Tuesday, March 22, 2011

Family Update 8: I'M PREGNANT!!!

So I guess the big news today is that we will be welcoming another Havertape baby into our lives .. God is so good!! I'm 8 weeks pregnant today and we are currently due on November 1st 2011, which would be super cool because the babies birthday would be 11.1.11, however Caleb's birthday is October 27th so he's hoping the baby will come a few days early and be his birthday present .. We'll just have to wait and see what happens. As for me, I'm still in shock a little and just trying to process it all. It happened MUCH faster then we had planned, in fact it wasn't planned at all and you can say that it's pretty much an accident .. Well an accident to us but in the big picture God knew all along. We had planned on having more kids but not for a year or so and for those of you who know my experience with getting pregnant it's not easy for it to happen to us, so for us to not be trying diligently to get pregnant and for it to just happen out of the blue can be nothing other then God!! What's really amazing about it is a few days after Eowyn's funeral I was talking to the Lord and telling Him my desires and my need to have another baby and how I hoped it was in His will for me to have another baby and experience being pregnant again .. Little did I know that He had fulfilled my prayer even before I had prayed it. That's how loving God is and how Omnipotent He is .. He knew my wants and desires even before I had expressed them to Him and not only did He know but He put into motion that which I desired, I mean this is amazing!! I do have to admit that Caleb and I have known for a few weeks that we were pregnant but I wasn't ready to share the news with anyone .. I guess I was scared, scared of being pregnant again, scared of what people were going to think or say (not that that should bug me, but I'm human and it kind of does) and just scared to think about the fact that we may have another baby with ACD/MPV even though the percentage is only 1-2%. I just can't go through that again, my mind and my heart can't survive losing another baby. I know some of the doubt is the enemy putting stuff in my head and I know some of it is just me being fearful for what the future holds. Fear is not of the Lord and I know this, however I also know I'm human and just with human nature alone makes you doubt and become fearful .. My job is to know I'm human, I'm flawed and when I have fear and doubt I only know one person to take it all to and that's God. So that's my plan, God is my plan and He will comfort me and sustain me. Like my doctor (Dr. Ramirez) said "We will treat this pregnancy like any other healthy pregnancy till we know otherwise!" So that's the plan, well there's other things to the plan but that's a start. Dr. Ramirez listened to my story then he brought in the head doctor of the medical center and she put in a lot of referrals for us to get things done, on the list is the following: Caleb and I have to meet with a Geneticist to get our blood tested so they can see whether the disease is inherited or not, we will be seeing a special OB person who will determine whether or not my pregnancy falls under the high risk category, I got a TB test done which will be read tomorrow, I have a referral to get an ultrasound done, basic blood work all pregnant women have to get done and finally they are thinking of doing an Amniocentesis to have genetic testing of the baby done while I'm pregnant to test whether or not this baby will be born with ACD/MPV, not that it matters to much because we'll still have the baby but for peace of mind I think it would be good to get done as long as it didn't harm the baby in any way. But we'll see, I have to talk with the Geneticist and ask if there is even a test available for unborn babies to get done concerning that specific disease and ask what the pros and cons are .. For now the baby is doing good, healthy, happy, growing and we are on our way to happily excepting another baby into our family, into our arms, into our hearts. CJ is very excited, already praying for another baby sister, Jesse is kind of like whatever mom, he's still kind of young to care to much lol but I think he's going to be excited when the time comes. Caleb and I are so happy and super excited!! .. Please keep this baby and our family in your prayers. Pray for health and safety of the baby, no complications and peace for us .. Pray we don't go crazy with worry and fear. Thank you Lord for the blessing (baby) you have given us, Your timing sometimes has me wondering if You know what You are doing, but I know You are to Wise to make Mistakes .. So here we go!!!

