Milestones

  It's hard to believe another week has passed, but we hit a few milestones in the last seven days.  The first and probably biggest for Mike and I is this was the first week we have not had to go to the hospital since January.  Yes, it was in January that we transferred our care to Advocate Christ Hospital and started seeing the Maternal Fetal OB's where we met with them weekly until we delivered.  You sure can pack a lot of ups and downs into six months.  Knowing that Lucy's second surgery will happen this year means that the next six months are sure to be exciting to say the least.

Enough babble, we all know you are reading this for Lucy updates, so I'll just move along.  Lucy turned four months on Friday and although it was Friday the 13th, nothing freaky happened.  That morning she weighed in at 3.73 kilograms....the same size I was when I was born.  What a chubaroo....me I mean!  This morning we hit the second milestone, four kilograms.  For those wondering, that comes to eight pounds fourteen ounces.  We are that much closer to scheduling her heart cath (Doctors are waiting until she hits 4.2 kilos).   The procedure is done in the cath lab where they go in through her groin to take pictures of her heart.  It is a same day procedure, but they keep the kids overnight to monitor.  It will tell us if Lucy is ready for her second surgery, The Glenn.  If we are lucky she will hit 4.2 kilos by Friday and we can have it scheduled!

  The best news of the week though is Lucy drank from a bottle.  As most of you know due to being intubated after birth her suck/swallow reflex did not develop and we have been working since after surgery to teach her how to eat.  It started first with getting her to suck on a pacifier.  Then we added dips of breast milk to get her used to liquid.  When she was doing good with that we used a syringe to drip milk onto the pacifier while she was sucking.  And last we introduce the bottle.  When giving her a bottle, Lucy has to be sucking on a dry pacifier first.  Up until this week, she would take two sucks on the bottle then gag and choke.  Since we want to make sure this is a positive experience, we usually stopped after that.  This week, we tried something a little different.  While sucking on the pacifier we used the syringe to drip milk to prepare her, then we switched out the pacifier and put in the bottle.  She took two sucks, closed her eyes, paused and swallowed, then  two more sucks and did the same thing.  She took ten milliliters!  I almost couldn't believe it.  Since then we have been trying two bottles a day.  Sometimes we do really well and other times we throw up down mom's shirt.  We will see the speech therapist at the next appointment and she will evaluate Lucy to see if she is ready for a swallow study.  Passing a swallow study would mean she gets to eat by bottle and we can remove that pesky feeding tube that I am terrified on a daily basis she will pull out.

  The last milestone was she stopped another one of her medications.  Lucy was on captopril for blood pressure.  It is a huge milestone because this medication can lower oxygen saturation.  Right now she has been consistent at around 78 -79%.  We are hoping to see a rise because at our appointment this Friday we will be doing an oxygen test.  This is where they turn off her oxygen, put on the pulse ox and monitor her oxygen levels.  If she can keep her levels above 75 % we will get to do a trial at home over the weekend off oxygen.  If the trials goes well, the doctors will take her off oxygen for good.  That would mean one less tube and removing the cannula that irritates her nose so much.  This would be just an amazing step as it would give us a little more freedom to take her places and be out of the house.

In the coming week we ask specifically for prayers about her oxygen test and bottle feeding.
 - That her oxygen saturation levels can maintain between 75 -85 % without the help of oxygen
 - That she continue to make progress eating out of a bottle.


and for those of you wondering about the outcome of Lucy's four hour Father's Day nap.  It turned into an eleven hour overnight sleep.  That chick was tired!

Just a few shots from this week:

Sometimes she can just barely stay awake.

 Trying out the bumbo...not quite big enough for it

Where's my pot of gold?