Drastic Changes!!!!

Well for the most part the past few weeks have been wonderful! As you've seen from the pictures Jakey has grown a ton! Well half a ton of grams to be exact in a relatively short period of time causing us to be extremely excited! But all of that suddenly came crashing down Monday when his stats plummeted in a matter of hours. For those of you who know NICU lingo he was on high flow at 25% FIO2 oxygen with an SPO2 of 90! Which is basically PERFECT! Then suddenly skyrocketing to 85% oxygen with an SPO2 of 80% (horrible). 


The doctors quickly put him back on CPAP which he HATES!!! But he struggled throughout the night and by morning they decided he was even worse off than they thought so he got switched to IMV CPAP (which he HATES even MORE than the normal CPAP). Well after about a half hour Jake had had enough and he let everyone know about it. He started to scream his head off and when that didn't work he decided to hold his breath!!! Well because he doesn't have any reserve in his little tiny body, his heart all but stopped and they had to perform a minute of rescue breathing to get his heart and lungs working again. 


After this horrible episode the Doctors listened to Jake and put him back on CPAP but this didn't last long. After all day of struggling, Jake had an ecocardoigram (a heart ultrasound). From the first intense ultrasound we learned that Jake could have aspirated (swallowed throw-up) into his lungs at some point causing his pulmonary artery to restrict which then caused his oxygen needs to climb. This caused his heart to start pumping at twice the speed that it is supposed to, and when that wasn't working his heart actually started to enlarge itself. Jake was having heart failure and was very very close to having a heart attack or stroke! To stop this from happening he was immediately put back on the ventilators and given a drug called Nitric Oxide. This gas opened up his lungs and arteries and within minutes there was a major improvement on his stats. 


But there were lingering questions from the first ultrasound that needed to be answered. So today a new ultrasound was performed. But since Jake is such a wiggly little stinker (during the first test Jake was able to pull out his own IV's and almost his vent tube) for this ultrasound they decided to give him a medication that temporarily paralyzes him. It isn't dangerous, it just allows the doctors to do what they need to do with the least amount of interference and help from Jakey! But what the doctors found is a bit troubling. His lungs have Pulmonary Hypertension! This is super scary to me because who knows how this will effect what kind of life he will have. The Dr.'s have assured me that there is medication for this, and that most likely he will grow out of it, and that he will most likely be able to play sports with his friends, but they can never say it 100%! They do think however that this is a better reason for his lung issues then the aspiration. 


They also found another huge issue. His lung didn't form right. Everybody is supposed to have 4 arteries that come out of the lung and go straight to the heart. Well 3 of Jake's are perfect but the 4th artery decided to go it's own way and connect to some random vein that goes straight back into the lung. Therefore even on Jake's best day only 75% of the waste get's cleaned out. Now on a normal person this wouldn't cause anything to worry about... in fact it is more common in people than you would ever believe. But with Jake being 400 grams at birth and having chronic lung disease this is somewhat serious. 


So today after all this that we learned from the ecocardiogram, there was a point that we thought we were being transported up to Primary's for sure but after hours of waiting and praying (and a bit of crying and meltdowns in the NICU) we learned that the lung specialist up at Primary's wants to do the tests on Jake's pulmonary hypertension after he has fully recovered from all of this! This was a huge relief because he said we could combine his hernia surgery stay with the lung stay so Jakey wont be up there on two different occasions! But there are risks. To find out what medication will work for his hypertension the Dr will actually thread a catheter up into the lung and test medications and get an instant reaction from his lung and blood pressure. But anytime the lung is messed with it is scary and catheters alone are scary so AAAAAHHHHH! That's what I say. 


And with the hernias... try to imagine stuffing a full sized watermelon into your stomach and then try to breathe! That's what he is up against!


He is such a trooper! I could never go through what he is going through with such flying colors as he does. I am sitting in the chair all day doing nothing but crying and I don't have 11 tubes and IV's coming off of me. I have nothing to complain about, (but maybe I can keep complaining for the both of us!) Thank you Ali, Heather and Pam and everyone else in the NICU for getting me through today! I really don't know what I would do without all of you! I love you all!!!! 


Another day down, it feels like infinity to go still! Hopefully tomorrow will be better!

1650 grams... almost quadruple his birth weight!

Jake is changing so much now every day. He is now 3 pounds-11 ounces and cuter than ever!!! He is becoming more and more baby-like every single moment. So much has changed over the past 2 weeks I thought I would quickly share it with everyone!


1. He now opens his eyes all the way and looks around the room as if he is checking it all out. He has good eye check-ups and bad eye check-ups still. Even after his laser eye surgery he isn't out of the woods with his eyes. They ate constantly watching the blood vessels in his eyes to make sure they grow where the doctors want them to grow. But he is definitely making eye contact with us and seems excited to see us when we walk up to his crib! It's as if he knows that whenever we show up he will get picked up!


2. Going with the last one he is starting to recognize things and us. We can tell that he loves it when Rory and I get there because he sees us and then starts flailing his arms around and sometimes he forgets to breath he get's so excited. His eyes get enormous. 


3. He also loves his new crib and mobile. The mobile has wild colors with weird looking animals on it that spin around and Jake just lays there and watches it go around and around. 


4. He also has his boppy pillow in his crib now that they can prop him up on so he can see people walk around as he's awake. Jake loves this. He is very inquisitive and likes to be a part of everything. His crib is right by the nurses restroom so everyone always makes sure to stop and talk to Jake on their way in. They have talked about moving him to a quieter location but I wonder if he would get bored anywhere else. 


5. Jake has mastered the art of sucking on a binky even with 2 big tubes sticking out of his mouth. It amazes me. He has now started receiving 1 ml of milk through a syringe every 3 hours. This helps him learn how to swallow and it also wets his throat a bit. The Anderson tube is still sucking out everything in his tummy but the feeding tube that he has bypassing his tummy is now giving him 10 ml's per hour which turns into 8 ounces of hind milk a day. 


6. Jakey is receiving less and less medical intervention each day. The doctors monitor every single thing about him and as he gets older his body is starting to function better and better on it's own. 


