Catch Up

So much to catch up on.

We kicked off November with surgery. Not for Jackson but instead for Carter. He had his tonsils and adenoids removed. This was the only picture I got the entire day. Don't let this peaceful picture fool you into thinking this is how recovery was. This was a rare, rare moment.

Once we got his pain controlled with medicine after surgery, and after the inevitable throwing up subsided, he was happy, energetic, and wanting to eat anything and everything. I figured this recovery would be a breeze. He hated taking the medicine. And I don't blame him. It tasted horrible. So we had battles with this every 4-6 hours. Him screaming and running away and then half the time having to hold him down to slip the liquid in his mouth. Finally he realized that the medicine did in fact make him feel better. So instead of 20 minutes of fighting, we were down to 10.

Then the real kicker: Roid Rage. You've heard of it right? Steroid Rage? Yup, Carter gets/got it. Everytime he has an allergic reaction he is put on a steroid for 2 days. This time after surgery he was put on it for 7 days. Side effects? He had all of them, in the worst way. Increased appetite, altered taste buds(nothing tasted good to him) trouble sleeping, mood swings(oh the mood swings). Several nights in a row he would be awake every 1-2 hours just crying and screaming. Bad part was that he wasn't fully awake and we physically couldn't wake him. It would take both of us to calm him down, finally get him back to sleep, and then he'd be awake an hour later. And during the day his temper was out of control. He would go from super happy, to devil child in about 3 seconds. And the day he went off the steroids was even worse, because come to find out, he was having withdrawls. So, next time he needs a steroid I will probably skip town for a couple of weeks. The tonsillectomy in and of itself was pretty easy. But 'Roid Rage, it's real!

November brought new foods for Mr. Jax. He now eats rice cereal, beans, peas, and canned turkey. Looks and smells like cat food. That stuff is horrible and the first time I made him try it he was gagging like crazy. Now I thin it out a bit with milk and he quite enjoys it. He is noticing us when we eat and really wants to join in. We also let him chew on licorice sticks, jerky sticks and crackers for a little texture and added flavor. He quite enjoys the jerky which is lucky since meats/proteins will be a huge part of his life.

Carter and Jax are developing a cute little relationship. I know Carter is anxious for the day when Jax can really play with him. Carter loves to talk to Jax and gets really excited when Jax smiles back and he always tells me "Ahh, he loves me."

Thanksgiving was a very special day for us. And not just because it was Thanksgiving....this was the first holiday we have spent out of the hospital since Jackson was born. We were so grateful for our little turkey this year and for his daily improvements!

My happy Turkey wearing his Thanksgiving get up.
He's finally learned to hold his own bottle. Which is so great for me if I need to do something else during eating time.

Our little monkey isn't really so little anymore. Do you see that double chin and that round belly? I have never been happier to see a little chub on a baby. He is gaining weight at a great rate now and we pray it continues. And in better news, Jax graduated from "therapy" today! They flagged him as a bit behind when it comes to playing and interacting with toys. But when they came and visited him today they were so impressed. He showed off his mad skills by picking up objects, passing them between hands and so forth.

He has rolled over several times but does not do this consistently. He has the capabilities to do so but chooses not to. He is just like Carter. Content, Lazy......whatever word you want to use! He can roll over but is just fine to lay on the floor and play in whatever position you put him in. I asked the pediatrician if I should be worried that he's not consistently rolling or sitting up yet and the pediatrician's words were: "congratulations." Congrats on having a slower mover which means you don't have to baby proof anytime soon. I am actually fine with having him stay in one place for as long as he wants.

Carter has really been a difficult child lately. Whoever said 2's were terrible obviously never had a 3 year old. Carter has really become almost a different child the last few months. We butt heads every single day. He is very emotional and seems to have a meltdown at the littlest things. I love him dearly but he sure keeps me on my toes.

We've been doing a few things to try and get his energy out. He's been to a gymnastics place twice and loved every minute of it. He's a cautious little boy but once he warms up to things he really goes at it.

Loving the trampolines.

This picture is a prime example of the drama this little boy brings. A simple request to have his picture taken turns into this. These are their Christmas pajamas that our Elf Simon left for them. Carter has worn them every single night since. I have to wash them and have them back to him by bedtime.
Here was the best shot of the night. Happy, go-lucky Jackson with Angry, sulking Carter.

Sweet Jackson getting ready to celebrate his first Christmas.

