4th month, 9/11 - 10/11

     Better late than never, right?  Here we go, another month has come and passed.  We've had a relatively quiet month, but Jackson has done a lot of growing in the sense of size, personality, and abilities.  He is currently weighing in at 13lbs 5oz and has become quite the talker.  I even like to think that he sings in his own Jackson way at night when gets his bath.  I know I've said it before and I know that this won't be the last time that I say it, but he amazes Matt and I more and more each and every day.  He is so strong, alert, and just outright cute.

   If you didn't see my post on Facebook, I am officially a stay at home mom.  I am so thankful that we are financially able for me to be able to stay home with Jackson.  Matt and I discussed it a lot and tried to really get things in order before making the decision.  I want to say that the decision wasn't easy to make, but that isn't completely true.  Making the decision to stay home with Jackson was the easiest decision I've ever made.  He is my number one priority.  The decision of going back to work was going to be the hard one to make.  I know that a lot of mommies struggle with going back to work, but for me it was even worse.  We've been through so much and it took so much to get him here safely that I just couldn't fathom leaving him.  While I may not be able to stay home for an extended amount of time, I'm going to enjoy each and every moment that I have.  Our days are full of playing, talking, reading, singing, and dancing.  I can't imagine anything better!

 

















   Jackson has officially found both of his hands and is loving them at every moment possible.  I'm trying to get him to still take a paci since that will be easier to take away down the road, but he prefers his hands.  Hopefully when the time comes we won't struggle to get him to stop sucking on his fingers/thumb.  The sound he makes when he sucks on his fingers/thumb is priceless and he gets so excited about it.  His newest thing is sticking his fingers far enough in his mouth to where he will gag.  Yuck!

 
















   If looks could melt someone into a puddle of love, his smile totally melts me and make my heart grow bigger and bigger.  I can be half asleep and ready to cry for one reason or another, but the second I look at him and he gives me one of his sly, toothless grins, it changes my mood completely and perks me up.  He's my reason for everything.  He's my everything.  Becoming his mom was the best thing that has ever happened to me and I know that Matt would agree that becoming his dad was the best thing to ever happen to him.  Who knew you could love someone so much that it literally hurts, but in a good way?

   Anyone else's kiddo extremely snotty (congested) sounding all of the time?  I've taken Jackson to the doctor on several occasions because of him sounding congested, but the doctor keeps contributing it to reflux.  It's gotten so bad that it's starting to keep him up and/or waking him up due to coughing. I'm starting to think that I need to take him to a specialist and try to get to the bottom of this.  If it is just reflux then there has to be a solution for it, right?

   Jackson had his urodynamic test done on September 17th and I of course was a nervous wreck.  Children with spina bifida or other neurologic abnormalities often have problems with the urinary system.  Some have trouble controlling urination (incontinence) where the bladder is unable to empty when it is full while others may empty only partially.  Besides causing urine leakage, bladder problems can also cause urine infections and potential kidney damage.  The urodynamics test is used to assess how well the bladder and urethral sphincter are doing their jobs of collecting, holding and releasing urine.

   A CMG test is used to assess how the bladder behaves while urine is stored and while urine is passed. The test includes measurement of bladder pressure and muscle activity. A VCMG is similar to a CMG, but incorporates an x-ray of the bladder to provide a state-of-the-art diagnostic test.  One electrode was placed on the hip and two electrodes in the buttocks area.  The electrodes measured abdominal muscle activity while Jackson was voiding.   A small catheter was placed in the rectum
to measure the pressure in the abdomen and then a small catheter was placed in the bladder to measure the pressure in the bladder.  Any urine in the bladder was drained and a urine specimen was done to check if there was any bacteria in the urine which came back clean.  The bladder was then filled with a blue-colored saline solution and bladder pressures and muscle activity were measured and watched closely until Jackson needed to void again.

