Just for Fun

Most of you know me well enough to know that no matter what the situation I always find a way to laugh and have fun.  This time in my life is no different, so I thought I would share a couple of funny things that have happened during our stay.

Heavy Recruiting

The cardiologist Dr. Vanbergen, has been trying very hard to recruit me to be part of the Advocate Pediatric Team! He has mentioned I'm an OT to literally ALL the staff he has come in contact with! Every time a new person came in to the room they said, "So I hear your an OT! You should talk to the rehab manager."  This went on all day every day until finally the speech therapist physically brought her manager to the room to talk to me. We finally agreed that I will at least build my resume in the Advocate system. I think Oak Lawn is a little far to go to work every day, but I'm a firm believer that everything happens for a reason, so who knows what may come of it.

The Not-So-Revolving, Revolving Door

The entrance to Hope Children's Hospital is a very nice big blue awning and very welcoming to children (and adults too). In the center if the entrance there is a huge automated revolving door complete with giant stuffed giraffes. Bridgette and I have come to the conclusion that there is a hidden camera show secretly taping our entrances and exits from the building. Why do we think this? Probably because more times than not when we walk up to the door that is usually already in motion, it comes to a complete stop. Then as we decide we should use the manual door on the side, it starts up again. So we decide to go in the revolving door.  It keeps moving long enough to seal off both exits and comes to a complete stop! Yes, there we are....trapped....the stuffed giraffes staring us down. Multiple staff walk by but nobody seems to notice the two full grown adults in the giraffe cage! Fortunately this is a busy hospital and more people approach the not-so-revolving, revolving door long enough for it open up so we can walk out. This has not been a one time occurrence! You would think after it happened once we would have learned our lesson but no, surely it won't happen again right?!  Wrong, this happened at least twice.  The door also revolves to a closed position so that we can't even get in! I guess we will see what happens when we try to leave today.  If you don't hear from us, someone check with the giraffes!

The Hellivator

Kevin has been coming to visit us at the hotel almost every day. We've been staying on the 5th floor which means we take an elevator multiple times a day.  Kevin loves to push the call button and of course ride in the elevator. We have an elevator in our building at home so this was not new to him.  We have heard him say the word elevator many times and he always said it correctly.  Yesterday, as we were waiting for the elevator, he referred to it as the "Hellivator". We laughed it off and stepped in, pressed the lobby button and the doors closed. We rode down to the lobby and the doors opened...briefly...then closed again. We tried pressing the door open button, the lobby button, any other floor button, nothing worked! It was only a few seconds but a little panic started when all of a sudden the elevator started going up. I was able to press our floor and when the elevator got to floor five, it slowed down, then kept going. . . and going...we got to around the 10th floor and I began pressing all the remaining floors. Finally the Hellivator stopped on the 11th floor and the doors opened. This time I jumped out and stood so the doors couldn't close ( or at least I was hoping they wouldn't) and told everyone to get off. We waited patiently for the other elevator and it took us uneventfully down to the lobby. I informed the front desk and with a slight hint of "this man is crazy" the woman called maintenance. I don't think they did anything to fix it though because later that night my trip down to the 4th floor to get ice, included a stop on the 12th floor and the Executive Lounge!  I'm not sure what Kevin knew that we didn't but I know I'm listening closer to what my 2 year old has to say from now on.

4 Days And Counting

It has been a long few days! Sorry there haven't been a lot of updates but sitting down to write one, usually leads to my eyes closing and me falling asleep. As you read in the previous post, the surgery went great! So many staff have told us how well Kyleigh did and what a success it was. That is an awesome thing to hear!  During surgery, the team discovered that Kyleigh has a small and "tricky" air way.  She was difficult to intubated and required fiber optics to guide the anesthesiologist. The reason I bring this up is that this is also the reason the breathing tube stayed in a little longer. They waited until the anesthesiologist was available so that if she didn't do well when it came out, they would be able to put it right back in.  She was successfully extubated Tuesday morning!

Tuesday was a great day! It was so good to see Kyleigh without the breathing tube. Family and friends all expressed relief and joy.  One of my Aunts put it best when she said, "I think we are all breathing a little better too"!  Her NG-tube feedings were started and everything was looking great. The rest if the day was spent watching her sleep and talking to doctors.  In the meantime, our little man Kevin, was starting some excitement of his own. On Tuesday he developed a fever and vomited. His fever got up to 104.2! He still wanted to come to see us at the hotel and we didn't have the heart to tell him no. Plus we really missed him. It seems he just needed some mommy and daddy time (and a little children's Tylenol) because by Wednesday early afternoon his fever was gone!  Phew, one situation resolved but little did we know what Kyleigh had in store for us the next day.

