Baby Steps

As many of you already know, we have been in physical therapy for almost 11 months now and when we started therapy, Bella could not do anything!

She could not push up on her tummy, roll over, play with her toes, nothing. She laid on the floor or in her bouncy chair, stiff as a board. Literally. She was so straight and could barely bend her legs or trunk!

We have worked so incredibly hard to get her sitting (12 months of age), standing against furniture, (14 months of age) standing unassisted for 5 to 10 seconds, (last week, 15 months of age) and as of today, just shy of 16 months, Bella took her FIRST steps!!

Our baby girl who has so many odds against her - spastic diplegia, vestibular problems, behavioral problems and delayed development- showed us her strength, her determination and courage. She showed us proof that she can walk and WILL walk, and better yet, she is not even 16 months old! She has so much going for her and I can not wait to see what she will accomplish in the months/ years to come.

Enjoy her first few steps! (Hopefully we will see much more of this in the near future) :-)

[Disregard the mess!]

Catching Up

Whew! This has been one sick house!  Kallie has been sick for almost 2 weeks now, and we found out that it is Pneumonia (after 2 doctors appointments and a chest x-ray). We think it is more along the lines of walking pneumonia so that is promising, but it is also contagious!

Over the weekend, Bella seemed to be getting a cold and started coughing. She seemed okay on Monday, but on Tuesday her chest and back rattled with every breath! Needless to say, we were on our way to the doctor. It always makes me nervous when Bella gets a cold or any kind of respiratory infection. We just never know what to expect for her since her anatomy is so different. Since Bella already has one compromised airway, her nose, it makes me want to watch her breathing AT ALL TIMES.

No chest x-ray was ordered on Bella, as it would not do us any good. She is being treated the exact same way as Kallie is with a 5 day treatment to hopefully kick the pneumonia and prevent it from manifesting into a bacterial form of Pneumonia. Bella is also on breathing treatments every 4 hours for her wheezing. Both girls have been coughing so much that they make them selves throw up! It is a lovely, lovely house right now :) I can't wait to Lysol every inch of this place when they are both feeling better!

Bella has missed all of her therapy so far this week, but we are hopeful that she will be feeling well enough for her Friday and Saturdays sessions.

On a brighter note, Bella is showing some progress in therapy! With the perfect combination of balance, confidence, muscle tone and distraction, Bella can STAND!! We have been working so, so, so hard for this moment for months. She has been able to do it a few times now and even though it's only for 2-3 seconds, it's progress, BIG progress :)

Her body seems much more "ready" for standing now than it did the past few months. The next steps will be to strengthen her calf muscles and ankles, reduce the tone in her legs/trunk, work on standing on flat feet, encourage trying new things and instill more confidence so that she can stand for a longer period of time and hopefully begin to walk.

PEEK-A-BOO

I SEE YOU :-)

Hope everyone is having a GREAT week!

More Hurdles For Our Sweet Girl: Part Two

{Read Part One}

 

 

Although we do not think that Bella has currently lost any hearing, we are not positive. There are so many levels of hearing loss that it is hard to tell on a 1 year old. Like I mentioned before, unfortunately, we were not able to preform the standard hearing test at Dr. Yuksel's office that day during our appointment because we could not get Bella to calm down enough.

 

The Audiologist said that we need to do an ABR test (Auditory Brain stem Response) which we have decided to preform the next time that Bella is under anesthesia. We are pretty certain this will be when we do her Temporal CT scan sometime at the beginning of 2013. This test will give us a baseline of where Bella's hearing is now. We will also be able to know when she is starting to have hearing loss, if it has not started yet, and we will be able to tell what type of hearing loss and to what degree it is. We will have several of these tests over the next several years which will let us monitor her hearing in depth.

 

Along with significant hearing loss, Bella's characteristics of Mondini Deformity is commonly associated with Pendred Syndrome. Pendred Syndrome is progressive bilateral sensorinueral hearing loss (usually beginning before age 3) and goiter which can also be associated with hypothyroidism. Children with Pendred Syndrome usually have balance problems as well. Dr. Yuksel has referred us to a Pediatric Endocrinologist to further test for the Pendred Syndrome. I am actually glad that he has referred us to one of his colleagues with UT physicians because Bella will need an Endocrinologist in the near future for her SMMCI syndrome as well. We love that all of her specialists are with UT and they all work together and know each other fairly well!

 

We know that Bella has balance problems. We have been working on that quite fiercely in PT and OT. When we discussed this with Dr. Yuksel he said that this is most definitely due to the way her ears are formed. We also asked if there is anything that we can do about this. Sadly, there is nothing that can be done. He said that, based on the anatomy of her ears, he suspects her to be fairly dizzy, sometimes more than others and also have some significant balance issues. He also said that the brain is very smart. In most children, the brain finds ways to compensate for the vestibular loss and use other organs of the body to overcome these problems.

There are no medications or anything that can be done to make the vestibular problems better, we just have to let the brain do what it does best and continue with intense physical/occupational therapy to help train the brain. Mike and I are very optimistic in the fact that the stronger Bella's legs and trunk get, the more balance she will have and that her body will be strong enough to compensate for this dysfunction.

In addition to the Mondini Deformity, we had to discuss Bella's Pyriform Aperture Stenosis too. We have been aware, since Bella's surgery in December 2011 that Dr. Yuksel was not able to drill enough space in her nose to make her breathe easily through it. She is still a "mouth breather" and it seems to actually have gotten worse over time. She CAN breathe through her nose when she is totally calm and relaxed, but even then I would say she still only uses her nose a fraction of the time.

It is so noticeable that Kallie has decided Bella is a puppy! When Bella is active, Kallie always looks at me and says, "Look mommy, Bella is a puppy!" She literally sounds just like a puppy does when it is panting.

Dr. Yuksel said that we are going to have to repeat the surgery soon, as it is not healthy or proper for her to be breathing like that from her mouth. While in his office, he witnessed her mouth and noisy breathing. He agreed that it is not getting any better and, actually, may be getting worse.

We are not going to do the surgery immediately, but will evaluate it again in December. Bella has learned to adapt to, basically, not having a nose and has actually become a good mouth breather, but it is greatly affecting her feeding and drinking.

 If we do the surgery now, there will be a very high chance of having to do a 3rd or possibly even a 4th. Bella's face is so small that he will only be able to take out a few more millimeters which will not be enough for a significant change. We are tying to avoid more nasal surgeries (after this one) to prevent scars and scar tissue build up, which could actually cause more airway obstruction.