Saturday, March 12, 2011

Family Update 7: Ordering Eowyns' Headstone

So Caleb and I are going to be going to Miller-Jones Mortuary today to put in our order for Eowyns' Headstone. We are currently designing it on his Photoshop and Illustrator programs .. I'm trying not to have a nervous break down. This is just something a parent should never have to do, but it also has to be done so I'm kind of stuck. The good thing is, in about 6-8 weeks, people who go to visit her at the cemetery will be able to find where she is. I was out the other day with CJ, shopping at Wal-Mart, and we picked out some flowers to take to her .. I had to look for a second to find her and then I called CJ over and he laid the flowers down for her, then he decided he didn't like the plastic that was around the flowers so we took them out .. CJ thought it would be a good idea if we took the flowers and outlined her gave with them so people would be able to find his baby sister. So now people will be able to find her at least for a while till they get to old and the workers have to discard them. I think we'll just go back every week and do the same thing till her headstone gets there, also gives me a chance to visit her. CJ said he missed her, he put his hand on her grave and said "mom I can feel her" and then he started to cry. He's showing his emotions more and more with each day and I have to say it's not easy to deal with .. but I reassure him that she is doing great where she is and we'll see her again one day when we get to heaven and it's ok for him to feel sad, to miss her, even to be mad about it and take it to God and tell God how he feels about it all. There's still healing going on over here and though the pain will not ever go away fully, it does lighten up with time. I find myself missing her but not in a sad way, if that makes sense, I'm joyful for her .. I know what she suffered and for her to be with us for 4.5 months was incredible. I loved the time I got with her, to be her mom, to love on her, to worry about her, get gray hair over her and to just know her, see her smile and know her face. She was an amazing little girl. I don't understand everything but I know she was sent here to change our hearts, our minds and open us up to God and everything He has for us, to bring us closer to Him .. She did that!! We love her so much and I'll keep you posted so you know when her headstone gets there.

Tuesday, March 1, 2011

This Song is What My Life is Right Now

It just goes to show that even with the small things, though we would probably choose to not have them happen and God may not either, He uses them to teach and mold us all the time. With the small things and the big things He wants to improve our imperfections and draw us closer to Him .. Gods ways of using any situation to better us, is amazing!!

Family Update 6: 1 Month Since Eowyn Went to Heaven

Well to be honest not much has changed since the last time I had an update .. Still dealing with heart break, looking to God for comfort and some kind of understanding, going on with our day to day lives and trying not to have a nervous break down. Today marks 1 month since she went to be with Jesus .. I really can't believe how fast it goes by, kind of like when I brought her home and she was 1 month old, I looked back and said to myself "Didn't I just give birth to you?" CJ has been telling me more often that he misses his baby sister and he wishes she didn't have to go to Heaven by he's glad she's not sick anymore. He also informed me that he's praying for another baby sister but this time he's asking that she would not be sick .. Not sure how to process that but I just tell him to keep praying because God hears him and will answer his prayers, in one way or another. As far as our family goes, the boys are both in swim lessons which they are liking a lot .. CJ is in level 2 (Mostly because he already knows how to swim but they need to help him with strokes and floating on his back), Jesse is in level 1 (for the second time) and that's because he doesn't know how to swim at all but he's learning and doing much better. He's not even supposed to be in the class because he's to young, but his birthday is in June and he'll be three so they just let him in the class. Caleb has been very stressed lately, you can be praying for him, he's still in school, working at the college teaching 3 multimedia classes, trying to run his own business and still grieving over the loss of his daughter .. Not to mention dealing with my crying and breakdowns all the time. He is an amazing leader and provider of his family but I can see how beat down he is and could use all the prayers you can put out for him. I'm doing better with every day thought I do take a step back, emotionally, from time to time .. The boys and family life keep me busy for the most part but there are times I'll cry out of no where and start to feel myself go through the "what ifs'" of her life and how I could have done something differently to change things. Those end up being the bad moments for me .. I also know I'm having the baby blues. I just love having babies, my kids are my life they are my ministry .. I know I need time to grieve but I also can't wait to have another baby. I just hope it's still part of Gods will for me to have another baby. In other family topics my brother and sister in law need prayer .. As many of you know Britny and her 3 kids were sent back to the US this last week because her son Johnnys' passport was expired. So they flew 13 hours to Russia sat in a confined area just to board the next flight out 15 hours later and then fly another 13 hours back to the US. They also have medical issues they are dealing with with their daughter .. Please pray for wisdom, understanding and knowledge that surpasses all understanding. Pray the Lord will reveal to them what He wants for them and from them.

Thursday, February 17, 2011

Family Update 5: She Would Have Been 5 Month Old!

