Not Without a Hitch

Ella is still recuperating and so I thought I’d give her a little break from writing the blog.  So I know I’m not as funny as the little one (not as cute either), but for now I will have to suffice.  I apologize for not posting sooner; it’s been two weeks and we’ve hit a few bumps along the road.  Ella’s surgery went as planned on the 16^th.  She got her G-tube (feeding tube) put in and her rectum rerouted to its appropriate spot.  You can see in the picture the large appliance on her belly that is holding the feeding tube in place.  Thankfully, she won’t have that forever.  In 2-4 weeks, when she is a bit bigger and her stomach is more healed, they will replace the appliance with what is called a mickey button.  Basically it is a flap (flush to her stomach) that we will be able to open and close when she needs to be fed.  Her new bottom looks amazing.  In fact, the most exciting thing that happened two days after the surgery was that she pooped out of her new hiney!  This little event that us healthy folks do every single day and take for granted was a milestone for my baby Ella, and one that we celebrated.  So all in all her surgeries went well.  She came out of the OR looking great, until we noticed her foot.  Before surgery an IV was placed in her left foot.  She couldn’t eat for 6 hours prior to surgery and this was making her quite mad.  She was kicking (again with the bicycle), screaming (not literally of course), and turning beet red.  When they got up to the OR, before they even put her to sleep, they realized that her IV had infiltrated.  When this happens the IV fluids leak into the surrounding tissue causing a chemical burn.  This was upsetting for us and certainly painful for Ella, but it has since improved and looks a lot better than it did a week ago.  And as if this little girl needed another thing to cause her discomfort, her trach site (called the stoma) became inflamed last week and began oozing discharge.  While in the OR the anesthesiologist recommended they change her trach to a cuffed one.  This kind of trach allows for minimal air leaks.  On Friday, when Erik and I performed her trach change, we noticed that her stoma looked very irritated and swollen.  The ENT thinks it is inflamed because of her skin not being used to the different type of trach.  They’re giving her steroid drops down the trach, which hopefully will help the swelling and redness come down.  So with good reason, Ella has had days when she’s been extremely agitated and fussy.  On her bad days, she cries often and is inconsolable.  She is off the morphine, but they give her Tylenol from time to time to take the edge off.   Yesterday was our first good day, thank God.  She took long naps, but also had many calm awake periods.  She played with the occupational therapist and even practiced sucking on her passy.

As for Erik and I, we too have our good days and bad days.  For Erik, it absolutely kills him to leave Ella and I on Monday mornings.  We keep in close contact during the week, but of course he wants to be here and see for himself what’s going on with the little one.  For myself, it is very difficult to be without my husband and family.  There are days when I could really lean on them physically and emotionally, days when the stress of it all starts to drain you.  There are still times when we mourn the loss of a typical baby experience.  After three months of living our lives in a NICU, we long for that day when we can take Ella home and finally be a family.  Never in a million years would we change having Ella.  Sure, we wish she was healthy - we definitely would change that if we could.  And certainly if we could, we would take away all of her pain in a heartbeat.  But, despite all the heartache that we are going through she remains the best thing that has ever happened to us.  She has brought a joy to our lives unlike anything we have ever experienced.   On days when I am down, I try to remember that it is not about me, but about Ella.   She is our mission, the reason we wake up each day, continue to put one foot in front of the other and keep going.  And every morning when I arrive at the hospital and see her beautiful eyes and sweet lips, a smile comes to my face reminding me of how blessed I am to have her in my life.         

Thank you again for all your prayers for Ella and our family.  Please continue to pray for her healing and our strength.  

Love always,

Nina

Another Lesson

This past week was bittersweet.   I lost my roommate, John.  He was brought here after his mommy noticed that his tummy was getting severely distended.  It turned out he had a neuroblastoma.   Mommy was sitting with me on the sleep chair and the nurses were preparing to transport John to radiation when all of a sudden nearly 30 doctors and nurses blast through the doors attempting to revive this helpless baby.   Mommy was shaken up and after a few minutes they asked her to leave with the social worker.  When she returned an hour later she learned that John did not survive.  She heard his parents behind the screen sobbing, devastated by this horrible and completely unexpected news.  Mommy wanted so badly to pick me up and hold me in her arms, but she didn’t.  She wanted to be sensitive to John’s parents.  As they walked out of the room, she didn’t want to remind them of the thing they will no longer be able to do – hold their precious child.  It was a sad day, but mommy’s eyes were opened from it.  Her and daddy have been getting upset at the fact that it has been nearly three months since Mommy has been away from home and her family.  They have been upset that they can’t bring me home yet and that they’re not even sure when they will be able to bring me home.  After John didn’t make it, Mommy realized that they have to be grateful that I am here, that I am strong, and for the amazing progress I have shown.  The events of the day brought her back to August 7, 2009 when the docs told her I might not survive.  It reminded her of how far I’ve come and just how thankful she should be because of that.  