If we can wait for another 6 -9 months for her surgery then her face will have hopefully grown enough for the surgery to make a significant change in her breathing . If we end up having to do a 3rd or 4th surgery, in the same area of her nasal passages, we WILL have scars and scar tissue that will change her appearance. We are trying as hard as possible to steer away from having any appearance changes due to these surgeries. Of course, if her breathing continues to get worse over the next few months, we will have to do the surgery sooner than we are hoping for.

When we do Bella's CT scan for her ears, we will also do one for her nose and see how much bone he would be able to drill (at that time) and how much it would widen her nasal passages. This will also help us figure out how much longer we need to wait to repeat the surgery.

This past week, Mike and I have both done a lot of research on the type of deformities Bella has in her ears. We were terrified of the fact that she will loose significant hearing, but we have, surprisingly, become calm and accepting of what her future may be like. We watched so many videos of children getting their Cochlear implants "activated" and it was one of the most touching and happy moments to see their faces light up with so much joy. It is amazing what technology can do to help people in so many ways! We feel ready for whatever God may present us with in Bella's future :)
 



More Hurdles For Our Sweet Girl: Part One

Exactly one week ago today, we got MANY of our questions answered from Bella's ENT team. We thought we were prepared for that appointment, but came to realize we were no where near as ready as we thought we were. We were devastated leaving the his office that day and it has taken me a week to feel emotionally stable enough to write about our visit that day.

We are feeling MUCH better about things and have really looked to God this past week for guidance. He has definitely told us that we are going to be able to handle what comes our way and no matter what, Bella is our Bella forever! We were born to be her parents and we feel so special to call her our daughter.

Going into her appointment last week we had a lot of concerns. The Mondini Deformity (and what it means in Bella's case), her yellow tongue, the continued/worsened mouth breathing and her balance problems.

The appointment was at 1 pm and oddly enough they called us back pretty quickly. Usually when were are at the medical center, it is about a 45 minute wait until we even get to move back to Dr. Yuksel's waiting area. He is with the UT Physicians Otorhinolaryngology department and they have several doctors on that floor. They have one big waiting room in the front then each doctor has their own mini waiting area by their rooms.

When we saw Dr. Yuksel's nurse she said that he was already looking at her previous CT scan and would be in with his team in a few minutes. When he walked in he commented on how big and beautiful Bella had gotten and then apologized over and over again that he did not catch the noted Mondini Deformity on her CT the last time we were at his office.

The day of Bella's CT (in march) we were down stairs in the hospital for the scan and then went right up to his office. He just pulled up the scan and we looked only at the nasal / sinus region to see how much more breathing room she has since the surgery. When you do a CT scan of the sinuses, you also see parts of the ears. The radiologist must look at all aspects and "note" anything that they see. The radiologist saw all of her nasal deformities, but also noted this Mondini Deformity. Mike, I and Dr. Yuksel, did not read the "results" from the radiologist that day and thus missed this all together... Fortunately, we still LOVE Dr. Yuksel and think he is an AWESOME doctor!

After his apologies, Dr. Yuksel sat down and pulled up Bella's CT scan on one screen and Google on the other. He started showing us all of the different deformities of Bella's inner ear, which is bilateral (in both ears). She has a deformed Cochlea, enlarged vestibular aqueduct, enlarged sac, deformities of her semicircular canals and a few other dilated areas. He might as well have just said that every part of her inner ear is deformed in some way!

After a long time of explaining and showing us a normal CT of the ears, and Bella's ears, I finally said, "Okay, I get it. She has a lot of things wrong with her ears. What does this mean for her? What can you tell me is going to happen or not happen to her?" His exact words were "You need to be prepared for severe to profound hearing loss even deafness, that will progress in her early childhood." GULP. For the next several minutes, while I was spitting out questions. I was trying to not fall to the floor crying. I had this MASSIVE lump in my throat and I finally thought to myself, listen! You need to listen to what he is saying and make sure you ask all of your questions!

 He explained to us that typically Mondini Deformity is found when a child comes in with complaints of hearing loss, then they usually do a hearing test and ct scans... Blah blah blah. Well in Bella's case, we found the Mondini Deformity prior to noticing any hearing loss. So now I feel like it is just a waiting game. How are you supposed to go through life not knowing when or how much of your child's hearing will be compromised.

He also explained to us that the hearing loss can happen in stages, or gradually. It can happen from the most simple things, like a bump on her head. We were told to keep her from hitting her self in the head (while playing), keep her from falling and hitting her head and also were told that she will not be able to play any type of contact sports or strenuous activities that involve her head when older, such as soccer, cheer leading, football, band and many others.

I have realized this past week that keeping Bella from accidentally hitting her head, is more stressful that I would have ever thought. I also realized that Bella is a 1 year old, and she needs to be a 1 year old. We have decided instead of stressing over it, put it in God's hands. If Bella looses significant hearing after bumping her head on the coffee table, then that is what God had planned for her. We already know that EVENTUALLY the loss is going to happen, whether she hits her head or not... It is just a matter or when.

I asked Dr. Yuksel, "Have you ever, in your entire career, seen a child with Mondini Deformity that did NOT have hearing loss?" His answer was, "No." In fact, it was not only no, but he almost immediately started talking to us about Cochlear implants for her future.. Not saying she needed one right away or anything, just preparing us for the future. He said, we need to do a few things today. We need to do a hearing test and tympanomety (test that checks for fluid on her ears). Bella is constantly having double ear infections and we have talked about tubes a few times now.

We were not able to preform the hearing test on Bella because she was way too upset. We were able to check for fluid though because crying does not interfere with that test. She did come back with fluid on her left ear so we are going to re-check in December.

Dr. Yuksel made it very clear that he is trying to steer away from putting tubes into Bella's ears as much as possible. When you insert tubes, it makes a very small hole in their ear. He said that when you put a Cochlear implant in, it seals MUCH better if the child has not had tubes.

This is when it made it much more clear to me about the severity of hearing loss associated with Mondini. Her doctor was sitting here telling us that he is trying hard not to do something right now so that it will be easier for him to help her hear better in the future. He seemed pretty determined to not do tubes unless it is 100% necessary because of something that we are not even sure that she will need. It seemed to me like he was pretty sure that implants are somewhere in her future.

The plan of action, for the moment, pertaining to the Mondini Deformity, is to have a Temporal CT scan done, meet with a pediatric endocrynologist, and continue speech, PT and OT. If we can get her talking prior to any hearing loss, then we are going to have a strong start :)

Pure joy!

This was a 3 hour appointment with Dr. Yuksel and there was so much more that happened during this visit, I am going to have to make a part two. Don't worry, I will have it posted soon :)

One Smart Cookie

Bella had physical therapy this morning and was actually in a decent mood. Lately, she has been hating therapy! She tends to get really mad when anyone touches her or "makes" her do things.