   After the test the urologist came in to discuss the findings.  As far as she was concerned, the test couldn't have gone any better.  His bladder is holding pressure and releasing urine like it should.  There is no sign of pressure being put on the kidneys which is great news!  Overall she was very pleased with the results and told us that she would conduct the test again in a year.  However, we will see her again in November when we go for our second spina bifida clinic should any concerns arise.

   Jackson had his tenotomy done on the 9th.  The Achilles tenotomy is an integral part of Ponseti management of clubfoot. Tenotomy is necessary because the Achilles tendon, unlike the ligaments of the foot, is made up of thick, non-stretchable fibres. After the tenotomy the foot is placed in a final cast in an over-corrected position of maximal abduction and dorsiflexion. The tendon re-grows in this lengthened position, allowing the range of motion needed at the ankle joint.  The procedure is very minor and rarely requires anything more than just a small line of surgical glue. After the procedure Jackson was put into soft casts for hopefully the last time. He will wear this set of casts for 3 weeks straight. After 3 weeks, Dr. Martus will check his healing and Jackson will be fitted for his first set of knee, ankle, foot orthosis (KAFOs).

   I took Jackson to the Zoo for the first time and Matt's mom, our niece, and Matt's stepbrother joined us.  It was a beautiful day, but I think we went at a bad time because most of the animals were not out.  I'm not sure if they were put up for lunch or what was going on, but it was kind of disappointing.  Jackson didn't seem to mind though because he slept most of the time.  Haha!  My plan is to buy a membership so we can go whenever we would like.  It gives me a reason to get us out of the house and who doesn't love the zoo?  :)  I look forward to when he is older and I can take him to the Discovery Center and other similar places for him to play and learn.  Poor kid doesn't stand a chance with having a teacher as a mommy.

 

 















   We have finally started sleeping through the night!  Whoo hoo!  Jackson will sleep for about 7-8 hours before waking up and wanting to eat again.  We'll get up and I'll change him and feed him and then he'll go back to sleep for another 3-4 hours.  It's been awesome!  However, the first week or so was pretty rough on me since he was skipping meals.  I would wake up in pretty serious pain, but thankfully that has pretty much worked itself out - sorta!  When does the milk factory get the memo that they can slow down production?

   I don't know where he learned it from, but Jackson has become the biggest flirt.  I first noticed him flirting with the lady that changes his casts each week.  He would start “talking” to her and anytime she would respond he would turn his head to the side to try and hide it and then he would let out a little giggle and start “talking” again.  He is quite the ladies man already… Boy oh boy am I in trouble!

   Speaking of “talking,” Jackson always has something to say.  We’ve gone from short little “ah boo” sounds to him getting really excited about something and getting very loud.  He tries to imitate sounds and has even started blowing air through his lips to make them move.  Every once in a while he will make the mouth fart noise and it always cracks us up.

   We officially have a kiddo that wants to sit up all the time.  The only time he wants to lay back is when he’s eating, otherwise he wants to be up and looking around.  The only problem is that he still doesn’t have great head control so we have to make sure that we have a hand resting on his chest to catch his head in case it falls forward.  He’s gotten really good at not letting it fall backwards.  He is so inquisitive that he even wants to face outward when being worn, but I’m not ready for that since he doesn’t have great head control.  One day soon though!  Since he likes to sit up so much I guess it’s time to get him a Sit-me-up or a Bumbo seat.    

   We're still working on tummy time and getting him to not prefer one side to the other.  I work with him every day and physical therapy comes once a week to work with him.  He is scheduled for an hour a week, but he gets pretty tired 30 – 45 minutes in so she’s working on stamina as well.  He’s gotten much better at not staying on his right side for too long, but PT said that she can still see a difference in his range of motion and feel that the left side is tighter.  She gave me a few more exercises to work with him and get him stretched out more.  The good news is that it’s getting better!  One day at a time, one stretch at a time.  Once Jackson gets his casts off, then she’ll start incorporating his legs into the PT sessions!  

