2 lbs and 13 oz's and getting bigger by the minute!

This message is going to be short but sweet because we are just getting ready to ride back to mayfield to pick up the rest of our stuff! 

But I wanted to make sure and let everyone know this has been a GREAT WEEK!!! I got to hold Jake every day and so did Rory and Jakey-Boy is loving it. He even seems to recognize me now. When I walk up to his bed and start talking he will wake up and start squirming around because it is as if he knows he is getting out of the bed! The nurses are sure that he knows me, I'm a bit more questionable about it but I have seen him get excited to see me this week so maybe they're right!

Also... Jake is an enormous 2lbs 13oz!!! Last night alone he gained 3 ounces. They have added a lot of calories to his milk that he recieves, so much that is is closer to heavy cream than milk but it seems to be working great! The Dr.'s number one plan right now is fattening him up. The bigger he is the healthier his lungs will be and the closer he will be to get his hernias fixed. Dr. Minton, the head surgeon and the most brilliant Dr. we have met has told us that in his 30+ years these are the biggest hernias he has ever seen on a baby. I wont post a picture of them because they are quite hard to look at, but i will tell you Jake's body is pretty much broken up into 3 sections, a head, a tummy and a second tummy (all of which are the same size). Hernias are not supposed to be fixed until the baby is 6 pounds but we aren't sure Jake will ever make it to 6 pounds before Christmas if they don't fix the hernias, so Dr. Minton is preparing to fix the hernias at 4 pounds which is still a bit away but closer than 6 pounds. But now he is starting to get a 3rd hernia on his bellybutton but it doesn't look bad yet.

Something else that is really cool to watch is Jake's cartilage is forming finally so his ears are starting to form and stick out! He is looking more and more like Cayden every day. His dimple in his chin is all his own though.

2 of the best friends I have made in here are all getting released this week. I am going to be sad to see them leave but sooo happy for all of them! 

Mari... You have been so great to have here with me. Thank you for the encouragement and your example. I am planning on starting my own treat box for Jake's bed now that your chocolate basket will be gone. I wish the best for you and your Jake and little Jaden! Good luck in Chicago! Keep in touch!

Maggie... I know that I will see you again because Jake and Ezekiel are going to be best friends as they grow up! I can't wait to watch our little boys grow up and see who is taller then whom their entire lives!  Have fun at home with your first little guy! Don't spoil him too much :o)

Good luck guys at home and if you ever get bored you know where you will find us for a while!

Thanks for all the support everybody!!! We have the greatest friends in the whole world.

The Miracle Baby

This is a great day!!!!

                Jake is off the Jet Life Support machine!!! Up until now, this machine has essentially been doing all the breathing for Jake so that he wouldn’t have to breathe on his own, but now he is on the Drager Life Support which is a less invasive machine that allows Jake to do all of his own breathing… but if he misses a breath or takes too long to breathe the machine will give him a breath. We tried to put him on this new machine last week and he just wasn’t able to convert his co2 levels on his own so we had to go back on the Jet but hopefully not again!!!

The best thing about being off the jet is that Rory and I get to hold Jake once a day every day!!! And today was my turn. The new machine that he is on is flexible and unhooks from him, so that is why it is easier to hold him out of his incubator. The weirdest sight today was when they picked Jake up today to hand him to me they were able to unhook him from all of his tubes and bring him over and it brought me to tears to see him free from every wire! It was a shock to see him that way but it showed me that the end of all of this is closer than it seems.

 I got to cradle-hold him for the first time and he was awake the whole time!!! We just sat and looked at each other. I tried to sing some songs to him, and I think he liked it but I know he LOVES it when Rory sings to him. It was great to get to hold him today because with it landing on the weekend Cayden and Brookie were able to be in there so we have officially taken our first family picture as a family of 5! Cayden and Brooke were really patient with me as I had the poor doctors take multiple pictures off of every camera I had available. And luckily I did because after I deleted all the blurry pics and the ones where Cayden isn’t looking in the right direction we only had a couple left to choose from. Thankfully Jake was a perfect angel through the photo shoot!

Jake is also getting big enough to dress up now. I have to thank Merri Lynn for all the cute clothes she has made for him. It is always fun to pick out his outfit for the day and match it to his blankets. The nurse’s laugh when I tell them I want the blankets to match, but Jake just has to get used to things like that, I can be a bit crazy about organization and matching. Ashley was able to get a real onesie on Jake the other day by pulling it up over his feet and body rather than down over his head. He looked so cute! It was a preemie size from carters and it was still way too big for him but it made him look like a real baby. It covered up his monitors on his tummy and covered his scars and for a second I kind of forgot he has all of them.  Even though he is small, he is really starting to look so much better, and more like a real newborn baby.