We have been focusing almost all of our attention on standing (unassisted). She stands GREAT and has lots on stamina, when she is against something. She will stand by the couch or coffee table for really long periods of time and play with toys, but she will not [for the life of her] remove both hands. It is has become almost a joke. She has found a way to do everything and anything she needs to with one hand. Bella's progress has been at a stand still for a few months now so her therapist have been really thinking outside the box to try and get her to the next phase.

Working on sensory processing!

The frustrating part is that if she can stand for that long that against the coffee table, we know that she will be able to stand alone, she just refuses. She has this fear that we can not seem to get her to overcome.

We walked into therapy this morning and Mustafa, her PT, was telling me that him and Farida, Bella's OT, have been brainstorming ways to get both of Bella's hands free at the same time, when she is in a standing position. We literally tried EVERYTHING today with no success. The girl is smart, and on to all of our tactics.

Besides the fact that we could not get her to stand alone, she had a pretty good session. We did a lot of standing, a little bit of walking with the chair, some sit to stand exercises and we worked on some sensory stuff too!

Big girl! - trying to walk with the stool :)

We were also supposed to have developmental therapy today at home with Claudia, but she never showed up! I really liked Claudia the first time she was here, and Bella did very well with her but we have had to reschedule every session since then. We have been told pretty much every excuse in the book from her (always within the hour that she is supposed to show up) and now today she didn't call or answer when I called her 30 minutes after she was supposed to be here.

Needless to say, I called ECI and explained to them that with Bella's current therapy schedule, me working part time and Bella's doctor appointments, we don't have time to try and reschedule all of these sessions every time. They totally agreed that this was unacceptable and we are going to be re-assigned a new developmental therapist :-)

Hopefully we will have more luck this go around!

Worn Out!

Why Is My Child's Tongue Yellow?

It sounds gross and looks pretty gross too- but it is not as scary as it might seem!

For several months we have noticed that Bella's tongue was always a yellow/ orange color. We used to think it was what she was eating, but realized that it was never going away and actually seemed to be getting worse.

We thought about thrush, but she didn't have bad breath and she had no other signs of having an infection. She was totally healthy in that aspect. Don't get me wrong, I thought to myself several times "does my daughter have some flesh eating infection attacking her tongue?" It totally freaked me out some days. I mean, how many yellow tongues have you seen?

Luckily, we found out that mouth breathing is the culprit of Bella's yellow tongue! We knew that Bella was still breathing from her mouth most of the time, even though she has had surgery to correct the stenosis, but did not realize the extent of her mouth breathing. This confirms that the surgery was not as successful as we had hoped for...

You might ask, how does a person's tongue turn yellow from mouth breathing? Well, when a person uses their mouth to breath, it causes inflammation of the papillae. When the papillae is inflamed it appears a yellow/orange color and easily catches bacteria which can aid in the color change.

We know that mouth breathing is not ideal and can cause health problems over time. We are going to talk to Bella's ENT about this more in depth and try and figure out when it is the right time to do the second surgery to try and better correct her Pyriform Aperture Stenosis. We are aware that there is a possibility of more surgeries for her sinuses, adenoids and tonsils in the future, but we don't know if it is ideal to wait till then to repeat the corrective nasal passage surgery.

Bella snores a lot at night, she always has, and it has been considered 'acceptable' for her condition in the past, but now her doctors are concerned about what will happen once the adenoids start to grow into the already narrowed nasal passages. We have been asked to watch her sleep more closely and hope that we do not see increased distress over the next several months! I am still hoping that we do not have to do another sleep study for a while and that her adenoids don't cause much concern in the near future, but I know that we are very limited on space in there...

For now, we will enjoy Bella's yellow tongue, and cherish it as one of her special characteristics ;)

Message Of Hope

This is such an awesome message for all of you other moms and dads struggling with the emotional and physical toll of having a child with special needs :)

This video is about how families, of children with disabilities, responded when they were asked about what they would have told themselves the day that their child was diagnosed...

You are not alone, there is HOPE!

 

This & That

This past week was supposed to be full of therapy, but ended being a quiet week as two of our therapist called in sick, and I came down with walking pneumonia (of all things) later in the week. I finally have some energy today, enough to sit on the couch and write a blog, at least ;)

We did make our physical therapy appointment in Cypress on Monday, which actually made me a little bit depressed. Both of our at home therapist for developmental and speech called in sick on Monday.

Physical therapy is hard sometimes. You see progress, then you don't. She does some things SO WELL, then others I feel like we are so far from (walking). She stands against furniture so good, but when we are in the middle of the room, she cripples. Her feet will barely even go on the floor. No balance, no weight, no trying...just fear. We talked about what happens when a child has balance issues and won't walk unassisted. We talked about using a walker (medical) around age two and praying that she will gain some balance in the near future. We are hoping that she will begin to show some signs of standing and walking independently soon, we just wont know until she does it.

The speech therapist ended up coming on Tuesday, which was just an evaluation for Bella. We have had a referral for speech for a few months and are finally getting to have an evaluation. The therapist was super nice and very interested in all of Bella's issues. Bella will be 14 months old this week and has been evaluated at an age level of 7-11 months. We knew that she was pretty far behind, she is actually at this same age level for physical therapy too. They have suggested that we start therapy at 2x per week for right now and increase more if we need too.

The therapist did note that Bella has some high tone in her face, which is what she also has in her trunk/ legs. She said that she has not seen high tone before but also does not think that it is going to affect her rotary chewing too much. She does have rotary movements, but not a lot. We will have to work on this as this is why she is not able to eat many table foods.

We are going to start with something called "food chaining" as well as some muscles exercises to try and stimulate more rotary chewing (where you chew from side to side in your mouth). We are also supposed to put the food into Bella's mouth on one side using our finger to stimulate the rotary movements.

Food chaining was explained to us with an example of a french fry, which is definitely not the healthiest of foods, but an easy example to follow.

When you begin food chaining, you pick one food to use as your "food chaining" food. Each day of the week you use your same food (french fry) and start the week by using a very soft fry. Let her eat it like that then the next day, make it a little bit more firm. By the ended of the week, she should be eating the french fry in a very crunchy form. This way, she is used to the food but gets it in a different texture every day, slowly getting her up to a very textured food.

We are hoping that this is going to help her tolerate other foods. Right now she can only tolerate soft breads, cheese, yogurt, and goldfish (at times). Hopefully in the next few weeks we will be able to say that we have successful introduced another food, or two!

We will also start to do transitional foods in the next few weeks. This is when you introduce a unfamiliar food, with a familiar food. She can only have the familiar food once she tries the unfamiliar, and so forth.

We all bribe our children with "once you eat the rest of this, you can have this", but when it has to do with an actual physical issue rather than just a personal dislike, it becomes more of a problem!