7. Jake is also starting to control his body motions. He can turn his head all the way from one side to another and can also push his head away from me as we're cuddling. His neck muscles are getting stronger and stronger. He is starting to have this habit of pulling out his feeding tube and Anderson tube every day which is NOT a good thing. But it is kind of encouraging to me that he realizes that he doesn't like the tubes there and he wants them out. The problem is that the nurses are running out of ways to keep the tubes down his throat. He is finding ways to get the tubes out no matter what technique they use to put them in. 


8. He is also reaching out to hold our fingers and this toy that I bought him. I am so excited when i see him interacting with things. My worry from the beginning was that Jake wouldn't be a normal baby, and that he would have everlasting problems that would cause him to be miserable his whole life. But I am getting more and more hopeful that he could be very normal. 


9. Jake is 2 more steps away from just being on oxygen. Right now he is on oxygen that his hooked up to a humidifier. It stinks because sometimes if we move him before emptying out the condensation we flood water down Jake's nose and then his heart rate drops and it really upsets him. So I cant wait to get rid of the water portion! 


10. Jake CRIES!!! and it sounds sooo good. Sometimes I wait to put the binky in his mouth because his cry sounds so good to me. I like that there are things that make Jakey really really mad! That means that his brain is developing right. It's a really good thing that he knows what he likes and doesn't like. 


We think we're about 2 weeks away from Jake's move to Primary's. That is going to be a huge change for our little routine that we have mastered over the past 3.5 months. But we know that when this surgery is over we will be able to start the long recovery and that will lead us closer to bringing Jakey home. I know September and October feel like a long way away but to me they are coming a lot faster then I ever thought they would. 

Today is my DUE Date!

Well it's 12:08 am June 28th 2011 (My official DUE DATE!) I can't believe it has come and I already have a 3 1/2 month old baby. You know when babies are born at the hospital, I've heard it time and time again when new moms come in, and their worried about how long their baby will stay in the NICU... The answer that all the new moms get from the hospital is..."You can plan on taking your baby home around their due date." 


Well Jakey is the exception to the rule BY FARRR!!! We went over our new revised game plan today with Ashlee and the doctor and the new news is not looking good. Right now I will feel lucky if it is September when he comes home. I feel like Jake has kind of come to a stand still with his growing and progression. He can't quite get past all of this CPAP stuff, and at times today they were even thinking about going back on the life support just to give him a break for a week and then try it again. I don't think I will take it very well if they have to intubate him again. He just got his voice back from the last intubation from his eye surgery. It makes me feel like a really bad mom when he has to go through all of this stuff that I know is painful!


He now weighs 3 pounds 5 ounces. He was up to 3.6 but then has since lost an ounce and can't quite gain it back. The doctors think it is because he is awake more now therefore he is burning more calories during the day. They've always told us the more sleep he gets the better, but I never wanted him to sleep as much as I do now.  


I am so thankful for Rory. I am so thankful to come home from the hospital and find that all the clean clothes are put away and not only that... there is a fresh banana cream pie in the fridge waiting for me.!!! I know I couldn't have gotten through this without him. Back when the doctors didn't think that Jake would live, a good friend of ours told us that we needed to be there for each other and that it was going to be a challenge each and every day because our tempers would be short and it's always easier to take it out on the ones you love. He also said that our true selves would come out through this life changing experience. He offered his help for us if we needed some counseling at any point. Now I can't say that we haven't nipped at each other from time to time about silly things... but I can say I have never thought we needed that counseling that was offered. Rory has been the foundation that I have needed by me. We not only have had to deal with one of the smallest babies to ever live at UVRMC, but we have gone through living apart for 2 months, a move to a an entirely different city, and Rory finding a new job all at the same time. I KNOW I couldn't have done this without him. 


Jake is a blessing beyond words. He has taught us that good things are worth waiting for and that blessings come in all sizes! I have this frame next to my computer that says "From small beginnings come great blessings" and I believe it with all my heart! 


I know that this "due date" hasn't really gone the way it was supposed to... but I can say that I have learned so much about myself, about Rory and about our strength as a family through this experience. And in a really weird and sad sort of way and with a heavy heart I'm a little grateful for it. And I just have to keep telling myself "I CAN DO THIS!" and "WE CAN DO THIS IF WE JUST DO THIS TOGETHER!" And one day we will get to bring our little Jakey home. 

Jake had Eye Surgery and a big milestone!

We got tossed a curve-ball yesterday when we learned that Jake had to go in for emergency eye surgery. I will back-track a bit to get everyone caught up...


Back when Jakey was born they told us that it is pretty common for preemies to have eye problems because their eyes are not ready to see light and this causes their eyes to require glasses. They also went over the possibility with us that Jake might require eye surgery to save his eyes. What happens is that when a preemie as small as Jake is born they require a ton of Oxygen to stay alive, but this oxygen also cause eye problems. This was one of those life or death decisions Rory and I had to make the first week of his life. We knew the ventilators were necessary but we also knew it could damage his eyes and obviously we chose to go ahead with the ventilators anyway. 


What happens is the oxygen causes the blood vessels in his eyes to overgrow and soon they start growing crazy and not in the right places. I try to imagine it like they are weeds. Nine weeks ago, eye doctor, Dr. Carver started looking after Jake and checking him every two weeks to check the progress of his eyes. At first they seemed great, just premature. So he would come back every 2 weeks as long as they were looking OK. Then 3 weeks ago he noticed that they were starting to deteriorate. He declared they were stage one for retina detachment and that he would come back in one week to check if they had gotten worse or stayed the same. Up until Thursday night at 10:00 they were just stuck at stage one and seemed pretty good. But Thursday night we got the call that suddenly Jake's eyes had deteriorated so quickly that he was stage 3 and needed emergency surgery in the morning. The blood vessels were encroaching under and around the retina and they needed to be stopped immediately so they didn't detach it. 


Thankfully Dr. Carver was able to squeeze Jake into his day and Jake's surgery was a big success. Dr. Carver used a laser to zap each blood vessel to stop it in it's course and cause the eye to stop producing a secretion that causes the vessels to overgrow. He zapped the left eye over 2200 times and the right eye just about 2100 times. All through the surgery Jake was given a medication that paralyzed him. As you can imagine one small move with the laser in the eye could be really bad. This was a bit scary to handle but everyone assured us that it was common to use and that he would be fine. They also dosed him up majorly with pain medication. 


