Strep Throat

Strep throat is no friend of the Johnsons'.  Apparently the awesome playroom I shared pictures of Tripp playing in sent a little friend home with us..  Tuesday evening Tripp started running a low grade fever and by Wednesday evening it was a nice 102.8.  So we called and got him in with the pediatrician the following morning and we he woke up that morning, no fever. Typical, right?! Well about an hour after Josh got home with him, the fever came back.  So I called the ped. to let her know and we started him on an antibiotic that afternoon.  Late that night, his fever spiked to 103.  I went to rock him in the living room and he vomited like the exorcist.. he scared the mess out of me and Josh b/c we have never seen him like this before.  It was pretty much awful.  Luckily, his body reacts to Tylenol fairly quickly.  So we gave him a dose after rinsing him off in a luke warm bath.  It came down about 30 min later..  So we all went to bed.. and the next morning, the fever reared its ugly head again at 103.3 and again, vomiting came with it.  During all this, his fluid intake has been minimal so at this point we're starting to worry about him getting dehydrated.  So we went back to the ped office to try to check his urine. While we were there, she checked him all over again and this time his throat was red. So she did a rapid stress test and it came back positive... it was faint, but that was because he had received 2 doses of his antibiotic.  Thank goodness it was positive b/c it saved the poor guy from having to get cathed.  So we decided to leave him on the antibiotic so it covered the strep and whatever else his li'l body was fighting off.   He hasn't run a fever since Friday night, but he's still being pretty picky about what/when he was wants to eat or drink.  Rice cereal, yogurt, and gerber fruit puffs are the only things on his menu right now.  He went back for a re-check today and everything is looking good!  However, he got spoiled having me or Daddy home for 4 days in a row and pouted with his sitter most of the day.  He wouldn't take his snack or drink from her, but if she sat it on the table or carpet and walked away.. he would go straight to it.  If his little attitude continues to grow with him, we are in for some serious trouble when he becomes a hormonal moody teenager! :o(  But thank the Lord, he's bouncing back pretty quickly from this! 

Tubes

Tripp got tubes placed in his ears this morning at Wolfson's Childrens Hospital in Jacksonville.  So far, this is the quickest surgical procedure he has had. I think Josh and I were in the waiting room for maybe 15-20 minutes before they came to take us back to the recovery area.  Tripp did really well! Since the procedure was so quick, he was only under for a short period. He didn't have to get an IV or be intubated, so recovery was smooth unlike other times.  It was nice to see him awake when they brought him back and not still groggy, thrashing, crying & desatting.  I'm so glad we went ahead with this and didn't wait any longer.  Dr. Sprecher said there was fluid in both ears and it was thick like glue. :o(   We follow up with him in a month and Tripp will have a hearing test done that day.  We can already tell a difference b/c he's reacting to really loud noises slightly different now and has been babbling non stop since we got him home! :o)    Thanks for checking in on him and for all the prayers that are lifted up for him!   Here are some pictures of him playing in the waiting room this morning! 

Forgot something!!

Guess I could've given you a weight and height update, huh?!?!


Ready...?     His weight is up to 21lbs 9oz and he is 31.25in tall!!!   He's growing out of 12mth clothing and into 18mth clothing.  Carter's here I come!! LOL  I LOVE there clothes!! I seriously could blow a large sum of money in there in one day!  And I would never hear the end of it from the hubby bc Tripp would have clothes and we wouldn't...hahahahah...

Appt updates.. several..

Things have been pretty hectic in the Johnson household as of late.  Since Tripp started walking about 2 months ago we have been chasing him nonstop! :o)  He's also had several appointments as well.. so I'm just going to list them out.

- Orthopedics:  We took him to see Dr. Mazur at Nemours for a 6 mth follow up with new xrays of his spine.  The first set didn't look too hot because they took them with Tripp laying down, which is how we normally do it. Once Dr. Mazur came in and saw that Tripp was walking, we had to do a new series with him standing up.  These came back and looked much much better! There was hardly any curve where the misformed vertebra were.  While Tripp has been growing bigger so have the vertebra and we got a new diagnosis for him. Instead of having "hemivetbra", basically the vertebra are broken halves that grow independent of each other and have a good chance requiring surgery, Tripp has "butterfly vertbra".  Butterfly vertrebra are completely intact but basically look like a butterfly and these almost never require surgery!  How awesome is that?! But if for some reason Tripp's did cause a curvature in his back, surgery is the only option because of the location of the misformed verterbrae.  They are in the upper thoracic are of his spine.  We are going back in March to meet with a spinal surgeon to get established so he can monitor Tripp's spine as he grows to make sure his spinal chord isn't being pinched.  

-Opthamology:  At the beginning of January, Josh took Tripp for an eye exam. Much to our surprise, Tripp is still very far sighted.  His eyes had improved some but not enough.  Dr. Khuddus didn't want to put him in glasses again because he refuses to wear them. So we are going to wait a year, take him back next January for another exam and go from there. 