Along with all of the new feeding therapy, we will work on the speech (which will come more when she starts walking) and also start learning some sign language. Sign language is going to be great for Bella to start learning early on so that we will all be prepared if she does loose some of her hearing. It is also a good way for her to express herself until she is walking and talking more :)

Stomping Grounds Fun & Ear Trouble?

Today was fun! We had a great play date at Stomping Grounds with some friends, followed by a relaxing afternoon - something that was much needed!

 

We have been really busy this week with Bella's stuff and have had a lot weighing on our minds. we got some pretty disappointing news about Bella's ears. We don't know much yet, we are actually waiting to hear back from her ENT who wont be back until next Tuesday.

 

We found out that Bella has something called Mondini Deformity, this is a inner ear malformation that could be very devastating to us. Bella's type of deformity is characterized by an enlargement of her vestibular aqueduct, bilaterally (both sides). We don't truly know what this means for Bella, in our case, but we do know that this is associated with balance issues (vestibular system) and the majority of children will develop some degree of hearing loss in their childhood years. Bella's physical and occupational therapist have become very interested in this, as Bella has been struggling tremendously with balance issues for a long time now. They have had a lot of trouble trying to perfect her sitting and standing balance and are noticing that one day she has balance then the next she has none. They think this has a lot to do with her Vestibular system.

Her therapist have explained to us that you have to have three components to walk. Your eyes, ears and legs/ feet muscles. We do know that a child's body can overcome vestibular dysfunction, but they have to have at least TWO of the three components. If you are blind, then you need your vestibular system (ears) and legs to function. We already know that Bella has some muscles issues that are predominantly worse in her legs than arms and now we might be dealing with vestibular dysfunction? This is going to be a big hurdle to jump...

We need to either get Bella's balance stabilized soon, or get her muscles stronger in her legs so that she can overcome the balance issues. It really sucks that we are dealing with 2 main hurdles rather than just one now! - when it comes to walking at least..

On the other end of the balance problems is the potential hearing loss, this is something that we have not even remotely been prepared for. We have always said that Bella is going to go through a lot in her life and we are at least blessed to be able to help and talk with her about it. Before having children, one of my biggest fears was to have a child who was deaf. I could not imagine my child not hearing my voice. It was something that literally terrified me.

Is this God's way of proving to me that we will be alright regardless? If so, he can stop testing us now. I think we have been tested enough this past year and I am not sure how much more I can take. God, please spare Bella her hearing, or at least the majority of her hearing.

Once we find out more detail about this and how it may affect Bella's future, I will be sure to share it with you all. It is just something that I needed to get off my chest for now. I have been trying to keep it in the past few weeks until we know more, but that was not working too well.

Therapy Ups & Downs: It's Not About What We CAN'T Do, It's About What We CAN Do!

This morning at PT the dreaded conversation of increasing therapy came up. I have had a feeling that this chat was coming soon.

Ever since we moved from Cypress back to Sugar Land, we cut Bella's PT/ OT down to 2 times per week. She was doing good at the time, progressing, and we really wanted to stay with her current therapist until she was walking. Decreasing therapy was the viable solution that has kept me driving to Cypress every Monday and Wednesday morning at 7 am. (Her therapist were actually the ones who recommended it so that I did not get burned out).

Bella's wonderful therapist have been with her since she was 5 months old and she has really taken to them. Actually, I would say she has a love hate relationship with them. They really are awesome!

For the past several months we have been working VERY hard towards bearing weight on her feet/ legs, sitting balance, standing unassisted, and eventually taking a few steps on her own... Fortunately, Bella has been able to practice some of these tasks, but we are still very far from where we wanted and expected her to be right now.

We know that these "plateau" time periods can happen and do happen, but it is still tough to hear it. We hope that Bella works through this quickly, gets back to improving soon, and shows us that she actually wants to move forward and push herself.

For right now, the best thing we can do it be creative, find new ways to encourage her to move the way we want, pray that God brings her body strength, and be thankful for what she CAN do at the moment.

By the way, I am excited to say that Bella's 2nd tooth popped through today!! Yippee! The next tooth to show is her "special" tooth, I am actually super duper excited to see my beautiful baby with her snaggle tooth ;) . Who can say that they only had one 'big' top tooth? Not many..

 

Madison Steiner: Peach's Neet Feet

"Changing the world is really not as tough as it seems.

Just takes a little effort and a whole lot of happy.
The world will not change with a wish or a wand.

No abra-kadabra or shooting star.
Some may think it takes a miracle or magic but ...

I have something to say that might clear the static.
I have dreamed a dream of something improbable because to me,

 in life, there is nothing but possible.
The answer really is no secret to keep;

you just need to be kind to each soul that you meet.
A task that takes just courage,

you see a gut full of gumption and brain that believes.
It is a heart full of hope and a hand that can help.

To deliver such kindness that may have never been felt.
So do what you can, no matter how small.

\Stand up for what is good and stand 100 feet tall.
Paint a picture, hold a door, give a nickel or give more.
Give a stranger a cup of joe or donate your old winter coat.
Do these acts at random and I bet you’ll find,

that you are making a difference each and every time.
So tell me friend, have I convinced you why,

that making a difference is as easy as pie
Maybe I should remind you this life isn’t all about “me”

There is more to this life, a reason for existing.
So be fearless, be fierce and maybe a little insane.

 Now do something rad and watch the world change."

-Peach

Who wrote this wonderful poem you might ask? Well, that would be Peach (Madison Steiner). If I had to opportunity to meet anyone in the world right now, it would be Madison. She is truly the epitome of an awesome loving person. She is not some celebrity that most people drool over, she is a young soul from Colorado.

Madison Peach Steiner founded Peach's Neet Feet (PNF), which is a non-profit organization that donates hand painted shoes to children, or fighters, as PNF refers to them, battling cancer and other serious lifelong illnesses. Madison hand paints all of her shoes, along with a few guests artists, and has "shoe fairies" present the personalized pair shoes to each child.

Madison was also awarded the 2012 Good Samaritan Real Heroes Award for NW New Mexico for her unselfish character! What a great accomplishment.

PNF is trying to supply "fighters" with a little "heArt in their Sole". - What a wonderful way to help these children get through their daily struggles!

Go support this amazing organization by sponsoring a child's pair of shoes! You can contact Madison at madisonsteiner@gmail.com or visit PNF to find out how else you can help spread the love :-)

Special Needs Or Not, Bella Is Just Bella

I get a lot of questions about how Bella's life is. What does she do everyday, what is it like to have a child with so many different needs?