We've really been talking up Santa lately and Carter has been really excited to go and see him and tell him what he wants. He has been very consistent on what he wants for Christmas this year. A Carwash. He found this little car wash at Kohls months ago and has been asking for it ever since. And since he owns about 1 million cars, a carwash makes perfect sense.

When we first got to Santa, Carter got stage fright and refused to get close to santa. He didn't cry or anything but he kept telling us he was scared. I plopped Jackson down on his lap to show him that Santa wasn't scary at all. The first thing Jackson did was reach up and pull Santa's beard. Hard. I guess he was testing to see if this was the "real" santa or not. The beard and long hair are real. But I'm pretty sure Santa's suppose to have a white beard and hair. Not yellow like this guy.

Finally got Carter up to see Santa. He wasn't really scared anymore, just a little shy. He did speak right up and told Santa that he would like a carwash and maybe even a race track for his cars. They had a nice little conversation and Carter posed for a picture without any tears!

Is it bad that I secretly like it when they scream, cry and try to escape Santa's arms? It just makes for a better picture really. Maybe next year Jackson will be terrified. I can hope anyways.

I asked Santa for another holiday spent at home with my 2 boys and hubby. I don't need any other presents beside that.

A flashback to the past

I was reading a friend's blog and she went back in time and wrote down her birth story with her son who is now 4. So I figured I had better do this with Jackson before I forget. With all that happened on his birth day, I never wrote down many details. And I certainly don't want to forget any. This is mostly for me, as a journal.

Ever since Jan. 2011 when my 20 week ultrasound found a problem, I had been seeing a specialist, and also seeing my regular OB. Once April hit, about 30 weeks along I started having more appointments than I ever imagined. Our goal was to deliver at 37 weeks, in a controlled environment. We didn't want any surprises from this baby and didn't want him delivered in Logan. That would have guaranteed a helicopter ride. I got to chose his birthday(well chose from 3 days)-I chose May 26th and looked forward to this day.

The first of May I started having bi-weekly appointments. Which actually was 3 appointments a week. I was seeing my regular OB twice a week and the specialist once a week. I felt good having 2 doctors monitoring me, because 4 eyes are better than 2 eyes, right? I would have 2 non-stress tests each week and 2 ultrasounds a week. One ultrasound at my OB office and a higher tech one with the specialist. They were watching closely to make sure Jax wasn't stressed in any way or carrying too much fluid. Either one would result in immediate delivery. Each week he passed both tests with flying colors. Always perfectly active and with the perfect amount of amniotic fluid. My stress level was high during these last few weeks. I was instructed to monitor and count his kicks frequently. Any decrease in movement and I should be at the hospital. I worried about this daily. Had he moved the 10 times in the hour like he was suppose to? Or was I just busy with something else and hadn't noticed them? I ended up at my Dr.s office a couple of times with false alarms but better safe than sorry.

May 16, 2011

10 days until delivery. Although when I woke up this Monday morning I had this feeling that I wouldn't make it 10 more days. I felt like this was the end and that Baby should be delivered soon. At my last ultrasound the dr. mentioned that his upper bowel was stretched to the size of an adults and that made me very nervous. I was very interested to see what the Dr. said and to see if my feelings were justified. I/He passed the stress test with flying colors. Then onto the ultrasound with the specialist. I had gotten quite familiar with these ultrasounds and what to look for. They divided my uterus(?) into 4 quadrants and measured the amniotic fluid in each quadrant. The fluid level was suppose to be between 10 and 20. Anything higher or lower was dangerous. This day I watched the screen like a hawk. The first quadrant measure high...and kept high all through the final 3 quadrants. My fluid level was at 28! The Dr. wasn't in the room at this point, just the ultrasound tech. And even worse, Neil hadn't arrived from work. The specialist I saw as ALWAYS 1-2 hours behind schedule so I had told Neil to not come until I called him. I called him right as they called me back for the ultrasound but he hadn't arrived up to this point. The tech left to get the Doctor and I sent Neil a mass of texts (since I didn't have enough reception to call him) that said "pretty sure we're delivering tomorrow." "Carrying to much amniotic fluid." As soon as the Dr. came in and saw this he turned to me and asked "Are you ready to have this baby?" I was. I felt peace about this decision and knew it was time. Delivery was scheduled for the next day, Tuesday May 17 at the University of Utah. They predicted his weight at between 6 and 7 pounds. A little chunker!

