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

Jackson is here!

   What a night!  So many thoughts, so many questions, so many emotions... So little sleep!  I can't believe that today is the day that I'm going to meet my son.  I've been waiting for 33 weeks to meet him and it's finally going to happen.  I'm finally going to be able to kiss the lips that I've seen on so many ultrasounds.

   Everyone started coming in and out of the room starting at 3:30am.  My nurse was the first one to come in and I received my final bag of fluids before surgery.  Even though I took a sleeping pill the night before, I was up most of the night thinking and praying.  I know that everything is going to be OK, but it's still very tough to think about how little Jackson is going to be.  He will be born at 33 weeks 1 day.  Around 5:30am is when the doctors and residents started to make their rounds.  I was moved to labor and delivery around 6:15am and was prepped for surgery.  It's amazing how fast time goes by when your anxious about something.  Hugs and kisses were given around 8:15am and I was wheeled away to the operating room... Ready or not, here he comes!

   While being wheeled to the operating room I kept telling myself that everything is going to OK and that I can do this... "You are strong!  You have to be strong!"  I've already been through this, why am I so scared?  Am I scared for me or for Jackson... both!  I can't figure out why I'm scared for myself other than the last time I did this, I was asleep.  Is this going to hurt?  Am I going to be able to feel anything?  What's going to happen if I panic?  What's going to happen if Jackson doesn't start crying? How much will he weigh?  Are his lungs developed enough for him to be able to breath on his own? I drove myself crazy during the very short ride to the operating room.

   The operating room was very small, bright, and cold.  Unlike the fetal surgery, there weren't very many people in the operating room when I arrived.  The first thing that happened was that I got a spinal. When I had the fetal surgery I was given "happy juice" before being wheeled to the operating room. This time, I wasn't given anything.  I was so scared.  I hate the unknown - my anxiety level was very high.  Now that I have been through this, I know what to expect and don't think that I will be so anxious or scared if we have another baby down the road. The worst part of the spinal was getting the numbing medicine.  Just like when I got the PICC line, the numbing medicine hurt badly.  It felt like being stung by several wasps at one time in the same area.  The spinal quickly started working and my legs and feet felt very heavy.  Trying to lay down on the bed is a very interesting experience when everything below the belly button starts to fall asleep very quickly.

   I was hooked up to all of the monitors and the anesthesiologist started testing me to see how numb I was and how high the numbness went up my body.  I was able to speak with Dr. Bennett and Dr. Smith before the surgery started and they both were able to calm me down some.  Unfortunately Dr. Carroll wasn't able to make it to the delivery which made me very sad, but I completely understand why she wasn't able to be there.  Time was moving slowly at first, but then it quickly sped up.  All of a sudden they put the curtain up, Matt came in, and the doctor said "Let's get started."

   It's so strange to not be able to feel anything, but to be able to see that your body is moving with every pull and tug.  Time seemed to have slowed down again, not knowing what to expect, it felt like things were taking too long.  Then, all of a sudden, "Happy birthday Jackson!"  Jackson came out crying and crying loudly.  Dr. Bennett held him up so that I could see him through the window in the curtain.  Hearing him cry for the first time was so emotional.

  Jackson was born at 9:06am on June 11th weighing 4lbs 8oz and measuring 18 3/4in. long.  He is absolutely perfect and we are so thankful to have been chosen to be his parents.  While I wasn't able to hold Jackson, we were able to take our first family photo.  We were also able to love on him for few minutes before he was wheeled away to Children's Hospital NICU.  Watching the NICU team push him out of the operating room was very difficult for me.  I cried almost the entire time while the doctors worked on getting me closed up.  Even though I knew that he was in good hands, it was still hard to watch him be taken out of the room - away from me.  I had a completely different birth plan than what was available to me, but having Jackson was so magical.  I wish that I could have held him, I wish that he could have been able to do "kangaroo care," I wish that we could have been able to do a lot of things, but Jackson made his entrance as a healthy, screaming boy and I couldn't ask for anything more.  