Yes, Bella does have different needs than a normal 13 month old child, but Bella is still a typical baby. She does all of the same things that any other baby would do. Sometimes she just needs more assistance.

She loves to play with her big sister, Kallie. She laughs, she cries, she hates strangers, she is sweet, she gets mad, she gets into things, she takes baths and she even eats. Can you believe that?

Two peas in a pod

Yes, we go to several long and exhausting doctors appointments a month and to therapy 3 times a week but that does not mean she is not like other kids.

Every morning Bella wakes up and eats breakfast. We are still working really hard on trying to eat 'table foods' so I always start her out with that. Usually mini pancakes that I tear up really small. After we try a few bites of those I can tell if it is going to be a successful table food day or not. Lately it has not been, so we revert back to baby food for the rest of that meal and try again at lunch.

We know that Bella has swallowing difficulties, but we are not sure why she is having so much trouble transitioning from baby foods to table foods. She chokes and gags on almost anything besides cheese. She will choke so much that she actually makes herself throw up. Its lovely and yes, everyone stares at her when we are out to eat.

Bella also has not transitioned to a sippy cup. We still try everyday, but I only do it for so long because I don't want her to end up rejecting it or associating fear with it. She chokes on anything that comes out of a sippy cup. We have tried every sippy cup known to man, and she still has issues with it. She is still only comfortable with a bottle and a stage 1 nipple. A stage 1 nipple is usually used until 3 months of age, Bella is over 13 months old.

Bella has had two swallow tests, one before her surgery in December and one after. Both did not have great outcomes, but were not terrible. She did penetrate the lungs (not aspirate) and has some odd pooling in the back of her throat before she actually swallows.

After Bella's second swallow test, her pulmonologist suggested using a thickener. She has been on Simply Thick for a while now. We are supposed to use it in ALL liquids- milk, water, juice, anything that goes in her mouth. It makes it very thick, it's actually called nectar consistency, but she still can not use the sippy cup even with the thickener. We have resorted to using the bottle for her milk and no thickener since she does good with the level 1 nipple. In the sippy cups we add the thickener and let her try a little bit everyday.

Although Bella has some muscle spasticity and high tone, she still plays and crawls like other babies. We just have certain ways that we encourage her to do things. We place toys in strategic places and encourage normal movements, pushing her body to learn to do the movements correctly.

Play Time!

Bella is a very smart girl and she has found alternative ways to go about doing things. If she does not like to stand and scoot along furniture because it is more difficult for her, then she will get down, crawl, and come back up where she wants to be. That would be fine if she could actually perform the task and was just doing it differently as a personal preference, but she is doing that because it is a strain to her. If she does not learn the right way now, it will become more and more difficult the older she gets.

She might have a few things that hold her back but we still go play with friends, go to the park, and she loves to be in the pool!

Kallie loves to be in charge of little sis!

Having a baby with special needs might make our daily life different than an average families, but it does not mean that Bella can't interact normally like other children. She is still a child that loves the same things any other child would. She has no idea that she is different from the kid next to her, and I hope that she never feels that way in her future...

Bella's Birth Story Part Three: The Medical Center

It was a Friday afternoon when we were visiting Bella and talking with the neonatologist when we found out that Bella was going to need to be transferred to the Medical Center. Kallie was with us that day so we had about 45 minutes to make arrangements for her, or else we were going to have to let Bella go on her own and us meet them at the other hospital, and that was NOT happening.



Sweet Sleeping Angel

I put Mike in charge of figuring out where Kallie was going, and getting her there, while I stayed with Bella to get all of the ridiculous amounts of paper work filled out. It was overwhelming being in Bella's room with the current NICU team, the transport team and many nurses all telling you a ton of information. I also had no idea what to expect at the new NICU. One of the nurses told me that she will be with an awesome medical team once we get there, but to be prepared as it is a culture shock compared to Memorial Hermann Memorial City.

Waiting for the transport team to get everything ready

I was also panicking because I knew that the medical center was about an hour away from our house and that was 30 minutes farther than where we already were. I knew that I was not going to be able to be right by her side ALL THE TIME because we had Kallie who was 21 months at the time and Mike had to work too.

Kallie brought her favorite "George" to watch over baby sister

Mike was able to follow in the car and I rode with Bella in the ambulance. I had never been in an ambulance before that day and I hope to never be in one again. Bella was hooked up to all of her equipment and safely strapped inside the incubator, but it just didn't feel right. Once we got to the medical center we were directed upstairs to the 7th floor level III NICU. We were really hoping to be able to go to level II NICU instead so that we could have our own room and be able to have more visitors and so forth. Unfortunately, Bella needed a little bit more attention than level II was able to offer so level III it was. We were not allowed to go back with Bella while they admitted her, we had to wait in the waiting room where we were instructed on the long visiting rules/regulations, informed on the process to visit your child, and given a tour of the Ronald McDonald House (I will explain that in a different post). After about 1 1/2 hours we were finally able to go see Bella again. We were escorted back the long hallway by Bella's transport nurse who was GREAT. She was so sweet to us and understanding. She made jokes to lighten the day and prayed with us before she left. She told us about her son who had growth deficiencies and was on growth hormones and explained to us that we are not alone, we had all the other families that were there, as well as God.

We already had some culture shock just being in the waiting room, but when we walked into where Bella was going to be until she was able to come home, we were more than shocked. There were 8 other babies in her room. There were tons of nurses watching over the babies and visitors for other babies. There was no designated area to sit, they would pull you up a chair if you were going to try and nurse and give you a curtain to try and block off the area. The nurses were different, they did not seem as compassionate. That could have been just me too, as I was already upset at having to bring Bella here.

Bella's note to all the Nurses and Doctors.
"Please Do NOT suction my nares" Thanks, Bella

It was a Friday evening and we REALLY wanted the ENT team to make it to see Bella that day so we did not have to wait through the weekend. (We were under the impression that we would only be there a few days) I remember waiting for several hours with nurses telling us that they were not sure if or when the ENT's were coming and that we could leave and they would call us if they came. Mike and I finally decided to wander down to the cafeteria to see if we could get something to put in our stomachs after this long day. When were walking downstairs we walked right past a group of doctors that were walking briskly with a brief case in their hands. I heard one guy with an accent say that the patient had severe nasal blockage and it was not thought to be Choanal Atresia. At that point I KNEW that was our team of ENT's. We turned right around and followed them upstairs.