   PT thinks that once Jackson gets his casts off that he should start rolling fairly quickly.  We practice rolling with him each day by holding his hand and gently pulling him to whichever side we want him to roll to.  When we first started working on rolling he let us do all of the work, but now he does the work and lets the weight of the casts help – stinker!  Next thing is to work on getting him to roll from tummy to back, but for now we’re going to focus on just back to tummy until he can get that mastered.  We’re on his schedule and he’ll let us know when he’s ready.  

   I apologize for it taking me so long to post this months update.  With it having been a slow/quiet month I'm not sure how I fell so far behind.  I'm already up to date for month 5, so hopefully I won't be late. :)

Crystal

3rd month, 8/11 - 9/11

   Really?  Say it ain't so!  Another month has come and gone, why oh why is time moving so quickly.  I've asked nicely for time to slow down, but it appears that my request is being ignored.  It's been a pretty big month for Jackson so this post is going to be pretty long and full of pictures.  Ready?

Jackson weighs 10lbs and is 22 (almost 23) inches long!

   Jackson is starting to stay awake longer during the day.  Wish I could say that him staying awake longer during the day means that he sleeps longer at night.  Unfortunately, he is still getting up every 3-4 hours to eat.  Every once in awhile he will sleep for 5 hours and it is WONDERFUL!  However, every time that he has slept for 5 hours, I wake up in a panic and checking on him.

   I've gotten into this whole babywearing thing and absolutely love wearing Jackson and he seems to love it as well.  He can be fussy one minute and I can wrap him up and he will either fall asleep or stop fussing - It's like magic! :)  I don't know how people go grocery shopping without wearing their little kiddos.  I know that I wouldn't have been able to without putting Jackson in my Ergo carrier.  Buying the Ergo and Boba wrap was definitely money well spent.  However, I now have this new obsession with wanting to buy more wraps because there are so many beautiful ones there.  Oops!  Learning how to use the carriers with his casts definitely took some time to figure out, but now I can get him in either one pretty quickly which is a good thing when he is being a stinker and screaming.

   We're starting to get into a routine with baths.  We didn't have a baby bathtub at first, but I quickly decided that we needed one after the first few times of giving him a bath the first month.  Jackson is a huge wiggle worm and it made me so nervous to have him on the counter.  Now with the bathtub, he can wiggle all he wants and I feel better about it.  Jackson LOVES the bath!  He just soaks it all in and looks around during the entire time.

   There is nothing sweeter than baby smiles and laughs!  Jackson smiles all the time while he is asleep and just recently started smiling socially while he is awake.  Jackson laughing is the cutest sound I've ever heard and I keep trying to get it on video.  I even got him to laugh one time when we were playing "patty cake."

   We've been working on tummy time to try and strengthen his muscles.  When he lays on someone, Jackson will lift and turn his head.  However, when he is on his tummy, he just lays there and most of the time falls asleep.  It's a constant "Wake up, wake up, wake up."  While most of time he tries to fall asleep, he also has times when he moves his head from side to side and kicks his legs like crazy.

    8/19: Jackson had his two month check-up.  Jackson weighed in at 8lbs 5oz and measured 21inches long.  According to his growth chart he is proportionate and is gaining at a steady rate, so the doctor was happy.  We discussed his reflex and I told her about the tummy cocktail that we do each morning.  We also talked about our concern with Jackson turning his lower half of his body to one side.  Our concern is the future implications of him possibly having scoliosis.  She agreed with our concern and told me to speak with the orthopedic about it.  She explained that he would have more information and felt confident that he wouldn't let his back get that bad before intervening.

   With the two month check-up comes the two month shots. :(  Matt and I decided that we didn't want Jackson to receive all of his shots at one time.  We wanted him to get one shot and then give it some time to work through his system and see if he has a reaction before he gets the next one.  Jackson ended up getting the BIG shot - DTAP first.  He did a great job!  He cried for a split second and then acted like nothing happened.  Meanwhile, I was in the corner crying.  Thank goodness my mother in law went with me.  Why is all the stuff that our children go through so much more difficult for us than them?  I kept a close eye on him after he got the shot.  He didn't have any side effects and didn't even appear to have any pain in the area where he received the shot.