Before finding out about any problems I had discussed and decided, along with my OB's support, to try a VBAC(vaginal birth after Cesarean.) I didn't want another C-Section. With needing to deliver at 35 weeks 6 days, plans changed a bit. I was told that I could still try a VBAC but that chances of having a successful VBAC when being induced, went down and the odds of having another C-section goes up. My doctor checked my cervix and just like I predicted, completely closed. No action in the bullpen. I felt like a C-section was the way to go. For my sake as well as Jacksons. My emotional state was very sketchy as it was and I didn't think 24+ hours of intense labor would help anything. I chose a C-section and felt good about it.

Neil and I came home and packed like crazy people. I had no idea what to pack and what to take. At this point we didn't know the diagnosis of our baby. He may only need to be there a week. Or maybe a month. I packed a little of everything but even packed a coming home outfit for Jackson, in hopes that I would be bringing him home that week.

Neil and his dad gave me a blessing that night. I am forever grateful for that. I was promised peace and comfort and the thing that stood out the most to me....I was promised the strength it would take to nurse my baby back to health. I have remembered that promise so many times when it gets hard and I don't think I can take one more day of it.

I wasn't allowed to eat after midnight so I tried to make the most of my last meal. Pizza and an oreo shake from Charlies. Then to bed with hopes of sleeping soundly. No such luck. I slept for a couple of hours and then wide awake for the rest of the night. Awake with worry but also awake with excitement. I would get to meet my baby boy in the morning. I didn't think morning could come fast enough. Finally it was 5 am and I felt like I could take a shower now and start getting ready without it being too early. We had to leave Logan by 6:30 am to be at the U by 8. We of course hit traffic (have you ever tried to drive near Primary Children's or the U at 8 am? Disaster). I couldn't believe the day was finally here. I had Neil snap one final picture of my belly before we left. I had to distract myself so I would cry as I left my first baby, Carter, and didn't know when I'd see him again.

Last picture before I delivered. Look at that belly. I was huge and I knew it. I was carrying around a lot of extra fluid and it was showing at this point. My face was puffy and my poor, poor nose. I only gained about 25 pounds but that belly sure doesn't show that!

We arrived late at the hospital but no one was too worried about it. After all, they couldn't start without us. I was prepped in my room and got my IV started and hooked up to to the monitors. Baby still doing fine. I was having some semi-consistent contractions though. I couldn't feel them but saw them on the monitor. It made me wonder, if circumstances were different, how long it wouldn't have been until my body had gone into labor by itself. My Dr., coming from Ogden was late (not a big shocker). He finally made it and we were ready to get the show on the road.

I was a little nervous at this point. I had a C-section with Carter but it was under semi-emergency circumstances and so I was put under general anesthesia for the C-section. Just lay on the table, slip some meds into my IV and hours later, I was awake and a mom. This time was totally different. I was awake. Much to my horror, Neil wasn't allowed inside the OR until AFTER my spinal block. This was the part I was most nervous about. I didn't have an epidural or spinal with carter. This was a first. One of the nice nurses let me bear hug her while they put the spinal in. I was trying not to shake with nervousness while they placed it. You know what, I hardly felt it. A little pinch and it was over. The numbness started almost immediately. They had to help me lay down. Such a weird feeling to not be able to feel anything below your chest. I kept trying to move my legs, just to see if I could. I could not. Don't worry. I started to feel really queasy and kind of like I was dying(or what I imagined the door of death to feel like). They finally let Neil in the OR and he came in to see my blood pressure 60/40. So my feelings of dying were justified. They quickly gave me some meds to increase my BP and that helped a little. It was so uncomfortable lying there on my back with all that pressure sitting on my stomach. I kept asking Neil for updates and kept trying to not throw up. My BP kept dropping but they were quick to keep the meds coming. They had to put an oxygen mask on my face but that made things worse. Breathing that hot, sticky air made me sicker. Finally we compromised and they put the mask to the side of my mouth so I could still get some, but not feel like it was suffocating me.

Finally they got to the point where they were ready to make the last incision and pull baby out. It had been about 20 minutes at this point, although it felt like an eternity. With Carter, because of my condition, from the first cut, to delivery was less than 2 minutes. So having a C-section last 20+ minutes seemed extra long. I was getting very anxious at this point and kept reminding Neil to have the camera ready because I knew there wouldn't be much time to snap a picture.