Wednesday morning we woke up to a phone call from the PSHU.

 "Hi Mr. Taylor it's Meagan from the PSHU. Kyleigh is fine now but she had an event a few minutes ago. She was doing a 'tongue clicking thing' and her eyes were glazed over. She wasn't breathing and we lost her blood pressure. We did have to do chest compressions and bag her but in less than a minute she was back like nothing ever happened. The entire event lasted less than 2 minutes."

After the room stopped spinning we went over to the hospital right away. The nurses said at first they suspected a seizure but the doctors were confident it was NOT. After much discussion and testing, it was determined that it was a result of extreme acid reflux! I KNOW RIGHT!?  I thought it was crazy too! I will try my best to explain how this is possible.   I will have to go back to my days in anatomy class to confirm my understanding but here is my best shot. One of the nerves in our body called the vegus nerve runs down the entire length of our body and is very close to the surface near the esophagus. When this nerve is damaged or injured or just plain stimulated, the body has a negative response such as a drop in blood pressure, decrease in respiration, or in Kyleigh's case all of the above. The nurse told me that sometimes even just suctioning a baby can cause a vagal response. So everything is fine but wow, what a way to start your morning!!

During the day Wednesday Kyleigh had a swallow study done. This is a video x-ray of her mouth, larynx, pharynx, and esophagus during a swallow to see if the liquid is "going down the right pipe".  In addition to finding out if she can swallow safely, the doctors wanted to find out if the anatomical structures were correct. They suspected there may be a fissure between the esophagus and larynx (wind pipe).  If this were true, it might explain why Kyleigh's belly fills with air so easily and why acid reflux may be so irritating to her airway.

The results of the swallow study were all good. Her anatomy is normal. No fissures. It also showed that her swallow reflex is normal and she does not aspirate (bring liquid into her lungs).  She does have difficulty with the oral phase of swallowing, meaning she does not coordinate the movements of her tongue well to bring liquid from a nipple to the back of her throat in order to swallow.  This is most likely due to her small and recessed chin.  This means drinking from a bottle or breast will be very difficult for her.  The good news is that this is a skill that can be worked on and even if it doesn't improve, as she moves on to solid baby food she should do just fine.  It was determined that the NG-tube feedings could continue (they had stopped after the event) and that Kyleigh should try to take 5ml of each feeding from a bottle!

The chest tube that was draining any extra fluid in Kyleigh's chest and from around her heart was supposed to come out Wednesday.  Thanks to the event of Wednesday morning, the doctors decided it was best to leave it in to make sure the chest compressions did not cause any bleeding etc. They also did a chest X-ray to make sure the compressions didn't damage the breast bone closure.  It did not.  All looked normal.

Thursday morning did not start as exciting as Wednesday.  No phone calls to scare us to death.  Instead, we called the PSHU to get an update.  Kyleigh did great overnight.  No drops in blood pressure etc. Only needed pain medication once, and best of all....the Chest tube was removed!!  This was a big deal because it meant we could finally hold our little girl.  We last had her in our arms at 7am Monday morning!

We got to the hospital to find her resting peacefully.  We did not want to wake her up just because we wanted to hold her so badly. So we waited....and waited...and waited.  This little girl just wouldn't wake up.  The nurse reassured us everything was fine. It was most likely because until now, Kyleigh had at least a little discomfort and was finally able to rest.  However, the nurse said that her Hemoglobin was low and Kyleigh was going to get 2 units of blood.  We were happy to see Kyleigh getting what she needed but we were not allowed to hold her while she was getting it. So we had to wait...again.

By this time, our little man Kevin had arrived to spend some time with us.  We swam at the hotel and went out to eat.  After a lot of quality time with him, he left with grandma and auntie Kim.  Even though we know he is well taken care of and loves spending time at grandma's house, seeing him leave each night has been really hard.  I miss my buddy!  I keep telling myself that neither of them will remember this, thank goodness. But I will!