   Jackson got "shorty" casts since he had to get shots.  They were so cute! :)

   8/24: We had our first spina bifida clinic.  Matt and I didn't have any idea as to what the day would consist of other than us being at Vanderbilt all day long and being able to see all of the doctors that work with spina bifida.  We were put in a room and every doctor, social worker, physical therapist, etc. came to us.  We never had to leave the room.  We didn't have to go from doctor to doctor, they came to us.  That was nice, but it did get pretty hard after being in the same room for so long.  

   Jackson's first appointment was getting his hips and head ultrasound done. Then he had to get an x-ray of his spine.  Other than him fussing because he was hungry, he did great! Each time that he's had an ultrasound done, I often wonder what he is thinking about.  What does he think is going on?  What are his thoughts of the lady putting jelly on his head and then pushing down on it with some type of wand thing?  Does it bother him?  I guess we won't have answers to those questions until he's older.

   The orthopedic doctor came in and discussed the findings of the hip ultrasound.  Originally the orthopedic was concerned that one or possibly both of Jackson's hips were dislocated.  There is a high incidence of hip instability in children with spina bifida as a result of muscle imbalance around the hip joint. Twenty-five to fifty percent of newborns with high to mid-lumbar lesions have subluxed or dislocated hips. In the early childhood years, at least 25% more of these children will have hips that become unstable. This tendency toward hip instability is explained by problems in the nerves in the lumbar and sacral spine that control the muscles involved in moving the hip.  Jackson was at a risk for dislocated hips due to his lesion level (lumbar-3).  However, the doctor explained that while both hips are tight, neither hip is dislocated.     

   After discussing Jackson's hips the doctor proceeded to discuss his spine.  Jackson has a habit of laying curved to one side.  Matt and I were concerned about his spine becoming curved and possibly ending up with scoliosis.  According to the doctor Jackson's spine looks fine and he doesn't have any concerns with it at this time.

   While the orthopedic wasn't concerned with Jackson's hips or spine, he did decide that Jackson needed to start casting again for his clubbed feet.  We will be doing another round of serial casting to see how his feet do and then will go from there.  The plan is to have an Achilles tenotomy when he is big enough.  During this quick procedure, the doctor will use a very thin instrument to cut the tendon. The cut is very small and does not require stitches. A new cast will be applied to the leg to protect the tendon as it heals. This usually takes about 3 weeks. By the time the cast is removed, the Achilles tendon has regrown to a proper, longer length, and the clubfoot has been fully corrected.

   Nurse practitioner Haley Vance (neurology) came in to discuss Jackson's head ultrasound.  His ventricles have rounded a little bit,but don't appear to have increased in fluid.  She still isn't concerned with them and is pleased with how everything looked.  We will go back for another ultrasound in 6-8 weeks for a check-up, but for right now, we're in the clear and he still doesn't need a shunt! :)

   Physical therapy and occupational therapy came in to check Jackson out and see how he was progressing.  They gave us some tips and tools to use at home to get him moving more.  We need to start working on turning Jackson's head to the left instead of the right.  The right side of his head has started to develop a flat spot and his neck is tight when you try to turn it to the left.  After PT showed us some stretches I could tell that his neck had loosened up some.  Since he was put back into his casts we won't have to work on stretching his feet, so we can focus on his upper half for the time being.  All in all they were pleased with him and even got excited to see him bringing his hands together.

   The last doctor that we saw was urology.  When Jackson was first born urology conducted a test on him called a urodynamic test.  Urodynamic testing or Urodynamics is a study that assesses how the bladder and urethra are performing their job of storing and releasing urine.  Children who have Spina Bifida usually have damage to the nerves that control bowel and bladder function. Early evaluation of the kidneys and bladder is very important in order to prevent kidney damage.  The first urodynamic test that was done when he was in the NICU showed that he was emptying his bladder completely and we didn't need to catheterize him.  Jackson needs to have the test done again to ensure that he is still emptying completely.  If the test shows that he is not, we will have to start catheterizing him and he may possibly need medicine to help with his bladder.  Fingers crossed that the test comes out alright.  The thought of having to catheterize him terrifies me.