This surgery was not without negatives though. Because of the surgery Jake lost most of his peripheral vision. He shouldn't really be affected by this because he will not know what it is like to have peripheral vision so it should just seem normal to him. Also he will never be able to be a pilot because peripheral vision is mandatory, so we will not be focusing his dreams towards airplanes :o).  The Dr.'s assured us that he will still be able to play sports and drive a car and do everything else normal, he will just learn how to compensate for not having that sight. He was able to save 70% of Jake's eye sight though which we are very grateful for. Jake was days away from being permanently blind!


Jakey-boy keeps receiving one blessing after another after another and we couldn't be more grateful! He is such a little trooper. After his surgery they said he would really be out of it for a few days and not want to move around much but just like he always does he seems to surprise everyone. The night of the surgery Jake was awake and moving around when he shouldn't have been and already he realized that the dumb ventilator tube was back down his throat and his first thought and intention became how to get that tube out of his mouth. He is really funny. From the day he was born he has hated those tubes in his mouth. He should think they are just normal... but not Jake, he wants them out NOW!


Today is Jake's 3 Month Birthday, we weren't able to hold him because of all that happened yesterday and we really couldn't talk to him much because the nurses don't want him wiggling around, so hopefully we will have a better time celebrating with him tomorrow, but Rory was able to make Cinnamon rolls for all of the staff and we sort of celebrated with them. 


We couldn't have gone through any of this without the wonderful Nurses, Respiratory Therapists's and Dr.s there at the hospital. I love you all!!! Thank you Thank you Thank you for saving my baby!

3 pounds!!!

Jake is such a little sweetheart. He has been one of the best things that has ever happened to Rory and I. We now are completely hooked on the philosophy that good things come to those who wait! And we will wait forever for this little guy to come home with us some day! 

But we don't seem to have to wait as long for him to grow these days! Jakey-boy is now 3 pounds 2 ounces and doing GREAT! To put it in perspective it took Jake almost 2 months to reach 2 pounds, but in the last 3 weeks he has shot up to 3 pounds!

He is also now doing a bit better with his digestion and pooping! I can't wait to get him up to Primary Children's to get his hernias fixed. They are now the same size as a tennis ball! He has to be 4 pounds to get the surgery so it wont be long now. Right now the poor little boy has a hard time going to the bathroom because literally most of his intestines and tummy are hanging between his knees so he has nothing to push against when he needs to poop, therefore he doesn't poop very often and therefore he doesn't digest enough to grow as fast as they would like. 

But as soon as his hernias are fixed... and he gets well enough to be transported back to Utah Valley, then we can start weening him off of the feeding tube and I can actually try to nurse or give him a bottle. And as soon as he can regularly drink from a bottle he can come home!!!!!!

I can't wait! I bet my van can't wait either. It has probably one of the most abused and neglected things through this whole adventure. Rory says I have been very good to give my best to each of my kids and him but i have been completely neglectful to my mini-van. I never allowed food in my van before this, and I was always pretty on top of cleaning it out and keeping an empty garbage bag in there, but now... It is a dreadful sight! And on top of the messy grossness on the inside.. I got slaughtered by a rock on my way home from the hospital last week and it took only one block for it to crack across my windshield! So now it has to go into the shop tomorrow. The poor van!

We moved into our new house this past week and it went really well, and it is also so nice to all be back together finally! We still have one van load left and a garage sale to have at the old house and then from there we should be done with it. It has been great to have for the past 7 years but we were definitely growing out of is and my kids love the new neighborhood where there are kids in every home! We couldn't have found better neighbors anywhere!

Well Jake, if I could say anything to you right now, I would tell you how much I love you and how stinking cute you are and that I can't wait to watch you grow up because I know you have big things planned for you and I am excited to see what those things are! You are our little miracle, who has taught us more than anyone will ever know! I want you to know that from day one you have had this light in your eyes and everyone can see. You proved to everybody from day one that you are a fighter, that you know what you want, and that you are worth fighting for! And I love it!!! Love you Buddy!

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!!!

6 Weeks Old!!!

Jake is now officially 6 weeks old and for the most part has had a good week. He is finally growing a bit better now that he is able to get some milk through his feeding tube. He weighs a big fat 1 pound and 11 ounces which still sounds so little but when looking at him we can actually begin to see a difference. If you think about it, he has just about doubled his weight and size since he was born. And because their wasn't much to double it makes a huge difference. 

Jake's lungs are still just an uphill climb. They have stabilized since Monday which is great news but they aren't as good as what we had hoped. But the Dr's are glad that he made some improvement and they hope with each dose of the steroid he will improve more and more. The hernia's are still the other big issue. We did have the specialist come and look at them. He and Dr. Gerday still agree that it would be to risky to fix his hernias and they don't think the operation would last long; that his flesh in his tummy is still too weak and it would just tear again creating two new hernias. So for now we wait! 

Cayden and Brooke now have been able to see Jake which has been great! Brookie loves looking through the window and watching Jake. In fact we have to drag her away from it when we're there. Cayden was surprised at just how small Jake really is. He had a bit of a crash course with a doll to prepare him for all of Jake's tubes and I think it did help because he has seemed to calm down a bit when we talk about Jake. Sometimes I think Cayden is a bit too smart for his age. It really took some time to prepare Cayden for his sick little brother. He is really worried that Jake will be in a wheel chair or that he won't be able to play or talk. All we can tell him is that Jake is so strong right now and only time will tell but that everything looks good so far with his brain and body. I will be posting new pictures soon of Jake with Rory's wedding ring and a new dollar bill picture that we took. 

Thank you everyone for all the fun times this week: going out to lunch and dancing!!! It has been fun to get together with everybody!!! Thanks for your support and friendships!!! We love it!

