Struggles...

I probably wont share this blog post right away...I am not ready too.
Yesterday Jaxson received a new diagnosis and it put me into shock. Apparently I really don't know much about this condition because although its been talked about all through this last year, I thought, "Nah, not him, its something else, he's incredibly social.". I guess I need to educate myself so I can educate others...I know they will feel the same way - "Not Jaxson, it doesn't fit..." But yesterday, a doctor said it does. Luckily I was there through the testing and the doctor talked me through it, what she saw, what was normal, what was not. We get the full results next week. I asked her what her hunch was...I don't know if the test will show her feelings however...We will wait and see.

My heart has been in my throat all night....I don't understand. Am I a hypochondriac or something? How can my child have 4 (that hopefully will be 3 if he out grows his epilepsy) life long conditions that he will always have to struggle with? How can there be 4 different things, not one big thing!? How am I going to help him?! Before you go there, I KNOW how lucky we are. I count my blessings everyday...I am glad hes here with me, struggles and all, but I worry for him, I am sad for his future. Having a child struggle is heartbreaking. He struggled so much in the NICU, I just wish he didn't have to struggle anymore.

Genetics

So, We have seen genetics. What an intelligent bunch of people!! We don't have any answers but they took a bunch of blood work and our first steps are to check for double chromosomes, issues within the genes, metabolic disorders and a specific mutation to the Rett Syndrome Gene. She said we have many steps to complete, but she felt she could help us. I am hopeful, but it'll be 2- 4 weeks before we get the results, I'll let you all know when we do, and then possibly on to the next step.

In the meantime, more blood work for Jax this am and next week to check his trileptal levels. I'm sick of blood draws and he is too, at least we buy him tons of presents afterwards!

We are going down to Boston on the 2nd for an In hospital long term stay EEG. We will be there for about 4 days. They have also scheduled a LP (spinal tap) on Jaxson. I guess the Neurologist is a little suspicious of something he saw on the MRI, but wants to see what his EEG shows first. Fingers crossed, because the thought of a spinal tap makes me through up literally in my mouth every time I think about it. I use to do it everyday on dogs back when I was working at the neuro clinic, but that really doesn't bring me any comfort at all.

So for my family, I probably wont check in for a while, until we hear something different. If you want to be kept in the loop, or you want to know about Jaxson, please ask me personally and I'll tell you everything. I can't think straight these days...and checking in = support.

Onward and forward, its almost Jaxson's 2nd birthday...Holy Moly!

A little Update

Hello Again, Just checking in.

Jaxson has been having a really hard time these last few weeks. He has been falling a lot and not catching himself again. Like a roller coaster. Last week he had fallen and he caught his fall with his head into the wall and into a wooden crate....followed lots of blood and a very frantic doctor visit! We finally have spoken to the doctors in Boston and he believes its a Atonic/Absence seizure, and he DOUBLED his anti-seizure medication and he requested that we do another In Hospital EEG down in Boston...I'm worried about this, worried about my house, my dogs, doing it alone, finances...But we'll cross those bridges when they get there. I am hoping we are on the right dose now, and we'll stop these seizures in their tracks. So far he has not fallen this week, any more than a typical toddler, so here's hoping!!

He has been having a  hard time with his left side, hand in hand with his falling.... (but we are using Kin so tape to try to correct that placement, though its not working in this picture! We will re-tape with a stronger tension) His brace has been ordered.

His behavior has been extreme, and its been life altering in the fact that we don't go anywhere right now. He is self abusive, obsessive and angry, and doing some pretty scary things...OT/EI/PT have all been helping us, so maybe things will calm down and we'll figure out what he's feeling, and why.

RA blood work came back normal, so this likely means his fevers are caused by a genetic syndrome of some sort. We are going to Genetics on Thursday. Fingers crossed for us!

I will update more after our appointment.

Love you all!

Bloodwork and finger crossing...