  Worn out!

   We took our first family road trip.  We went to see my family in IL over Labor Day weekend.  The drive normally takes us 5 hours give or take, but with Jackson, we ended up having to make extra stops to feed and change him.  He did a great job on the car ride.  He didn't really get fussy until we were pretty close to being to our destination.  We spent Saturday evening with my parents, grandma, and my mom's cousin and her husband.  My grandma absolutely loved Jackson and even got upset when I or my mom tried to take him from her so that she could get situated or if he needed to be changed.  Seeing my grandma with Jackson made my heart sing.

   On Sunday we all went over to my aunt's house for a "Pampers party."  We got several packages of diapers and it couldn't have happened at a better time.  Jackson being the stinker that he is decided to outgrow his newborn diapers on the way to IL... I kid you not!  I brought mainly newborn diapers and few size ones just in case and the stinker ended up having a blow out.  All of my cousins came and their kiddos except Nikki, she was running a fever, and Melanie's stepkids.  It was so great to see everyone and for all of them to finally meet Jackson.  Jackson loved all of the attention and lovin' that he got.  He is such a good baby and doesn't seem to mind being passed around.  Everyone talked about how Jackson was the only boy and how lucky he was to be surrounded by so many women. Jackson is going to be quite the ladies man. :)  

      Four generations: My mom, me, my grandma, and Jackson

   Overall we had a pretty busy month and Jackson made great strides in reaching some of his milestones.  The doctors are still really happy with how he is doing and Matt and I are so thankful that he's healthy.  He's starting to get the best personality and I love everyday and minute that I get to spend with him.  Don't get me wrong, I am one stressed out mommy at times, but it's all worth it.  

  

  

What did you just say?

   I have a new word for you: intussuception.  Raise your hand if you know this word... Anyone?  Anyone?  Unless you work in the health care industry, you're probably like me and have no clue what that word means.

   Intussuception, or intuss for short according to the nurses, is considered a serious side effect of the Rotavirus vaccine.  Intuss is a condition in which the small bowel folds back inside another part of the intestine, causing a bowel obstruction.

   Matt and I decided to not have Jackson receive all of his vaccines at one time.  Instead, Jackson got his DTAP shot and then we waited a week for him to get the next one of two shots.  Since Jackson got his casts back on, he wasn't able to get the next shot when we went back to the pediatrician, but we did decide for him to go ahead and get the Rotavirus vaccine.  He received this vaccine on Wednesday.

   Jackson was fine all day following the vaccine, but then he became very congested later that night.  It was so bad that I ended up sleeping on the couch so that he could be elevated some in his rock n' play while sleeping.  His congestion didn't improve throughout the night so I was planning on going to get him some nose drops to try and help.  Right as I was getting ready so we could leave, Jackson got a funny look on his face and then threw up more than I knew was possible for someone so small.

   While I was cleaning up the first mess, he got sick again.  I called his pediatrician to find out what could be done.  While on the phone with nurse, Jackson ended up gagging pretty badly.  The nurse heard him and said for him to come in to get checked out.

   I explained to the doctor what had been going on and she decided to test his stool.  She came back in and said that there was a trace amount of blood in his stool and explained that he could have a virus, but needed to rule out a condition called intussuception.    

   The doctor explained that she wanted to rule out intuss because with Jackson's medical history and him throwing up like he was, she didn't want to risk it.  I went from "Are you kidding me" to "This has to be a joke" to finally "Oh my gosh, please be ok."

   The doctor sent us to Vandy to have an x-ray and ultrasound done of Jackson's stomach and intestines.  He did a great during the x-ray, but became very fussy during the ultrasound which ended up taking longer than it should have due to him squirming so much. He was so hungry, but couldn't keep anything down.  Every time he ate, he would just throw it back it.  It broke my heart.