-ENT:  Tripp has been battling ear infections since the Fall, so he is getting tubes in his ears this coming Monday, Feb. 6th.  We'll follow up with the doctor a month later for a hearing test.  I'm hoping he'll start trying to say more words once he gets all of the fluid out of his ears.  He has a very limited vocabulary right now. Momma, Dad, Ba (bottle or ball), no, mine, stop, bye bye... I think that's about it.  And we talk and read to him alllllll the time. I have a feeling speech therapy will be in our future! :o)

-Ped Surgery:  This was a bittersweet appointment for me.  We took Tripp in for a 6 mth follow up for his esophageal atresia.  Since he has been doing so well and having no choking issues from a stricture in the scar tissue of his esophagus, Dr. Islam discharged us from the clinic!  This is really really great! But made me kind of sad because Dr. Islam has been his doctor since he was 3 weeks old.  He placed Tripp's g-tube at 3 weeks so he could get my breastmilk and thrive.  He fixed my baby's broken esophagus so that he could live a happy normal lifestyle!! And when Tripp had complications from the surgery, he's the one who would go by to check on him multiple times during the day and call in the middle of night to check on him.  I'll never be able to thank him enough for what he did for my son!  I looked forward to our visits with him so he could see how much progress Tripp was making!   I was also very sad because his fellow, Dr Dickey had moved away because she completed her fellowship.  She was actually the first person we met on the surgical team and we loved her too!  Dr. Islam was kind enough to take a picture of Tripp and text it to her! I hope it brightened her day! :o)

On the therapy forefront, we have our annual IFSP review coming up to see if Tripp still qualifies for his therapies.  I'm pretty sure he does b/c he's on a 12-14 mth level for most things.  His therapist did her review last week to get ready for it and there were a few things Tripp hadn't started doing yet.. Like, standing up without pulling up on something, crouching down to pick up toy and standing up without falling over, walking backwards..    Well, apparently Mr. Man heard the laundry list of things he wasn't doing and started doing all of them about 2 days later.. LOL  Unfortunately, she can't change her evaluation but she can add some additional notes to it. :o)

So, that's pretty much it..  I'll let y'all know how our ear tube adventure goes! :o)

Crainialfacial Annual Appt

Today was Tripp's annual appointment at the Crainialfacial Clinic and it went surprisingly well. I was nervous about how he would respond to 8 teams of dr's coming in to look at him and check his mouth out but he handled it like a rockstar! He fell asleep about 30 minutes after we got there, so he slept through 3 of the teams. And only the dentist looked in his mouth this time so I was nervous for nothing. :)  All of the dr's were very pleased with his progress. Developmentally for speech, he is at 12-14mth level which is right on track for his adjusted age.

Something interesting we found out is the Genetecist we saw back in February stated in his assessment that he would not classify Tripp as having VACTERL or VATER. The reason being that these associations typically involve renal and anal abnormalities and Tripp has neither of those! He also says the cause for Tripp's problems are unknown. So whatever the reason, God blessed us with unique fearless stubborn little boy who we wouldn't trade for the world!! :)

Fall Family Fun Day 2011

This past Saturday, we took Tripp to Roger's Farm in Alachua, FL.. Every Fall they set up a pumpkin match with a mini-carnival and corn mazes. With winter just around the corner, this is probably one of last outings together as a family until the spring. Enjoy the pictures :)

The boy hates sitting on grass, dirt and apparently hay..

He LOVED the pony ride!!

He was tired of pictures at this point..lol

August 2nd

Check out our ticker there to the right.. do you see it?  Adjusted age: 1 year, 2 days!  So I'm a little late, but Tuesday was my actual due date and the day Tripp should have at least been born near.  Surprisingly, this date didn't upset me this year.  I think I had more mixed feeling on his birthday than I did my due date.  Plus, with everything going on I haven't had much time to think about it. God takes care of us, even when we don't realize it. I'm so thankful for this precious miracle He blessed us with.  And my heart aches for those precious angels we met in the NICU that didn't make it home.. and also those I've never actually met, but know their stories.  Whenever I think about them, I hold Tripp a little longer and closer and say a quick prayer for those Momma's who will never get to have that.  I can't imagine the hole that must leave in your heart.  I don't know how I got to that  from where this post started, but its just something I wanted to say.  

He's a picture of our big boy!

Playing in cousin Kolby's Fire Truck :)

Time flies when you're having fun!

Tripp has been doing lots of new things lately! Its been really exciting! 

• He is eating more table foods.. He LOVES Nilla Wafers!
• Making a little progress with sippy cups!
• He started sitting up on his own last Thursday and started really crawling on Sunday. Not his goofy army crawl, but real honest to goodness crawling!!
• Playing peek-a-boo, covering his face himself!

I know I said "lots" and there's only 4 things on the list, but in the preemie world 4 is alot especially when there are major milestones involved.  :o)

We've also been really busy pretty much every weekend.. My dad visited the weekend before last, last weekend we made a day trip up to Savannah for our niece, Cloie's 1st birthday (she's Tripp's Birthday buddy, I'll explain), Monday he had minor outpatient surgery to close his g-tube hole, and this weekend we have the NICU Reunion at Shands UF in the afternoon, then a friend's wedding that evening.

The trip to Savannah went really well.. It was great to see Josh's brother and his family.  Although Tripp wasn't acting like himself that day. Normally when he's around kids, he wants to get down to be in the middle of everything and check the kids out.  But Saturday, he was being really clingy and anti-social. Only thing I could figure is his teeth must hsve been bothering him.  

The surgery on Monday went great!  He had no problems while under general anesthesia and his pain has been pretty minimal.  Dr. Islam and Dr. Shaw did an amazing job on the incision! We think its going to look much better once it heals than it would've prior to surgery. Everything, happens for a reason, right?!

