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.