Baby Jake Update

This is one of those days when I just am trying to be strong for everyone around me but inside I feel like I'm falling apart, and really there isn't any big explanation for it. I had just gotten off the phone with Ashley (Jake's nurse) today and I walked into the store when one person walks up to see how I'm doing and I burst into tears! I think mostly I am just exhausted. Physically, emotionally, mentally exhausted. I am trying to be in a million places and get caught up on a million things all at once and all the while stopping every 2 hours to pump. (I had this goal to make home made real nice thank you cards for all of you who have helped us out so much and as the weeks have gone by I am realizing that they are not getting done, and I feel awful about it, so I apologize for everyone who deserves a card and has not yet received one.) I don't have quality time with any of my kids, and trying to stay up to date and in contact with all the nurses and doctors at all times is extremely important so that we know what is going on, especially on days when neither of us can be there with him, but at the same token it is taking a toll on how much I can handle. And I seem to catch myself taking it out on everyone around me, especially my perfect kids that I love more than anything. I come home every week to be with and see Cayden and then I am so stressed out the whole day and have a list a mile long that I can't enjoy it at all. It's just seems worse on Jake's bad days like today.

Jake isn't having a great day. He was given some steroids last week that greatly improved his condition and everyone was real excited to see what progress he had made. Since the steroids have now wore off he has regressed back to the sick stage he was at before. For me, this has been horrible terrible news that has greatly affected my entire day. But when talking to the doctors tonight, they told me that this was not unexpected, and that they are just glad that the steroid did show them that it IS possible for Jake's lungs to improve. The problem with this steroid is that being on steroids at such a little size can cause neurological damage and also some intestinal problems. Therefore we can not give him the steroid for another week or so, and we just have to sit and wait for him to get a bit bigger and more mature. Other than that, his milk feedings were temporarily stopped to rule out any infection, or implication that the tummy was affecting the lungs, and now they have been ruled out so his feedings have continued which is always good news. He is receiving 3 ml every 3 hours. 5 ml is a teaspoon so 3 is not even close to a lot but it is better than nothing.

A good thing that happened today is that Merri Lynn showed me that I can get comments on here. I have always just had barely enough time to post a comment and then run back home to be with Brookie, I never took a second to notice that i can actually receive comments from people. I was able to sit down today and read what everyone has been writing.

You can not believe how grateful I am for everyone's support and love through this time. Support from people I don't even know but that give me hope that we can conquer this, and that we will eventually be okay. I feel like my life, that was once (for those who know me) perfectly scheduled out every single day and that I was in complete control of, has now been turned upside down on it's head and I can't control any of it. This has not been easy for me. I feel as though some days I am drowning and I have to fight to keep it together for my family. I can't even hold my little baby and he is almost 6 weeks old, and today they are telling me that the thought of holding him is even further away. I just don't know if I am strong enough for this sometimes. I know that the Lord doesn't give us any trial that we are not strong enough for, but I feel like I am needing some extra boosts. It's hard for me because I am not one to admit to defeat, so when asked how I am doing I like to put on a happy face and show that I am strong and I can get through this... but on days when Jake is sick like today, I feel so sick inside and I feel like I am mostly trying to convince myself that he will make it.

I know Jake is strong!!! Stronger than I will ever be and I know he has a reason for being here. I can't wait to see what he can do as he gets older, but for now I guess we just wait.

Jake's still just hanging out!

I wanted to put in a quick update. Jake is doing great! They are starting the process of weaning him off of his ventilator onto another less powerful ventilator which is great. He has a few weeks to go with that but at least there is progress. He is handling his feedings better now and they are actually getting bigger which is also great. He pooped two nights ago which is something I never thought I would celebrate so much in my life. I never knew how much our Intestinal system affected every other part of the body!

Jake has 2 massive hernias. So big in fact the nurses say they have never seen any get this big on a baby this small. The Dr's here at UVRMC do not perform bowel surgeries so they have been in contact with primary childrens and at this point the D's have all decided that he is too small and delicate to perform anything yet and they also think that the hernias look quite healthy as far as no kinks, or hardness. They are soft and can reduce back up into his belly quite easily. The problem that we are having with the is they hurt him when they get reduced but if they dont get reduced then gasses and poop are getting stuck down in them and it makes it harder and more uncomfortable for him to poop! Anyway, that is one of our major concerns right now.

Brookie and I are doing good! I can't thank all my wonderful friends and neighbors enough for all the love and support they have given to us. I couldn't have gone through this and mostly wouldn't be able to visit Jake without them!!! Thank you Thank you Thank you. And I love all my facebook messages that I get. Especially on rough days it is so nice to read all your comments, it reminds me that Rory and I are not alone in this.

If anyone knows of anywhere to find soft, button-up boy doll clothes let me know. Jake is to the point that as long as he doesn't have an IV in his hand he can wear a shirt, (although they look like dresses on him)!!! The poor little boy! His first room will have pink walls and his first outfit is a dress!!!

Happy First Month Birthday Jakey!!!

Happy One Month Birthday to Jake!!!

                I can’t believe a month has already gone by. When Jake was born he weighed 430 grams. He is now weighing around 680 grams, which is approximately 1 pound 7 ounces. He has had a major PDF heart surgery, 8 blood transfusions, and countless IV lines put in and out of his little body each and every day. Art lines and Pic Lines put in every extremity.  His poor little heals have been poked to death because his art lines never work. He has 2 major hernias that the doctors are becoming more and more concerned with, and they hurt every time they get pushed back into his little body. Jake has been switched back and forth from ventilators because each one fixes different problems so they have to experiment to find out which one will work the best for Jake. He has gone days and weeks without eating at a time. He has developed a Chronic Lung Disease that will be a long term problem that we will have to face as we bring him home from the hospital, meaning he will most likely be on oxygen when he comes home.

And yet with all this little guy has gone through and is going through, he doesn’t cry. (I’m sure I’m crying enough for the both of us.) He has a feeding tube and ventilators going down his throat so even if he did try to cry nothing would come out because they run right through his trachea. But he barely ever tries to cry. He just lays there in his incubator and looks around at everyone with his big blue eyes, with hope and love pouring straight out of them. I wish so badly to be able to take his place. I know I wouldn’t be as tough as he is. I would cry and scream the whole time I’m sure. We hear a lot of crying when we are in the NICU from other babies, but not from Jake. He is getting a bit stronger now and can make a mouse-like squeak, but it is never in anger or sadness like a cry, it is more of a “Hey what’s goin’ on guys!”, or like he is trying to talk to us. I’ve never even seen him open his mouth like he is crying. He yawns a lot and that is about it.

