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.

How Are We Doing?

The most common question over the past 2 days has been, "How are you all doing?".  The short answer is easy...TIRED!  Though I guess if Kyleigh had come home with us right away we would still be tired :).  The real answer is that we are doing alright.  We seem to have established a routine and broke the day into day and evening shifts at the hospital.  We are attempting to create some regularity in our days so that Kevin can adjust as much as possible.  In all honesty, Kevin is probably having the most difficulty.  Many of you have offered to help take care of him and Bridgette and I are very grateful for all of the offers, but the problem isn't getting someone to watch Kevin, it's being able to be with him as much as he would like.  Splitting the day into 2 shifts has helped a great deal but that still leaves only brief times during each day that Kevin is with BOTH Mommy and Daddy together.  In addition, he has started asking when Kyleigh can come to "Kevin's House".  It is heart breaking to hear and he's just too young to understand.  Fortunately he understands what doctors and nurses do so we remind him that the doctors and nurses are helping Kyleigh grow and get strong enough to come home.  So far he accepts this reasoning.  I wonder if he knows what he's in for once she finally does come home :)

As for the Princess, there have been some positive developments!  She is up to 50 cc's each feeding now with no digestive complications.  She is taking a little bit by mouth each feeding and she had her best feeding today where she drank 25 cc's by mouth!  This is very good progress.  Yesterday, the doctors started her on Zantac because they think she has acid reflux.  They felt this may be contributing to her unwillingness to eat by mouth.  They also started her on Lasix (a water pill) to remove any excess fluid in her lungs (and anywhere else).  Their reasoning was that if she does have some fluid build up, it may be harder for her to maintain her breath support while eating by mouth.  Both of these medications seem to be helping.  At the very least, she is much less "puffy" :).  By the way, we have known since we first learned of the heart defects that she would be placed on some medication for her heart.  Lasix is one of them and my guess s there will be others until her heart is repaired.

The best news of all is that the doctors for the first time today started talking about GOING HOME!!  They didn't say when, but they are at least discussing it.  The neo-natologist will talk to the cardiologist tomorrow to discuss his theory that the poor "by mouth" feeding may be related to the heart issues.  I personally do not know how they can be related but if it means Kyleigh coming home sooner than later, I am certainly on board to learn why and how!!  If the cardiologist agrees then we will start talking about a plan for coming home!!

We can not thank you all enough for all the love, support, and prayers you have given our family.  It has truly been overwhelming and we are reminded each day how blessed we are to have you all in our lives.  I will update you again as soon as I know more.

Jim

P.S.

Here is a recent picture for those not on Facebook:

A few days worth of updates

I can tell by the increase in number of texts and phone calls that you are all craving an update on our little princess :).  Well it has been an eventful few days with lots of ups and downs but thankfully mostly good things!  So here is a run down of what has been happening:

Kyleigh wasn't feeding by mouth so was getting about 5-10 ml's of breast milk through the NG-Tube.  Her residuals were a little high, meaning she was having difficulty tolerating the feedings and wasn't digesting all that she was eating.  In addition she was not pooping.  The Neonatologist wanted to try continuous feedings in hopes that smaller amounts of food over a longer period of time, would allow her to digest better (and poop).  This only lasted for about 2 hours.  On Sunday night (early Monday morning) the doctors decided to stop the continuous feeding and put in an Umbilical Venous Catheter (UVC-basically an IV in the belly button) of H-VAL or TPN (liquid nutrition for all my non-medical friends).  This would ensure that she gets all the nutrition she needs while we keep trying to get her to digest and eat.  The UVC ended up being a great move because shortly after, Kyleigh was alert more often and since then she has been tolerating her feedings very well.  She has gone from only 5-10 ml's to 30 ml's today and has had NO residuals!! She has also had poop in almost every diaper (funny how we celebrate something like this).  While the increase in volume she is able to tolerate is a GREAT thing, what's even better is that she was able to eat by mouth today!!  Kyleigh took 15 of 30 ml's at one feeding, 20 of 30 ml's at another, and 8 of 30 ml's at her last feeding before we came home.  This is not consistent but it is definitely worth celebrating as eating by mouth will buy her ticket out of the NICU.

Another concern has of course been Kyleigh's heart defects.  To review, she has 4 defects.  2 openings in external "communications" and 1 hole between the atrium and 1 hole between the ventricles.  She had a repeat echo-cardiogram yesterday and had more good news.  1 of the external issues has resolved itself!!  The cardiologist expected this so it was not a surprise but very welcomed news.  The other 3 issues have remained the same and the doctor confirmed that Kyleigh will for sure need surgery to repair them.  The plan is to hold off as long as Kyleigh's heart and lungs will allow it.  These defects are not life threatening but it is likely that by 2 months old they will become problematic and the surgery will be necessary.  We will cross that bridge when we come to it.  For now, we will thank God for the improvement, however small, and continue to pray for progress.

