Blessings of Continued Revelation

    Tomorrow is Eliza's 3 week birthday! I really can't believe how fast that went (I think I probably prayed away the first 2 weeks). We have been home 3 days now and LOVE it! Eliza is awake most of the night, but doesn't really fuss. She gets crabby about every 3 hours when she is ready to eat again, that is really the only time I hear her get upset. She is very sweet and loves to snuggle. Joseph is in love with her cute little fingers and her soft skin. Hyrum loves wave to her from a distance and giver her occasional head kisses. I am in love with my little family. Jason went back to work which I think is proving to be a little harder than anticipated. He misses us I think. We miss him too. I can't wait for the weather to get warmer so that we can do fun stuff outside. Right now it's just cold enough for me not to want to take Eliza out unless I have to. But the boys love to go on walks, ride bikes, and play at the park. I think they are getting a little cabin fever (good thing we have a cute little sister to look at all day!). 

  I was thinking about our hospital stay (and how glad we are not there anymore), wondering how I managed to make it out of there with my sanity. This got me thinking of all the miracles that happened that I was unaware of until I had time to think of them. The list of miracles started with the doctor's visit before the hospital. We pulled in to the appointment about 20 min late and they pulled us back to a room immediately, I didn't have to keep my baby in the waiting room at all to witness another seizure without the help of medical professionals. When she did have another seizure it was in the arms of the nurse who promptly responded and before the end of it there was a whole team of doctors in the room to help Eliza. Five minutes later the paramedics where there and they were two mom's about my age that had children my kids age, this calmed me almost instantly. I am so grateful for the medical professionals who were there and acted so fast. I am also so grateful for our pediatrician, I have liked him from the very start of Joseph's life and he continues to "wow" me with his knowledge and professional bed side manner. I know he truly cares about his little patients. 

   Having been only two days postpartum, recovering from a pretty fast delivery, I was pretty sore to say the least. I was tired, hadn't eaten, and could barely walk, yet some how I had the strength to stand at Eliza's bed for days without end. The hospital staff was so good to me! They made sure I had a rocking chair and told me to sit when they could see me falling asleep at her bed side, they brought me juice (which was the only thing I could barely hold down), sandwiches, offered up their soft chairs, and just talked with me to keep me occupied of other things (which I needed desperately). I remember looking at Eliza laying there, hooked up to all sorts of machines, doped up on medications, twitching from side effects of the medicines, and just sobbing. I couldn't control myself, I was just sobbing. The night nurse, Reny, came in and witnessed my breakdown (the first of many) and in a quiet broken voice told me to just pray. At that point I needed to be reminded that my Heavenly Father could not be forgotten and that not only were my friends and family praying for Eliza, but so were the nurses. 

  I think sometimes I avoid the spirit because I don't like to cry. I know that seems silly, but it's true. I was just talking with my friends about it a few months ago. I feel like I'm not very in tune with the spirit and I wasn't sure if it was because I tend to push it away, because I hate crying, or if it's because I'm some how unworthy to feel His promptings. While in the hospital I didn't care about any sort of socializing, I didn't want to talk to anyone, I didn't want to  talk about what was going on because it made me scared and sad and that would make me cry. So I avoided people and anything that would break me. All the while I was receiving promptings to talk with my Heavenly Father, that he would give me strength. I avoided these promptings for as long as I could. Finally I saw that, even while avoiding these promptings, the love of my Heavenly Father never left me and I owed him and everyone who had been carrying me. I was provided the strength to talk with my Heavenly Father, and with that communication was given more council to continue reading the conference talks as I was before Eliza was born. With this council I realized that I suddenly had been given permission to sit down and be uplifted. This not only helped to heal me physically but also spiritually. I received strength from the words of the prophets. I read a few talks that confirmed to me that my faith was lacking and that I needed to allow the spirit in.

 "Continuing Revelation" by President Henry B Eyring- October 2014 General Conference

 "We all know that human judgment and logical thinking will not be enough to get answers to the questions that matter most in life. We need revelation from God. And we will need not just one revelation in a time of stress, but we need a constantly renewed stream. We need not just one flash of light and comfort, but we need the continuing blessing of communication with God."

 "The Holy Ghost shall be thy constant companion"

"Guided Safely Home" by President Thomas S Monson- October 2014 General Conference

  "We are strengthened by the truth that the greatest force in the world today is the power of God as it works through man. To sail safely the seas of mortality, we need the guidance of that Eternal Mariner—even the great Jehovah. We reach out, we reach up to obtain heavenly help."

  The last week that we were in the hospital I had this song stuck in my head, I didn't know where it came from, it wasn't a song that I had just heard. The words were just on repeat in my head. I asked Jason what song it was. "How Firm a Foundation". I didn't recognize the song because the words were not in the first verse but the second and third. 