Jaxson's doing pretty well. We had an appointment with Rhuematology to check for Arthritis or other diseases that can cause chronic fever. Jaxson's joints looked very good - he does not have RA! We did some blood work to see if the fever is a "immune" or inflammatory response - if that comes back positive, we're going to have to investigate where in his body there's a problem, if it comes back negative (which I'm almost positive it will) then his fevers are most likely caused by the brain - it could have something to do with the brain damage, but likely nothing we can do to treat, or fix this problem. We will have to look for ways to cope and help Jaxson advocate for himself when he gets older. I always had a feeling that it was something that wouldn't go away. I am hoping when Jaxson is older, he can read his body, know when he's getting dangerously hot, and know how to recover. We'll learn this :) - It could also be a genetic syndrome.

We have genetics on the 17th. I'm more ready for this appointment than we have ever been ready for any other. Lots of blood work but also, answers. If not, we go back to behavioral health.

I feel like Jaxson's lip droop has gotten better, it doesn't glare at us like it use too, but it is still there. Perhaps we're use to it, or its gotten better? We have noticed his fingers on his right hand are starting to cross unintentionally, wierdly, croockedly...at wierd times. His doctors and therapist told me this wasn't a "normal" part of development for this age, and they're not sure what it is..if its part of whats going on developing into something more (like the lip droop) and to monitor it (another watch and wait!). I'm wondering if his trileptal is causing muscle spasms, as suggested on my epilepsy forum.  They've talked to us a lot about mitocondrial disorders...think we're going that route next. Anyway, We are keeping an eye on it...Doesn't look comfortable. He got fitted for his hand brace last week, its going to be an awesome green color! He seemed to be fine with it, I hope it helps him in the long run!

He is also waking up screaming everyday. It seems painful. He's had times like this on and off since being born, but it seems more intense now. He wakes up, smiles at me, then goes to move and just screams...It seems like he's hurting and uncomfortable on and off until his nap...Somedays its heartbreaking. He's a very unhappy kiddo right now...hard to say, but he is. I don't know if its pain, or behavioral, or a mixture of everything he's dealing with right now. He's angry, frustrated, and I can just see it in everything he does. Seems like we've been focusing on him constantly to get his mind off the pain/frustration and on to something fun and nothing works for long, its been exhausting! Hopefully we'll get somewhere.

We should get the results of the RA bloodwork this week. I'll update everyone when I know more.
Sending love <3

Its working!!!

Hello All,
Been a while since my last update, a lot of things have happened...

We have a rheumatology appointment set for October 1st, followed by Genetics October 17th. So very happy to get these specialists on our team... I think genetics is the big step in the right direction for us.

Jaxson's on his highest dose of Trileptal, and he's still on Keppra...He's been falling still, but not at as much. His lip droop is still there but its not any worse at all, its mild and is only noticeable when he opens his mouth or smiles a certain way. His protective reflex is the same - still not  really there, but he is using some safety responses....so  I'm glad its not getting any worse so far!! His fevers are the same, despite the environment cooling down a bit...but hopefully we wont see anymore high 104's before we figure this all out!

On an amazing note, I do believe Jaxson's seizure medications are helping. I am no longer seeing starring spells, though I did see one yesterday but it was so short...I think it was more tuning out honestly...and the best thing is - he's starting to be more vocal!! He's making a lot of noses, different syllables.... Though we're not hearing anything "consistent" yet other than "sit", our speech therapist cried this morning and hugged me and said, " Im so excited, I just hope these noises turn into words and I really hope they stay... My fingers are crossed" and mine are too...Regression has been one of his biggest problems. Recently - He has regressed his skills with how he holds his crayons and "colors" as per OT, and he's regressed in some signs this week - However, that could just be because he's being more vocal than before!

He's doing really well and I'm over the moon with all these accomplishments. I have no doubt in my mind that these medications are helping him...and I'm just so happy.