I'm so stinkin' excited for our NICU's Reunion on Saturday.  I cannot wait to see the nurses and moms we met during our stay and also those whom either came before or after us.  Once we got home, I honestly did not EVER want to go back.  But now that I've gotten over the roller coaster ride, I miss our family at our home away from home terribly!  The nurses and doctors were so amazing and patient with us! At one point, I think we were one of the noisiest families in there.. we loved cutting up with the nurses and having a good laugh.  That's one thing I'm proud of us for.  We were able to see the light at the end of our tunnel and make jokes to keep our moods light.   Not that we didn't have down days, b/c there were plenty of those too.  But I feel like we tried to keep ourselves positive, especially when were there with Tripp.  No matter what our mood was though, the nurses and dr's were always empathetic, compassionate and understanding.  

Ok, so about Cloie being Tripp's Birthday buddy.  There are two pairs of cousins whose birthdays are just a few weeks apart in the Johnson family.  The oldest two, Jacob Jr and Skyler were born a month apart, they're 4 years old.  The middle child, Joanna, is all by herself..and she's 3.  Then Cloie and Tripp were supposed to be a month apart.  Tripp decided he wanted to be the oldest I guess, because he came 6 weeks before her instead of 4 weeks after her.  But she's made up for it, because she has the advantage since she baked longer and has 2 older siblings.. that li'l booger is walking all over the place.. and has the funniest expressions.. She'll give you the "F-you" face and not think twice about it.   I can't wait to see them get bigger and play together. I think these two are going to give the older kids a run for their money! ;o)

Tub Time :o)

I realized recently that I haven't been taking many pictures of Tripp unless its on my iphone. So tonight I pulled out the actual camera. :o)

Tripp scares Mimi :(

This deserved its very own blog.  On Wednesday afternoon, I got an urgent call from Josh at work that Tripp was being taken the hospital by ambulance, he had turned blue at his Mom's (Mimi's) house. I grabbed my stuff and ran out the door.  On my way to Lake Shore, I called Josh back to find out what exactly was going on. He said his brother called him saying Tripp was blue and all he could hear was his Mom panicking in the backgroud. Josh told them to call 911, he was on his way. Once he got there, Tripp looked ok, and he cried when he picked him up. A minute or so later, the ambulance pulled up and took Tripp from him. Luckily, Josh knew one of the EMT's there.. they told Josh to head to Lake Shore and they would head that way once they got Tripp settled.  I got there a few minutes after Josh, but the ambulance wasn't there yet.  We walked back outside to look for the ambulance and they were unloading the stretcher. Tripp was sitting in one of the EMT's laps smiling away and taking a breathing treatment like a champ.  I'm not sure if he remembered her or not, but she was one of the EMT's that took us to Shands UF when he had RSV. We still aren't real sure what happened but this is the rundown..  He woke up that morning with a stuffy nose and a dry cough.  Josh mentioned it to his Mom  to kinda keep an eye on him.  She had to give him his albuterol inhaler later that morning because he was sounding congested. That afternoon, she had to set him down for couple of minutes and put him in the walker.  When she came back he was blue, so she picked him up immediately and I'm not real sure what happened next other than he got sick and threw up and then got very lethargic.. and then Josh got there..  The only thing we can figure is he must've gotten choked up on a mucus plug.  When we got to go back to see him at the hospital he was very wheezy and croupy sounding. We had our worse experience ever at Lake Shore.  The nurses were good and kept the breathing treatments coming and ordered chest x-rays, but we didn't see a doctor for 3 hours!!! And prior to that his nurse came in to talk to us about getting our discharge papers ready. We told them very quickly but politely that we weren't going any where until we had seen a dr.    The dr never listened to our child with his stethoscope, never checked his ears or his nose.  He did his evaluation from 3 feet away and just asked us to take Tripp's shirt off to see if he was retracting.  So he had them give him another breathing treatment and a dose of an oral steroid.  He didn't send him home with any meds and told us to follow up with his pediatrician in 2-3 days. I said, we'll be seeing her tomorrow! All in all, Tripp is ok, but I think he nearly caused his Mimi to have a heartattack! :o(  I feel terrible because he scared her so badly! But so thankful she handled things the way she did!!  She has been his primary babysitter since he came home and has made our going back to work so much easier! Tripp loves his Mimi and Pop Pop <3  And of course his Poppa, GiGi and GP!

Also, our pediatrician Stacy is a rockstar! Most times if we call her with a concern or because Tripp is sick, her office does their best to get us in to see her! Tripp loves his Aunt Stacy and Aunt Gina! Poor kid feels like their office and the hospital is his home away from home! LOL 

So after that adventure, we had a pretty low key weekend! The 3 of us did absolutely NOTHING and it was AMAZING!  Even tho we had to cancel our even more amazing plans to go visit some dear friends over in Ft. Walton beach!  :(   But Tripp and I had a nice relaxing weekend spent in our rocking chair because neither one of us felt all that great over the weekend.. and Daddy got to play videogames :) 

Momma can't sleep..