I have saved the best for last.  The chromosomal test came back NORMAL!!!!  This is GREAT news and a huge relief.  While we are very happy about the news, we are not completely out of the woods yet.  The geneticist and NICU doctors are running 1 more test.  It is a DNA Genome Array.  Basically the first test looked to see if Kyleigh's chromosomes paired up correctly...which they did.  This test will look super microscopically at each chromosome to see what, if any, misalignment abnormalities there are.  We know this test will NOT come back perfectly normal because we already know there is a genetic defect of some sort that caused the heart problems and recessed chin and these will show up on this test.  What we HOPE and PRAY will happen is that we see these are all separate and random issues and not part of a picture (syndrome) of some sort.  The genetecist told us that there is always a chance they will find something but most of the time he does this test he finds nothing.  So we will continue to pray for that.

I think that is everything!  It has been the longest week of our lives!  Bridgette and I (and Kevin) can not thank all of you enough for your thoughts, prayers, emails, texts, phone calls, etc.  The love and support has been overwhelming.  We are truly blessed to have all of you in our lives and we can't wait to tell Kyleigh what an adventure she took us on!!

I have been told by some that while general prayers are always great, praying for something specific is better.  So for those of you that are praying, here is what Kyleigh needs to do to be able to come home.  She needs to increase and tolerate the volume of her feedings.  She also needs to continue to improve in her ability to eat by mouth.  Lastly, she needs to be able to eat enough (hopefully by mouth) to be completely off her IV fluids.

Thank you all again.

Love,
Jim, Bridgette, Kevin, and Little Kyleigh

Update So Soon

**taken from my email on Thursday 3/7/13 at 11:19pm**

Hi all,
I didn't expect to have an update so soon and unfortunately it is not a good one. Please forward on as needed. Kyleigh saw a pediatric cardiologist today because an earlier X-ray showed an enlarged heart and the nurses heard a heart murmur. She had an echocardiogram which showed that Kyleigh has a congenital heart defect. There are a crazy amount of medical details that I could tell but most of them are a blur to me at this point. The main point is that there are two relatively large holes in her heart. One between the two atriums and one between the two ventricles. This is causing the oxygenated blood that is supposed to circulate throughout her body to mix with the non-oxygenated blood that should be going to her lungs. The good news is that this is not life threatening or critical at this point. More information is needed about what genetic abnormality exists to determine a specific plan of action.  The bad news is that Kyleigh almost definitely will need heart surgery to repair the defects.  The big question is when.  It is possible that she may need this surgery in the next 6-8 weeks, but depending on how well she develops and what all the other tests show, she may be able to wait until she is a little older to have the surgery.  So needless to say, please keep the prayers coming. Kyleigh is comfortable, and actually progressing (slowly) with feeding. Mommy might be discharged tomorrow but Kyleigh will be in the hospital for at least another week. Thank you all for the supportive texts and emails. Bridgette and I are taking turns with having "our moments", and to say we are scared and confused would be an understatement. Knowing you all are praying for us and Kyleigh is very comforting.

By the way, big brother Kevin has met his little sister and he is VERY protective. He is doing fine and loving his sleepovers with Auntie Kim at Grandma and Papa's house.

Update on Kyleigh

**Taken from my email update on 3/7/13** She's here!! Kyleigh Christine Taylor born 3/6/13 at 2:26pm weighing 6 lbs 5 oz, 18 inches long. For the most part, Kyleigh is doing great. There were no major complications during labor and delivery. There was muconium (sp?)or baby poop in the amniotic fluid so a neo-natologist was involved. The cord was wrapped around her neck but it was not restricting in any way. After a few minutes of oxygen and poking etc. Kyleigh was awake and very alert.

 When it came time to breast feed, she would not latch on and we noticed her chin was very small and recessed. By 9:00pm Kyleigh still hadn't eaten but the nurses were able to get her to drink from a bottle by stimulating her mouth to suck/drink. Her blood sugars and body temperatures were all over the board and by 2:30 am her blood sugar was just too low and she needed to be placed in the Special Care Nursery (NICU).  The NICU doctors told us that a geneticist would be coming to look at Kyleigh to check for any chromosomal abnormalities or syndromes. I guess the recessed jaw is a trigger for concern. However, just like everything else in medicine...could also be nothing.

Due to not swallowing and sucking correctly, Kyleigh swallowed a lot of air so a tube was placed down her nose into her stomach (NG tube)to release the air and could also be used to feed her. This was a big success as it relieved a great deal of discomfort and she was able to rest peacefully. Earlier today, Kyleigh was not digesting the food placed in her stomach which was a big concern. Fortunately though, that has progressed and she is now digesting more than 90% of what goes in. She still won't take a bottle or the breast.

 The geneticist spoke with us and said overall Kyleigh looks great. The reason chromosomal abnormalities is even a question is because Kyleigh has 3 or more abnormalities. 1) the small recessed jaw 2)shorter upper arms than lower arms ( we don't see this at all) 3) Hypotonia ( she's pretty floppy but this has already improved) and 4) hydronephrosis (which was added to the list only because we mentioned it.) So they will do the chromosomal tests to hopefully rule out any syndromes or chromosomal abnormalities. We should have those test results in a few days. The focus for now is to get Kyleigh to eat!! She will start Physical Therapy and Speech therapy to help with the low tone and swallowing issues. We can order OT but the nurses don't think it is necessary yet....I agree. So we don't have answers and continue to have more questions but we are told she is doing well and pray that it continues. Any prayers and positive thoughts you can offer are greatly appreciated! By the way, Bridgette is doing very well. Will hopefully be discharged tomorrow or the day after but Kyleigh will stay in the hospital.