11:46 am Jackson is finally born. They warned Neil right before they pulled him out and held him up like this so Neil could snap one picture and then he was gone. He didn't cry while in the room with us. I heard a gurgle from him but that's all. They whisked him right away. It killed me that I didn't get to see him in person. Neil showed me the one picture he took but that's all I got.

Here is the nurse passing him through the window into the NICU. The U has a wonderful NICU and the plan was to keep him there, until stable and then transport him over to Primarys. The nurses and Dr. kept promising that the NICU would update me as soon as they knew anything and keep me posted. Waiting for any news was torture. I tried to relax as they stitched me up because this was the first time during the surgery I felt like I could breathe normally and my BP was creeping back up. I kept asking the nurses if they'd heard anything yet but they hadn't. Neil was good to try and distract me by saying things such as "holy crap, your whole uterus is sitting outside your stomach." "And some of your other insides!" What a sweet guy!

We didn't hear anything the rest of the short time in the OR. They stitched me up and sent me to my room. Still no news on baby yet. This really scared me. It had almost been an hour and we'd heard nothing. Finally I made the nurse call the NICU for an update. Anything. She called and they told her to send Neil down to the nursery. Apparently there had been some miscommunication and they were waiting for us to call them. I sent Neil with the camera and his phone and threatened his life if he didn't take lots of pictures and if he didn't text me right away with what was going on. Over an hour later I finally got a text from Neil with a picture of my sweet baby.

This is the first picture I got of him but Neil forgot to find out all his stats. Finally I learned that he was little guy 6 lbs 4 oz and 18 inches long. I did learn that they had to pump a whole pound of fluid out of his little tummy. He wasn't passing anything through. But the best news came that he was completely stable and breathing entirely on his own. The only thing he needed was an Anderson tube in his nose, going to his stomach to suck out everything. Spit, air, etc. He didn't get anything in his stomach since he was obstructed.

After learning my baby was ok and getting pics of Neil holding him and such I was anxious to get down there and see him. I kept asking when I could go and I kept getting different answers. One nurse said 12 hours from time of surgery.....I did not accept this answer. That was ridiculous. Then finally I found the perfect nurse and she said I could head over as soon as I had feeling back in my legs and could stand up and take a few steps. I was very anxious for my spinal to wear off and to get up on my feet.

Then I got a text from Neil saying they were ready to transport Jax to Primary Children's since he was stable. I was glad he was able to go so early but sad that I wouldn't get to see him at the U. My legs were still numb and they weren't willing to wheel my whole bed anywhere.

Much to my surprise, the life flight transfer crew was an answer to my prayers. They brought my baby to see me on their way out of the hospital. The 2 women transporting him said that since he was so stable, and I was so close, they would stop at my room on their way and let me meet and hold my baby. Bless their hearts. What a wonderful blessing as I wouldn't get to hold my baby again for several days after that.

He snuggled right up and we were in love! I kept looking at how perfect he looked. Minus the tube in his mouth he certainly didn't look like there was anything wrong with him. He looked so....normal. The life flight crew said I could have 10 minutes with him but it really turned out to be about 5 minutes. But I will never forget those 5 minutes. I think they helped me get through a very hard week. They put him back in his cart and took him away, with Neil following.

After he left I was more determined to get out of there and over to Primary Children's since they were going to start doing tests, xray etc and determine when surgery was. I was only getting info through Neil through text messages and that wasn't fast enough. Once Jax was settled over at Primary's, Neil came back to bring me back. The nurse said I had to stand up and walk. It had now been about 18 hours since I'd eaten anything and they'd only let me have ice chips so far. So as I stood up the first time I almost threw up. I quickly sat down and tried to compose myself. Neil said that maybe I'd better rest a while longer. Because, throwing up right after having your stomach opened up, does not feel good and does not help your recovery. But I tried again and did it just fine. I transferred myself over to a wheelchair and away we went over to primary's. That wheelchair and the long hallway and I got to know each other very well over the next 4 days. I was back and forth about a dozen times a day.

I would stay over at Jax's bedside until I became too dizzy or weak. Because of all the fluid I was carrying my blood was diluted in half which caused me to be really weak and dizzy. Plus I had to pump about a million times a day. My recovery was quick and I had very little pain. I was so grateful to be able to focus my energy on Jax and not on my recovery. By day 4 I was walking myself down that long hall and said goodbye to the wheelchair.

