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!

Tripp's Birthday

It all started on Tuesday, May 11th, I noticed Tripp wasn't moving like normal, but he was still moving some. I didn't get extremely concerned until I woke up Wednesday morning and he was in the same position as he had been when I went to bed. So I got something to eat, drank a glass of cold tea and laid on my left side to try to get him to move. Didn't work. By this time Josh had woke up and was getting worried. So I went ahead and got a shower and called the doctor's office when I got out hoping they were open. Once I explained what was going on, they sent me straight over to Shands Lake Shore. We got there at 8:00a and they got us hooked up on the monitors and we heard the most beautiful noise in the world, Tripp's heartbeat. At this point, we figured worse case scenario they would send me home on bed rest and tell me to take an easy. Boy, were we wrong! Tripp's heart rate began to decelerate, it would come back up on its own, but it was taking longer than they liked. So I they started an IV with fluids, turned me on my left side, and put me on oxygen. None of this seemed to help. So they went ahead and gave me a shot of betamethasone, which would help Tripp's lungs to mature some, just in case they did have to deliver him. Dr. Greene came over and did an ultrasound to check him out. Everything looked ok except for he wasn't moving as much as he should and he also wasn't practice breathing like he was supposed to be. She was going to try to transfer us to Shands UF but wanted to watch Tripp to make sure he was stable enough to make the ride in the ambulance. Apparently he had no intentions of making that ride just yet because he dropped his heartrate a few more times. Plans changed quickly to an emergency c-section and Tripp was born at 11:49a. He weighed 2 lbs. 1 oz. and was 13 in. long. When he was born they had to rescucitate him as he was not breathing. Thankfully, they were able to get him breathing and intubated since his lungs weren't mature enough yet. Among being premature he also has a small cleft lip, 2 vertebra the did not form correctly in his thoracic area, a small hole in the ventricular wall of his heart (VSD) and esophageal atresia, which means his esophagus is not connected to his stomach. With all of these abnormalities they have diagnosed him with the VACTERL or VATER syndrome which is a list of seven abnormalities that can occur and a person must have atleast 3 to be diagnosed with it. Thankfully all of these things are fixable and/or manageable! So Tripp could start feedings, they placed a gastronomy tube (g-tube or feeding tube) into his stomach a few days before he was 3 weeks old. Since that time he has gained almost 2lbs and grown and inch in length. :)