1. 1. In ev'ry condition--in sickness, in health,

      In poverty's vale or abounding in wealth,
      At home or abroad, on the land or the sea--
      As thy days may demand, as thy days may demand,
      As thy days may demand, so thy succor shall be.
   2. 3. Fear not, I am with thee; oh, be not dismayed,
      For I am thy God and will still give thee aid.
      I'll strengthen thee, help thee, and cause thee to stand,
      Upheld by my righteous, upheld by my righteous,
      Upheld by my righteous, omnipotent hand.

   It's crazy to me how our Heavenly Father and Savior speak to us. There are so many different ways, through scriptures, promptings, dreams, church speakers and lessons, blessings, the list goes on. Sometimes they will try every way possible for you to listen and you just can't hear it or you push it away, But they never stop trying to reach you, NEVER. They will keep trying until you are ready to hear and reap the benefits of their spirit. I know that this song was what I needed for me to remember two things, that I need my Heavenly Father and that He will never leave me, he will always keep trying to reach me.

Mother of 3

We are HOME!! This is my second day home being a mother of 3. I really can't believe it. Really it's not much different from being a mother of 2, other than it is a bit harder getting Hyrum out of his crib while also holding Eliza. Eliza is doing fantastic and has even allowed me a few hours of sleep each night. She was sent home with some oxygen for emergencies and an apnea machine to use at night for my peace of mind. Other than her having to choke down 3 awful medications in the morning and night, she is a pretty normal baby. She sleeps and eats a lot. The boys are aware of her but don't exactly care at this point. Joseph wants her to start crawling and loves when her eyes are open. Hyrum spent a good 15 min yesterday just staring at her in the swing.

I was just staring at Eliza yesterday and I started to feel a little emotional. I told Jason that I feel like this whole experience has robbed me of enjoying this newborn stage. I worry a lot! Everything she does I question if it is "normal" even knowing that it is exactly what my other newborns had done. As much as I love her being cute and tiny and can hardly wait to get past the trauma of the first two weeks of her life.

On Tuesday we have her first neurology appointment and I think Jason and I are equally excited to talk about getting Eliza off some of the crazy medications she is on. The list of side effects of the medications are very alarming and we hope to eliminate at least one of them, if not two. Jason has been doing some major research and he is pretty confident of what Eliza has and we will bring that up at her appointment as well.

I am so grateful to be home with my whole family. I know that this situation could have been so much worse and I know that we have been incredibly blessed.

Light

We got the news yesterday that after a 24 hour watch Miss Eliza would get to go home! She has officially transitioned off of one seizure medication, had the feeding tube taken out, and has been feeding and taking her other three medications by mouth for a full 2 days now. So her 24 hour watch will end tomorrow and she will be released to go home. There is light at the end of the tunnel!

I am so excited to get back home and on a schedule and a little more nervous to take home a baby that may have health issues. I know that Jason and I are more than capable of taking care of Eliza in an emergency, but I just hope we never need to. So my stomach is in knots (I may have a minor case of PTSD). I am excited to get the first day and night back home under our belts so that we can see for ourselves that we can handle it. I already know that Eliza is a strong girl who can put up a good fight, so I'm not so much worried about her, but I'm not sure if I can handle anything more happening to her. I will have to continue to pray for faith that all will be well and try to not syke myself out all the time. I GOT THIS!

Miracles

Miracles continue to flow. We are now on day 4 of no seizure activity (even according to the EEG test)! She has that silly electrode cap off and I get to see her cute little head with pretty red hair again. Because there is no known seizure activity we were able to adjust her meds a little and start bottle feeding today. She is doing great! Our next challenge is for her to take her medications by mouth. We started that today also but she hates it and literally gags with every micro drop (it is actually comical). She has three medications that she has to learn to choke down before they will let us go home so I'm hoping she gets over it quickly and just takes them. If all goes well she will get the tube out of her nose and intestines tomorrow (it has been left in because it is a way for her to get the oral meds without actually taking them orally). Tonight she choked down two of the meds after about 30 min. I had the nurse give her the third med via the tube (NJ tube) because I didn't want to stress her out any more than I already had. Tomorrow morning we will try again. 

I got to get out of the hospital for awhile today to spend some time with the boys. It does my heart good to do normal stuff. I can't believe how much they have grown up in the 10 days Eliza has been in the hospital and I have been away. In a way it makes me sad, but I am also so grateful that they are strong boys and have learned to cope in a good way. Joseph is absolutely ready for us to come home though and I'm sure Hyrum feels the same even though all he does is give me this look of disgust when he sees me. Haha, that boy has serious attitude! 