Blood Work, Blood Work and More Bloodwork

We are off early to the lab this morning before Jax gets his trileptal. Dr's in Boston are very concerned of the new development and want to check the levels in his blood before dong anything further. Checking many different things along with Liver functions. I don't know what this means as far as his facial droop...I'm just sick of blood draws...We have them all the time and I know its only going to get worse when we hit genetics. He's doing great though, no better but no worse....He lights up my world with his smile, I couldn't imagine loving anything more.

Josh isn't with us today and I'm starting to feel the weight of this....

Starting to get a little crazy again...

So...We're kind of in the same spot since my last blog post but I feel like I should update on somethings, since I'm having a hard time and its coming through in my blog posts...

The last weeks have been kind of scary. 1 week ago we rushed Jaxson into the emergency room - He made a wierd noise in his sleep,  he was having trouble breathing and his heart rate was 200bpm. He was twitching (not tremoring) and his temperature had risen to 104. By the time we got to the hospital, all but his temp were normal and they were wondering if he had a different kind of seizure since he was not very aware when I took his temp at home and took his vitals...(I do get to use my vet tech skills as a mom!)

Jokes aside, Jaxson has been falling flat on his face and he has not tried to catch himself for the last 5 days. Although some days he has trouble and he falls, he usually can always catch himself -This is called your protective response reflex, but this is so different. One day he was standing in the middle of the floor with his teddy bear and then he just fell head first into the floor, like something had pushed him. He was aware, so I don't know if this was seizure like activity but it seems convincing considering the previous episode. He has proceeded to toppling off the couch onto his face, Bruises and 2 bloody noses later...It just hasn't stopped.... Temperatures are slightly higher than normal, around the high 101's.

Yesterday at PT, our therapist pointed out that she thought he had slight facial drooping on the left side of his mouth. Though I looked when she told me, I hadn't noticed it, and felt it was really minor, maybe it was always there and we never noticed? We kept an eye on him, but when we woke up this morning, It was far more pronounced. Although it is mild, he has a top lip droop - mostly visible when he smiles or opens his mouth. He does not have a droop with any other part of his face, and in fact his left sided weakness activities were amazing at PT yesterday.            

 So luckily -We had an appointment with our Pedi this morning .We recently (4 days ago) started a new anti seizure medication for his falling and the spell that happened on Sunday in hopes that we can get Jaxson on a more tolerated medicine and dose and see if this helps...so...Could this be a result of the seizures? its possible. However, Our doctor feels like this is most likely "whatever is going on with jaxson" neurologically is progressing. The part of the brain which controls the cranial nerve that would effect just the top lip is such a tiny small spot, so its unlikely the new medication would be cause for this - however we do have a phone call into Boston right now.... We had no closure today...no answers but 1,000 more questions.. as always! They have been discussing another MRI, I really hope we don't have to do that again.

But...it looks like things are progressing, and its just scary - How far will this progress? What else will be effected? Will the facial paralysis stop here? go away?....So I'm a little worried...Okay, A LOT worried!

(On a back note we got a referral for Genetics and Rheumatology ASAP)

Another Chronic Fever Specialist...

First off, I wanted to say THANK YOU! to everyone who reached out and chatted with me about my previous blog post. I had no idea how many people thought about us, cared, or just wondered about Jaxson...and reached out to me. Thank you, you're amazing and you made me feel so very loved yesterday.

Today I am taking Jaxson to go to the ENT specialist as recommended by the neurologist in Boston. They say there is a disease that causes abscesses in the adenoids and tonsils that can cause a chronic fever and little other symptoms. Though I feel this is unlikely since he did not respond to antibiotics when he had Lyme Disease and he's NEVER had an ear infection, we have to cross it off our list. If they do find this, it will likely mean surgery for Jaxson. We are also getting his hearing tested again today. This will be his 4th test. Because of the type of ventilator he was on, and the fact that Josh has mild hearing loss, and I have severe/moderate loss from a congenital birth defect, it is something we need to keep an eye with Jaxson anyhow and It might give us some answers as to why he is not responding to his name, and is very sensitive to low noises but not high pitched.

We are on our own today, Josh is at work. I'm thinking this is a great time to go check out something yummy since we have to drive to portland anyhow...Just not sure what yet :)

What's Been Going On...