Day 4 was one of the hardest days of my life. Checking out of the hospital was much harder and more emotional than I ever imagined. It was the first day I had to return to real life. Real life without my baby. It didn't really hit me until that day.......My baby was really sick and I was leaving without him. Before it was easier when we were both in the hospital...apart nonetheless, but still both in the hospital. I cried almost the entire day and could barely talk to anyone for fear of breaking down. My first moments outside the hospital were spent at Home Depot with my sister in law. And to put the cherry on top of that crappy, crappy day, a man came up to me in the aisle at HD and said "seeing you pregnant reminds me that I need to buy a baby gate for our stairs!"

This man was very lucky that I was stable and still on medication. I was able to laugh it off and it didn't really bother me. I couldn't help but think that if I had been able to bring my baby home with me, no one would have asked me that. They would have been able to see that I had a post baby belly. It sure makes for a good laugh now though!

What a ride that day and week were. A very hard week but a very special week.

6 months

6 months. Half a year. Sometimes it feels like an eternity and other times it seems like a blink of the eye. 6 months ago I had no idea if my little man would still be here. What his life would be like. I'm so glad he's here and in our family. I wouldn't trade him for the world. I love his guts. Literally and figuratively. I tell him that every night.

Because allergies run in our family(dang it), long before baby #2 entered this world, the allergist recommended we feed "it" nothing but breast milk until 6 months of age. This can lessen the likelihood of developing allergies. I believe her and I followed her advice. Except I cheated by about 2 weeks. I was dying to feed Jax some rice cereal. Not so much for his sake, but more for mine. Maybe to feel "normal?" Plus I know how much he loves to eat and how much/all of his life will revolve around food.

The rice cereal was well received. He didn't quite know how to keep it all in but he enjoyed the little bit he was able to swallow.

With his condition (I'll just refer to it as SG instead of typing out short gut each time) there is no telling which foods he'll be able to tolerate and won't tolerate. There are some that most SG patients don't do well with but only trial and error will show us. I have to proceed with solids in the same fashion as I did with Carter. One at a time, and only that food for 3-5 days. To make sure he will tolerate it. Not going into anaphylaxis shock like Carter, but diarrhea. So far so good with the rice cereal. And hoping that solid foods will slow the little guy down a bit. It's sad when you hope your baby might get constipated!

The tentative plan with solid foods is this: NO fruits. None. Those keep healthy movement...we don't need that. So for now, no fruits. Hopefully some day he can try them and handle them in small amounts. He can try some veggies. But not any that can cause gas (broccoli/ onions) and staying away from the higher calorie veggies. Veggies still have natural sugars and sugar is hard for SG people. So some veggies but not all. We've been told that the best thing to try next is Meat! Pureed, stinky baby meat. Proteins are good for his condition and less likely to cause mayhem inside! And unlike most babies, the dietitian said to add table salt to the meat if he doesn't like it. He doesn't absorb as much sodium as most people so some added salt is fine, even recommended. So this whole food thing will be interesting. Kind of intimidating to be honest.

I was never able to feed Carter normally either. We could never sneak him bites off our plates because of his allergies and now we can't with Jax either. I know it doesn't really matter, but it's something I feel bad about missing. Sneaking him a bite of my ice cream and cake or something.

I allow myself to feel bad only for a bit. And then I am humbled by this picture:

Bottle on the right: 5 mL of milk. That's 1 tiny teaspoon. When Jax was finally able to start eating by mouth, at about 10 days old, this was all he was allowed to eat, every 3 hours. Nothing more. It was almost a joke to put this tiny amount through a bottle nipple. One day he threw up and the Dr. took him down to 2 mL. Do you know how hard it is to measure that tiny of an amount? But he would take those 5 mL like a champ and burp like he'd finished a real bottle. Never been prouder!

The bottle on the left is where he is now. Full feeds. Full calories. 5 1/2 ounces every 3 hours. He isn't absorbing the full amount of calories but our hopes and prayers are that he will, and soon. He has impressed all his Dr.s and surgeons by eating full feeds by mouth. Some SG people never eat by mouth. Some are fed entirely by TPN(nutrition through veins) and others by a tube directly into their stomach. Jax is still on TPN to supplement what he isn't absorbing. But even that progress has amazed some. He started on 24 hours of TPN. 100% of his nutrition was being pumped into his veins, missing the digestive system. When we brought him home the first time he was on 21 hours. Today: 12 hours. And most likely he will stay here for awhile. His surgeon predicted 18-24 months on TPN. We're hoping for less but preparing for the long haul. Everytime we talk with someone new they are amazed that he is on as little TPN as he is. He's our miracle baby. Still a long road but we're willing.