   Shortly after getting back to our room, Matt arrived.  After a little bit of time, the doctor came in with the results of the x-ray and ultrasound.  There was no sign of intussuception - Whew!  While his stomach and intestines looked fine, the doctor was concerned with the fact that Jackson wasn't keeping food down.  Because of that, Jackson was admitted for overnight observation.

So sleepy!  

   He wasn't showing any signs of dehydration at the time of being admitted so he didn't need an IV.  The plan was for him to be observed overnight and as long as he started to keep his food down and didn't become dehydrated, we would be able to go home the next day.  We weren't sure if Jackson would be admitted or not, but thankfully Matt thought ahead and packed a small bag of some of the things we would need just in case.

   Since he was just being observed, the nurse didn't come in very much through the night.  The care partner came in every couple of hours to check his vitals, but that was pretty much it.  We continued our every 3 hour feedings, diaper changes, and snuggles while he digested his food just like we were at home.  Jackson kept down every meal and didn't have any issues throughout the night.  The doctor that admitted him the night prior came to visit and check on him the next morning.  As far as she was concerned, we could go home.  However, Jackson had to be seen by the attending doctor before we could be discharged.  We ended up sitting around the room until 2:00!  After getting the OK from the attending doctor, we got our discharge paperwork and went home.

Ready to go!

   Jackson is still very congested, but he hasn't had any more vomiting incidents.  The biggest thing that we are fighting right now is him not sleeping.  He sleeps for a very short amount of time and then wakes up due to coughing.  Poor baby boy!  Hopefully the saline nose drops will help and help quickly not only for his sake, but for ours too.  :)      

Crystal

2nd Month, 7/11 - 8/11

   Time is moving way too fast for my liking.  I can't believe that Jackson is two months old already.  Please humor me and tell me that time will slow down.  Please tell me that I'm not going to wake up one day and he'll be starting kindergarten.  Please tell me whatever I need to hear so that I don't start crying again over how fast he's growing.  Jackson is doing amazingly and Matt and I are somewhat getting into a routine again.  I figure once the three of us are working great on the routine, Jackson will change it up for us again.  :)

   Jackson has officially found his thumb!  However, he's sucked on it maybe three times and hasn't gone back to it.  He seems to prefer his paci even over his fingers.  From what I've been told, weaning from the paci will be easier, so I guess that's a good thing.  He is becoming more alert and staying awake longer during the day.  He watches you while your talking and loves to "talk" back.  He is starting to track objects and look for whatever is making noise.  He doesn't really enjoy tummy time at first, but seems to tolerate it fine and ends up falling asleep instead of working. :)

   The fur babies are starting to come around to Jackson being here.  When Jackson starts to cry, Aubie will come and check on him.  She has become kind of protective of him and has chased Chevelle away a couple of time.  Chevelle is coming around, but not as quickly as Aubie.  He will sniff at him and check on him every once in a while, but I think he's still waiting for us to take Jackson back to the store.  :)

  Aubie checking on Jackson during tummy time

   Jackson has become quite the escape artist when it comes to his swaddle.  No matter how tightly I wrap him, he always figures out a way to get either one or both hands up and out of the swaddle.  He has earned the nickname Houdini.  :)  

Jackson showing his Houdini skills

   7/23: Jackson got his casts off after 4 weeks.  Dr. Mencio wants to take a break to do some physical therapy and to see how his feet react to not being in casts.  When I changed his diaper later the same day, his feet had turned back inward.  The left foot looks almost as bad as it did when he was born.  When I called the doctor the next morning I was informed that we are going to continue with the plan of stretching and working the feet until our next appointment.  I've already noticed that before stretching, the feet and ankles are very tight.  After, they are loose and can be moved into the "neutral" position fairly easily.  Hopefully this will be a good thing and Dr. Menico will be pleased when we go back.  Until then, Jackson and I have our routine of getting his belly full and then me working on his feet while he starts to fall back asleep.  