We are back!
It has been a long time since I've found myself any time to sit down and actually write something, though I have been needing to for a while. Writing my thoughts, my feelings and my worries is like the best therapy for me, and I'm finding I need that more than ever right now!

First, I'd like to update on Jaxson.
He is almost 2 years old! He is 24lbs, 32inches long and he's growing and learning a little more each day! The doctors all say he's going to be a short guy when he grows up....But, He's got some pretty big shoes to fill - Have you seen his daddy?!  (Biiiig guy!)

Health wise, it has been a very hard year and a half, full of never ending appointments, therapy, questions and fears. I know a lot of our family and friends either do not know what is going on with Jaxson, or are very confused - which we get, Josh and I are also very, very confused..... so I thought this blog with be a great opportunity to explain some of what we've been going through.


Very Mild Spastic Cerebral Palsy
Jaxson has had an in home physical therapist since he was born. Around 7 months of age, we started noticing that Jaxosn's left foot turned in when he was in his high chair and when he was being held. He started to have spasms - called clonus in this leg when I was feeding him a bottle. Since he was so young,  We've all opted for a wait and see approach. When Jaxson first started to crawl (he was 11 1/2 months old), his therapist noticed that his left hand was curled in when he did so, his thumb tightly pressed into his palm. Again, We decided to wait and see for improvement.  By the time Jaxson was 17 months, He was not standing on his own, he would hold onto furniture, but he would not let go. He preferred to crawl to get around and would resist to being walked with his hands. This raised some red flags to our therapist and to our neurologist. They suggested an SMO braces for Jaxson to support his ankles. He was walking on the side of his ankles and he was weak and would fall. He was hyper-reflexive on the left side. By this time we had started constraint therapy on his hand, and he started to use his left side a lot more - we caught it at the right time! When Jaxson's SMO's came in, He was 18 1/2 months old and still not standing on his own. With ONLY  2 weeks of the braces, he was able to stand on his own, and took a few wobbly steps. Now at 23 months old, Jaxson is walking. Walking slowly he does well, but is very wobbly and turned in when he tries to run. He likes to go on his tippy toes when he does not use his braces. Due to some other issues, which I'll discuss later, our Neurologist suggested that we do an MRI. 

Left hand in fist, left leg hanging out behind him, left eye (psuedostabismus) 

 The MRI findings showed a small spot on his brain, and he was given the diagnosis PVL (Periventricular Leukomalacia) which in a nut shell is - white matter damage which was likely caused by oxygen deprivation when his lungs collapsed so often when he was born. (Premature infants are extremely susceptible to this brain injury). She then told me, that this was most likely a very mild spastic cerebral palsy and it wont ever go away, but with help of therapy - we should get it so that only he and the neurologist would be able to tell he even has it at all. Jaxson is doing extremely well with this, and all our therapy! People who do not spend a lot of time with him will most likely will not  notice his left sided weakness unless I point it out to them... I notice everything, every curl of his fingers, every drag of his legs...but it is all I've done since he was 7 months old! (Watch and worry). When Jaxson is sick, or not feeling well, You certainly can tell - He falls and cannot catch himself, He gets hurt a lot, and will not use his arm at all. My family has seen this, and is so shocked by the change in Jaxson when he has these days. I am glad that the therapy we have done for Jaxson has made this so easy for Jaxson, I am so glad we caught this so early. It will likely be mostly annoying for him, he may not be able to do things like sports, but we'll help him cross those bridges when we get there! He also will be getting a small, soft hand brace to keep that pesky thumb out ALL the time!

It hurts sometimes when people say "I don't see anything wrong with him, he's perfect!" Honestly...I hope you don't see it, I'm glad you don't. I don't spend 3 days a week at therapy so you could. But it is real, and it is there... as is my fear, and worry for his future.... All real. However,We are so incredibly blessed that it is mild...