   Matt was able to take me over to the Children's Hospital late that night to see Jackson.  He was in an incubator and being kept warm by a warming lamp.  I immediately started crying when I saw him again - happy tears, scared tears, tears for the unknown.  He was the most perfect baby that I have ever seen.  He was so tiny and so beautiful.  He was using a nasal cannula, but wasn't needing pure oxygen which was a great thing.  The only reason that he needed the cannula was because he was having episodes of apnea.  Apnea is very common in preemie babies because the brain is still developing.  In a way, preemie babies forget that they have to actually breath.  To them, they are still growing in the womb and only need to practice breath.  While it's very comforting to know that apnea is common, it's also very scary to witness your child stop breathing for what seems like forever.  He has only had a few episodes where the nurse had to stimulate him to get him to start breathing again. He is already making great strides with correcting himself and getting himself to take a deep breath. Hopefully he will grow out of the apnea quickly.  

   I went to visit Jackson with the thought that I wasn't going to get to hold him yet.  However, I was able to and LOVED every minute.  I knew that he was tiny, but it didn't feel like I was holding anything - he was so light.  He fit into my arms perfectly.  I went from being so scared of hurting him to my mommy instincts kicking in.  I wanted to hold him all night, I wanted to kiss him continually, I didn't want to leave his side.

   While I haven't seen the incisions in person, the nurse did tell me that all three of them had held beautifully.  The one on his right side is still open a little bit, but it shouldn't have any problems with healing completely now that he is out of the womb.  I am torn on wanting to see the incisions.  I know that they are there, I know what we went through to help Jackson, but actually seeing the incisions will make all of spina bifida stuff more real.  What a dumb statement... Of course it's real, but I'm hoping you understand what I mean.

   Jackson's clubbed feet were by far worse in person than what I imagined.  The right foot is turned in a lot more than his left.  I immediately started to pray and hope that he wasn't in pain from his feet.  I didn't see any movement in his ankles or feet, but there's still a possibility that he may end up having movement and feeling - it's still a wait a see.  While we didn't see any movement in his ankles or feet, he was moving his legs like crazy.  We were told that his hips are both located which is a great thing. We will speak with the orthopedics soon to discuss casting and find out what the process is going to be and how many casts they think he may need.

   It's definitely hard to leave Jackson at the Children's Hospital and make the 1/4 mile walk to my room at the main hospital, but we both need time to heal.  As long as someone will wheel me over to his room, I will be visiting Jackson every day for as long as possible.  Matt and I are completely in love with Jackson.  He amazed us while he was growing in womb and has already started to amaze us outside of the womb.

Crystal

  

Update from hospital #4

   We made it to 33 weeks!  One week past our goal of 32 and 10 weeks post-op.  Where has the time gone?  How is it possible that it's already been 10 weeks since Jackson and I had the surgery?  We had our reevaluation this morning to check on my amniotic fluid level.  I went in with hopes of going home, but what I got was a complete shock.

   My fluid level has decreased since Monday.  On Monday I was sitting at an 8.5 and today I was at 6.4.  That is quite a decrease in one day.  I knew instantly that I wasn't going to be going home today.  My heart sank and I became very frustrated.  I just don't understand how my fluid level not only dropped, but dropped a lot in one day when I was still receiving IV fluids and drinking water like a fish.

   Jackson of course looked amazing on the ultrasound.  He had the hiccups, opened and closed his eyes, and was practice breathing the entire time.  He is still in the breech position, but was laying in a way that Alicia could get some great pictures of him.  Finally!  His legs were still in the way a little bit, but for the most part, we got the best 3D images thus far.  My sweet boy has chubby cheeks and the sweetest little lips.  :)

   We were sent back over to the hospital after the ultrasound to wait on Dr. Bennett to get out of a meeting.  While we were waiting I got the rest of my IV fluids and my mind began working a mile a minute.  What would Dr. Bennett say?  Was I still going to be able to go home?  What's the plan of action?  Question after question, but nothing prepared me for what was going to actually be said.

   Dr. Bennett explained that my placenta shows more signs of aging than the other day.  There are more "florets" that have formed and more calcification around the edges.  I was given three options: have Jackson tomorrow, have him on Friday, or possibly have him on Monday.  Having Jackson as early as tomorrow never even crossed by mind this morning.  To say that I was shocked and blindsided was an understatement.  So many questions raced through my head, but I couldn't make myself ask them.  I couldn't get my thoughts together.