Well, I said I would update more often.. turns outs that's harder than it sounds.  Since Tripp has been home I get an hour or two of  "adult" time and its seems like the blog falls to the bottom of the totem pole.. I'm sorry for that!  Tonight you're getting an update because I'm up way past my bedtime due to watching a stupid scary movie with the hubby right before bed. So now its me, the laptop and the Cosby's hanging out until I finally feel peaceful enough to attempt to go to sleep. Hopefully with NO nightmares!  Enough about me, I know you're here for Tripp :o)

Our amazing little guy is 13 months old now! He's 16lbs 7oz, 28in long, and his big ole noggin is 18in round.  Its hard to believe that a whole year has gone by.  Some days I don't feel like I have a one year old and I think part of that is because he hasn't been home for an entire year yet.  While I'm thankful his time home is now longer than his time in the NICU, I think once the year anniversary of his coming home floats around on October 15th, that it will finally sink in that we're parents to a toddler. Even though he technically isn't toddling yet, he's rolling everywhere! So for now you could say we're parents to a roller. :o) Which is pretty entertaining to watch. He'll roll to whatever it is he wants.. if he rolls into a wall, couch or chair, he'll use is feet to push and pivot himself so that he can roll the other direction.  He can also sit up by himself now as long as you sit him up.  We're hoping he'll be able to figure out how to get there by himself soon and then maybe start crawling. I kinda have sneaky suspicion that he might just go straight to walking. But we'll see, I know he'll do it when he's ready!  Other big news is he had his lip surgery on April 11th and got his mic-key g-tube out on June 9th!! The lip surgery went well, but it was hard to see him afterwards in so much pain and confusion. Poor guy just couldn't understand why it hurt so bad to drink from his bottle when the night before everything was just fine.  Luckily, on the 2nd day we figured out a pain med combo that worked and he started drinking again and within a few days his pain was pretty minimal.  But his frustration was not. He had to wear arm braces for the first 2 weeks to keep his hands away from his mouth. We thought this might break his thumbsucking habit but a few days later he remembered why his thumb was his BFF!  Have I mentioned how smart our little guy is?! He figured out on the third day how to get these pesky are braces off.  He became a real Houdini. After much fighting and stressing all 3 of us out, the braces said bye-bye a couple of days before the 2 week mark.  The g-tube removal was a piece of cake! All they had to do was deflate the balloon which held it in and pull it out. Easy peasy!  It's still healing but if it doesn't completely close soon on its own, they may have to put a couple of stitches in to help it out.  We've been hearing a lot of "da da dad dad da da" lately and the occasional "mmmm ma ma momma". He seems to like to sing the da's more than the ma's. He saves the ma's for special occasions like when he's peeved because his bottle or breakfast isn't ready yet.. then I get a perfectly clear "MOMMA". His little personality has stayed the same since he learned to show it! And food better be ready when he's used to getting it at feeding times!  Thats pretty much all of our progresses going on right now.. we're so proud of him and how he continues to learn and grow! Its so exciting to see him doing all of these things! I can't wait to take him to the NICU reunion in August and see all of the nurses and doctors! :o)

10mths old - Photo by Joshua Johnson

Before

After

                                                             

Tripp's Birthday Cake made by Momma :)

1st time swimming! He wasn't too sure about it at first..

..but then he decided he liked it :)

Been a while...

I haven't updated since before Tripp came home.. sorry about that for those of you who check for updates on him! Hopefully, you took the notion that "no news is good news" .. but lots of good things are happening!:o)    

Tripp came home on October 15th and its been all about him since that day with the weekly Dr's visits here and there.  When he came home his weight was around 7 1/2lbs and he's now almost 13 1/2lbs.. he's finally starting to catch up with other babies close to his age!  After he came home we had 3 overnight stays at the hospital for esophageal dilation, which is where they go down his throat and stretch the scar tissue from his surgery to open his esophagus a little wider.  He had his last one in December and so far has been doing well, even taking some solids now.  But he'll eventually have to have another series of dilations once he starts to take table food.  We also spent a week in the hospital at the end of January because he got RSV with pneumonia.  Luckily, it didn't get too terribly bad.  He was on oxygen for a few days and was able to wean off it as the virus ran its course.  Thankfully, he's been getting the synagis shots monthly.. I think that helped it to not be as severe as it could've been.  The ROP in his eyes totally cleared up around November but he had to start wearing glasses due to being farsighted.  As strong as the lenses are you would think the poor boy is blind! lol  But after he started wearing them, he began reaching and grabbing for more things in his line of sight!

Developmentally, he's doing amazing!  The only thing he's delayed on is sitting up by himself.  This is mainly due to the fact that he still has his mickey g-tube in his belly, so he HATES tummy time and will immediately roll to his back if you put him on his tummy.  But therapy started to come working with him 3 weeks ago and we are trying some other exercises to strengthen his core muscles so that he can sit by himself.  He's wanting to talk so badly its killing him.  He'll look at you while you're talking and try to mimic what you are doing with your mouth but hasn't quite figured out how to make the different sounds yet, but he will jabber your head off when he wants to!  

His next surgery is on April 12th.. he's getting his incomplete cleft lip  fixed and also finally getting circumcised.  Poor boy isn't going to know what happened to him! :o(    I'm excited and nervous about this.. I'm ready for it to be over, but I sure am going to miss his big beautiful smile..  He'll still have a beautiful smile, but it will be different from the one I've been getting each morning when he wakes up for the past 5 months.  But I know its for the best for him!