So we made our last visit up to the hospital for the night and to no ones surprise, princess Kyleigh was sound asleep.  This time we didn't let her sleep.  The nurse helped us get her out of bed, making sure that all of the wires and tubes stayed connected and untangled and placed her in Bridgette's arms.  Instantly you could tell it was exactly what they both needed.  Kyleigh cuddled to Mommy and let out the biggest sigh.  The monitors were proof of what I like to call "Mommy Magic".  Kyleigh's heart and respiration rate slowed down and her oxygen level jumped from 90 to 100.  All signs that she could not be more comfortable.

I got to hold her too.  However, my experience was a little different.  She cuddled up but squirmed a lot and couldn't seem to settle completely. Then she very loudly loaded her diaper!!  Once she finished, I got the sigh Mommy got too.  When it was time to put her back, the nurse came to help.  This is when Kyleigh pulled out all the stops to show she is Daddy's girl.  She gave me the saddest puppy dog eyes, pouted out the bottom lip, and whimpered! SERIOUSLY!?  Even the nurse got choked up! I told her if I could sneak her out I would, but it just wouldn't be a good idea.  I think I was convincing myself more than Kyleigh.

We helped the nurse get her settled and set up her next feeding before we left for the night.  We are going to try to get some sleep.  We hope tomorrow will bring more good news and maybe move out of intensive care.

Thank you all so very much for your prayers and words of encouragement.  They help more than you will ever know.  I will attempt to post a blog of pictures.  Some people don't large to see pictures of Kyleigh connected to the tubes, wires, and machines so I will title the blog "Hospital Pictures". This your fair warning that if you don't like these kind of pictures...don't read that blog :)

Surgery Day!

Today was the day. Kyleigh had open heart surgery to repair the 3 heart defects. Before I go into all the details, SHE MADE IT THROUGH JUST FINE AND IS DOING GREAT!

We had to beat Christ Hospital at 6am this morning for a 7:30am surgery that was to take anywhere from 4-7 hours. The staff at Hope Children's Hospital was/is amazing. They made us feel as comfortable as possible and promised to take good care of our baby. At 7:35 they took Kyleigh into pre-op to get her ready.  This was the single most difficult thing I have ever had to do in my life. To hand her over to the surgical team, knowing what was about to take place, was excruciating! By 9:15am the nurse came out to tell us that they were already underway.  She was on the heart/lung bypass machine and they were beginning to repair the holes.

There were some complications before starting because they were not able to get in all the IV's they wanted but were able to put in a central line which was the most important one.  Then, they had trouble intubating her because she has a "tricky" airway. All in all in she was off to a great start.

To our surprise, only an hour later, the nurse came back out and said the holes were closed and they were getting her ready to come off bypass. They were hoping to have her off bypass and breathing without the tube before bringing her to the Pediatric Surgical Unit (PSHU). A painfully long half hour later she was off bypass and closed up.  They were beginning the process to extubate to see if she was ready to breath on her own and we were told we could see her in about an hour. True to their word, they came to get us an hour later to take us to see our little princess.  They were not able to take her off the ventilator at that time because they wanted to be sure she could support her own airway since her jaw is smaller.

As of now 4:45pm she is resting comfortably and waking up gradually.  She is still intubated but fighting it well. I will post another update when there is more to tell.  Bridgette and I can't thank you all enough for your thoughts and prayers. The support has meant everything to us and we know your prayers have made all the difference.   Princess Kyleigh is certainly a fighter and we are confident she will be off the ventilator soon and well on her way to recovery. In the meantime, more prayers certainly couldn't hurt.

Forgot the picture

In my last blog I said I would include a picture but I forgot to put it in.  So here it is, the reason for my everything:

Our New (but temporary)Normal

So by now you probably have guessed…Princess Kyleigh is HOME!!  Thank you all so very much for your love, support and prayers.  We still have a very long way to go but having our princess home makes things so much easier.  As any of you who have children know, having an infant in the house may make caring for her easier, but it certainly does not make ANYTHING else (like writing a blog) easier!  Bridgette and I were spoiled when we had our son Kevin because he slept through the night from day one.  Whenever he did wake up to eat, Bridgette was nursing so it was a quiet and relaxing time.  Kyleigh is very different in that she HAS to eat every three hours whether she is awake or not and she is fed through her NG Tube which is easy to do but requires some set-up and of course monitoring. Oh and I am very much a part of that LOL.  So needless to say we had some adjusting to do and during the time I used to write this blog, I am now feeding Kyleigh or getting some much sought after sleep. 