He is so strong. I could never be that strong. I was having a really hard day last Friday because I just couldn’t believe that my body had done this to him. I feel so bad and responsible that he has all these life-threatening things that can happen to him at any moment and that he was lying there suffering painlessly in his bed. Heather the nurse had to remind me that Jake doesn’t know any better. All he knows are these tubes and shots and pokes and lights and people coming and going all day. And even though his is very drugged up and they don’t think he can feel any pain, all he knows is suffering. I can’t wait till he is home and we can show him how real life is and how fun and comfortable it is. I just want to be able to hold him one day and not have to put him down after 5 seconds. I can’t wait till I can actually really touch him and hold him so I can tell him that everything is going to be okay, because at this point it is still too early to tell, he is just so fragile and little.

Jake is TINY!!!

It is really hard for everyone to really grasp how little he is. I don’t think anyone can really comprehend it unless you see it with your own eyes. Pictures just don’t do it justice at all! I’m working on some fun picture ideas but we have to be so careful about the germs that he comes in contact with so for tonight I just tried to find ways to explain his size better.

1. His hand spread open is the size of my thumb nail.

2. The widest part of his thigh is skinnier than my pinky finger.

3. Jake’s head is about the size of a tennis ball, smaller though.

The things that he has that I think look huge comparatively to his body are his fingers and his feet. He has long feet. At least they look big compared to his legs. And his fingers are so long, they look like basketball hands already. The doctors think there might be a chance that he will play sports some day. It all depends on what or how many preemie conditions he develops. I hope he can be a normal boy and play anything he wants.

His one month birthday is Today!!! and I know there isn’t really such thing as a one month birthday, but coming from a perspective that we never thought he would make it this far or have a reason to celebrate, I am going to take every birthday celebration I can get! Hopefully Jake mostly sleeps through this little birthday party, because the more sleep he gets now, the stronger his lungs and body can be for the next party we throw at his 2 month birthday party!!!! Happy Birthday Jakey-Boy!!!

How I'm I doing...?

I’m doing pretty good.

                Everyone keeps asking how I’m doing. I’m not going to lie to you all, this sucks! and is extremely hard. I am struggling with an overwhelming feeling of guilt and responsibility. I have been told by people at the hospital that what I'm feeling is normal. I know that I did nothing to cause my high blood pressure and I know that it could happen to anybody... but I also know that it is MY body that did this to him. If he was in someone else's stomach he would be just fine. So Yes I am struggling with some guilt especially on days when he isn't doing as good as today. I know that if I am not able to work it out of my system that there are people I can talk to, and I am up for that, but I also feel like I am coping pretty well considering the circumstance so I might be OK in the end. 

                I feel like I am never in the right place. I feel guilty leaving Brooklyn with friends every morning and night. But if I don’t get to the hospital to be with Jake, then I feel guilty for not being with him. And I can’t even see Cayden Tuesday through Friday, so I always feel guilty about not being with him. I think he understands why I’m here, but what if he doesn’t? What if deep down inside he feels like I have left him, or he feels that he is not as important as my other two kids. I hope when all this is over our family is able to get back to normal; which is super busy but together!

                I am feeling ok as far as my physical health. A bit tired sometimes because of all the stress, anxiety, and just the emotional roller coaster that I’m on; and it doesn’t help that I have to pump 8-9 times a day and that pumping sometimes interferes with my good night’s rest! I am happy to say that I am now off all of my medications for high blood pressure. I hope to not have to worry about high blood pressure ever again. That was scary!

So for me, I’m feeling overall good. I will have to admit Pepsi is a MUST staple in my diet right now, but the nurses have all said, “Go for it!!!”

My body is slowly getting back to normal. Normally when you have a baby you lose a bit of weight right after the birth because of the baby. Sadly when your baby is only 15 ounces, you don’t lose that much weight.  Luckily I was much better with this pregnancy and didn’t gain as much weight either. Hopefully within a couple weeks I will fit in my normal pants. It would help if I was allowed to exercise, but in all honestly, I don’t know when I would even fit that into my crazy schedule.

I do plan on dancing in the spring performance. I have been having fun with dance all year and so I have decided to set this goal to get back on stage and have fun with it! I don’t think it is healthy to completely stop living my life because of what has happened. In all honesty, I know that I need to visit Jake as much as possible, even though there really isn’t much I can do with him other than change his diaper and take his temperature. I am excited every time I get to be with him, but even the doctors told me that I need to take one day off each week to refuel my energy tank.  This is A LOT to handle and A LOT of stress comes with Jake being so little, so I think dance is a great way to relieve some of the stress and I love the music. Music has been very therapeutic the past few weeks.  So just cross your fingers that I don’t totally screw up the dances or the ladies dancing around me!

3 weeks old today

                Jake is such a cute little boy. It is hard to not fall in love with him at first sight. He has all the nurses wrapped around his tiny fingers! He is three weeks old today and while he is doing better than expected, that’s not to say that we are not very worried about things. Jake has very sick lungs right now that the doctors are being very delicate to fix. Not giving him medicine could be detrimental but the medicine to give him can also cause problems. He is also switching back and forth from different ventilators, trying to figure out which one is going to be right for each individual day. We are learning that it is a delicate balance every single day in the NICU. The doctors, nurses and parents have to weigh out all the pros and cons for every single decision made. There are things that I am learning that I wish I had never ever learned. It is amazing all of the little details that never get missed.

The nurses have been amazing through this whole process.  I can’t thank them enough for their love, attention and patience with not only Jake but me as well. It is scary as a mom to leave your baby in the nurse's care, especially in this situation; I am so thankful that the nurses have been so wonderful and attentive to all his needs. They are so smart and truly know what they’re doing. 