I'll try to be better about updating in the future!  Thanks for keeping our little miracle man in your thoughts and prayers! We are so blessed to have him.. he has such a happy spirit! I know he's going to do wonderful things in his life as he grows! <3

MRI and Other Results

So we got the results from Tripp's brain MRI on Thursday.  And they weren't the greatest, but could've been much worse. Overall, Tripp's brain is small and the myelination is underdeveloped. Both of these are expected with his prematurity and eventually over time and with therapy will catch up with him.  The unexpected was he has 3 structures of his brain that are smaller than what they should be: 1) cerebellum, 2) optic nerve, 3) mammary bodies. This has only ever been reported in one other case, and unfortunately that child passed away from complications other than the brain abnormalities.  So the dr's don't really know that this means or how it will affect Tripp long term.  More than likely, it will delay his motor skill development even more with his prematurity. But Josh and I are hopeful that with regular therapy and good nutrition it won't be too big of a delay.  So we're just going to take one day at a time and love our little boy! A good thing is the opthamologist that checks his eyes for ROP, check them yesterday, the ROP has regressed and is Stage 1 now but she also looked at his optic nerves looked normal to her. So, like I said, one day at a time.

Our guy has had a busy week.. On top of the MRI, he had an echocardiogram, skeletal scan, esophagram, and immunizations, which suprisingly I've already gotten the results too.

Echocardiogram - the whole in his ventricular wall, the VSD, has closed but he has a PFO.. apparently this is common in preemies and shouldn't affect him.

Skeletal scan - Showed the 2 misshaped thoracic vertrbra and some bone loss in the head of his femurs, but this also is to be expected due to his prematurity and lack of movement after surgery and will correct over time.

Esophagram - This looked the same as the last one, its still narrow at the spot his esophagus and tummy were connected so they're planning to dilate it in about 2 weeks. If we're still in the hospital it will just be done, but if he has come home, we'll have to take him in and be admitted over night. So, to avoid having to go through staying the night in the hospital so soon after coming home, I think we're going to ask for him to be kept in until this has been done.

Immunizations - He took these like a champ and even though we ended up at the hospital on Thursday to get the MRI results, I got lucky and was able to miss out on him getting his shots.. But I got to love on him a little after the shots and then his Mimi loved on him and then his Daddy.. so he got lots of lovin' to make up for the mean shots.

So that's the nitty gritty of everything.. Please continue to keep the three of us in your prayers!  God's love is what is getting us and most importantly, getting Tripp, through all of this!

Almost home!

Tripp is doing amazing! We found out today there is a good possibility that he could come home by the end of next week!!!!  Looking at him now, you would never believe he was the sick baby on the ocillator vent after surgery 7 weeks ago.  He's been on room air with no oxygen since last Friday.  I was shocked that he was able to go from the vent to regular oxygen and moved to room air so quickly!  He's started smiling pretty regularly now but he does it so quickly I haven't been able to catch it in a picture. He also is very nosey! He likes to be up looking around, checking out what the nurses are doing around him, and demanding attention whenever he gets bored. He loves to be talked to! He definitely got his social skills from his Daddy! I hope he keeps them!  He's been taking 10mL bottle feeds for a week now and is doing quite well with it.  The only little thing is he has a narrowing where they attached his esophagus and tummy together, so he's going to be getting another barrium swallow in the next few days to check it out and help the surgeons decide if it needs to be stretched and how much.  They also did a brain MRI yesterday to check for any permanent damage from his being premature and lack of oxygen at various times but we haven't gotten those results yet. I got a lot of information today so please bare with me as I try to sort it out and make sure I'm getting everything. Also planning to do another echocardiogram to check the small hole in his ventricular walls (VSD) and will be set up with a cardiologist to monitor this as Tripp grows.  Getting a bone/skeletal scan tomorrow  can't remember exactly what the practioner called it, but once its done they'll know whether or not to set us up with an orthopedic for Tripp's back.  Ummmmm..... his eyes are still the same.. still has stage 2 ROP in both eyes, but this is being monitored weekly and will continue to do so until his eyes are fully developed.  He'll be getting his first five immunizations tomorrow.. this is going to sound awful, but I'm kinda glad I'll be at work while he's getting those so I don't have to see his sad face.. breaks my heart!   I think this is pretty much everything.. a lot, isn't it?! LOL

As always, we love you guys and are so thankful for the continued support and prayers!!! I'll post new pics soon.. my phone is running an update right now so I can't get to them..   but I'll try to post again tomorrow with the MRI results and pics! :o)

Surgery & Recovery

Tripp had his surgery three weeks ago today to connect his esophagus and stomach. Surgery went well, recovery.. not so much.  Its been a long three weeks.  The first couple of days he did alright after surgery. Then things went terribly bad. He was on the vent and his carbon dioxide (CO2) started going up and he would desat to the point they would have to bag him with oxygen and he would still be turning bluish-grey. So they would make adjustments to the vent, he would be good, and then his CO2 would start creeping up again. Then on top of this, he ended up with fluid building up in his chest and an air pocket. They added another chest tube close to where the first one is, so he has two now, and that seemed to help some. Then they got clogged because the drainage was so thick. Because of that, they had to change out the tubes. This helped some. During all of this, they decided the surgical site must have a leak, which would explain the air pocket and super thick drainage. After a few days of fighting this and his ever rising CO2 levels, they put him on the ocillator. I never wanted to see that machine again, because all I remember of it is shaking my 2lb baby's body to death. Amazingly enough, it doesn't have the same effect on a 5lb baby, there's more of him there, so it didn't shake him anywhere like it did the first time he was on it.  This seemed to do the trick at first, and then the CO2 levels started creeping up again.. luckily they tried a few adjustments and FINALLY found the right one.. After almost a week of steadily going down and getting bad news every day, things started to slowly start getting better. It was bad and to the point I was starting to have anxiety just waiting on hold when I would call to check on throughout the day.. I just kept thinking "ok, what else bad can they tell me today?"  And no, this probably did not help my anxiety at all. A big part was I felt guilty for putting him through this surgery.. It wasn't supposed to make him get so sick, it was supposed to make him better.  But thankfully, after he turned that corner, he's been making progress every day. Right now, he's on very minimal vent settings and they're doing a barium swallow on Friday to see if the leak has healed and what's going on with it. We're praying it will be healed up so they can take him off the vent and hopefully remove his chest tubes. Then we'll be able to hold him again. We haven't held him in 3 weeks.. I miss feeling my baby in my arms..