To get Jax more interested in toys and rolling around we've been letting him experiment with different foods that will provide an extra "uumph" to his taste buds. First the carrot. Not impressed. (he's not sporting an off the shoulder outfit. We just leave one arm out while he is connected to his TPN)
Give the kid licorice.....much better! The only problem is that his older brother gets a little jealous and usually ends up needing his own piece.

His coordination to get this skinny piece of licorice in his mouth is still improving. He often misses but he gets that tongue of his and licks at it and makes the cutest noises.

And lastly, a Pajama shot. 13 lbs and 6 ounces of cuteness. We have fought sooo VERY very hard for these 13 1/2 pounds. And we're proud of them, and very thankful for them. Jax will never be the biggest kid in his class but that's ok. We wouldn't want him to be the biggest AND the cutest!

He is in the 3rd% for weight and 81st% for height. Our string bean. I am having the hardest time finding things for him to wear. His length is one size and his weight is another. He either gets to wear really baggy clothes or high waters. Hopefully we can even the playing ground between those 2 sometime soon.

Happy 6 months Jax. We are so grateful for you and so glad you're ours. We love every bit of you and fall deeper in love each day.

Love your guts!

End of October

Lots of pictures to finish off the month so I will start with Halloween and then go in no particular order.

Since we couldn't celebrate Halloween the way I had planned in my head we made the best of a crappy situation and delighted all the nurses with a cute monkey...

This monkey even had a felt banana to complete his costume. The hat hit his big old IV that was on the top of his head. Which I was glad for. Then when we look back on these pictures years from now, we won't even remember we were in the hospital.

We left the hospital for a bit and took Carter trick or treating around the neighborhood. He had a lot of fun and no hesitations at all. He even said Trick or Treat this year.

He wore the same costume this year, that he wore last year. Per his request. Although last year he called himself a dinosaur and this year a dragon. So really they were different costumes if you take that into effect. He is really smart and aware of his food allergies and takes them very seriously(luckily). At the doors where they handed out chocolate candy or stuff he knew he couldn't eat, he would tell them (politely) "I can't eat that, it has yuckies in it." We had to teach him that it was ok to accept the candy, just say thank you and we would trade it out for something he could eat at home. He kind of accepted that plan but would look over his shoulder at eat house that gave out "yuckies." I'm amazed at how well he understands the his allergies. He isn't the least bit tempted to eat stuff. And if it's something he doesn't recognize he would ask us first if he could eat it.

After trick or treating we came back to the hospital to see our little monkey. We put his costume back on for more pictures and then roamed the halls. Just to get out of the room for a bit.

Daddy with his dragon and little monkey.

Our little family on Halloween.

Moving on from Halloween...

This was taken a day or two before Jax went to the hospital. I thought he looked so big laying on his scale. We have our own scale at home and weigh him frequently. It use to be everyday until once again my mental health couldn't handle that. Now I have promised Neil to only weigh him twice a week. Being short gut weight is very precious and sometimes hard to come by so it's a constant worry for me. But I'm happy to report that Jackson finally hit 13 pounds. And 13 pounds has never looked better. Hoping to see 14 lbs faster than 13 but we'll see.

Along with everyone else in Cache Valley we hit up the Pumpkin Walk. We invited cousins to come along and Carter loved being with someone other than boring old mom and dad. The best part for him was riding the bus up there. Here are Tyler, Carter and Kayla waiting for the bus.

Our family in front of the Angry Birds exhibit. Carter loves playing Angry Birds so he got a kick out of his display.

My favorite part...the head slots. Kayla, Carter and Tyler. Carter is never thrilled about getting his picture taken but he really enjoyed it tonight and was going from cartoon to cartoon posing it up.

I love this picture. He has no idea who this is but he sure make a pair of seashells and a tail look good doesn't he?!?!

Here is Carter's new trick. I don't like that he's learned this trick but I do find it hard to not laugh. He now goes and hides in his closet if he is doing something he knows he shouldn't. I found him this day with the Ipad (I had told him no games that morning so he just snuck it instead). The morning after Halloween I found him in here with 3 boxes of candy. The best part is that he's learned to hide but he gives himself away so easily. If I call out his name he immediately answers and I catch him red handed!

Onto the birthday bash........