I have been kind of busy lately and the days have been blending together, but when I finally had a moment to stop and look at the calendar hanging from my frig I noticed today was the 17th .. Three months ago today I took my daughter into Hemet Hospital and that started the hardest journey my family would have to go through! That was the day everything changed, the day that will never be forgotten .. November 17th was the day my family was no longer whole. Eowyn started having trouble breathing, an hour earlier she had thrown up after eating and I noticed as I laid her in her bed that something wasn't quite right and my suspicions were only magnified when, while holder her on my arms, she went limp and started turning white. I rushed her to the local hospital while Caleb stayed with the boys, they were both sleeping and I was unaware of how serious this would become, and as I got to the hospital I could hear that Eowyn's breathing was getting slower and more shallow. I went up to the window and told the nurse that I thought my baby was having trouble breathing. She took me back right away, sat me down and asked "why do you think your baby is having trouble breathing?" I then showed her Eowyn's face and she immediately ran me back, called the doctor and nurses and within minutes they had Eowyn intubated and was giving her oxygen suport .. It is an undiscribably feeling, to see your baby go through that and know that there is nothing you can do to help .. except pray! It's a helpless felling, seeing all this going on and not knowing anything .. I mean I had no clue (at the time) what happen to her or if she would be ok, as far as I knew it looked as though she would die right then. You just don't know what to do, what to think, you are completely lost. The nurse asked me if I had someone to call and I said yes .. I called Caleb and told him he needed to come down right now. He started asking question, which I had no answers for so I just told him to get his mom to watch the boys and to get to the hospital as fast as possible. Within 5 hours she was transported to Loma Linda Hospital were she would spend the remainder of her life. By the next day (18th) the doctor was talking to us about ECMO (life support). He told us this was the only way she would have enough of a chance to stay alive long enough for them to try and figure out what was wrong with her .. I didn't even know how to process this information, I mean my baby was absolutely fine a day ago and now the doctor is telling me she has to be put on life support .. What the heck was going on? Had I enterd some kind of knightmear and not known it?! On the 19th of November Eowyn went on ECMO and that started the journey for the fight of her life. She stayed on ECMO for 12 days and was finally able to come off after many failed attempts. The rest of the journey is writen in the many blogs posted on this site and you all know how the story ends but I wanted to write this and let you know how it all started .. Some of you many know and other may not but now you all do. Yesterday I was very emotional, crying all the time, easily irritated and just depressed and today I stoped and notice that yesterday would have been her 5 month birthday and today would have marked her 3 month stay at the hospital .. I'm glad she didn't have to spend her 5 month birthday in the hospital but I'm sad she didn't get to spend it with us! Thank you Lord for truly healing her and bringing her home eternily .. Help our hearts to heal and help us to look toward You for all we need and all we do!!

Tuesday, February 15, 2011

Family Update 4: Our Engagement Anniversary!

Today, nine years ago, Caleb took me on a very romantic dinner and walk on the beach for our late Valentines Day date .. We had to go to school on the 14th so we both decide, instead of rushing it, we would celebrate V-Day the day after .. Everything was perfect and beautiful. On our way, walking down the beach, he surprised me by going down on one knee and asking for my hand in marriage .. Can you guess what I said lol!! So here we are nine years later and if you had asked me to describe what our marriage would be like the road we've traveled is not one I would have guessed .. this is yet another picture of why God is God and we are not. He is the only one who knew we would go through what we have and He knew we would be able to survive it, with His help of course. If I had my way I wouldn't have picked to go through the trial we have gone through, I don't think anyways. I mean I can't be upset about it because with each trial, big or small, it has brought me and our family closer to God .. I mean if thats the reward I/you/we get then we should all be giving praise to God for all our trials. Unfortunately not everyone ends up praise God, some end up falling away from Him and turning on Him because they think God's the one who's punishing them for something or just not caring enough to do anything about it. Here's where our perspective comes into play .. You know why bad things happen? It's because humankind is flawed. God made us perfect, He designed us that way from the get go but no one wants a robot to love them, that's not even love, so He gave us free will .. I'll just end it with this, God gave us a way to get to heaven, whether you except that way or not is up to you but I do know that God is to loving to be unkind and if He could He would save every single one of us .. Oh wait, didn't that already happen!! As for Caleb and I, we are happier then ever and all the Praise, Honor and Glory go to God for working through the bad things and good to bring us closer to Him!!

Monday, February 14, 2011

Family Update 3: Valentines Day~Our First Holiday w/o Her.