On a happy note, I had my baby shower this past weekend thrown by my awesome friend, Whitney! My family and lots of friends came to celebrate with us and we received a bunch of gifts for Mr. Tripp!  His room is almost complete now. Just have to organize some stuff, get his clothes, blankets, and sheets washed up and we'll be all ready for him! I hope he likes his room. Whitney and I got the stickers put up on his wall this weekend as well. I might be biased, but it looks pretty darn good!

Thank you to all of our friends and family who have stuck by us through this tough time.. I don't know what we would do without your support and prayers!    And I'm so thankful to God, for taking care of our precious little boy.. if it weren't for Him, I don't believe Tripp would still be with us.

Neverending rollercoaster ride..

Normal circumstances, we LOVE rollercoasters!!! Can't keep us off of them. Never dreamed there'd be a rollercoaster I didn't want to ride until now.  The past few days have felt like the part of the old wooden rollercoasters where there two or three short hills back to back, you go up and down, up and down, the whole time feeling like you're getting beat too death from the vibration. 

Started out at the top, Tripp was doing well and even got moved down to NICU 2.  Unfortunately, once he got there we weren't pleased with the level of care. In this unit, the staff is used to what they call "feeder-grower babies", which are babies that just need to be changed, fed, and put back to sleep. Tripp just isn't one of those babies yet. He requires a lot of attention, especially if he drops his oxygen sats because he has a gob of secretions stuck in his throat and needs to be suctioned. Well, it only took 2 days and they sent him back down the hall to NICU 3.  Josh and I were relieved to hear this..because we had seen first hand that the nurses in the stepdown unit waited when alarms went off to see if the baby could correct whatever it was on their own.  So we get back down to 3 and things are going well except Tripp is fighting his suction tube more and more everyday. Which is good and bad, good because he's showing he's getting stronger and more alert, but bad because he's wearing himself out and if the tube isn't in where it can suction him, he drops his oxygen sats. And while he is getting stronger, he doesn't have a whole lot of reserve. So if he gets upset and goes down, it takes him a little bit to come back up.  On Wednesday night he really scared me.  I went down after work and when I got there he wasn't acting like himself.  He would go to sleep, wake up and fuss, go to sleep, wake up and fuss...which is not like him at all. He happened to be awake and crying at shift change, I was trying to console him and they made me leave. I was not happy, but the nurse said she would come sit with him in a minute. I hated leaving him while he was crying!! When I got to go back in after shift change, she let me hold him to see if that would calm him down. The minute we got settled in the rocking chair, he calmed down and started trying to rest. Then, out of no where, his sats and heartrate crashed. And my little boy turned blue in the blink of an eye. Thank God, his nurse was right there. She immediately took him and put him back in bed, put the oxygen bag on him and was calling for the practitioner. I stepped out and waited in the lobby.. there are some things as a parent that I just don't need to see, nor did I want to be in their way. It only took them about 10 minutes to get him stabilized again. Turns out he had a gob of thick secretions stuck. Once they sucked that out, he came right back up.  The next day, they decided to put him back on the CPAP to take a little stress off of him. On Friday, they tried to take him back off of it and he didn't tolerate it at all. They drew some labs to check for infection and everything came back good except his CRP and it was only one point high. It should be 10 and his was 11. So they went ahead and started him on antibiotics for 48 hrs just to be on the safe side. They checked his CRP again on Saturday afternoon and it had dropped to 6, which is good and you could tell he was feeling better.. they were able to moce him from the CPAP to comfort flow oxygen.  Yesterday, he was even better. Since he was at the end of the 48hr period, they went ahead and made the decision to leave him on the antibiotics for a full 7 days since he's improved so much while being on it. The biggest frustration with all of this, is most of it is caused b/c he's fighting the suction tube and we can't get rid of the tube until he has the surgery to connect his esophagus and he can't have the surgery until he's above 2 kilos or 4lbs 6oz.  All week he's been hanging out between 4lb 1oz and 4lb 3oz and at 34mL feeds. Finally on Thursday, the practioner agreed to increase feeds so he'll gain the weight to have the surgery. So he went from 34mL to 37mL to 40mL. :)  After the increases, they also started adding protein powder and a little sodium chloride to my milk. His practioners are determined to pack some weight on him!  And let me tell y'all, it worked! He went from 1917g on Saturday to 2007g last night. I'm praying he either maintained that amount or gained again tonight. We're hoping if he maintains this weight for a couple of days without losing any, they'll schedule his surgery ASAP!!

