we are so thankful that, for now, each one has been lifted.

I can’t begin to thank everyone who has offered prayers, love and support this last month.   We’ve had many visitors who’ve come to love on Zeke, offer me company, take the older boys for some fun, bring meals and gifts and even do a house call to cut the boy’s very shaggy hair (Thank you Angelina!  I love you!).   There are friends and family from afar who’ve continued to call, text, email, send cards, gifts and meals.  Thank you, all.    I owe a very special thank you to my parents…I’m not sure we’d survive without them.  They’ve been available daily to help with the older boys and their busy schedules, to help with Zeke, to keep us company in the hospital or at home, to bring anything and everything we’ve needed at anytime.    “Thank you,” in a blog post or card doesn’t begin to do justice to the blessings we’ve felt from you all, near and far.

I hope you all have a very blessed Thanksgiving!

Much love,

Ken, Heather and the boys!

Here are some pictures from the last couple of weeks:

He loves to look around at his toys.

His brothers love to be near him.  Ricky and Zeke. (above)

Benny and Zeke (above)

Nolan and Zeke (above)

Playing with the boys.

Thank you to Grandma DeDe (who we are missing so much this Thanksgiving) for Zeke’s crib toys!  He’s loving the black and white shapes.

In the last couple of weeks, Zeke has had his first walk, pushed solely by his proud big brother who wouldn’t let anyone else have a turn.  🙂  Ricky and his friends took off ahead of us all to show Zeke around (although he slept through the whole thing)

He loved his first bath and every bath since then.

And he made his first trip to Nana and Papa’s house!

He’s ready for his first Thanksgiving!  We’re off to Nana and Papa’s again.