Caleb and I went out to Newport yesterday to celebrate Valentines Day with our awesome friends Jeremy and Jenifer .. We went out to Joes Crab Shack where Jen had the privilege of teaching me how to crack my own cab and eat it. It was amazing to say the least, it was a wonderful break from the everyday grind or in my case a break from my mind and it's obsession to think about Eowyn. Now we're here on Valentines Day and as I look around and see all the many people celebrating their love for one another I can't help but think how I only want to show love to one person and she's not here to do that with. I find myself missing her more and more each day and my mind becomes engulfed with pictures and memories of her .. I almost have to make myself not think about her just so I won't go crazy. An inspiring person told me today that instead of thinking about how I'm doing here on earth, focus on how she is doing up there in heaven and it might help make me feel better. I would have to say, for the short time I was able to do it, that it does work and does put a smile on my face. I guess it's all about perspective and mine was facing a little bit in the wrong direction .. I don't want to feel sorry for myself, going around saying why me, why now, how could this happen?! I'll never know the answers to those questions anyways till I get to heaven and by then, after seeing all my family and friends, and not to mention Jesus, I may not want to or even care to know the answers to those questions. This is what I do know: God is to loving to be unkind and He's to perfect to make mistakes .. So whatever the reason is, for what happened, God was and is always in control! I do still miss her and I really don't think that will ever go away completely. Now I just have to remind myself to think about her being in heaven and trying to imagine what kinds a crazy fun things her and her best friend are doing up there .. How I can't wait to partake in that!! So Happy Valentines Day to you all and I pray it was a sweet reminder of God's limitless love for you and how He yearns for you to be in His arms totally engulfed by His love .. Thats the picture He gave me through this trial with Eowyn, how I long to be with her and how I want her to know how very much I love her, how words are lacking in my brain to express to her my love for her and my yearning to hold her one more time .. How much more does our Father want those things for us!! The picture I have in my head is beautiful and I long for the day I can be held and loved on by my Father in heaven.

Saturday, February 12, 2011

Family Update 2: The Day After Her Memorial

We are blessed to have had so many people come and share in the celebration of life for our little baby girl Eowyn. You never really know the people you'll see or who your loved one has touched and it was no different for us .. We saw so many familiar faces along with a few faces that haven't been seen in some time, then there were ones we have never seen but that God has brought into our lives through this journey of ours. It was amazing to feel the love and support that everyone was giving us even throughout the service. God is so good and His wisdom and knowledge in putting the right people in our lives in unbelievable. As we move on from yesterday I feel like all the emotions of her passing are starting to come out .. but with force this time. I think with all the planning of the memorial and trying to get everything handled I was able to keep myself mostly busy and keep my mind off of her passing. It's kind of my way to process things but now that everything is done and I have nothing else to plan of get ready for I'm just left to sit and think about everything that has taken place .. I have time to cry, be sad and lean on God and my husband to help get me through this. Now it's about really taking time to grieve, get the home life back up and running and getting us back on our schedules. I know I'll see her again and just thinking about the hug we'll have makes me smile .. Her service was beautiful and Pastor Cliff did an amazing Job (as always) at sharing the word of God and trying to reach the unsaved. I know that was part of the reason, if not the whole reason, Eowyn was hear, to spread the word of God through people and bring them closer to our Lord and Savior and we want to keep that going even after she left to be with Jesus. CJ and Jesse are doing fine. Really I think Jesse is to young to really know about anything that is going on but CJ knows and from time to time he'll bring Eowyn up and simply tell me "Mom don't cry, she's all better now .. Jesus healed her". I just hope he keeps up that faith and doesn't turn away from God .. I know how these kind of situations can lead to people running away from God and I hope that never happens. Please keep our family in prayer as we try to move forward.

Monday, February 7, 2011

Family Update 1: It's Been 1 Week

I would have to say that I can't believe a week has passed already. I guess with all the memorial arrangements, having to pack up all her stuff and getting things in the house moved around one does tend to lose track of time .. half the time I don't even know what day it is. Still with all this going on I do still feel like I'm missing something, like I've misplaced something really important and I just can't seem to find it! It's how I explain how I feel about Eowyn not being here, the only way I can share with you how it feels to not have her here anymore .. My life feels less hectic, like I have so much more free time. I guess thats what happens when you don't have to drive to Loma Linda everyday, your time just gets freed up. I would have to say that not having Eowyn here, as in this house, isn't what feels odd to me. She hasn't been home in so long that I'm used to not having a baby here, what's weird to me is not driving to Loma Linda to see her everyday. Not driving up Lambs Canyon, getting on the 10W freeway, complaining about all the crazy drivers (and no I'm not one of them), exiting at Tippecanoe and driving up the street to the hospital, trying to find a parking spot (which is near impossible and something they should really work on fixing) then going inside and waiting for one of the only elevators that work (something else they should fix) and finally getting to the 5th floor, walking through the double doors and seeing all the nurses, RT's and doctors that I've grown so close to .. Men and women who have dedicated there tie to taking such good care of my daughter, people I trust. They are apart of my family now and they have known Eowyn just as long as anyone else has, these are the things I miss, the things I feel weird not doing on a daily basis. It also feels weird not being able to see my daughter, to hold her hand, even not seeing her Trach is weird for me .. So many things that I got used to doing and seeing and now it's all over. I know there's an adjustment period for everyone and this one is going to take a bit more time to get used to but I can't help but be joyful at the same time .. It's almost like God has held back my tears for the last few days and replaced it with Joy. Joy in knowing that Eowyn is in His arms and she is made perfect and even though I miss all those things I just listed I'm also thankful I don't have to do them any longer because it means that she's no longer in pain, she's no longer suffering, everything that was keeping her there at the hospital is now gone, like a vapor! She ran the good race and God called her home, as much as I miss her I'm also so very proud of her. In the short amount of time she did have here on earth she did a great work for the body of Christ and that is something to smile about .. One day I'll be able to tell her how proud of her I am face to face and I'll give her the biggest hug ever! I miss her so much and I'm not sure when the felling I have of something being misplaced will go away but I lean on God and He keeps me going one step at a time. Thank you all for your prayers for our family, we need them.