Carter was so excited for my birthday and has been for weeks. He would randomly come up to me through out the weeks and give me a big hug and tell me "Happy Burt-day Mom." So sweet. He kept asking me what presents I wanted for my birthday and I tried to give him some ideas/hints that would be easy for him to pick out. Once I got done with my list he would say "Don't you want a green race car for your Burt-day?" Or "Don't you want an ambulance with doors that open and has a siren?" And I'd tell him that in fact I didn't want those things but he should write those things down on his list for Santa. He ended up picking me out some lime green slippers, which I actually hinted about. He chose the final pair all by himself and kept asking me "Don't you like your slippers Mom?"

We had been planning on baking a cake together and decorating it some way fun. We had planned on making a Mickey Mouse cake (guess whose idea that was...) but with being at the hospital all day that just didn't happen. Instead we had a round boring cake. But it was still delicious. Thank you to Duncan Hines who doesn't put milk powder in their cake mixes. I just used their cake mix(usually I have to make everything from scratch) and added egg substitutes instead of real eggs. Then I added a TB of applesauce to keep the moisture in. This cake was so moist and delicious. Vegan cooking is really starting to become my talent.....

On to Mr. Jax

When he wasn't fevering he was actually very happy while in the hospital. Except when they had to place that darn IV in his head or arm.

Here he is at the ER. Playing with his favorite toy. He has come a long way with his interest in toys. Before he knew nothing of toys and therefore, had no need for them. Now he knows just what to do with them and they go straight to his mouth. And he actually holds onto them and is really starting to use his hands. He wants to grab everything now, including my hair. He kept pulling the Heart Rate monitor(red thing on stomach) off his stomach. I love seeing him improve with things like that and catching up. He's a quick learning. Now on to mastering rolling....

Here's to a great November and celebrating all we are thankful for. Which is a lot!

The streak continues.......

Jackson is back in the hospital. You would think we would be use to it by now and that it would be easier to swallow. It's not. It's horribly depressing. Another picc line infection. Another week in the hospital.

Our streak is not one to envy. So far we have spent these holidays in the hospital: Memorial Day, Carter's birthday, Neil's birthday, Flag Day, Fourth of July, Pioneer Day, Labor Day, and now my birthday and Halloween. I guess we really only have Thanksgiving and Christmas to make it a perfect 10. I am already so nervous about spending those holidays in the hospital. I may need to be admitted to the psych ward if that does happen.

Friday was my 3oth birthday. That in and of its self is depressing. But then to spend almost the whole day in the ER then be admitted to hospital almost put me over the edge. I had a fun little party planned for the 4 of us. Mostly for Carter's entertainment. Instead we had a short, mediocre party with the 3 of us.

The few minutes I'm not at the hospital each day are filled with constant reminders of who is missing in our house. I find his binkies everywhere. I fold his cute baby clothes that he doesn't get to wear. I walk past his dark, empty room and wish so badly he was home with us. Instead I drive down the street each and every day and spend the majority of my day sitting in a small hospital room with my baby.

Which leads me to the next problem. I have 2 "babies" that need me. And I can't fully meet each of their needs with them being in different places. Carter will go with me for part of the days and sit in the room and play with his Ipad or watch TV. But he gets bored easily and I can't blame him. Thank heavens for Grandmas who help me during the day and take a shift either with Jax or Carter. And thank heavens for wonderful nurses who dote on my baby and feed and snuggle him when I can't be there. He is the ONLY pediatric patient in the whole hospital. Goes to show how small this hospital really is. Last week the Peds floor was officially closed, now Jax has gone and opened it up! And since Jax is there, they have to lock down the floor so nobody steals him..........if someone did steal my cute baby I'm sure they would have him back in the hour after they learned of all his problems!

I am convinced that no mother or father for that matter, should EVER have to rush their baby to the emergency room. Know how many times I have had to do that with Carter or Jax? More times than I can count. Pretty soon I will have a designated parking spot out front of the ER.

And no parent should ever know the fear of having their phone ring in the middle of the night, see the hospital on caller ID and be told by the nurse to "please come quickly." Jax gave us quite a scare Sunday morning. Life flight or ambulance was almost called to give him a ride to Primary Children's. Luckily the problem turned out to be minor and he could stay in Logan. Which is good....I was still in my pajamas and I hadn't brushed my teeth.