To be honest, I considered not writing anymore, Not because I don’t enjoy it and certainly not because there is nothing going on, but I felt since the flow of new information had slowed down, everyone knew what was going on by word of mouth.  I was very wrong.  I guess I didn’t realize just how far this blog reached and how many people come here to find out how Princess Kyleigh is doing.  It has been wonderful to run into people that I don’t see all the time and have them ask “How is your beautiful little girl, when will she be able to come home?”  “I have been checking your blog but there haven’t been any updates since she went to Loyola!”  Princess Kyleigh has certainly made an impact in so many lives.  So for those of you that don’t get the regular flow of information from immediate family and close friends, I apologize and this blog is for you J

Kyleigh was discharged from Loyola on April 4^th, just 2 days before her 1 month birthday.  Bridgette and I had to prove we were ready so to speak by taking a few “classes” at the hospital.  We had to take an infant CPR class; verify the prescriptions were correct and demonstrate that we knew how to administer them; demonstrate that we knew how to feed her through the NG-tube; and lastly we had to learn how to insert the NG-tube in the event Kyleigh pulls it out.  Learning to put the NG-tube in was a very emotional and unpleasant experience but Bridgette and I both got through it and while, we haven’t had to change it yet without the help of a nurse, we are much more comfortable with it now.

As the title of this blog states, we definitely have a new (but temporary) normal.  Kyleigh’s castle has many visitors who come to check on her.  There is a home health nurse that comes 1-2 times a week to weigh her and see how she is doing overall.  There is also a public health nurse that comes once a month to check on all of us, but especially Kyleigh.  Since Kyleigh was in the NICU her name is given to the state as an “at risk” baby.  The nurse is required to visit (whether we like it or not) and provide us with resources for support for Kyleigh and the family.  It is actually a very nice service so thank you to all of you Illinois tax payers LOL.  Once a month the Home Health Company visits with boxes of feeding supplies, most of which we do not need.  I have contacted both my insurance company and the home health agency to try to change the order, but I am told this is what gets sent to “NG-tube patients”.  What a big waste of money and resources!!  My love/hate relationship with the insurance company and the home health agency can be a topic for a different blog LOL.  Lastly, Kyleigh will be visited regularly by some Early Intervention Therapists.  They are all coming out on May 17^th to complete their evaluation and determine which of them Kyleigh will need.  I am sure there will be many blogs to come about this since I have already voiced my opinion to the case manager when I found out that the one constant person on Kyleigh team will be a Developmental Therapist.  For those of you that do not know, there is a not so pleasant relationship between OT’s and DT’s.  Based on their title, you are probably thinking they are perfect for Kyleigh, and to a certain extend you are correct.  The problem is in order to become a DT one simply needs to take certification course to become licensed as a DT.  Meaning, no matter if you background is in medicine or auto mechanics you can become a DT.  So I have already told our case manager that I expect to see background information on any DT working with Kyleigh, not just their DT license.  In addition, the DT profession is constantly trying to do the job of an OT and infringe on our practice act but that is neither here nor there in this particular situation.  If Kyleigh needs a DT, she will have a DT.  I will just make sure their background is appropriate!

Over the few weeks Kyleigh has been home, her breathing has changed pretty dramatically, in that she is breathing faster and harder, especially when she is eating.  It is to the point now that she will just go to sleep while she is eating because it is too exhausting to participate.  We told this to the cardiologist during our office visit and he agreed but said, as difficult as it is as a parent to see your child struggle, we should try not to worry too much.  According to him, Kyleigh’s is actually doing much better than most babies with the same heart condition.  He pointed out that babies with this condition’s heart and lungs are working as though they are running a marathon all day long.  Therefore Kyleigh is burning so many calories that it is difficult for her to gain weight.  However, we are happy to say that Kyleigh is gaining weight very nicely and the doctor was even impressed that she has the typical “chunky” arms and legs you would see on any other baby.  I did tell the cardiologist that if I knew anything about nutrition, how to gain weight was it!! LOL! 

Kyleigh gaining weight is absolutely a success to be celebrated.  It has not been easy at all.  Aside from Kyleigh, Bridgette is the true champion in this regard.  She works with the NICU nutrionist to come up with the appropriate mixture of breast milk and formula so that Kyleigh gets the exact number of calories per day that she needs to be able to gain weight.  If you were to come into our kitchen you would see that it truly is a science.  In fact, my best friend Anthony said that our kitchen looks like a mad scientist lab!!  Between the math problems scribbled all over pads of paper, to the different types of formula being used, all while trying not upset Kyleigh’s stomach. Bridgette is a hero in my eyes.  She just tells me which bottles of milk to use for the feedings so I don’t screw anything upJ.  Proof once again how lucky I am to have such a great wife and how fortunate our children are to have such an amazing mother!!