Friday, February 4, 2011

Eowyns Memorial ~ We Miss Her!

Eowyns memorial has been set, here is the information for everybody:

When: Friday ~ February 11, 2011.

Time: 11 a.m.

Where: Calvary Chapel San Jacinto
1450 W 7th Street
San Jacinto, CA 92582
(951) 654-1401

I want to thank you all again for everything everyone has done to support us .. It has felt amazing to know how many prayers went up for her and how many are still going up for our family. This has been the most difficult thing we've ever had to go through and I know with Christ and time this hurt will begin to heal. I have truly enjoyed every moment we got to spend with her and though her time on this earth was short I know it was for a reason .. The reason may not be reviled now or ever for that matter but I know God doesn't do anything accidently so she was supposed to be here when she was and she was supposed to leave when she did! God is good and faithful in all thing He does and I find my rest and comfort in that. If you have known me for a while you will remember me saying how I never wanted to have a girl .. MY plan was to have 4 boys and that's what was going to happen. I now tell people God knew I wanted a girl even when I didn't, she is my blessing in disguise and I wouldn't trade her or the time we had with her for anything in the world .. Now I wouldn't mind having 4 girls haha!! She has changed my heart, made it softer, kinder and more girly .. I encourage everyone who is going to attend her memorial not to feel like you have to wear any black. In fact I ask that you don't .. Be bright and colorful just like she was. We miss her more then words can ever describe but there is joy and happiness in knowing she's in the arms of God and she is now without pain, blemish or any imperfection .. She has been made whole in every single way and one day she will welcome us into her arms, Oh how I look forward to that day!

I will be continuing to write on her blog .. I've decided it can serve as a therapeutic way for me to deal with this loss and find encouragement from the readers. Thank you all again for staying diligent in reading the updates and praying for our needs.

Wednesday, February 2, 2011

Eowyn Update 33: ~Her Race Has Been Run~

As many of you know Eowyn Mai Rose-Marie Havertape went to be with our Lord and Savior last night .. She is perfect in every way and in the arms of God!! Caleb and I had a family meeting with the doctors yesterday morning at 10am and we were informed that a test, that was sent out about a month ago, for a very rare gene, came back with a positive result .. Eowyn was born with Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins also known as ACD/MPV:

Alveolar capillary dysplasia with misalignment of pulmonary veins (ACD/MPV) is a disorder affecting the development of the lungs and their blood vessels. The disorder affects the millions of small air sacs (alveoli) in the lungs and the tiny blood vessels (capillaries) in the alveoli. It is through these alveolar capillaries that inhaled oxygen enters the bloodstream for distribution throughout the body and carbon dioxide leaves the bloodstream to be exhaled. In ACD/MPV, the alveolar capillaries fail to develop normally. The number of capillaries is drastically reduced, and existing capillaries are improperly positioned within the walls of the alveoli. These abnormalities in capillary number and location impede the exchange of oxygen and carbon dioxide. Other abnormalities of the blood vessels in the lungs also occur in ACD/MPV. The veins that carry blood from the lungs into the heart (pulmonary veins) are improperly positioned and may be abnormally bundled together with arteries that carry blood from the heart to the lungs (pulmonary arteries). The muscle tissue in the walls of the pulmonary arteries may be overgrown, resulting in thicker artery walls and a narrower channel. These changes restrict normal blood flow, which causes high blood pressure in the pulmonary arteries (pulmonary hypertension) and requires the heart to pump harder. Most infants with ACD/MPV are born with additional abnormalities. These may include abnormal twisting (malrotation) of the large intestine or other malformations of the gastrointestinal tract. Cardiovascular and genitourinary abnormalities are also common in affected individuals. Infants with ACD/MPV typically develop respiratory distress within a few minutes to a few hours after birth. They experience shortness of breath and cyanosis, which is a bluish appearance of the skin, mucous membranes, or the area underneath the fingernails caused by a lack of oxygen in the blood. Without lung transplantation, infants with ACD/MPV have not been known to survive past one year of age, and most affected infants live only a few weeks. For a full explanation please copy and paste the follow link into your browser: http://ghr.nlm.nih.gov/condition/alveolar-capillary-dysplasia-with-misalignment-of-pulmonary-veins.