A high point was we were able to spend most of the weekend there at the hospital. On Saturday, my dad took me shopping and Josh got to spend some quality time with Tripp in the rocking chair.  As much as I love to hold him, I love to see him and Josh together. I can't wait for him to be big enough for Josh to teach him how to fish and play soccer and the fun memories we'll make as a family.

Another fun part of this rollercoaster is nearing my due date and facing the fact that I'm not going to be taking my baby home even then.  Yes, I know this isn't a surprise because we were originally told Nov. or Dec. would be when we should expect to bring him home. But that was almost 11 wks ago and we were just trying to make it through the first week. Now that we have a pretty good feeling that he's going to make it and we're coming up on when we should have been bringing him home.. its a little bittersweet. Yes, I'm thankful he's here. Yes, I'm thankful he is some where that can manage his needs! I even understand why he's not ready to come home yet and all that jazz. But it doesn't change the fact that I'm supposed to still be pregnant and getting to go through the excitement of when labor will start, going to the hospital to deliver him and bring him home a day or two after. 

These are just some of the portions of the rollercoaster ride.. scary isn't it?! As I said before, we never dreamed we'd be on this ride. Every day is a new turn, hill, or corkscrew. All we can do if fasten our safety belt and hold on tight, praying for the end to come soon so we can bring our Tripp home.

Long week...

This has been one of the longest weeks yet. Not because something bad has happened, so don't get worried. Its because we can actually pick Tripp up without having to ask permission, we can change stinky diapers without waiting for hands on (believe me, you don't want to wait! He's really a "stinker"!); basically we can treat him almost like a normal little baby.  So the whole theory of going a couple of times during the week and on the weekends is no longer working for me. All week I've sat at work and struggled to concentrate and get my work done. This frustrates me because I enjoy my job and being efficient at it. But the main thing that's been on my mind is five o'clock coming around so I can try to get to the hospital.  I'd heard that the beginning was hard because of all the unknowns but that the end was even harder because you can actually start caring for your baby, but working parents miss out on a lot of this. I wasn't quite sure if this was true the first time I saw somebody say it on a board, but I now I believe it.  Thankfully, Tripp has had wonderful nurses that get wrapped around his little finger within a matter of minutes. His nurse yesterday snuggled with him a couple of times during the day because he needed some lovin'. I was so anxious to get there yesterday that the normal 30-45min drive on the interstate only took me 23min.  Yes, I'm well aware I'm lucky I didn't get a ticket but on my behalf there was barely any traffic and I never went above 80mph. I got there right before shift change so I got to see him for about 10 minutes before I had to leave for 30 min. Luckily I had planned my pumping around this so I didn't have to just sit in the lobby and twiddle my thumbs. And by the time I was done, it was time for me to go back in. We had one of Tripp's favorite nurses last night, Ms. Jeanette. She's such a sweet lady.  She gave Tripp a bath and I tried to help a little, but felt like I was more in the way. His hair looked like a little blonde poofball after we dried it. It was funny.  After his bath, I got to dress him in his little sleeper from home. Once again, I was proved wrong. I've always been fine dressing my nieces and nephews and pulling there arms thru the sleeves like it was nothing because I knew it wouldn't hurt them...but was told that it would be different when it was my own.. I looked like I had never dressed a baby before trying to put that thing on Tripp. I swore to Ms. Jeanette that I had done this before and this wasn't my first time. But she just smiled sweetly at me and didn't say a word. After he was all dressed, we made our way to the rocking chair and I got to rock him to sleep as he was getting his feeding. Poor guy was pooped out from the bath and then trying to get dressed. He fought a good fight trying to stay awake but once his tummy started getting full he was out cold.  That's the best feeling in the world being able to rock him and look at the sweet face and not having so say a word. I'm looking forward to spending lots of time in our rocking chair at home.  I would post some pictures but my computer is acting up.. but if you're my friend on facebook you can see some of them on there.

As of today, our little booger is 9wks old, weighs 4lb 1.7oz, and is 16in long.  Sometime tomorrow he'll be moving to the stepdown unit, NICU II.  He'll stay there for the next few weeks until he has his surgery; then we'll end up back in NICU III.  I have mixed emotions about the move. I'm happy he's well enough to move down, but I kinda wish we could stay in our little corner since we're going to end up back here anyways.  But I know in reality, they made need his spot for a baby whose sicker than him so they can get him/her well too.

Please continue to keep us in your prayers and all the other little NICU babies! We appreciate it so much! We love you all! Tripp loves you too! <3

2 months old!

Wow! I know it has been two months, but there are still days where I feel like it's just happened yesterday minus the unhealed incision and soreness! Its so amazing to look through pictures and see how far our little fighter has come. I forgot to mention the other day that Thursday night he got moved from his isolette to a radiant bed, which is the bed a regular newborn goes into to regulate their temperature. It's nice not to have to look at him through plastic any more or open little doors so that we can reach in to touch him. Another HUGE step is Saturday afternoon they did a trial with him off the CPAP and he did great! He's been off of respiratory support since then. The only thing he's getting is high dose caffeine which helps stimulate him to breathe. Who knew caffeine could be good for you?! Now the only time he has a de-sat (drops his oxygen saturation) is when he gets a secretion caught in his throat that he can't cough up on his own, but once the nurse suctions him, his sats come right back up.  Its funny, the nurse today commented that he's much nicer to them since he's off the CPAP. well, DUH! He was tired of that nasal cannula forcing oxygen up his nose 24/7. Now he only gets fussy when he's hungry. Homeboy likes to eat! Even though he gets feeds through his g-tube, he knows when it's time to eat!  He had his eyes checked again today for ROP, they're still immature with no changes. Which is awesome! Hopefully, they will continue to develop without the ROP.  One more new thing is he can wear clothes now! He looks so cute in little sleepers! He's probably wondering what happened to his naked days?!  I came home and washed his little preemie outfits that friends and family have bought for him. Luckily we have just enough since he's probably going to out grow them soon! They're sitting by the couch in a bag with freshly washed receiving blankets to take to him tomorrow. :) 