The volunteers made Bella a hat :-)

When we got back to Bella's pod, we were instructed to please wait outside in the waiting area as parents/visitors are not allowed to be in the room when any procedures are going on and that they would come get us when it was all over with. (Yes, this is for every child, no parents or visitors are allowed. You are constantly being asked to leave the room for other children's procedures, or when a specialist is coming in to examine a child). We were not able to talk with Bella's ENT's that evening but they left us some information. They were able to scope one side of Bella's nasal passages but were not able to make it down the other and there was severe nasal narrowing. They scheduled an emergency CT scan and would discuss the results with us the next day. That evening we went home and they had not done her CT scan yet. She ended up having the scan early the next morning, and by that afternoon Dr. Yuksel had called us with Bella's diagnosis of Pyriform Aperture Stenosis (CNPAS).

Bella's lips were always chapped because
 she having to use her mouth to breathe.

I don't remember what I was thinking at that moment, but I do remember replying with, "What?" It was different to actually hear a diagnosis rather than a whole bunch of speculations from other nurses and doctors. I remember Dr. Yuksel spelling it for us and saying that we could look it up online, but to be careful about what we read since it can be associated with other issues and that her CT Scan looked pretty good otherwise. (Her adjusted age was still only 37 weeks, so she was not even full term yet.) The first thing we starting doing was research of course. I remember reading about all these horrible things that are associated with CNPAS, such as, brain anomalies, a central incisor (which totally freaked me out), and other serious syndromes and mid line anomalies.

The plan was to watch Bella over the next few days and determine if she needed surgery while she was still in the hospital. Her doctors really wanted to wait on surgery if at all possible, as it would put a BIG strain on her body and could be difficult for her to recover. Bella needed to do several things before she would be allowed to go home regardless of surgery or not. She needed to gain weight, (she was still loosing weight, she lost a total of a 1 1/2 lbs!) she needed to hold her temperature better, she needed to stop having A's (apnea) and B's (bradycardia) and she had to learn to eat! She still had a
little ways to go..

Cuddles were always the BEST

Over the next several days we were taught A LOT about a baby with upper respiratory problems and what it entails when we go home. Scary to say the least. We were taught how to 'pace' Bella's feeds. We would have to put the bottle in her mouth let her suck 3 or 4 times and then pull it out so she could breathe. We also had to hold her a different way with our hand holding her head/ neck while she is in a reclined sitting position on our knee. Yes, we became very talented.. No cuddling our sweet girl while feeding, unless we wanted her to turn blue. Feedings were the time that I totally dreaded, it was the most stressful experience ever. She would constantly stop breathing during EVERY feed, we would have to stimulate her feet or blow hard in her face to startle her to start breathing again. She would also choke a lot too.Who wants to feed a baby like that? It is definitely not relaxing or comforting.

Since the day Bella was born (actually before that) I was determined to breast feed her. I had some trouble with Kallie so I was a little bit nervous. I was a ritual pumper while Bella was in the hospital, I would pump every 2 hours, put it in the specified bottles from the hospital, stuck Bella's label on it, wrote the date and time and then pack it up to bring to the hospital the next morning. When we were at Memorial City it was nice because they supplied me a pump in Bella's room so I could relax in there, watch TV and be close to Bella. At the medical center they had what they called a "pumping room" you walked into this stale room, sit in a chair behind a curtain, pump for 20 minutes, get up wash your hands, transport your milk and then delivered it to the lady at the front desk so she could put it in the freezer room for you. It was terrible, I hated it. My milk was slowly drying up because I was not around Bella enough to be stimulated and she could not breastfeed because she had CNPAS. She had no latching abilities and also had a terrible sucking reflex. It was to the point that Mike was recording snip its of Bella crying while we would visit her and then he would play it over and over and over again while I was trying to pump at night.. Oh the things we do for our children.

As we were trying to get Bella to a good place to be able to come home, she continued to have severe apnea's and bradycardia's. She would still stop breathing, but there were several times that the nurses would have to intervene with oxygen and so forth. It was to the point that doctors and nurses thought they were not solely coming from the CNPAS. They decided to call in a pediatric pulmonologist to monitor Bella. Her name was Dr. Jon, we LOVE her. She is still taking care of Bella today and she is awesome. Bella needed to have a sleep study done to figure out the source of her apnea's. Apnea's are common in premature babies, but when they are associated with bradycardia's they become very dangerous. It is the body's way of trying to reserve "life" when the baby stops breathing. Once the baby stops breathing for long enough, the heart and pulse start to drop drastically to try and compensate. Most of the time these types of apnea's resolve themselves. Bella's were not resolving on their own. Dr. Jon informed us that a sleep study is very difficult to do on a baby that is "in patient" in the hospital and advised us to wait until she was released. She told us that regardless, Bella was going home on an apnea monitor so we were going to be alarmed if she stopped breathing for more than 20 seconds.

It took almost 2 weeks for Bella to show that she is "thriving". We had learned to pace, she was controlling her temperature, they taught us how to stimulate Bella if she was to stop breathing, she only needed to gain some weight, or else we were staying much longer so she could have surgery. They were not going to give her much longer, but she finally gained an ounce! That was a GREAT day :) They started to schedule things such as the apnea monitor company to come train us and we both had to take an infant CPR class. Her doctors all needed to sign off on Bella going home as well. It was a long 2 day process, but Bella was finally allowed to come home!!





Are we really leaving?

We knew we were nowhere near the end of Bella's adventure, we were leaving the hospital with 3 follow up appointments for that week, a list of emergency phone numbers, and packets of information. It sure did feel like a huge relief to finally have Bella in her car seat looking excited to be leaving!!





First time being home!

 

Children's Craniofacial Association Volunteer

I am so excited to be a part of the Children's Craniofacial Association! I have been following CCA Kids, as well as several of the children affected by craniofacial abnormalities, since Bella was born and recently applied to become a volunteer.

This weekend I recieved a box of goodies that will help me begin to raise awareness for craniofacial diseases, such as SMMCI Syndrome.

The Children's Craniofacial Association is a non profit organization located in Dallas, Texas that is commited to helping children, and their families, affected by craniofacial abnormalities. CCA addresses several concerns relating to children with craniofacial abnormalities, such as, medical, financial, pyschosocial, emotional and educational support.

To find out more information about the Children's Craniofacial Association, or to find out how you can help too, visit CCA Kids.

By the way, September is craniofacial acceptance month! Let's make sure these kids feel ACCEPTED, you can purchase bracletes, t-shirts, mugs and much more HERE to show your support throughout September, and the rest of the year :)

Promising News: The Carter Centers & How They Can Help Bella

Over the past several months, I have met a few people through Facebook that have children with SMMCI Syndrome, the same syndrome as Bella.