After talking with the doctors and consulting with the lung specialists they told us this disorder is fatal and there is a 100% death rate, she would not be a candidate for a lung transplant and there was nothing further medically they could do for her. The latest x-ray showed that her lungs had began to scar, do to the very high pressures from the vent she was on, her diaphragm was no longer rounded but had caved in and was no longer allowing lungs to expand and oxygenate her blood; it also showed that her Intestines were deformed and not working properly. In addition, she was failing to circulate her own blood and was loosing oxygen needed to keep her body warm .. In finding out this information, speaking with the doctors and praying about what we should do Caleb and I decided that the best thing for HER would be to take her off the ventilator and place her into the arms of God. Last night around 7pm the vent was turned off and as she lay in my arms she passed away and entered the Kingdom of God! We know that Eowyn is an eternal being--she always has been and always will be since creation. The Bible says that God knew her since before the foundations of the earth; we also know that she will forever be our baby girl .. We can no longer hold her in our arms but one day she will welcome us into hers. I thank God for every single day we got to spend with her, to love on her and show her how in love with her we were and still are .. She is my baby mama and I will love her forever!! My heart is heavy and I miss her more then I could ever express to you, I feel as though my heart has been ripped from me but I know in time God will heal and restore it. Thank you all for every single prayer you put out there for her .. It didn't turn out how I wanted it to but it did turn out how God wanted it to and there is comfort in that!!

We will be holding a memorial service for her but all the details have not come together yet .. I will post and let everyone know when and where it will be held. Thank you all again for everything you have done both spiritually and financially, we love you all so much!!! I do ask that you please not send flowers, though they are nice to receive, we do need help financially to pay for her funeral. A monetary gift would be greatly appreciated; Our address for those who need it 25891 Fore Drive, Hemet CA 92544 .. Thank you all so much!

Monday, January 31, 2011

Eowyn Update 32: Test Results

Eowyn is still stable, her HR is looking really good at 125bpm, Saturation is 92-97% and the oxygen is down to 30% .. Her pressures are still really high and shes still on 20mikes of INO .. they did say that her blood gas was looking good so they might try and wean down the pressure a tiny bit and see how she handles it. She is still paralyzed, medically induced coma that is .. The Morphine, Versed, Vec, Milrinone and various antibiotics are still going and they started her on TPN (a nutritional substitute) yesterday. After seeing how good the blood gases are and how stable she's been the doctor has decided to put her on formula .. She'll only be getting 2cc's an hour but it's a start, I just pray her little tummy can handle it and she doesn't throw it back up! Her tummy is swollen, about 54cm as of this afternoon .. Good news is that she's not as swollen all over her body like she was the first time. The new vent she's on is a bit overwhelming, it makes her shake, mostly because it's delivering hundreds of breaths a minute and is kind of loud but after talking with Mike (Eowyns RT who has been taking care of her since she first got admitted and one of my absolute favorite people to talk to at the hospital not only because he genuinely cares about my daughter but he's also positive when no one else is) he helped me to understand the difference in the two vents. The Urine, Blood and Respiratory Viral test came back negative .. Only the test for Respiratory Bacterial came back positive, it wasn't very high however she's been on medication for bacteria since she came back to the PICU so I pray it'll be resolved soon. They do have some test results that just came in that they had sent out almost a month ago .. The doctor wants to meet with Caleb and myself tomorrow at 10am to discuss the results so I'll know more about that later, I just ask that you pray for us at that time that we will understand what is being said to us and what it all means for Eowyns future also for the doctors to have wisdom, knowledge and compassion as they are about to give us this information about our little girl, then pray for Eowyn that the Lord would protect her and preform a miraculous miracle in her little body. Thank you all for staying diligent in praying for our baby and for going through this with us .. God is Faithful and Just in all He does and He is our strength when we feel like the next step we take might be the end of us! Over the last few months I have felt like my heart has been ripped from my chest several time and God is the only one who's there putting it back in and helping me go on .. He will never leave or forsake me and that is so amazingly comforting!!