I could go on and on about all the details of our daily life right now but I know what you are really wanting to know is when will Kyleigh have surgery?!  We were finally able to schedule her surgery for May 20^th.  She will have the surgery at Advocate Christ Hope Children’s Hospital.  The surgeon will be Dr. Ilbawi.  We have many pre-op appointments leading up to that day and that’s probably a good thing because we are already a nervous wreck!!  Many of you have asked/offered to come to the hospital to be with us while we wait for the surgery to finish.  Thank you very much for your kindness and for being so thoughtful.  Bridgette and I ask that instead of coming to the hospital to be with us, you focus on sending positive thoughts and praying for Kyleigh that day.  For family, we may have a “satellite waiting room” set up at GG’s but we will keep you posted on that. 

That is it for now!  Overall, things are going as well as they can.  We have adapted to our new, but temporary, normal.  Kevin LOVES his baby sister and they really love spending time together.  Thank you all again for all of your love, support, and prayers.  Please keep them coming!  Here is a recent picture that I shared on facebook for those of you that may not have a FB page.

Love,

King James (cause King Jim just sounds weird), Queen Bridgette, Prince Kevin, and Princess Kyleigh

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!

Discouraging News; Pushing Forward

Fair warning, this is a long one!

Just when we thought things seemed to progressing in the right direction, Princess Kyleigh has other plans. On Wednesday, Dr. Torre (the neo-natologist) told us that while Kyleigh has made great progress while she has been here, he feels she isn't progressing as well or as quickly as he would like. We felt that more comprehensive testing is needed to determine what might be preventing Kyleigh from eating by mouth and why she isn't as feisty as she should be. Resurrection is not a children's hospital so they are not equipped with the various specialists she would need for the testing. Our options where to discharge her and try to schedule all of the various testing she needs as an out patient or transfer her to a level 3 Children's hospital.  Discharging her would not only be risky, because truthfully she is not ready to go home, but would also take weeks to schedule and even more time for results before we even begin to start talking about interventions and plan of care. It was obvious to us the best option would be to transfer Kyleigh.  The question was where? Cue the dramatic music as the fight with the insurance company begins!!

Since all of our doctors have always been through Resurrection, it just made sense that the medical group we chose included Resurrection.  Me being the responsible father that I am, enrolled Kyleigh on our insurance the day after she was born and made sure she had the same coverage as the rest of the family.  After all, we have great insurance and great coverage.  As we began to realize this need for a transfer we of course thought of Lurie's Children's Hospital (formerly Children's Memorial). Our medical group had other ideas. They prefer either University of Illinois Hospital or Loyola University Medical Center.  Both places are fantastic hospitals but not want we wanted for Kyleigh. So my question to the insurance company was "What do I need to do to get her to Children's"?  There were 2 ways to possibly make this happen.

The first was to have Kyleigh's pediatrician write a letter of medical necessity stating that Children's has something that Kyleigh needs that the preferred hospitals do not. First problem, Kyleigh's pediatrician has seen her MAYBE 2 times because she is under the care of the NICU team.  The second problem, we don't know what Kyleigh needs yet to be able to say Children's is better than the other 2 hospitals....that's why we want Children's!  Ok no problem, there is another option right!?

The second option is to change medical groups for Kyleigh and choose one that includes Lurie's Children's Hospital and the doctors.  We knew that because we have HMO they would probably say that we have to wait until the first of the month.  Great! April 1st in quickly approaching so we can do that.  Oh wait, no we can't because they don't allow you to change medical groups while the patient is "In-patient status"!  The insurance company told me, and I quote "We can't do it while she is an in-patient because it WOULD SCREW UP THE BILLING"!  Now I know insurance companies are all about making money but to actually say to me that their billing is more important than my daughters best interest?!? Needless to say she did not like what I had to say after that and she was very lucky I was at work near children otherwise it would have been even more unpleasant for her!