Seizures/Developmentally
Jaxson was just recently diagnosed with Epilepsy on August 22nd from a Neurologist in Boston. Epilepsy often goes hand and hand with CP. We have started on Keppra (and He's really had a horrible time on this medication....Long story and I wont get into it here). We started noticing around Easter that Jaxson was having these starring spells, though at first we thought they were just normal tuning out, anxiety ect...until they started increasing in duration and he started to lose consciousness, excessive drooling, and he would also lose his blink response often. We have had 2 different testing for this, one in the doctors office and another was a 3 day hospital stay (also the MRI). Developmentally Jaxson is struggling.  He is not hitting many milestones that he should for even his adjusted age. Firstly is Speech (We see a speech therapist 2 x a week) Currently, He has 1 consistent word and that is "sit". Though he babbles, and we hear words such as Mama, Dadda, Nana, he is not consistent with them and does not use them directed at us or objects at all. We use sign language. He signs "Bottle" and that is his sign for all things eat or drink. He also can sign "all done" but that has currently been lost. As far as communication - it is hard, frustrating, but we guess and play "choices". Although He has had some words and signs before-  many of them have regressed from time to time and he goes months without remembering them, forgets them. Sometimes they come back but some have yet to come back. Regression is never a good thing. The neurologist in Boston said there are some rare disorders that could be causing this, (that I was not given the names of), It is possible that its all linked to seizures  or this could be a sign of autism spectrum (though Jaxson is so incredibly social, He does have signs/flags and we have that appointment next week, though they will likely want to see how he does on Keppra) Early intervention is the key for most everything here. He has some abnormal behavior concerns.There are a lot of different things of development that is of concern for Jaxson...Too many to write, if you want to know more about this, please ask me because I would be more than happy to talk about it.


Chronic Fever
Jaxson suffers from chronic fever of unknown origion. He is always between 100.6f to 101F. I consider that his "normal" temperature. When he is sick (as when he had Lyme disease, his temps reach in the high 103's to 104.8, and even something as simple as teething, it cannot be brought down with NSAIDS or tylenol).  The heat of the environment also effects this, so there has been times its felt completely out of my control. He has had this for over a year, and we have gone to infectious disease, immunology, ENT, and Neurology for this. We have gone through about 20 thermometers. We do not have any answers. We do not know if its related to the seizures  other than the high fever is a trigger to the seizures  We are going to see a specialist this week for his ears/adenoids but this most likely isn't the cause, since his fever does not respond to antibiotics. (but another thing we have to investigate) I am not sure what happens after Keppra and the adenoids are ruled out. They spoke to me about genetic syndromes....I don't know. We had to give up on our Summer. We tried to do things and even risked the Fourth of July Parade but he got a dangerously high fever, glassy eyes, had a seizure  so instead of being with our family and having a normal cook out that afternoon, we had to stay inside by ourselves with the A/C, as we have had to all Summer. Honestly it was really hard, it still is. It is lonely. We play outside in the early morning and in the late evening. We do not go for car rides when its hot. We do our errands in the evening. Prevention has been the best key for him, since I cannot effectively cool him. I'll let you know more on this as we continue to learn...its a weird one and he puzzles everyone with this!

I guess those are the biggest concerns... I am sorry for those who didn't have this information and really needed it. Some days I feel like I have failed as a wife, as mother, as a daughter, as a daughter in law, as a sister, as a friend...I know that I am not the kind of person that I want to and should be to those people...Not like I use to be before all of this. Most days I am consumed by this, and spend whatever time I can with my husband and Jaxson. Most days we just focus on doing fun stuff with him, because we are just so emotionally exhausted and scared. Maybe it seems like we are always busy...and I guess honestly we really are. I love you all, and I appreciate the love and support you give us. Please be patient with us...We are in the unknown, and it is hard. Love us even if we make mistakes. Love us even when we are crazy. Hug us when we are scared...because we are SO scared....Please try to understand...Please be patient....We love you all so much.

Happy 7 months!