Psalms 23: 1 Jehovah is my shepherd; I shall not want. 2 He maketh me to lie down in green pastures; He leadeth me beside still waters. 3 He restoreth my soul: He guideth me in the paths of righteousness for his name's sake. 4 Yea, thou I walk through the valley of the shadow of death, I will fear no evil; for thou art with me; Thy rod and thy staff, they comfort me. 5 Thou preparest a table before me in the presence of mine enemies: Thou hast anointed my head with oil; My cup runneth over. 6 Surely goodness and lovingkindness shall follow me all the days of my life; And I shall dwell in the house of Jehovah for ever.

Sunday, January 30, 2011

Eowyn Update 31: Starting Over

I just wanted to do a short update so everyone kind of knows what has been happening with her .. For the last couple of days she has been, for the most part, stable. This has put us back to how she was when she first came in here .. it feels like the last 2 months have been a huge waste of time, all the progress we have made has been completely wiped away and we have to start all over again *sigh!! She has been de-sating on and off but since yesterday the only de-sat she has had was today around 2pm, her HR went down to 40bpm and her saturation was down at 50% but they think that was triggered because the RT was suctioning her and she was waking up a little out of her coma and it irritated her. SO they put her under more medication to make her sleep again and she's been stable ever since. Some of the results from the tests they did on Thursday should be in tomorrow and we know already that she doesn't have RSV, so I'll have more to share with you tomorrow. I haven't been to the hospital since Thursday so I don't know how she looks but the nurses have told me that she is swollen again .. I just hope it's not so bad that she need chest tubes again. I do ask that you keep praying for her and if there is anyone who wants to donate money we really need gas cards. I know we have had a lot of support from you and we thank you from the bottom of our hearts but one of the reasons we haven't seen her this weekend is because we have ran out of money to keep seeing her everyday, especially with Caleb having to drive to school and work our money for gas as gone quickly. So our need at this time is gas for the car .. Thank you and just remember God is in control so even if we can't see her everyday I know God is there and He has the last say so in whether she lives or dies. You know it has to be true when even the doctors are telling you to pray because it's out of your hands. Praise report is, she's stable and God is with her and there is no one better to have by her side!!

Friday, January 28, 2011

Eowyn Update 30: Back To Peds ICU~Eowyns Heart Stopped!!

Yesterday Eowyn had a really bad day . Caleb and I got there at 9am to do our training and shortly after the baby stared to de-sat. She went down to 76% and they had to bag her .. this has been happening more and more over the last week but yesterday was the worse by far. After bagging her for several minutes and calling a code on which made every doctor, nurse and RT on the floor come to her bedside, they finally got her stats up and she was stable. I was playing with her after, trying to make her smile and the doctors decided to change her from her home vent to the hospital vent for a short time because the hospital vent delivers better pressure, so Caleb and I went down to the cafeteria to get a drink and a bite to eat and as we came back in the room they had just switched her vent over and decided to suction her because she sounded like she had secretions in her lungs .. well to say the least she was not happy about that and started to de-sat again. They went and hooked her up to the bag and stated breathing for her but she had clamped down so bad that none of the oxygen was getting to her lungs .. When she got down to 54% saturation they called code blue on her again and the whole floor rushed into her room. The doctor took over bagging and the lung specialist started listening to her chest and trying to figure out why she wasn't coming back up. Caleb and I kind of got pushed outside of her room and as we stood there outside her room we watched as our baby went from having a heart beat to not having one .. The doctor started chest compressions and the other doctor continued bagging. They filled her with multiple medications and had her on a lot of IV's .. After about 5 minutes of this Eowyns heart beat came back and they rushed her over to the ICU. After being in the ICU she de-sated again a few more times and they had to put her back on Dopamine, Morphine, Versed, Milrinone, 2 different saline bags, Immune Boosters, 2 different blood transfusions, 3 different antibiotics and they have her medically paralyzed .. They did an x-ray after the first de-sat spell and then another after she got transferred to the ICU and it showed a dramatic difference, her lungs are completely cloudy and they are saying she has some type of Pneumonia, it may be viral (which they can't treat or cure) or it's bacterial (which they have her on medication for). They did an entire panel of test on her and we will know more about those in a day or two .. They also did another ECO on her heart and it showed that the pressure in her right ventricle has tripled from the last one she got on the 20th, it was in the 50's and it's now in the 150's. That explains why her HR is so high .. We left the hospital at 10pm last night and she was stable and her saturation was 100%. I got a call around 3:20am from Hannah (Eowyns Nurse) and she informed me that they were going to switch the baby over to a different vent, it's called an Oscillator (I think) and the difference is that this vent delivers really short breaths and a lot of them .. It will breath 300BPM for her, the other vent does longer less frequent breaths and they think this new vent will be gentler on her lungs and help oxygenate them better .. The doctors switched her because her saturation was hanging out at 87% and nothing they did could bring it up .. Her blood gases looked great and her blood pressure was looking good too but for some reason her saturation was not going up so they decided that this would help her out the best and be a little easier on her body. I called the Nurse this morning around 8am and she told me Eowyn had not de-sated since being on the new vent .. Eowyn did go down to 91% once but went back up and has been in the mid 90's ever since, her blood gases still looked good and the blood pressure was great but the doctors thought that she should have time to just rest so they aren't going to wean her off of anything yet .. The only thing that went down a little was the oxygen and it went from 100% to 85% but they are keeping it there for a while till she has time to recover. So thats about everything that happened yesterday and this morning .. I Praise God she's doing better and that He gave the doctors wisdom to know what to do to bring her back when her heart stopped. Dr. Mirza said for most babies this is the ending factor and it's just to hard for their little bodies to fight any longer .. So for now we keep praying and see what God has in store for Eowyn and for this family. I know God doesn't give up more than we can handle, but I honestly don't think I can handle much more .. I have been stretched to far for to long. I am completely on empty!! Yet I keep pressing on, one step at a time .. I think at this point God is literally behind me with His hand on my back pushing me forward, there is nothing else that could keep me standing upright and moving forward. This has been longest season of my life and I can't see the light at the end of the tunnel any longer .. I have no idea when or if she's even going to be coming home anymore.