   Dr. Bennett and I discussed the three options that were presented.  She explained that while we could try and wait til Monday, she felt that she would end up coming in on Saturday or Sunday and end up having to do an emergency c-section.  She truly felt that my placenta wouldn't hold out that long.  That left us with the option of either tomorrow or Friday.  She feels that it would be best to have him tomorrow instead of taking the risk and waiting until Friday.  In her view, having him tomorrow is the safest option.

   I trust Dr. Bennett and Dr. Carroll completely, so with that being said, Jackson will make his arrival tomorrow (6/11/15) via c-section!  My sweet boy will be born at 33 weeks and 1 day.  I'm absolutely terrified, but excited at the same time.  Neither Dr. Bennett nor Dr. Carroll expressed any concerns with Jackson being born so early.  We know that he will be taken to the NICU over at Children's Hospital, but we don't know how long his stay will be.  I can only hope and pray that he is just as strong, if not stronger, outside of the womb as he has been inside.  I still can't believe that I'm going to be a mommy tomorrow.  I'm going to finally get to meet my super boy!

Crystal

                

Update from hospital #3

Monday:
   We were scheduled for an ultrasound this morning to check on the amniotic fluid.  I was anxious to see if my fluid level went up or not.  I prayed that it didn't go down... Please oh please don't let it have gone down.  Transport arrived at 7:15 and I was wheeled over to the Fetal Center.

   Jackson was breathing away when Ixa, the ultrasound tech, first started the ultrasound.  He was moving very well, but still didn't want to make Ixa's job easy.  :)  We saw Jackson open and close his eyes and yawn.  My amniotic fluid level measured at 8.5... didn't make the goal of 10.  To have been able to go home today, I had to have a 10 or higher.  I'm bummed, but I went in this morning thinking that it wasn't going to be 10.  I wanted to prepare myself just in case.

   Dr. Bennett came by a little bit later in the day to discuss the results and the plan of action.  Due to my fluid level not reaching a 10 I will be staying in the hospital until Wednesday and continuing with the daily IV fluid infusion.  On Wednesday we will do another ultrasound to check the fluid level again.  If the level is stable or higher then I can go home and receive the IV fluids at home.  Fingers crossed!  I would love to go home and be with my fur babies and watching a tv that has more than 5 channels. :)

   Jackson was being quite the stinker during his nonstress test today.  The test is suppose to last for about 20 minutes, but mine lasted for over an hour today due to Jackson moving and grooving the entire time.  Each time the nurse thought that he was going to stay still, he kicked the monitor and then moved away.

   Because I've been having such a hard time with IV's and have the possibility of receiving IV fluids at home, I had a PICC line inserted.  A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time.  The only thing that bothered me was the numbing medicine, other than that, I couldn't feel the PICC line being put in.
            


Tuesday:
   I woke up to my arm being sore from the PICC line.  The nurse explained that this was completely normal and should feel better in a couple of days.  Dr. Bennett came  by today to check up on Jackson and I and to let us know that we were scheduled for our reevaluation for bright and early, 7:30 (Yikes), on Wednesday.  She let me know that our new goal is 35 weeks.  We will be 33 weeks tomorrow, so Jackson has to chill out for 2 more weeks to meet that goal.  She also explained that she will be out of town next week attending a conference on fetal surgery.  While that's exciting, it makes me nervous.  All will be well... All will be well... All will be well!!!

   The home health nurse coordinator came by to discuss the plan with receiving the IV fluids at home.  From the way she was talking the only time a nurse will come to the house will be when the dressing for the PICC line needs to be changed, once a week.  Other than that, my "babysitters" will be taking care of setting up my daily infusion.  I've been watching the nurses take care of me for 8 days and it doesn't seem to be too difficult.  Matt's mom and I are supposed to meet with the coordinator again tomorrow for a more formal training.  

   When someone in the hospital tells you that they haven't slept, you should believe them.  I'm exhausted!  I wake up around 5:30 each morning to start my IV fluids, the doctors and residents start making their rounds at 6:30, breakfast comes at 8:30, nurses come check on me about every 3 hours... It's non stop!  Me going home is going to be like a vacation.

  Once again Jackson showed his stubbornness during the nonstress test, but not to the extreme as yesterday.  He kept moving away from the monitor again, but quickly settled down.  The test lasted about 40 minutes instead of 20, but he looked great. I sure hope this attitude that he has now doesn't continue when he's born... Oh boy!  :)