We haven't updated in a few days - mostly because the boys are continuing on the path of improvement and we don't have a lot to share.  The boys are growing strong - up to 5 lbs!  And per Dr. Stapley, one of the neonatologist - they are the "most identical twins" he has ever seen.  Not only in the way they look, but the way they are gaining weight and developing.  The boys are tolerating their oral feedings well and are attempting to breast / bottle feed up to 6 times a day!  They are working hard at mastering the suck, swallow, breathe rhythm and have done well (considering they are still only 34 weeks gestation.)  With the oral feedings has come a complication that can be startling - REFLUX.  Although it sounds so benign, in these little guys - it really affects them and wipes them of energy.  If they reflux while eating, they let us know by turning purple, their oxygen saturation's drop to the low 50's (suppose to be 100%) and they get the hiccups which makes it even more difficult for them to breathe or overcome the episode.  If there is a silver lining to having our boys in the NICU - the help with the reflux episode tops the list.  When it first happened to Ethan - I was panicked because nothing I did seemed to help him or his oxygen saturation's (sitting him up, patting his back, etc).  And to stay true to Dr. Stapley's claim, Elliott had a reflux episode shortly after Ethan's.  Pretty crazy!  Luckily, the nurses were there to assist me, increase his oxygen and assure me that this episode would pass.  We are hoping that with time the reflux will improve, especially once the nasogastric tubes (feeding tubes) are removed as it is keeping the sphincter from the stomach to their esophagus open allowing the stomach contents to easily reflux.

  

This week the boys have added a new diagnosis to their list.  The list thus far:  1. Prematurity.  2.  Respiratory Distress Syndrome.  3. Anemia    4.  Bronchopulmonary Dysplasia.  Big words for our little boys.  The boys are still on oxygen - and the neonatologist has informed us that the boys' need for oxygen is no longer just a developmental issue, but that they have "chronic lung disease."  In short, they have scarring of their lung tissue that is making it difficult for them to oxygenate well.  In many cases, this scarring only affects them for the first few years of life, ie., increased risk of simple lung infections and colds becoming life threatening, higher risks of developing asthma, greater sensitivity to allergens, dust, smoke, etc.  Keep in mind these irritants/toxins (as well as germs) can remain on clothes, skin, coats, purses, etc., which can be just as concerning and harmful to their fragile lungs and immune systems - so if you are visiting the boys (NICU or eventually at home), be aware of where you have been and what you have done that day - Patrick brings clean clothes from home to change into after work.  Originally, this was only a concern for the first 6-9 months (as only respiratory distress syndrome), but due to the Bronchopulmonary Dysplasia, it will be a concern for the boys' first several years of life.  Complications from this can remain with them throughout their lives (ie. decreased lung capacity, decreased exercise tolerance, complications of asthma etc.)  We are hopeful that the boys will not have to go home with oxygen!  But I am certain that Patrick and I can take all the precautions and closely follow the given instructions if it is needed.  So with this diagnosis, as we have mentioned before - we are not trying to be reclusive when we bring them home, we have just been instructed multiple times by the neonatolgists the great importance of keeping visitors to a minimum, especially right in the middle of the flu and RSV season.  We will definitely let you know when we are ready for visitors and we look forward to have the boys get to officially meet their wonderul friends and family.  I know they are looking forward to meeting you all.  Until then, enjoy the blog and we will try to keep you updated :)  When the time comes to see the boys, please respect their health and refrain from visiting if you have any signs of a respiratory infection or even something as small as a cough or runny nose.  I cannot stress enough (or the NICU staff), RSV in adults is as benign as a mild clear runny nose or occasional cough.  RSV in premies with bronchopulmonary dysplasia (our boys) results in a hospital stay and possibly death!  We would hate for anyone to feel responsible for their illness or return to the hospital.

Okay - Mama (and Papa) bear will momentarily stand down.

Here are some of the things we enjoyed this week!

Dad got to give each of the boys their first bottles!  It was great to see Dad and the boys bonding over their first meals together.  I have been breastfeeding for all of the feedings to help establish a good habit of breastfeeding.  The boys have done so well with it that the doctors thought it was time to try out bottles.  The boys will be both bottle and breastfed when they are home so it is best to get them used to the routine while they are here in the NICU.  Plus, this allows the nurses to occasionally give them bottles throughout the night instead of tube feeds when I cannot be here to breastfeed.

We gave the boys their first baths!  Dad washed Ethan and I washed Elliott.  They surprisingly enjoyed them.  They have advanced from the sponge baths (which I hear were not well tolerated) to tub baths.  It has been a treat to do some of the tasks that are everyday routine for most parents who take their babies home from the hospital with them.  Although it is silly - I actually look forward to the 3 hour cycle where I get to wake the boys up, take their temperatures and change the diapers.  And I know Patrick and I are both looking forward to giving them their next bath.

Here are some things we are looking forward to for next week!

Celebrate their ONE MONTH birthday!  Yahoo!  The boys have been strong fighters and have sailed through the first month.  It is hard to believe it has been that long.  Time flies - and it is making me realize that I truly need to cherish all of these moments.  With as fast as one month has gone by, I can only imagine looking back and seeing them graduate high school!

Eye exams!  On Thursday a pediatric opthamologist will come in and dilate their eyes and take a look at their retina's to see how they are developing.  Along with prematurity, comes eye complications.  We have no reason to suspect any problems at this point - but all of the premies here get an eye exam to ensure that their eyes are continuing to develop normally.  We are told that most often the eye doctor looks in the eyes and determines that they are "immature."  Big surprise.  If that is the case, we will follow up with him again in a few months to have their eyes re-examined in hopes that their retinas have finished forming appropriately.

Head Ultrasounds!  The boys had their initial head ultrasounds done at one week of life.  In case you didn't see from the previous blog - no worries.  Their ultrasounds looking for bleeding in their brains was normal.  They perform routine follow up ultrasounds at one month to make sure things haven't changed. (The first week is the highest risk of bleeds but they can occur throughout the first month.)  Once again, we have no reason to believe anything has changed :)

Still with us?  How about some pics...

Julie and the Boys waiting for visitors :-)

Dad Giving Ethan his FIRST BOTTLE!

Dad Giving Elliott his FIRST BOTTLE!

Ethan after Dad gave him his FIRST BATH!

Elliott After Mom gave him his FIRST BATH!

One of the Cutest (and smallest) bottoms EVER.  It's Elliott's.
We promise Ethan's is just as cute (and small).

Ethan snuggled in after his bath

Elliott snuggled in after his bath.
He looks surprised about something...

Elliott

Ethan

Thanks again for all the comments, love and support!  Don't hesitate to call and get updates.  We can't believe its been almost a month since their arrival and have been loving every minute!  We look forward to sharing all of these small moments with you!

Peace and Love,
Mama Bear, Patrick, and our Boys!!!