Life is great and I'm so glad my little fighter girl continues to fight. If all goes well we should be home in a few days!

Book of Mormon - Moroni 7:37,42-43

37 Behold I say unto you, Nay; for it is by faith that miracles are wrought; and it is by faith that 

angels appear and minister unto men; wherefore, if these things have ceased wo be unto the 

children of men, for it is because of unbelief, and all is vain.

42 Wherefore, if a man have faith he must needs have hope; for without faith there cannot be 

any hope.

43 And again, behold I say unto you that he cannot have faith and hope, save he shall be meek, 

and lowly of heart.


Today I am not only grateful for the many miracles that have taken place and continue to flow, but I am also grateful for Jason as my eternal companion. It is hard to find words that give my feelings for him justice. I couldn't imagine any journey without him, let alone these crazy few days. In my darkest moments he has been by my side bringing light and life back in. He has a special connection with our Heavenly Father that blesses our family continually. He sees things in a way that brings me hope and understanding of things unknown. He is a man of strength. I know this experience has been a major struggle for him, but he some how holds it together and his faith has never faltered. I am grateful for this man, who has carried my faith lacking mind to higher ground and has reminded me that faith brings about miracles.

Edelweiss

Many miracles have taken place this week. Eliza has been through more in her first 10 days of life than I have been through in my entire 30 years, and I applaud her strength. This is where the following miracles have come forth. Our first goal was to stop the seizures completely and so far we are on day 2 with no noticeable seizure activity! Because her major, once an hour, seizures have stopped she has more strength and is actually awake a few hours a day. I love to see her eyes open and looking around. She even protests when the nurses come to take her vitals! When I hear her cute little sounds my heart is healed.

 She is once again hooked up to the video EEG machine, which will tell us if there are any seizures that are happening that we are unaware of (this is a 24 hour test). If all goes well on this test we will begin bottle feeding. This may pose it's own challenges due to the fact that the medications that she is on make her very sleepy and she may not want to wake up, even to eat.  We shall see what the rest of the week has in store for us.

Yesterday (Monday), Eliza had another lumbar puncture to collect samples for the genetics test. We are hoping that this particular test comes back negative due to the scariness of the condition. But should it come back positive we will be prepared to live a happy life with the challenges it presents. This test takes at least 2 weeks for the results so we will keep our selves occupied with positive things.

Tonight during one of Liza's wake periods I held her and talked with her and sang to her. It has always been hard for me to sing to my babies (I just end up bawling and getting tears and snot in their faces), but I told myself that it was important for this little baby to hear my voice and to know it. So I went down my regular list of songs, Jesus wants me for a sunbeam, Jesus once was a little child, Annie's song, Popcorn popping, I am a Child of God, and Edelweiss. As I was singing Edelweiss I knew that song was for Liza, almost as if it were written about her.

"Edelweiss, Edelweiss
Every morning you greet me
Small and white clean and bright
You look happy to meet me (only I sing it, "you look happy to me")
Blossom of snow may you bloom and grow
Bloom and grow forever
Edelweiss,Edelweiss"

The Edelweiss flower is a dainty little flower, white in color and grows up high in the alps, it is flower that is not easily obtained due to where it is located. There is a book written and a short passage from it reads,

"There is a flower known to botanists, one of the same genus with our summer plant called 'Life-Everlasting', a Gnaphalium like that, which grows on the most inaccessible cliffs of the Tyrolese mountains, where the chamois dare hardly venture, and which the hunter, tempted by its beauty and by his love (for it is immensely valued by the Swiss maidens), climbs the cliffs to gather, and is sometimes found dead at the foot, with the flower in his hand. It is called by botanists the Gnaphalium leontopodium, but by the Swiss EDELWEISS, which signifies NOBLE PURITY." - Ralph Waldo Emerson

Noble Purity

This has been a difficult week for me, I can't say the same for Liza because she knows nothing better. But in my darkest times and weakest moments I am reminded that they are dark because I have started to think of myself and allowed my faith to lack. This is Liza's journey, I am blessed to be a part of it, but this is about her, not me. Eliza is absolutely perfect in every way. She is so pure. I know that my Heavenly Father has blessed our family with her noble spirit. She is a giant among us and I see it in her eyes. She knows more of life than I can even comprehend. I can see she is a noble soul that has come from Heaven to teach us all about faith, hope, and charity. 

I continue to feel the prayers of our family and friends. I know many people have been praying for miracles and may this be a testament to you, that your prayers are being heard. I thank you so much for your continued faith.

Your Turn on Earth Miss Eliza Mae

Eliza Mae was born on Saturday the 10th at 7:32 pm after a very quick 5 hour labor. She was born 8 pounds even and 20 inches long. She has red hair!! I am sooo happy for her red hair and hope it stays. She is just so cute with her chubby little face and skinny legs. We love her so much already. Joseph was sooo excited to meet his baby sister so we were discharged pretty early and arrived home less than 24 hours after Eliza's birth.