Mike and I have searched for almost a year looking for other families that have been going through the same thing or similar things as us. Before we found our SMMCI families, we were frustrated, we felt alone and even our doctors did not have any information for us regarding Bella and her issues. They were treating every issue that Bella had separately. I kept feeling like there was a reason that all of these random things were going on with her. Yes, she has SMMCI syndrome, but that is usually accompanied by something "bigger" and if not, then it is just an isolated anomaly. We knew that Bella was having feeding and swallowing issues, muscles spasticity, high tone, breathing difficulties, central sleep apnea, and recently P5P deficiency, which is associated with epilepsy. We also knew, from the very beginning, that SMMCI syndrome is highly associated with Holoprosencephaly (HPE) and often debated on if it is a micro form of HPE.

Here is a brief overview of what HPE is. HPE is a condition when the brain does not grow forward and fully split into two separate hemispheres. The malformations of the brain can range from severe to mild. In a child with mild HPE, the brain is split but  the child has some very mild abnormalities that a lot of times are over looked as HPE. HPE occurs in about 1 in 5,000 to 10,000 live births and current studies indicate that only about 3% of all fetus's with HPE survive the delivery and the majority of those die within the first 6 months of life. With that said, VERY little is understood about the most mild cases of HPE. We do know that children with HPE can also have secondary disorders, such as epilepsy, gastroesphageal reflux, hormone disorders, movement disorders and spasticity, respiratory disorders, and a few others.

At 10 months of age, Bella had an MRI to check for Cerebral Palsy. They were looking for any major damage in the brain, and luckily did not find anything.

One of our wonderful families that we met through Facebook opened my eyes to The Carter Centers.  The Carter Centers are a brain research company mainly focusing on HPE. They are trying to update the statistics and information known about HPE. Since HPE is usually considered such a major deformity, there is not much information in the medical field for children suffering from the most mild forms of HPE.

The Carter Centers will read your child's MRI, review your child's blood work, preform genetic testing and do patient evaluations (if you live close to one of their centers) - ALL FOR FREE; if you have a child that meets their requirements of course. They will the provide you with their findings and tell you what other children are like that have similar defects.

Our dear friend who brought The Carter Centers to my attention, has a daughter who is 2. She also has SMMCI and a lot of the same symptoms/ issues as Bella. She had an MRI and hers came back "normal" as well. After feeling like something was just not right and spending lots of time doing research, her mother found The Carter Centers. She sent her daughters MRI to be reviewed and it came back as Septopreoptic HPE, the most mild form of HPE... To most people, this would be devastating news. It is TERRIBLE to read about and something that you would never wish upon your worst enemy, BUT this is answers for parents like us!

We have already talked with The Carter Centers regarding Bella's case and they want to review Bella's MRI. If they come back with anything, this could mean a lot to us. This could give us the answers that we have been looking for. We wont know about Bella's future, but we would have a diagnosis, something that we feel we are so far away from right now. We have a lot of random diagnosis for Bella right now, but nothing really makes sense. This would pull them all together and ultimately, not seem so scary for us. This could be ONE big diagnosis that houses all of her other issues.

It will be a while before we get any response from The Carter Centers (8 - 12 weeks), but it is worth it!

Meeting Claudia- Bella's Newest Therapist

Bella was in rolled into ECI (Early Childhood Intervention) close to a month ago and yesterday we met our first in home therapist. The therapist, Claudia, is working on Developmental Therapies with Bella. This is an all around therapy. Working with her body and mind as a whole rather than just focusing on a specific area like they do in Physical and Occupational Therapy.

Bella has been really shy and has a hard time in new places so it was really nice to have someone come to our house and work with Bella in her own environment! Bella really seemed to enjoy it and took well to her, plus Kallie got to be involved too. It was much more like play therapy, we had an hour long supervised play session.

Claudia would place toys in certain areas of the living room to make it a challenge for Bella. She asked a lot of questions regarding Bella's Physical and Occupational Therapies and feeding / speech issues. Claudia was extremely pleased with Bella's curiosity, focus and "smarts". She said that is the best thing going for Bella. A lot of times you see kids that are behind but they are also severely cognitively behind as well. Bella is not too far from where she should be cognitively, but physically she is still several months behind and has a hard time doing things "correctly".

A struggle in therapy these days, with Bella, is that she has actually figured out how to do things in different ways. If it is a strain on her body, then she has another way to do it and get it done. This sounds like it would actually be a good thing right? The issue is, if she adapts and learns other ways to do things, such as getting around, then she will never learn the correct way. Her therapist strongly believe that if we can teach Bella's body and mind the correct way to do things (crawling, sitting, walking, running etc.), then she will flourish and be able to do them for the rest of her life, but is it going to take work!



Trying to hide from us!

It takes a long time to break bad habits but once they are broken, they usually stay that way. This is true as long as Bella does not have a big growth spurt where her muscle tightness causes her to develop slight deformities, such as walking on her tipy toes, that need to be worked through again.  Claudia told us, much like all of her other therapist have mentioned, that Bella's inability to do certain things seems to be coming from her high tone and spasticity, not her brains inability to function correctly. Her brain knows what to do, her muscles a forbidding it.

Of course, this is all speculation in the therapy world, but it sure does give a lot of reassurance. As a parent all you want is the best for your child and if Bella requires therapy for the rest of her life, then that's what we will do! We will make it fun, we will make it a daily routine and the whole family will do daily stretching and exercises with her to make sure she doesn't feel alone :-)

Bella's Birth Story Part Two: Welcome to the NICU

Bella was here after a rough two days and I was stuck in the recovery room because I was having a bad reaction to the anesthesia. I had lock jaw, terrible shivering, low heart rate and low blood sugar (I am type 1 diabetic). Unfortunately after surgery you can't eat of drink anything for a while and I was totally freaking out with out being able to explain in full sentences that I NEEDED something with sugar or else they were going to have a much more serious problem on their hands than just a shivering woman, I was going to pass out!! After about 30 minutes they were finally able to get glucose for my IV and get my blood sugar to come up some.

Mike was asked to keep away from Bella while in the operating room, they finally thought that they had her stable enough and he was able to make a quick run with her to the waiting room to see family. It did not last long and they then whisked Bella away to the NICU. No one really explained anything except that she was not going to the nursery, but instead up to the NICU because she was not breathing correctly.

Daddy showing off Bella for the 5 seconds he had her.

Finally, Mike was escorted upstairs to the NICU to be by Bella's side. She was already hooked up to oxygen, monitors, and IVs etc. He said it was very overwhelming and scary to see all of that. At Memorial Hermann Memorial City they have every NICU child in their own closed off room. It is visible by a big glass window and sliding door for the nurses to get in fast, and believe me they are FAST! When their little phones/pagers start beeping (which is constantly) they are running to the room to check on that baby, and each nurse has their own station directly out side of the babies room. An awesome NICU might I add!



Ou sweet, swollen baby girl.