We can now see that he has a dimple in his chin. We also can grab his arms and not feel his bones anymore.  His ears still don’t have any cartilage in them so they still lay flat against his head but they don’t look as big as they did 8 weeks ago. His feet look like little ski’s. He better beat the odds and grow up to be really tall or else he will have extremely disproportionate feet to his body.  He has always had nails but they are starting to grow now, and he has a really fuzzy head of blonde hair. For a while his hair was dyed yellow on one side because of the brown ammonia stuff they clean his head with before placing an IV in his head but that has now rubbed out. His Hernia’s are humongous!!! Bigger than any of the dr.’s have seen on a baby this small. We are hoping to get them fixed in July!

Jake is now moving his body more intentionally. He used to swing his arms randomly in every direction but now he will focus on his tube and then reach for it. Or he will grab your finger on purpose. It is so neat to see the difference in his actions. He definitely hates his breathing and feeding tubes. Since day one he has fought to get those out of his body… the problem now is that he is getting stronger and almost strong enough to pull them out, in fact last week he was able to pull his OJ tube out 4 centimeters which is a significant amount.  Roxanne had to reposition it and take x-rays to see if they got it back in the right spot.

Jake is a miracle baby! He is such a blessing in our lives and I just can’t wait to show him off to the outside world one day. All of his pictures can’t ever do it justice of just how special he is!

Sorry it's been so long...

Hey everyone, sorry i haven't had the chance to post anything on Jake recently. We don't have access to the internet at home so I am having a hard time finding time. But for a quick update I will let everyone know that on mother's day I got to hold Jake!!!!!!!!! It was the best feeling to get to hold him. The nurse's had to get special permission because he is still so fragile and because he is on a ventiltor that isn't the safest thing to move around. There were a lot of precautions taken and in the end i got to hold him. The best thing was that Jake was awake and we just stared at each other for over 45 minutes. It was GREAT!!! It was the best Mother's Day gift ever!

The other big news is that The RSV ban has been lifted so Brooklyn got to meet her baby brother on sunday! She was in heaven and jake was wide awake to be able to look at her as well. I was so excited to listen to Brookie talk to Jake, she just kept saying Hi baby Jake, Hi Baby Jake over and over! She got to hold his hand and touch his tummy. I was really happy for her. She has been asking when she could meet him. It was very nice! I only wish Cayden could have been there but he will get to meet him on Saturday! 

As for Jake he is now 1 lb 15 oz. He looks and feels much bigger to me even though he is still quite small. He is getting his intestines checked today to see if there is any obstruction that is stopping the milk going down which is stunting his growth, but as for now the X rays have all looked good. Which for me, I kind of wish they had found a problem so we could just get it fixed and end this waiting game but he just might have really premature bowels and it will just take time for them to mature so he can grow. 

Hopefully next time you hear from me we will have got to the 2 lb mark!!!

A Little Scare and a Little Temper!

Jake is an amazing little boy. His respiratory therapist today said that he has a little temper and doesn't like to be messed with a lot :o)! I say Good for Him!!! I'm glad he is a bit feisty and let's people know when he doesn't like being messed with. He doesn't cry when he is bugged, he just furls his brow and his face turns bright red and then he clamps his little fists and starts swinging his arms around like he is going to knock someone out!!! I love it! 

Monday morning I visited Jake like normal and everything seemed just fine. He had stopped getting milk through the feeding tube again because his belly was distended and his lungs get squished when that happens so they have to stop everything and let the belly relax. This is getting to be quite normal so I didn't think anything of it. But later that night I found out that the Dr.'s felt like they needed to intervene and get a specialists point of view, and in order to do that, Jake would have to be transported up to Primary Children's. This was not good news to me. I like it here and I have my schedule and routine and the thought of the rug getting pulled out from under me AGAIN was a lot to handle. I kind of lost it for a minute and went into panic mode of finding friends to help with Brookie and figuring out how I was going to make it to Cayden's play tomorrow, and figuring out how I would be back to Mayfield on Sunday in order to give my talk in Sacrament and figure out a hundred other changes I was going to have to make. Rory assured me it would be just fine but it's hard because he isn't up here, it's just me going back and forth twice a day and it's hard to get everything done each day without him. 

Luckily... The specialist from Primary's went over all of Jake's films and notes Tuesday morning and decided that there really isn't anything they can even do for him at this point because he is too small, so in the end they all decided it would be best to leave him here until he grows a bit more. This doesn't mean that Jake will never go up there, it's just means that for now he is in a good place and they just need to keep trying to feed him so that his body can grow. 

Well, that's about it for us right now. Thank you again to everyone who is helping us out through this crazy time!! Thanks for all the letters and cards and gifts, it means so much to us to have such wonderful friends and support! We don't know how to ever repay all the kindness we have received. You all are amazing!!!