Jake is very little. You can easily compare him to the size of a barbie. There are only a select few amount of people who will ever witness the things that Rory and I are becoming accustomed to. Jake is a very special little boy. It is hard for me to sit in the mom room at the hospital and listen to the other moms come in crying and complaining that their 6 pound baby will have to stay one more day in the NICU! It takes all that I have not to jump up and start yelling at them. We all need to stop complaining about the little things in life and remember how blessed we all are to have healthy babies and kids, even if they have the slightest problems, or they don't do everything perfect the first time, there are worse things in the world to complain about than one measly day in the NICU.  I think that will be one of my biggest lessons learned from this experience. I know I can be and have been hard on my kids in the past, and I expect them to be ust perfect all of the time. I now am going to be more appreciative of every day I get to spend with them and not be so picky about the little things! I love my kids and Rory more than anything and I am going to try harder each day to show that love!

What a scary weekend!

Well Saturday started out like any normal Saturday, well at least normal for right now. That ended abruptly when we got to see Jake and they told us that they had found a problem. Jake was born with a hole in his heart that closed up with the help of medication right after he was born. Over the course of three days the hole had re-opened and was flooding blood throughout Jake's little body and especially throughout his lungs. Before we new it, Jake's lungs were clear filled with fluid and the best solution was immediate heart surgery. I can't tell you how scary it is to be told that your 10 inch long baby with the heart the size of a dime is going in for heart surgery. The doctors assured us that they have performed this surgery many many times but that there are always risks. They told us the risk of death, the risk of infection from the surgery and even the risk of losing Jake's vocal cord strength because of this surgery. Thankfully Rory was there with me and together we decided that we had to go with the surgery, that the risks of him losing his life without the surgery was just too high. Thank goodness my parents had gotten there to meet us for lunch and they were able to take Cayden and Brooklyn home with them for the weekend. 

The surgery started and every minute felt like a lifetime. The doctors predicted that it would take about an hour but in the end it was more like 3 hours. They said it took longer because his heart didn't form the same as other hearts had formed and they had to make sure they were clamping the right hole and not the aorta. The problem is that the nurse told us that they were worried about this while they were trying it out. I wish she would have waited until after they had figured it out rather than before. But either way it worked out, Dr. Mitchell clamped the right thing and the surgery was a success. Very scary and frightening but it was a success. 

Now we are still waiting for the lungs to clear up. His little lungs are just not strong enough to pump all the fluid out on there own and the fluid is starting to become a problem. He has now started to be on another medication that is supposed to break down the fluid and help it get out of there and we hope by Friday this has worked.

Being in Salem without Rory and Cayden is very weird and sometimes hard but we know it is best for Cayden to keep him in school and it would just be too much driving for Rory to go back and forth. I want to thank all of you who are helping us out at this time. I have always had a hard time asking for help, in fact I really don't like asking for help, but this experience it teaching me that sometimes we can't just do everything on our own, and we need the help of others. I just want everyone to know how much it means to me. Thank you!!!

His 2 Week Birthday!!!!

We’ve made it to day 14!!!

                The doctor’s told us the very first day that there would be some major up’s and down’s during the first two weeks of Jake’s life. Brain bleeds, Intestinal problems, heart stopping and lung control were the four major things that they said would highly influence the life that Jake may or might not get to have. So far I can say that the doctor’s are not only surprised at how well he has done by not getting any huge problem, but they are quite thrilled at the lack of any of these major obstacles.

Today we were told that Jake has a 95% chance of not only living --- but being quite normal as well. Going from a 5-10% chance of living to a 95% chance is a major triumph for us. We can’t believe how much our lives have changed in the span of 2 weeks. But we are proud and excited to say that Jake is doing remarkably well!!! The doctor’s think he has a long time left in the NICU (like August) but they are giving us idea’s of when he will be coming home to our family, and that is a good sign to me.  

Hoping for Poop!

The Doctors’ Outlook and Warnings!

                Jake received the very best doctors anyone could ask for. Dr. Minton is one of the leading neonatologists in the country and travels around the world teaching people how to raise preemies. Dr. Gerday has been honest and important to us from the get-go. We knew and felt like these 2 men have been honest and optimistic with us from the very beginning. They never said this was going to be a walk in the park, infact they told us this might be a total nightmare rollercoaster, but that they would be there to hold our hands through the process, and that they could answer any and all questions we might have.

                Jakes nurse’s. What can I say to show my gratitude to all of his nurse’s. They really do love their job and they really do love Jake. It shows every time we are there to see him.  He is the very best care with all of those women. Day and night they are there to answer our questions, to comfort us and to cheer Jake on with all of his accomplishments! Thank you Thank you Thank you too all of you who have been there to hold our hands, laugh with us and cry with us.

Cloudy outlook for Jake’s first 10 days.

                Preemies with Jakes age and weight are prone to getting brain bleeds in the first 10 days of life. Mild ones, we were told, aren’t that bad and can be treated, but stage 3-5 brain hemorrhages are life threatening and all too common for 1 pounders. This didn’t settle well with Rory and me and we were determined to not let Jake get one of these. In all honesty there was nothing we could have done to prevent or stop one, but we were determined to do so. Fervent Prayer was all we and others could do and we want everyone to know that we have felt every prayer and thought that has come our way. We can’t even begin to explain how much we appreciate all of the love and kindness that we have received and felt. Our testimonies of prayer have quadrupled in size over the span of 2 weeks. We truly believe that prayer has not only gotten us through, but is also be the reason that Jake is doing so well and has such a good outlook.

                Well tomorrow is day 10 and not one small or even minute brain bleed has happened which has totally stunned Jake’s doctors. We are soooo excited about this, words cannot explain.  True blessings after blessings keep rolling our way and we know it is due to our faith and all the prayers that have come our way. Thank you Thank you Thanks you!!!!

Two Major hurdles!

                One of the problems that was predetermined in an ultrasound was that Jake had an echogenic bowels, or bright bowels. This means a lot of things. It means that the bowels and intestines didn’t form well, or at all. It could mean that his bowels formed with a boney substance rather than a fleshy substance. It meant that he could have gotten an infection that had now hardened in his intestines. None of these we would know for sure until Jake came out and tried to poop. But if he couldn’t poop, we knew that this was a life threatening condition that we might not be able to fix and overcome.