I went to church yesterday before going to the hospital.  It was so nice to be able to share the results of Tripp's surgery with everyone. I'm so thankful for the amazing support system Joshua and I have. All of the prayers from all over are what is healing our little boy and helping us keep our sanity.  When I got to the hospital, after I pumped and all that fun stuff, I was able to hold him for a little over an hour.  It was so nice to hold him without 50 million things connecting to him.  He's starting to stay awake longer duringg his awake times.  He's going to be nosey like his Momma, he likes to look around at everything around him.  He stayed awake for about 30 min while I was holding him, checking everything out and staring at my face. He's trying to smile now too. Its so cute. He'll get one corner pulled back, relax, then pull the other corner back. Then he'll try again but wrinkle his forehead like he's not quite sure what's going on.  We've also discovered that his paci is his best friend. His nurse yesterday told him his friend needed a name, so she and Tripp named the paci "George". It was funny, when she first said George, he raised his eyebrows, like "OOh, George, I think I like it".  I love that we're already getting cute stories to tell him as he grows up.  We've been so blessed to have nurses that just adore him!

Ok. I think I've covered everything from the weekend. Sorry it seems like I have two separate posts in one blog entry.  If you haven't figured it out yet, English and writing was never my strong suit.   As always, thank you for the continued thoughts and prayers! We love all of you! <3

Surgery #2

Today was Tripp's second surgery. During the first surgery to place his g-tube, they weren't able to use an actual g-tube because he was too small for it. Instead, they used a foley catheter. This was doing well until recently when it started to leak some.  Today they went in to switch the foley catheter to an actual g-tube.  The procedure went well and Tripp did great! While they were in there they put some dye into Tripp's esophagus pouch and his stomach just to check if they had grown any. This showed something AMAZING.. his esophagus and stomach have grown enough that they are touching. So this means that they don't have to do any stretching! Funny thing is I asked his surgeon yesterday what would they do if they got in there and saw that they had grown enough to be fixed what would they do. She said this was highly unlikely to happen, but if it did they would only switch the tubes and plan to do the re-attachment later. When the doctor came to talk to me after the surgery, she had a huge smile on her face. I was in shock when she told me and asked her twice if she was serious. The plan now is to wait a month to do the re-attachment so he can grow some more and get stronger.  

Thank you all so much for your continued prayers for Tripp! As you can see, they're truly doing something special! We would've never thought in just 5 short weeks that this is what they would find when they did their reassessment. We're so thankful for our growing baby boy! He's our little miracle in the making!

The Past 8 Weeks

The past 8 weeks have been the most stressful and happiest 8 weeks of our lives. We've gone through every emotion imaginable, I think. I honestly have never prayed so much in my life! The doctors told us his first week was the most critical and if he made it through his chances of survival went up. We were so thankful to get to that 7 day mark. Also at the 7 day mark, they did an ultrasound to check for any brain bleeds. A few days before that the doctor scared the heck out of us when he told us about all of the things that could "possibly" show up from learning to physical disabilities which terrified us! I cried the whole way home from the hospital on that night. Thankfully, the ultrasound came back normal but they will do an MRI at his due date to thoroughly check his brain to make sure there wasn't any permanent damage from his being born premature.

During the first few weeks we had fun on the rollercoaster of trying to wean him off the ventilator. We started out on an oscillatory ventilator, which is very aggressive and breaths in and out very rapidly, to a conventional ventilator back to the oscillator and back to the conventional vent. At 5 weeks they took him of off the ventilator and put him on comfort flow oxygen. He tolerated this okay for about 2 days and then he started dropping his oxygen saturation. So instead of reintubating him, they tried him on a CPAP, luckily he tolerated this pretty well. After about a week and a half, they thought he was ready for the oxygen again. Same thing happened, he was on it for about 2 days and then he just pooped out again. He started dropping his oxygen sats again and wound up back on the CPAP. Which is a good thing, its much better than him being reintubated.

About 4 weeks ago, they began checking his eyes for ROP, Retinopathy of Prematurity which is a disorder than can possibly cause blindness in babies born before 31 weeks gestation. So far his eyes seems to be developing normally, but they are still immature. They've been checking his eyes every 2 weeks to stay on top of this.

Currently, Tripp is doing well on the CPAP and has been on 21% oxygen which is the same as room air. His weight is up to 3lb 15oz and he is 16in long. We found out today that they will be doing surgery on Tripp tomorrow morning, to replace his feeding tube. When they initially put it in, he was too small for a traditional g-tube, so they used a foley catheter instead. Which has served its purpose well, but its began leaking around it. While they are doing this tomorrow, they're also going to put some dye into his espohagus pouch and into his stomach to see if they've grown any and check the distance between them. Please continue to keep us all in your thoughts and prayers! I'll post an update tomorrow to let you know how the little fighter is doing!