  Jackson showing off his feet shortly after getting the casts off

   We had our follow up appointment with the plastic surgeon.  Dr. Braun was very impressed with how well Jackson's incisions healed.  We no longer have to change out the dressings twice a day - Yay!  He took several pictures of the incisions and mentioned that he will be using them and showing them to his residents/students.  I found a picture of a mom and her child that I absolutely love.  It shows both of their scars.  I'm planning on having either Matt or his sister take the same picture for Jackson and I.  I find both of our scars to be beautiful.  I hope that he can be proud of his scar when gets older.  

   After our appointment with Dr. Braun we went across the hall to see if Dr. Bennett and Dr. Carroll were in the office.  Dr. Bennett and Emily were in and they loved on Jackson for a long time.  They both commented on how great he looked and about how much he was moving his legs around.  We also went to see one of the nurses that took care of me after the fetal surgery.  She told every nurse/doctor that walked by that he was one of the fetal surgery kiddos.  She was so proud of him and loved showing him off - sounds like Matt and I. :)  

   8/4: We had our follow up with neurosurgery.  I was full of anxiety and worried that his ventricles had increased.  Matt being the calm, cool, collective person that he is kept me calm.  Jackson had to get a head ultrasound before meeting with the doctor.  He did a great job and didn't cry at all, he was such a big boy.  We met with Haley Vance who is a nurse practitioner for Dr. Wellons.  We would have loved to have met with Dr. Wellons, but NP Vance has been in Jackson's life just as long as him so we were comfortable with her giving us the update on Jackson's head.  According to her, Jackson's ventricles increased a little bit since leaving the NICU, but not enough for it to be a concern at this time.  She classified his ventricles as being STABLE!  While this could change, we are both happy with the current results and are praying that the ventricles are still within range at our next appointment.  As with everyone else, NP Vance was very impressed with Jackson and got some lovin' time in with him during our visit.        

         Jackson in his big boy bed during the head ultrasound

   We've got some big appointments coming up and I'm not too excited about the first one.  First, Jackson will be getting his 2 month shots on the 19th.  Matt and I are planning on doing the extended schedule.  We both feel that Jackson has been through enough and we don't like the idea of him getting all of his shots at one time.  Second, Jackson has his first spina bifida clinic on the 24th.  We have no idea what to expect other than it's an all day process.  Jackson will be seeing all the specialists involved in spina bifida such as the neurosurgeon, orthopedics, and physical therapy.  He'll be getting another head ultrasound and hip ultrasound done.  I pray that his ventricles stay stable.  I also pray that his hip isn't dislocated like the orthopedic thinks it is.   

Crystal

1st Month, 6/11 - 7/11

   Do you know how exhausting it is to have a newborn?  I apologize for it taking me so long to get not only Jackson's birth story up, but also his weekly updates that are now going to become monthly updates.  With being in the hospital for my recovery, going up to the hospital daily to be with him when I was discharged, and then with him coming home, I'm just worn out.  Hopefully I will be able to keep up again now that I'm starting to get back into somewhat of a routine.

   Jackson was in the NICU for a total of 12 days.  When he was born Matt and I had no idea how long of hospital stay we were looking at for him.  We were originally told that it could be a minimum of two weeks and could last until his due date if not longer, but ultimately it was going to depend on how well he did.  Jackson was in the more intensive NICU for 5 days.  He had his own nurse that only had two patients to care for, him and a little girl.  He was carefully monitored and given the attention he needed.  He quickly became known as the rockstar of his NICU unit because he flourished so quickly.  Since he was doing so well they moved him over to a different part of the NICU, a step down unit.  He got his own room that was nicer than mine and had a nurse that was over him and three other kiddos.  In his new room parents were able to stay the night if they choose to do so.  Parents were also offered a meal tray for each meal that they were at the hospital with their little one(s).    