The other major problem he faced was a hole in his heart. Many babies are born with this but at his size and age we didn’t know if this was something he could get through. But thankfully on day 4 we could see a real decline of how big the hole was and by day 6 the hole had closed on its own, not requiring any surgery! This was a huge victory and we were very excited to get one at this point!

Praying for Poop!!!

After Jake came out, days and days went by with no bowel sounds at all. The doctors tried to comfort us but you could see that there was worry in their eyes, and they kept using the words “We’re very concerned”. This was hard to swallow, because I know that my placenta not working for him and the lack of nutrition is probably to blame for this condition, and I knew that it was my fault. By day 6 of no poop the doctors informed us that they had contacted Primary Children’s and that they were not ready to interfere and perform a surgery on him yet to fix his bowels but that they were in connection with the doctor that would, and that it was a possibility for the near future! I cannot tell you how hard I prayed Friday Morning for poop. I’ve never prayed for poop before nor do I think I have ever prayed that hard for anything!

That night was day 7 with no poop. When we got to the hospital the first thing we did was meet with Dr. Gerday who explained to us that there was beginning to be a real problem that he hasn’t pooped yet and that there were no bowel sounds. We spent 10 minutes going over our options and were told that we were going to keep on waiting a bit longer but that something had to happen soon.

I was able to help take care of Jake this night, and by take care of it meant take his temperature and change his diaper. Everything was going just fine and then suddenly I took his old diaper off and there right in the middle was a droplet of POOP! A gasp of pure relief came out of me and then the waterworks were turned on! I started bawling loudly right there in the NICU and everyone heard me yell “THERE’S POOP!” Nurse’s started cheering and crying with me, even the guys. They all knew how important this was and how excited I must have been! We took Cayden and Brookie out to dinner that night to celebrate the poop and were later told that he had pooped again later that night. And with that poop coming out there also was a big sigh of relief that there are now healthy sounding bowel sounds coming from his tummy!!! We couldn’t believe it. One more rich and pure blessing sent from above to our little family. I know that Heavenly Father is looking out for us and that he hears each and every prayer, even prayers about poop!

Tuesday March 15 - Friday March 18

Moving-in day

On moving-in day the doctors did some major blood work on me and could find nothing that would suggest that my body was to blame for all of this. They did see some upsetting evidence that the umbilical cord had depreciated in the span of one week and I was warned that the cord would not be able to support Jake for much longer, but that at this time, his heart beat sounded good and that we would just watch and wait. I unpacked my stuff into my “penthouse suite (Jetted tub and all)” and got to know my nurses pretty well. It was my first night there that they noticed a slight spike in my blood pressure but it wasn’t for long so they decided to just check it every hour.  

Tuesday, Wednesday and Thursday just rolled on by and I was feeling fine. The doctors wanted to test everything so I was being poked and prodded by I think every needle in the hospital and by the time Thursday night came around my right arm veins had all collapsed and they were now poking into both wrists and knuckles on the top of my hands. But I felt fine. Karen came by Thursday night and brought me some Pepsi and French Fries that I had ordered and we had a good visit, nothing out of the norm. That night the nurses agreed that I hadn’t gotten a good night sleep yet and they thought that might be affecting my blood pressure a bit because it was starting to run a bit higher than usual, so they took all the monitors off of me and Jake and told me to get a good night’s rest. Then I went to bed! Thursday night and Friday morning would be the worst and best morning of my life. I will explain in a bit!

What felt like Heartburn…

                1:30am: I woke up with the worse case of heartburn. Naturally I thought it was from the pepsi and fries I had enjoyed the night before and I asked the nurse for some tums, which she gladly gave me. She took my temperature and blood pressure while she was there and saw that it was a bit high but not that bad. She told me the tums would work in about 15 minutes and to try to get some sleep.

                2:30am: I am still lying there with a major pain in my chest from this dumb heartburn (I thought). The nurses have been in and out checking this and that and trying to make me comfortable, but nothing I thought was going to take that pain away.

                4:00am: The doctor is called and shows up to test my blood pressure again, only to find that it is now in the 90s and that it has been on a slow incline for the past 3 hours. He orders some lab work to be done and also some morphine to calm me down and take away the pain that is now moving up my chest and down my right arm. I am just now getting scared that this isn’t heartburn, but thoughts of a heart attack were in my head because of the arm pain.

                5:00am: The lab guy gets there but can’t draw any blood in my right arm. After 3 tries he still couldn’t find a vein. He went through both hands and wrists before he finally gave up and took blood from my IV that was his last choice and last option. He rushed the blood to the lab and it was at about 5:45 when we had our first test all week come back bad. My Liver was shutting down. Also my Platelet’s we declining from over 100,000 the day before; they were now down to 17,000 and falling.

                7:00am: I’m told to call Rory and tell him we might be delivering today but that we were going to have an ultrasound first. I still had no idea how serious this whole situation was, so I told Rory not to worry, to go to work, and that I would call him if anything changed!

                7:45am: I am wheeled in for my ultrasound. The Parenatologist takes one second to stick the ultrasound thing on my tummy, he looks straight at the computer, and back at the nurse and tells her to go scrub in and that was when I really started to get scared. I knew Jake was less than a pound and that he probably wouldn’t survive being born this early. It was at this time they told me my life was in danger and that the placenta was rupturing. I was told that at the risk of losing the baby they were going to have to deliver him to save my life! No Mother wants to hear that she is the reason her baby is going to die. I couldn’t believe this. I never could have made this decision if it hadn’t been for my testimony of the gospel. The knowledge I have that Jake and I would be reunited one day, and that he would be in a perfect state was the only thing that kept going through my jumbled up brain.

                It was at this point that the Doctors could see that I was starting to have seizures, or that I was about to have seizures so they started me Magnesium.  Rory claims that he now knows what I would be like as a crack addict because I was so drugged up and loopy for 2 days being on this stuff you wouldn’t believe how crappy and sick it made me feel. I would close my eyes for what felt like an hour long nap, and then open them and only one minute would have gone past the clock. Anyway, magnesium might have saved my life but I wouldn’t wish it upon anyone!!!