Eliza slept almost 100% of the time. Sunday at 12 am I was rocking her in the chair when she started to get super stiff and turn a very dark purple. Her fists would curl and arms would go straight out and toes would go straight out as well. After that ended she would start gasping for air like she was choking. This scared me, but for some reason I just thought she was having gas or getting ready for her first big poop. I kind of brushed it aside but she did this a few more times through the night. First thing in the morning I called her Dr to have him take a look at her. While in the middle of the appointment, with the nurse, Eliza had another seizure and turned blue and stopped breathing all together. They called the crash cart and within seconds all the staff was in the room and I lost it. Watching my little baby on a table not breathing and then gasping was heart breaking and so scary. Joseph was with me while Jason and Hyrum were in the car waiting for us to be done. Joseph was very calm but worried. The office called the paramedics where they transferred Eliza and me to Valley Children's hospital about 5 min a way (This is also where Jason works).

In the ER Eliza had a few tests done (most of which we received results for). She had blood work, urine analysis, CT scan, and a lumbar puncture. All of the results for the labs and CT scan came back with good results. The preliminary results for the lumbar puncture (LP) came back good as well, but we are still waiting on the cultures. At this point we knew that we would be staying at the hospital for a few days to hear the results of the LP.

Tuesday Morning I met with the neurologist first thing to get the game plan from him. He told us that because Eliza is less than 4 days old the tests that have to be run are much more extensive. So he ordered all new blood work that tests for every metabolic issue possible (most of which take weeks for results), and EEG (measures brain activity via electrodes all over the head and face), and an MRI (looks at the anatomy in many different levels). Every one of these tests were done on Tuesday.

Wednesday we were scheduled to take the infant CPR class. This suddenly made it more real for Jason and myself. When the class was over we met with the neurologist. He brought us over to his computer to pull up the MRI results and said that he thinks he found what could be the cause of her issues but that it still needed to be confirmed with more tests. What he saw is what can be small piece of normal brain matter that is in an abnormal spot and I guess this can cause the brain to confuse it with something that is a bad guy even if it's not really. He had a term for it but both Jason and I forgot it already. We can ask him tomorrow. He said that there is not much known about it in babies that are so young so he didn't want to sound too gloomy or optimistic at this point until he runs more tests. He did make it sound as though, if this is the actual problem it's just a matter of finding the right dose of medication and keeping her maintained for her life.

Thursday: It is just barely Thursday (1:30 am) and I am winding down still from Wednesday (What an interesting day). Today she is scheduled for a 24 hour EEG test that will monitor her brain activity as well as take continuous video. This is cool because the Dr will be able to not only see into her brain but also see what changes happen to her physically if a seizure is to happen. They do this for 24 hours because she is bound to have a seizure in this time frame. I can imagine that they will set up for this procedure early. My step mom, Sue, will be here at 11 to help with the boys since it doesn't look like we will be leaving the hospital any time soon.

This whole experience has reminded me of the play, "My Turn on Earth" about the Plan of Salvation and how each of us chose to come to earth from heaven to grow. I don't remember a lot of it but I remember one particular moment where a little girl is told in heaven that there will be pain and she agreed (not fully understanding or even caring of what pain would be, just knowing that she didn't care what it was, just that she would get to come to earth). When she came to earth she felt pain and cried and wondered why she made the choice to come at all. I remember being a very little girl and somehow understanding why she chose to come to earth. We all made a choice to leave our Heavenly home for the opportunity to learn and grow through life's challenges and victories. This experience may seem difficult for those looking from the outside, but for me, I know that this is part of what we "signed" up for. I agreed (as did Eliza) that we wanted this challenge MORE than not having the opportunity at all. Does it make it any less hard to watch my baby go through this? No, it doesn't, but I don't see a dark tunnel either. I have so much faith in medical technology. I know that our Heavenly Father gave us brains for a reason. And because people chose to use their brains we have amazing life saving technology and Drs that are a wealth of knowledge, all for us to use to make the most of our short lives here on earth.

I am so grateful for all those who have helped lighten our load this past week. Between bringing meals, watching my boys, cleaning my house, washing my dirty clothes, keeping us sane, the visits, the calls and texts and emails, and mostly the prayers. There is no way I could possibly thank everyone enough. It has been a challenging week, but we have felt the load lightened. I look forward to concrete answers and bringing my little baby home so that we can be complete and back to our crazy normal selves. I look forward to the future even if it may bring more challenges and adjustments. I am SO grateful for my little Liza's turn on earth, what a joy she has been so far!

Katie