Jackson's door that one of his awesome nurses made for him. 

   Jackson's Bilirubin level was elevated the morning after he was born.  He ended up having to go under the phototherapy lights for a few days until his levels went down.  I knew what jaundice was, but I always thought that it turned the skin a yellow color.  In Jackson's case, his skin became tomato red. I unfortunately didn't ask enough questions about this because I knew how common jaundice was.  It only took a couple of days for his Bilirubin levels to go down.  Once the levels were down, he no longer had to be in the phototherapy lights.

   When he first got to the NICU he had an IV put in to give him fluids and to administer any medicines that he needed or may need.  Just like me, they had a hard time with the IVs so he ended up having one in each hand.  It broke our hearts to see the IVs in his hands.  They were so big on him and they were wrapped in a way that it looked like he had cardboard taped to his arms.  At first we could tell that he was struggling with the weight of all the dressings from the IV, but he quickly figured it out and began moving his arms around like crazy and hasn't stopped since!  Thankfully he didn't need the IV for too long and quickly began drinking from a bottle.

 

   He had infant sleep apnea episodes where he stopped breathing for 20 seconds and his heart rate and oxygen level would drop.  We were told by several doctors and nurses that it is very common in preterm babies due to the brain still developing.  Basically while he is sleeping he forgets to breath. To him and his brain, he is still "cooking" and only needs to practice breath like in the womb. Thankfully there were only a few episodes where the nurse had to go in and stimulate him to wake him up to breath.  All of the other times he would jerk himself awake and take a deep breath.  While we trusted and believed the nurses, it was still scary to watch Jackson stop breathing.  We were told to not stimulate him during an episode.  He and his brain had to "work it out."  The only time we or the nurses would stimulate him was if it lasted longer than 20 seconds or if his heart rate or oxygen level went too low.  Each time he had an episode, our "going home clock" started back over with 5 more days in the hospital.  When we found out that we were being discharged, Matt went and bought a breathing/movement monitor that Jackson wears on his diaper.  It will vibrate after 15 seconds of no movement to stimulate him and then an alarm will go off after 20 seconds to alert us.  It has been wonderful and has definitely eased our minds.

Ready to go home!

   Jackson has great movement in his hips and knees.  As of right now we aren't seeing any movement in his ankles or feet.  While it's hard to realize that he probably won't have any movement below his ankles, we knew that it was a big possibility due to his lesion level.  Physical therapy came in and started his sessions.  He absolutely loved it!  Every time that they were working on his legs and feet he stayed still and didn't make a sound.  I see massages in his future. :)

   He is eating every 3 hours on the dot!  Exhaustion set in a week after getting home.  I never knew someone could be so tired and still function.  I am a complete zombie mommy.  No matter how tired I am though, seeing his face and feeding him makes me the happiest person on this planet.  He has steadily gained weight.  When he came home from the NICU he weighed 4lbs 9oz and at his first pediatrician appointment he weighed almost 5lbs.  We're having a little bit of a reflux issue and it's scared us a few times.  The worst time was when he spit up some and then got choked up and couldn't breath.  Thankfully with me hitting his back, scrapping some of the extra saliva out of his mouth, and him working through it, he was OK.  Hopefully the reflux doesn't continue too long.  I can't stand seeing him choke.

   He got his first set of casts on the day that we discharged from the hospital.  I'm pretty sure that it bothered me more than him when he got them put on.  He whined a little bit while they were being put on, but he didn't cry at all.  I think it bothered him that he wasn't able to move his legs like wanted to.  The plan is to replace the casts each week.  So far he's gone through three sets and each week we are more amazed at how good his feet look.  The orthopedic said that we are going to take a break soon to let his legs air out and to start some physical therapy.

   I know that this is a super long post, but I wanted to let you all know how he is doing.  Like I said, I'm sorry that it's taken me so long to get this posted.  I'm going to try really hard to keep up to date and not get so far behind.  :)  Cuteness overload with pictures...

Crystal