                9:00ish: I don’t remember calling Rory and my mom, but apparently I called them and told them to come immediately and that we were having the baby. I got my epidural by myself and prepped for the C-Section.

10:00: My mom got there first and says she has no memory of driving there and has no idea how she got there so fast. I think it was a blur for everyone.  My dad made it there next and I guess the doctors waited as long as possible for Rory to get there because they were wheeling me out of the prep room and down the hall when Rory ran up. I remember hearing, “Are you the dad?” They tossed the scrubs and booties at him and told him to get changed.

10:41: Baby Jake is born. ZERO pounds 15 ounces! Zero pounds. We couldn’t believe it. The doctors quickly rushed Jake away and I remember telling Rory to go be with him. That’s about all I remember. I was cleaned up from the surgery and I remember going into the NICU so that Jake could receive a blessing from Rory and Grant. I couldn’t see much while lying flat on my back but I was able to touch his toes with my finger and then they took me to my room to get some rest. Jake received an 8 on the baby Apgar test which immediately surprised every doctor there, (which there were a ton), and he looked far better than anyone ever thought he would as well. His head wasn’t as mis-shapen as they thought, there was a small hole in his heart, but it seemed fairly normal size for his gestational age. We knew that we had many challenges coming in the upcoming days and weeks and hopefully months and years, but we were up for the challenge.

The day March 18^th 2011 was theworst day because Rory and I had to choose my life ver our babies, but it was the best day because our little Jake was born and looked as good as a 15 ounce baby could look.

March 8th marked the beginning of the biggest change in our life

The devastating news

There is nothing that can ever prepare you for the devastating news that the baby you have tried for so long to have is most likely going to die and that there is nothing you had done to cause it but there also nothing you can do to save him either. That is what Rory and I we’re told on our first visit to the Maternal Fetal Medicine department of Utah Valley Regional Hospital. We were told to pray for a miracle but to plan for a funeral. They had the evidence to back up their theory that Jake had a Genetic Disorder that was preventing him from growing, and that had also caused him to have four other problems not normally found in an ultrasound at that time of gestation. They also tested me in every way and all those tests came back normal including my blood pressure. And since I had previously given birth to two healthy babies I was pretty much ruled out as the problem.

We were then sent to a genetic counselor that would try to find something in our history that could explain why this had happened; they even asked us if we could be related! Then we were asked if we would like to perform an amniocentesis, so that we could better know what genetic problem had occurred. We decided that waiting another day would be torture for everyone and that the risks of the amniocentesis didn’t out way the heartache we would feel by not knowing his condition. So we went through with the test. After all of the procedures and all of this information had been given to us, we met with Dr. Gerday, the Neonatologist, who was able to give us slightly better ratios of him living, but only if this amniocentesis came back normal.

                You can imagine the car ride home from the hospital that day. A look of total shock and horror painted across Rory’s and my face. We thought we were going in to learn of why Jake wasn’t growing and how we could fix it, not to hear that we might never bring our little baby home. Rory tried to show how strong he was, but the first thing he did as we’re pulling out of the parking lot was drive over a curb that was clearly marked. He blamed it on the van but had a harder time finding an excuse for almost getting us lost by turning on some unknown roads that we had never driven on before. I could tell that he was more upset than he was showing.

The Painful week ahead

                That Tuesday night and the upcoming days were the most upsetting days of my life. Thoughts of pure anger, hurt, depression, loneliness, helplessness and despair kept rolling through my mind like an ongoing marquee sign you see on the side of the road. Just as I would clear my thoughts long enough to wipe away the tears, another devastating image or thought would roll on through and I found myself wallowing in self pity and anger once again. Thoughts of ‘Why us?’, ‘What did we do to deserve this?’, ‘We’re not strong enough for this!’, ‘Cayden and Brooklyn deserve a baby brother’, and a million other hurtful messages kept coming up in my head. Worst of all were my darkest moments of feeling like the Lord had let me down after all that I done for him. To feel these feelings, and try to explain them to others was the hardest part because deep down I know I could never be mad at the Lord, my testimony is stronger than that, and I felt angry at myself for even doubting my testimony for a second. I know that the Lord loves me and my family and that he would never give us something that we couldn’t handle. I also know that some of the Lords most Perfect and Chosen children come in bodies that aren’t best suited for this earth life. For a few seconds in the most disparaging moments my testimony wouldn’t feel like enough to get me through this, but when all was said and done at the end of the night and many, many, many times throughout every day I found myself praying and begging to the Lord for answers and comfort to get through this time. Rory and I found comfort in the Temple, also in the company of loved ones and friends, and in the blessings the baby and I had received. We are so grateful to have friends and family that at the drop of the hat would come to help give and be a part of these blessings. Thanks to all those that did. They really helped me to find comfort in this time of pain.

The Amiocentesis Results are NORMAL!

The thoughts and prayers from friends and family was what really held me up through the week and gave me the strength to still be a mom to the two I had and wait to hear the results from the amnio. The results came on Friday afternoon. Normal!!! The results came back negative for every condition it tested for. This was a huge surprise to us, but I think an even bigger surprise to the doctors at the hospital. This was the first time I heard a sound of optimism come from the voice of the doctor delivering the message to me. Her voice went from sorrowful on Tuesday to uplifting and even happiness on Friday. It was at this point that a smile rolled across my face for the first time this week. I thought that we might actually get to live with and love this baby in our home. We knew that there would probably be some major issues like Cystic Fibrosis and other abnormalities that we would have to deal with or overcome but we were ready for the journey. Then Monday, the Cystic Fibrosis test came back negative as well!!! Tests kept coming back better than expected and the doctors really seemed amazed at all of the results.

The doctor said that I was still high risk for a miscarriage and still-birth due to my two vessel cord, and that in order the prevent a miscarriage I would be moving into the hospital on the upcoming Tuesday for the remainder of my pregnancy which could be anywhere from 1 week to 8 weeks. I was upset at the thought of leaving Cayden and Brooke for so long but knew it was in the best interest of Jake, and that I might be saving his life, so the choice was fairly easy to move to the hospital.