As for me, I am feeling much better than when I last wrote.  I am getting back to my normal self, no longer lethargic and breathing fast.  I am now eating 60mls of fortified breast milk every three hours.  I am packing on the pounds, weighing in at around 7lbs 6oz.  Do you believe one of the nurses even called me thunder thighs!  Unreal…damned if you do, damned if you don’tJ.  I am also back to sprinting now.  Today, I went off the ventilator for 8 hours straight with no problems.  My surgery is set for this Friday, October 16^th and I don’t think I’m going to get out of it this time.  I just ask that you pray for God to continue watch over me and touch me with His healing hands.  My mom asks for prayers that He helps me to recover quickly and that He guides the hands and hearts of the doctors and nurses taking care of me.  I think my feistiness along with your prayers will help me to live up to my nickname here at CHOP, “NICU Rockstar.”          

Love and God Bless,

Ella Rose

Surgery Postponed

The stars didn’t quite align for me to have my surgery on Friday.  It all started this past Monday.  The docs did their rounds in the morning and because they thought I had a great weekend they not only bumped up my sprints to 6 hours twice a day, but they also increased my feeds to 55mls per feeding.  The latter I was psyched about because I don’t know if you noticed, but I’m a hungry little girl.   Plus, I’m growing so I need all the calories I can get.   Believe it or not, I am now 6lb 12oz and proud of my chubby legs and adorable rolls (a little scared though, cuz sometimes my mom and dad say they want to eat them…not too sure what to make of that).   Anyway, little did the docs know that I was brewing something.  On Monday, I had to end my sprint an hour early because I was retracting (using accessory muscles to breathe).  This means I was getting tired and thus having difficulty breathing.   Then on Tuesday, not even an hour after I started my sprint I began getting tachypneic.  Fancy word, right?  My mom’s medical vocabulary is becoming pretty extensive.  In fact, it’s funny because sometimes the docs go to her for updates rather than the nurses.  So that big word, tachypneic , just means that my respiratory rate was high, in other words I was breathing fast.  This coupled with me looking lethargic and having a high CRP level (measures inflammation in the body), made them suspicious that I am under the weather.  The docs felt that they rather not send me to the OR when I’m not at my best; when I’m not 100 percent.   So I wiggled my way out of it for now, but I’m sure I won’t be able to put it off forever. 

In other news, I am starting to make some progress in the area of sucking.  Not only is my jaw small, but my mouth is not so spacious either.  I like sucking on my mom’s finger, but not so much on that thing they call a passy.  The passy is not nearly as soft and malleable as my mom’s finger.  Plus, I get frustrated with the passy because I’m not able to really control it in my mouth.  Oral stimulation is important for me because trached kids sometimes develop oral aversions, especially since they are not used to eating through their mouths and tasting food.  Also, my mom and dad each completed their first trach change.  This must be done once per week so that bacteria don’t develop in the trach and get me sick.  Mom and dad cleaned my stoma (the opening where the trach goes in), and then pulled out the old trach and the respiratory therapist put the new trach in.  Mom said her stomach dropped the second she pulled the trach out.  Each time they change my trach, the worry is that they won’t be able to get the new trach in and that I won’t have an airway.  But, thankfully that didn’t happen and they know what to do in such an emergency situation like that.  The final good news of the day is that from a developmental standpoint I am developing appropriately so far, yeah!!! Friday mom met with the developmental psychologist, who meets with parents of all the “old timers” in the unit.  To qualify as an “old timer” in the NICU you must be 2 months or older.  I feel bad for my 7 1/2 month old roommate, Max.  He must be considered ancient!  So I am doing things like focusing on faces and bright colors, following people as they move about me, grabbing at toys, my face (the scratches prove it) and any other items I can get my hands on, adjusting to new positions and experiences (the swing, papisan, etc).  Speaking of, that vibrating chair is calling my name right about now.  Gotta run, but I will update you when I get a new date for my surgery.

Love always,

Ella Rose