Happy 7 months to my sweet little boy.... I cannot believe how time flies, and I cannot believe how much you've grown. You amaze me in all you have accomplished and continued to accomplish. I can't wait to continue to amaze doctors and prove them wrong! You're nothing "short" of AWESOME! Mama and Daddy (and your brothers) love you!!! ♥

I have not been doing a very good job keeping up this blog! I am sorry! I am finding out that being a mom to a premature baby keeps me continuously busy on my toes with what seems like never ending appointments and visiting nurse/therapist appointments. Jaxson is now 6 months old. He is doing amazing, more so than I ever thought possible and Josh and I have a knock on wood ritual every morning to hope that it stays this way. Seems almost too good to be true! Anyway, I just wanted to let you all know that I am planning on keeping up with this blog, to help other moms and also, Jaxson's progress.

On 5/15/2012 Jaxson weighs in at 15lbs 14 oz, and is 26 inches tall 

Preemie Parents Day

Today, for Preemie Parents Day, I am remembering and sending love to my fellow preemie moms and dads for all that you have been feeling, or are currently feeling. Your love, strength and courage for your baby is inspirational. I am not alone with feeling like I was torn into peices when I had to leave my baby behind in the hospital and drove away when I should have been bringing him home. How hard it was not to be able to see him or touch him after he was born, or being able to hold him or let alone touch for weeks  without asking permission first. I remember how scared we were when we called the NICU every hour during the night (Im sure we drove the nurses nuts!), waiting to hear bad news, praying for the best, scared every time the phone rang that it would be THAT call. I remember watching my son fight and suffer with daily procedures, chest tubes, morphine, ventilators and feeding tubes, begging for him to be ok - asking the doctors if we were having him suffering too much- should I let him go to Heaven? As I hold him tight now, remembering with tear filled eyes - I am so thankful, I feel so incredibly blessed. Though some of our babies are out of the hospitial, they are still preemies and most of us have many long battles ahead of us yet. So I remember you Preemie Moms and Dads - you are not alone! We love you. Stay strong! Happy Preemie Parents Day!

We're Home!

A very long overdue update...so much has happened!
We have been home since December 3rd.. just in time for Christmas! Jaxson is now 10 weeks old, and he weighs in at 8lbs 3oz, and is 19 inches long. A big improvement from when we left the hospital. He is doing fantastic! He is wiggling around, looking around and focusing on things, and starting to make some noises. We are hoping that he'll smile soon, but according to the doctor - his adjusted age means developmentally, he is only one week old. As far as health goes, all that we can complain about is a very slow, immature digestive system and a pretty nasty umbilical hernia - I'd say we are pretty damn blessed!


He has changed so very much...every once in a while I will look through the photos of when he was born and compare them to now...tears fill my eyes to remember such a hard, lonely and sad time...but look at where we are today? My heart is on the outside, looking up at me...cuddling with me...needing me. He is my everything. Words cannot describe the love that Josh and I have for Jaxson...yes that love a parent has for their child, but a stronger bond that we share as we all fought so hard for everything we have.





I am glad to be back and to start sharing a much happier story with you all!

Homeward Bound!

After 6 weeks in the NICU, Jaxson is coming home with us today. Thanks to all of your love and support, for keeping us strong, we were able to help Jaxson fight his fight. We have left the chest tubes and ventilators behind, and we are going home that puppy dreamland! Hehe! I am extremely proud of my son for being so strong that we were able to go home much earlier than our due date. I'll keep you posted from home and will update our blog frequently. We love you all, Thank you for all you have done for us!!!

Reflection...

A post I shared on Facebook, 11/30/2011 12:09AM

I cannot believe that only a few weeks ago, I was giving you less than half a cc/ml of milk on your tongue with a syringe while you struggled to live...tonight I am holding you, giving you a bottle, snuggling with you, loving you...joking about how fat you are...I must admit I now believe in miracles, I will ALWAYS find the good in the bad, and Dreams really can come true. ♥

Deflated..