Being a mom to a chronically sick baby is hard. Really hard. It's physically and emotionally draining. And I've learned that emotionally draining is twice as hard as physical. Sometimes I feel bad about complaining about my trial when it is obvious that others have a much heavier cross to bear. I know babies who shared a room with Jax at the NICU who have since passed away. I think of them and their families often. How hard and unfair life is for them. I cannot think of anything harder than losing a child. I was talking with a wise friend who has trials far beyond mine. I told her I could never complain or think my life was hard. She put it a really great way when she told me that just because it's not the "hardest" trial in life, it is still hard, really hard, and very real to me. Someone else having a harder trial does not make my trial any less, especially to me.

I remember when we were at Primary Children's last time and I was riding the elevator. I rode with a man, a stranger, who I guess was desperate for conversation. He said "Why are you here?" (At Primary's you can tell who is a visitor and who has children admitted by a special badge you wear.) I told him my baby just had surgery. He asked what for and not wanting to get into it I simply told him "He was born with an obstructed bowel." His reply...."Oh well that's easy." I just smiled and got off the elevator. Part of me wanted to scream and tell him that no, it's not easy. Jax's life may never be easy. And that 99% of bowel obstructions are easy but for some reason, we were in that 1%. I don't really believe in statistics or percentages. I know Jax proudly accepted this trial on the other side, but the mortal part of me still wonders "Why." Why him. Why does life have to be hard for a baby. I don't care that my life is thrown upside down. I care that he goes through so much. I would take short gut syndrome if that meant he could be healthy.

The other day I found some blogs of fellow short gut parents. I try to not look on the internet anymore about short gut. The statistics aren't always promising. Neil has made me promise to stop reading internet info.........but I'm glad I found these blogs. All about darling little kids/babies who live the life of short gut. And guess what? Among all the hospitalizations, infections, and etc I found happy children, happy families, and a new "normal" life. You can be happy with short gut. You learn to find a new "normal." Not the normal I use to live, but maybe a better normal. There were children who live with basically no side effects of short gut. There are others who still have TPN at 5 years old. There are some who moved across the country to be closer to a children's hospital. Those who sold their houses and quit their jobs to give their child the best shot at a healthy life. I realized you can even have more kids after a short gut baby! I realized we are very blessed. It can always be worse. Much worse. Modern Medicine and Science are amazing. We are so lucky to live so close to Primary Children's and to have the doctors we have. We feel that if we weren't lead to the Surgeon we had, Jackson's quality of life may have never been as good as it is now. I believe he was truly inspired by the things he did and the procedures he performed. All out of the ordinary and all beneficial to my baby.

This post may be depressing but a little therapeutic for me. Life is hard sometimes but that doesn't change the fact that I would and will do anything for my 2 boys. They are worth each and every heartache and tear.

To lighten the post up a bit: A cute pic of my boys, in the hospital, in their halloween costumes. They were the cutest kids there. And I can say that without lying since Jax is the only pediatric patient there!

Photo Shoot

We were bored one day and so I decided to take some very amateur shots of the boys. I had to bribe Carter with fruit snacks to get him to cooperate as he does not appreciate having his picture taken. But I must say, he was willing to do anything for a fruit snack and really got into this shoot. He was making up his own poses and I could barely get any normal shots of him.

I can't believe how old he looks. He was my first baby and now he's all grown up. I tell him all the time that he was my first baby and that I miss him as my baby but the truth is, I love him at this age. He's so fun.

One of his own poses. And an action we see frequently when he decided to dance to music.

Ever since his Uncle Steve taught him what an "elbow drop" is, he has been very aware of his elbows and a little rough with them. Thank you Steve.

He's all about the fake Cheese smile. I couldn't get him to smile normally for me.

I laugh when I see this pose that he chose.
This one is actually my favorite. He was so proud of himself for thinking of this position and I almost got a real Carter smile out of him.

Here is the picture that best reflects my first baby. All grown up.

I decided to snap some of Jax as well and try as I may, I couldn't get one smile out of him....

Notice the darling quilt behind him? My best friend Kristen made this for him and hand delivered it while he was still in the NICU. Before his take down surgery he wasn't allowed to use any of his nice quilts that people made, for fear of leaking all over them. Now I need to snap more pics of him with the other adorable quilts he has.

He and Kristen have a special bond in that they have both had major bowel surgery and they've both said it was quite painful!

Jax with his new monkey. Carter has a stuffed monkey that he sleeps with each night and so Aunt Linsey thought Jax should have his own. Carter tried to convince us that he needed to sleep with this monkey too.