Journey to a New Kingdom

It has been a VERY busy few days so I haven't had much opportunity to Blog.  So much has happened so I hope your ready for another long one!

On Monday, Princess Kyleigh took a journey to the Kingdom of Loyola!  We were all sad to leave the Kingdom of Resurrection and will miss all her loyal subjects that took such excellent care of her but the new kingdom had more servants that were trained in the specific things Princess Kyleigh would need.  Her carriage arrived with a very special servant named Nancy who knew exactly how to make sure princesses are safe on journeys between kingdoms.  Here is a picture of her carriage.

Once we made it to our new temporary home at Loyola, we really needed our seat belts because things got moving very quickly.  Everyone was and has continued to be extremely nice.  Within three hours of Kyleigh's arrival, she already had scheduled visits from a Neurology; Nephrology; Cardiology; Speech Therapy; Occupational Therapy; Ear Nose and Throat Specialist; Genetic Specialist; Respiratory Therapy; and of course Neonatology.  Our heads were spinning from so many questions but the staff was excellent at trying to help us navigate through everything.  A social worker set us up at the Ronald McDonald's House which is on the hospital campus.  It is an amazing place and Bridgette and I have already said we want to give back to this amazing facility.  That, however, is for a different time and blog!!

So over the last couple of days, Kyleigh has had visits from almost all of the specialists mentioned above.  She is tolerating all of her new "staff" very well.  The quickest way to update you on everything is probably to just go down the list.  So, here it comes:

Respiratory Therapy: We didn't have our own respitaory therapist at Resurrection so this was a little new for us.  When we were at Resurrection, Kyleigh's Oxygen saturation (% of oxygen in her blood) was usually in the high 80's to low 90's (100% is perfect).  She would occasionally dip down into the 70's but would quickly recover on her own.  There were a few instances that she would get so mad or worked up over somethig that she was unable to catch her breath and would stop breathing.  By not breathing I mean, she stopped taking breaths or couldn't get enough oxygen into her lungs.  The nurses would hold an oxygen mask near her face to help her get her level up and she would be fine.  These episodes all but disappeared once she started taking the water pill (lasix).  The cardiologist and neo-natologist at Res were comfortable with the occasional dips into the 70's because 1) she was recovering quickly on her own and 2) using oxygen was not ideal for cardiac babies like Kyleigh because it can cause shunting.  This where blood rushes to the lungs.  For you and I and most people with healthy hearts, 100% oxygen in our lungs is great and can even cause a rush or a high because the blood rushes to the lungs to carry this pure oxygen all over our body.  For Kyleigh, this would be dangerous because her heart is working to hard to pump the blood and the oxygenated blood is mixed with unoxygenated blood thanks to the 2 holes in her heart.  At Loyola, the respiratory therapist was a little less comfortable with the dips into the 70's.  For a brief period of time, they put Kyleigh on an oxygen/room air blend which brought her saturation up to the high 90's.  However, Kyleigh was used to working hard to keep that number up so she continued to bring it up and often stayed at  100%.  As I mentioned above that is not good.  The poor respiratory therapists worked for hours to try to find the right balance for her only to have the cardiologist come in and say...the risk of shunting is to big...no oxygen unless she can't bring the numbers up on her own.  Kyleigh continues to prove she can do it and keeps her numbers in the high 80's or low 90's on room air.  Mid 90's when cuddling on Daddy's chest :)

Cardiology:  The holes in her heart have not changed.  He is in agreement with the original plan that Kyleigh will need surgery when she is 2 or 3 months old.  This cardiologist is not the nicest man we've met (ok he's an ASS) but he knows his stuff and that's what counts.  The best part is that he told us the only surgeon he would send us to for Kyleigh's heart surgery is Dr. Ilbawi!!  Those of you that don't recognize this name, he is the #1 pediatric heart surgeon in the country, possibly the world!!  Our plan was to get discharged from Loyola and change medical groups in the hopes to get somewhere that Dr. Ilbawi would be able to see us.  We were fortunate to have a friend of a friend connection we were going to use but now....we don't have to!!!  What a great feeling when things fall into place.  God's plan in action.  So very grateful for this small miracle!

Nephrology/Urology:  The hydronephrosis (swollen kidney) is practically non-existant.  What little swelling that is present will most likely work itself out but at the very least does not require any intervention at this time.