We have been in the NICU for 5 weeks today...I am finding myself anxiously awaiting the finish line.  Jaxson weighs 5lbs and 4oz today. He is strong and growing well - more on track than before, and the doctors have increased his feedings again. We are still having problems with his digestive track, and on and off he gets some aspirates from his stomach and  he is unable to have a normal bowel movement - so we are continuing to work on this, but its very hard to see him in so much pain and uncomfortable. He is up crying, fussy and grunting continuously, and I feel helpless to console him.

The doctors have been urging us to go transport Jaxson to a hospital closer to home - but financially I don't know if we can afford the ambulance ride, and I'm not sure what the facilities will be like when we get there - I'm feeling like we're all on our own with these decisions, as the help had been so available and been so great before, I feel like we're falling through the cracks.

I am feeling slightly defeated, lonely, angry...feelings I've often felt before, and am finding more common recently. I am sure the sleep deprivation and anxiousness to get out of here are mostly to blame for this. I am getting tired of trying to make people understand what is going on and what i need, and am frustrated that I am being perceived the way that I am. I don't understand how I am so misunderstood in such a horrible situation where things shouldn't even need to be said.  No one matters to me but my son, and my focus is to get him out of the hospital. I am sorry that I am hurting feelings - I simply don't know what else to do. If I had to take other people's feelings  into account to get through the day, I'd go crazy.

Thanksgiving in the NICU

We are on day 33 in the NICU and Jaxson is continuing to do very well. He now weighs 4lbs and 14oz! We are so close to that 5lbs mark! I cannot wait for him to weigh the same as a normal baby should. Everyday he is growing and getting chubby - he looks like a different baby everyday! We are still having a very difficult time feeding him by mouth and  so he's required to take all food through his feeding tube. I am finding myself frustrated that he cannot exclusively feed from me, and there are days he does really well, and days like the past few where he doesn't except breast feeding at all. I try to not get discouraged, because in reality he's not even suppose to be here - He's suppose to be in my belly for another 5 weeks! So any amount of milk he takes from me, even a teaspoon is a miracle and should be considered as such.

Today, as we continue through another day in the NICU, it feels like any other day for us but facebook statuses/postings and greeting nurses are reminding us that it is a day to remember to be thankful. Today I am thankful for so much. I am thankful mostly for my son, watching him grow, learn and become strong. I am thankful that he is doing so well, despite his challenges - he is a strong fighter and I am thankful for that. I am thankful for Josh - my rock, my savior- my true love of my life -without him I could not do this. I am thankful for my friends, my family, my strength draws from you all, all your kindness, all your love. I am just thankful.

I wish that everyone would have the same gratitude always as they do on Thanksgiving holiday. This  past year  has not only been hard for me personally, but devastating for my family, and yet, we still find things to be thankful for. As my mother always taught me  to always count our blessings every single day, as they ALWAYS outweigh the bad. I could not imagine living any other way.

Today, we are having a very special Thanksgiving together as a mini family in the NICU. We are one of the only families here but we have some awesome nurses. Josh brought them all donuts from Dunkin Donuts to say thank you this morning - very sweet.

My dear (and AWESOME) friend Sue, brought Josh and I both a huge bag of turkey and the fixings, along with two delicious pies! We are excited to eat it! Yay for not having cafeteria food! We decided that we would eat, and then I would feed Jaxson...so sorta in a way, he'd have thanksgiving dinner with us. Even though Josh and I miss our families terribly, I cannot wait to share this story with Jaxson - our first Thanksgiving as a family.

Happy Thanksgiving from our family to yours!

Acceptance

It is now Day 30 of our NICU/CNC Journey and for about 3 weeks, Josh and I have been praying for Jaxson to poop. Yes, it can be normal for a newborn baby to have a hard time pooping, but something to remember is that a preemie who is having an issue eliminating can cause great fear into their parents and their babies medical caregivers. Very scary diseases and very scary words have been exchanged, and I think I go every diaper change with a tear in my eye - (I've finally found something that has made this Atheist pray!). However, last night helped us sleep...(ok not sleep) a little more easy. Every 2 1/2 hours I have been setting my alarm before he's due to feed, get him ready, change him and nurse..Well at 2am to my delight - A HUGE poop was starring me in the face. I was so excited even when I cleaned him all up, he pooped again...and again...until 4 diapers were wasted! Even at 2am, I was really excited to clean poop off of my hands...I doubt I'll feel quite as excited as I continue to become wrist deep in feces in the future!