Bridgette and I did some research and talked at great lengths about our options. We came to the realization that while our first choice isn't an easy option, it is not as though we are having to choose between a hole in the wall hospital and Lurie's Children's Hospital.  We have 2 amazing hospitals to choose from both of which would provide Kyleigh with excellent care.  So our plan is to have her transferred to Loyola and when she is discharged we will change her medical group and get her into Children's for the cardiac follow up and care.

Unfortunately that was not the discouraging part of this post.  On Thursday Kyleigh had an MRI which was done to be sent to Loyola with her.  We received the results of the MRI and the 2nd genetic testing yesterday.  Kyleigh's MRI showed that the myelination (coating/insulation around the neurons in the brain) is abnormal.  The genetic testing showed that there are abnormalities on chromosome numbers 3 and 7.  I will attempt to explain what all of that means but first, a little warning.  I know most of you reading this either have medical knowledge, wish you had medical knowledge, or pretend you do ( you know who you are) so PLEASE DO NOT GOOGLE CHROMOSOME 3 AND 7!!!!!! What you find will scare you to death and make you think Kyleigh has have every scary diagnosis under the sun!  That is simply not true.

First I will try to explain the MRI because that is a little easier.  The myelin on every ones nerve cells (neurons) is like the rubber coating on a heavy duty extension cord and the signals our neurons "fire" are like the electrical current in that extension.  Kyleigh's myelin is not as good as it should be.  I know that sounds vague and that's because it is.  At this point that's all we know until we get to Loyola and the pediatric  neurologists do more comprehensive testing.  So once we again we have an answer that only lead to allot more questions.  What I can tell you is that when the myelin coating is frayed or missing the neurons can miss fire or not fire at all, just as a frayed extension cord can spark or short out.  This can cause anything from a simple eye twitch to full on seizures (neither of which have been seen in Kyleigh) and everything in between.  So as with everything else...we have to wait and see.

Second is the chromosomal abnormalities.  Kyleigh has an omission (a missing section) on chromosome number 3 and an omission and a duplication on chromosome number 7.  We are told this is rare and that so far the doctors don't know what it will mean for Kyleigh.  In fact, the technology used to complete this test is only 7 years old.  What we do know is that the company that does this testing keeps a data base of the abnormalities they find.  So they are searching the database to see if anyone has has ever been found to have the same abnormalities.  No one has indicated that these abnormalities are life threatening or that they will drastically decrease her life expectancy.  Most likely it means that there will be potential problems in Kyleigh's development.  We don't know to what extent or in what areas.  I don't mean to make it sound like it is not a big deal because this is potentially a major issue in that Kyleigh's development may be greatly impacted and our life may change dramatically.  It is potentially devastating news.  However, it could also be nothing more than we are already seeing.  Most likely it is somewhere in between.  We will just continue to pray for the best.

Over the last couple of days Kyleigh has seemed to regress a little bit in eating by mouth.  She has only eaten a few cc's by mouth and has shown little interest in the bottle at all.  She has been gagging allot when the bottle is placed in her mouth and chokes a little bit when she does take any milk in by mouth.  Our theory is that they have recently added a fortifier to the breast milk to help her gain weight and that this either upsets her stomach or makes it taste different.  Since no one plans on doing a taste test, we probably will never know LOL.  In an effort to hopefully help Kyleigh calm down and relax a little bit, last night the doctors stopped the by mouth feedings for the next couple of days.  In less than 24 hours of stopping the by mouth feedings, Kyleigh is like a new little girl.  She was very alert today and "feisty" which is what the docs wanted to see.  She was interacting with nurses and mommy and daddy when we were there.  She stayed awake for an entire hour with us.  The nurses and NICU doctors all agree that the clearly trying to eat by mouth is exhausting for her and because she is working harder (her heart has to beat more often) to maintain a functional level of oxygen in her blood she just runs out of energy and needs to sleep.  Unfortunately, the cardiologist says this is not true.  We say, majority rules!! :)

So I guess the real update is that Kyleigh is OK.  She is stable and doing well.  She may or may not have allot more going on than we once thought but we are transferring to a children's hospital to hopefully get answers.

Clearly we chose an appropriate name for this blog....The Adventures of Princess Kyleigh continue!!!


Oh by the way, many of you have politely suggested that we have Kyleigh blessed or maybe even baptised.  Our plan was to have this done before any surgery took place, however, with the decision to transfer Kyleigh being made and the impending plethora of testing that will be taking place, we are having Kyleigh baptized tomorrow at the hospital!

Thank you all again for your continued love and support and especially your prayers! Please keep them coming.