Bella was placed in the NICU for breathing difficulties, low blood sugar and a few other things that, what we thought, were related to her prematurity. I was still downstairs and was not able to see her until the next day. Yes, I cried most of the night because I was not allowed out of the bed!! I still had not even met her yet! I only got to see a few pictures that Mike was able to get while upstairs with her :( I was SAD! Luckily, we had some wonderful nurses, and doctors taking care of Bella and they called many times throughout the night to let us know how she was doing and Mike was constantly running up and downstairs to check on his ladies :). Another thing that was really nice about this NICU is that every 12 hours you are assigned a nurse to your baby and you are given their direct phone number, they carry around these phones and the monitor beeper everywhere they go in their pocket. You can call and talk to YOUR nurse anytime of day. They also would place your same nurse with your baby each day depending on the level of care your child was needing. The nurses are ranked so that if you had a "high level" nurse and a baby came into the NICU that was more sick than yours, then you would get a different nurse the next day so that the other nurse could care for the sicker child.

The next morning I was finally able to be wheeled upstairs to see the new princess. It was sad, I was not able to hold her yet and her monitors were constantly beeping. She had a feeding tube and was VERY swollen from all of the fluid I had during my pregnancy.

Meeting my hero for the first time!

The next day the nurses where making their rounds, downstairs, with me, when they noticed that my blood pressure had been steadily rising. The doctors at first rubbed it off as a reaction to the c-section and my body was just trying to find normal again. I was to be monitored a little bit more closely.

Bella really had no changes over these next few days besides having Jaundice (which is pretty common with preemies) and was still on and off of oxygen, on the feeding tube but was having desaturations (dsats) with her oxygen. She would struggle to breath, then stop breathing and then her heart rate and pulse would drop. The nurses would have to intervene with "blow by" oxygen or even put her back onto the oxygen for a few hours at a time and try to diminish it little by little. On day three after Bella was born, our favorite nurse, Pam starting saying things like, I don't think her breathing issues are preemie related and that there may be more issues . They described her as a "stuffy" baby earlier and said she had swelling from being suctioned at birth and that was contributing to her breathing issues as well.

Bella sun tanning :) - Jaundice Treatment.

Bella's day 2 of Jaundice treatment, stylish glasses.

Bella had her feeding tube removed one morning so that she could have a "better try" at feeding from a bottle. She ended up having some really bad dsats and bradys (heart rate dropping) during her bottle feed and needed a feeding tube again. Nurse Pam decided to pass it through her nose so that we could practice bottle feeding with out having to remove the tube. The tube would not go down either side. We were downstairs and got a phone call to come up and talk to her as soon as possible. We got up there and she said we think Bella might have something called Choanal Atresia. Three of the nurses had been trying to pass a feeding tube and the smallest catheter down her nose for the past hour with no success. Then she wrote the name "Choanal Atresia" on a piece of paper and said that they have an ENT coming to see her first thing in the morning. When we looked up CA we were devastated. Our daughter might not have an opening in the back of her nasal passages? She might have to have surgery tomorrow? What are all of these other associated anomalies about that we are seeing in these Google searches? We were nowhere near prepared for this type of news.

Daddy trying to teach Bella how to bottle feed.

The next morning the ENT arrived and was not able to make it down either side of her nose and said that we needed to start neosynephrine drops (which had been used on and off for the past few days) to keep the swelling down and see if it gets better. That afternoon, nothing was working so they started her on steroids. ENT returned the next morning and was able to partially get down one side, he knew it was not totally closed off, but was not sure about the other.

Meanwhile, downstairs in my room my blood pressure continued to rise and I also started to swell pretty bad. I looked like a balloon quite frankly. I remember when the nurse came into check my blood pressure and other vitals I was telling her that I was having a terrible headache and needed some Tylenol, or something to relieve the pain. She checked my blood pressure and ran out of the room, not saying anything, I mean ran. Doctors and nurses started pouring in the room and told me to lay down we are going up stairs. They were on their phones and running me through the halls. My blood pressure was reading 205/128. They told Mike that they had to get me to the ICU immediately as I was past "Stroke" phase and could have a stroke and start seizing at any moment. Mike panicked. I was wheeled into a room and started IVs and medications at lightening speed. Mike said people in the halls were moving faster than he had ever seen. All of our bags, flowers, and my first solid meal since the baby was born was still downstairs in our other room.

I was having what they call Postpartum Preeclampsia. A very serious treatable condition that can happen anywhere from 48 hours to 6 weeks after delivery. Luckily I did not seize or have a stroke. I was seen by many specialist to try and figure out why my blood pressure was rising so much more lying down than standing up. It is usually the other way around. The doctors were baffled. The treatment for Postpartum Preeclampsia is magnesium. The have to give it to you through an IV for 24-48hrs. You have a catheter in and are not allowed to move, so no seeing princess Bella for me. This was even harder now that I new something was terribly wrong with her. I could not comfort her or be there by her side. I was breastfeeding every 2 hours to try and get her the best nutrition I could as a mother. Mike would take what I pumped upstairs every time to get it into her fridge. He would go be with her, then come stay with me. He was awesome at this time when we both needed him so badly! He even found a moment to run out and grab me a subway, since my first real meal was left downstairs. Yes, I got a foot long and ate probably close to all of it!

First "real" meal after Bella's birth.

By the time my treatment was over, I had drained almost 10 pounds of fluid! I no longer looked like a balloon :)

I was released from the hospital with 3 different blood pressure medications. Although Bella was in great hands, the LAST thing I wanted to do was leave our sweet princess there. That was a heartbreaking moment. I felt empty, like I was forgetting something. I cried the whole way home. As soon as we got home I called to check on Bella and laid on the couch. Bella must have wanted me back there because a headache started approaching again. We checked my blood pressure and sure enough I was back at the hospital within the next hour. We were instructed to go straight up to the labor and delivery floor to begin a second treatment of magnesium. Although I was not able to go sit with Bella, I was in the same place. I felt safer being there just minutes from her rather than at home where it would take us almost an hour to get to her side.

One more 24 hour treatment and I was good to go. This time we were sent home for good. The next afternoon we were visiting with Bella, talking with her neonatologists, ENT's and nurses when we found out the Bella was going to have to be transferred to the medical center. I started crying. We knew that was going to be a WHOLE different ball game. No personal rooms, you are actually in what they call a POD with 8 other babies. You don't get a personal nurse and you can't stay with your baby at all times if you wanted too. BUT she was going to get awesome medical care. She was going to be seen by a team of pediatric ENT's that could truly help her and figure out what was wrong with our baby. A team that we are still with today, that have been so special to us this past year. We thank God for them everyday.

Sweet Angel :)

{Bella's ambulance transport and Medical Center NICU stay coming soon...}