This morning Jaxson had a follow-up ultrasound of his brain - which we don't know the results of but as the doctor came in - she assured us that the ultrasound was routine for 3 weeks, 6 weeks and 30 days of being in the NICU, to monitor developments. She also told us that his "intestinal issues" were doing well, and to think of all of those muscles down there as just that, muscles...they need work and practice to make perfect...and it makes sense. She put our minds at ease, and made me realize how much I need to trust my doctors and nurses here. I know that I am Jaxson's mom and I have this incredible bond and instinct - it is up to me to speak up and share my voice as he cannot. BUT, I need to not obsess of all the scary things because simply...IT IS ALL OUT OF MY CONTROL. All of it. I cannot control any sickness, any mental handicaps/retardation he may have, I cannot control his vitals, his bowels, anything...All I can control is the fact that I'm going to be a l loving parent who will provide him with a home and love forever, and make sure he has a wonderful, comfortable life no matter what. I need to sit back, take care of him the best that I can, continue to nurse him and wake up those long hours to pump (even when I don't want to) because those are the things I can control...


Although I've never been religious, my mother use to share this prayer with me, and it really has helped me get through many different situations....courage and faith as our guide.   

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

        --Reinhold Niebuhr

One Month Marks the Spot!

Today marks exactly one month for us...one month of being in the NICU, and one month of age for Jaxson! Our milestone today makes me remember how far we have come, and also how far we have left to go. The doctors told us to expect to take Jaxson home around his due date, December 23rd - so we have one more month left to go in the NICU.

Lately, I have been trying to rest/heal myself and have been driving back and forth from the NICU and home after a few hours of sleep - and trying to take care of the dogs and our home. But we have been asked by the nurses to stay here 24/7 to help Jaxson learn how to nurse. I'm not sure how I'll handle the stress of the situation and the environment by waking up every 3 hours to try to teach a premature baby how to nurse, but we will both try our very best. Josh has been a great help, and I'm really missing him when he's at work.

Lastly, As the Thanksgiving Holiday approaches us - I want to say a big thank you to all reading this - especially those who have been thinking of us, praying for us and those of you who have taken time out of your busy lives to cook us meals and deliver them to us. Words cannot express our gratitude to you, and I know I'll never be able to thank you enough or let you know how much you're kindness has gotten us through these last weeks. Not only have you LITERALLY given me strength (by feeding me!!) to go through the days, but you've given me hope, love and that emotional strength that I need to continue fighting. I know its been said many times, but I really could not do it without you. Thank you, for all you have done and continue to do for our family.

Mama Bear

I would find it very hard to believe that I am the only preemie mom who's finding herself  obsessively, crazily and wildly overprotective. Infatuated with hand washing - all while chiming " We must kill those germs, all the germs!"

Its a curious spot to be in, when I can read the faces of others around me that basically say "You're NUTS!" but, I just don't think I can make anyone understand who has not been through it. Having your first newborn baby is scary, but I am certain that having a newborn preemie is much worse. Fortunately, Josh feels the exact same way as I do, and is a fellow germ Nazi.

I think as we come further along in our journey, we will find comfort with things that seem unfathomable now, such as others holding and kissing Jaxson. Lets face it : though I would love to keep him in a safe bubble forever, we're going to have to share him with the world, and he needs to be exposed to those germs we're trying so hard to protect him from.

Until then, I suppose all I can do is accept that FOR RIGHT NOW I need to be that over protective (and you best beware) Mama Bear. I believe that the first step in getting over this will be to first acknowledge it (done) and accept it, so lets go right ahead and get onto accepting it!