Neurology:  I admit, I was worried about this one.  I tried very hard to turn off the OT in my head whenever I saw Kyleigh but I could not remember what was normal or what Kevin did as an infant.  For example, did Kevin sleep as much as Kyleigh does?  Do her eyes seem to be rolling back or in seperate directions?  Why does she occasionally "shiver".  Well my fears were relieved when the neurologist said there are no concerns at this time.  I have to emphasize the "at this time".  Right now Kyleigh's brain looks like a typical 3 week old baby brain.  However, the doctor was very cautious in saying that everythig was "normal" because we already know that with the chromosomal abnormalitiies things are most likely NOT completely normal.  We just don't know what will change or how but for now things look good and we have to celebrate that!

Speech Therapy: Speech feels that Kyleigh will be on the NG-Tube for quite some time.  At least until her surgery and probably for a while after that until she learns and develops the skills to drink more by mouth safely.  She is still working on it and is making progress.  Today for example (Friday) she took 12 cc's by mouth with no trouble.  The speech therapist here is wonderful and has a good plan in place for Kyleigh.  It will be a long road but Bridgette and I feel confident that Kyleigh will learn to eat by mouth.

Occupational Therapy:  I am embarrased to say that the OT has not given us a report yet.  This OT is giving my profession a bad name :(.  Ok not really, she is actually very nice and I have seen her working with other babies.  Unfortunately she has not spoken directly to us but the nurses have told us that she is being seen regulalry and her muscle tone continues to improve!!  Both the speech and occupational therapist will be setting up a family service plan with early intervention and they will be included physical therapy as well.   This means Kyleigh will be recieving OT, PT, and Speech at home.

Ear, Nose, and Throat:  The doctors and nurses hear asked if Kyleigh's cry always sounded so quiet.  For those of you that have not had the chance to hear it, her cry is not load and sounds very raspy.  In addition, when the nurse tried to switch the NG-tube to the right nostril, it would not go in.  For these reasons, an ENT consult was ordered.  We were happy to have this consult because the speech therapist told us that even though Kyleigh does not have a visible cleft palate, it is possible to have a cleft "soft" palate meaning the roof of her mouth, towards the throat could have a cleft portion which could be contributing to her feeding difficulties.  As much as we would have loved to have a tangible reason for the feeding difficulties, the ENT specialist did a scope and found absolutley NOTHING wrong!!!  We were much happier with that!

Genetics: We have been told the geetic specialst here at Loyola is one of the best around.  She LOVES to do research and enjoys explaining things so that families understand as much as they can.  Kyleigh saw the geneticist today and we gave an extensive family history.  So to our families.....let's just say after having to sit and think about every issue or abnormality we know of in the family, I can easily say we are MESSED UP!!! LOL. Just kidding.  We don't know any more about this at this point.  The doctor is meeting with us tomorrow (Saturday) so more prayers that Kyleigh won't have a difficult life would be much appreciated!  Bridgette and I are nervous, anxious, and scared but we both know that the truth is...it doesn't really matter.  She is our beautiful daughter and she is exactly how she was meant to be.

Neonatology:  The neonatologist at Loyola is great.  She has referred to Kyleigh on many occasions as a healthy baby!!  Especially when compared to the other babies on this unit.  She is very much like the ring leader at the circus.  She knows what she wants done and how she wants it done.  SHe coordinated all the consults and anytime she saw Bridgette and I at the bedside she came to give us an update.  The best update she gave us was Wednesday!  She told us Kyleigh is just about ready to GO HOME!!

As of today (Friday) Kyleigh is pretty much ready to come home.  She will be coming home with a feeding tube (NG) and monitors.  She will only need to be on the monitors when we are not directly watching her or when she is sleeping.  Hopefully this will only be until she has her surgery.  Before they will release her to go home Bridgette and I have to take and infant CPR class and an NG-Tube placement class.  We will have to demonstrate we can correctly insert the tube first on a doll then on Kyleigh.  The company that issues the monitors has to come out to train us that as well.  Kyleigh has to pass one more test which is the car seat test.  She has to be able to sit in the car seat for a period of time (we think 90 minutes) with acceptable saturation levels.  When all of that is done (hopefully Wednesday)....Princess Kyleigh can make her journey to her Castle where the King and Queen and especially Prince Kevin are anxiously awaiting her arrival.

Your prayers and support have meant so much to us.  We have many more adventures to come with Princess Kyleigh so please keep the prayers coming and I will keep you updated as much as possible.

Here are a few pictures from the Baptism and the most recent picture of Kyleigh!