Monday, January 24, 2011

Eowyn Update 29: Today Has Been Rough!

So we got up this morning and left for the hospital around 8am .. We got here a little before 9am, then we started our training. All we did was learn how to calculate how much oxygen we would need if we were to go out with Eowyn or calculate how much oxygen was left in the canister which would tell us how long she could be out with just that canister or if we would need to bring another one with us .. I just figure, if I go out anywhere with her I will just gave to learn to bring two because there is no way I'm going to be stuck some place with her and not have more then I need at all times .. I mean you never know what will happen.

Right now she's doing good .. HR is 144bpm, Respiratory is around 55-65bpm and her Saturation is 100%. Just from reading everything you would assume she's doing great and she is .. Now!!! around 9:40am she started getting really agitated, I gave her her binkie because she was trying to suck on her hands and I could tell she was hungry (and she was hungry because they stops her feeds so when OT came in Eowyn would be hungry enough to take a bottle, they were going to let me feed her), she was just going crazy sucking on the binkie and was getting even more upset, which is understandable because if someone stopped me from eating and I was hungry I'd throw a fit too, then, to say it as plainly as I can, she decided to hold her breath and turn blue. Because of the hypertension once she gets upset it's really hard to calm her down and when she cries so hard that she holds her breath its near impossible to calm her, bag her or do anything. So her stats start to drop and the RT can't get her saturation up, Eowyn is on high oxygen support at this time and still the bagging is not working. I can see that her lips are starting to have a blue tint to them and she got really white .. I'm telling the nurse and RT this whole time, not like they couldn't see it for themselves but I didn't think they were freaking out quite enough so I wanted to reiterate everything for them. They end up calling a Rapid Response on her and in minutes a swarm of doctors, nurses and RT's rush into her room, so many familiar faces .. Most of them were people who worked on her when she was over in PICU, well I was kind of comforted when I saw all of them coming and I know that sounds weird because when there's that many doctors and people in one room you kind of freak out but I felt like no matter what she was going to be OJ .. Anyways, call me weird or whatever but that's how it felt, well amongst the panic and crazy unmentionable thoughts that were going through my head. So as they got here her saturation went down to 74% her HR was 74, her breath was almost nonexistent and finally when she got so tired she couldn't fight against them any longer her stats started to come up, they could bag her without problems and her saturation came up to 98% .. But man oh man did she put up a good fight. Then she fell asleep and rested for a bit. When she woke up around 12:15 she was happy and smiling, I got her to grab at one of her toys and she started sucking at her hand again so I gave her the binkie an she did good for a little bit but she was just to hungry again for the binkie and was getting really mad so finally at 1pm they started her feedings again and about 10 minutes later she started having another one of her spells where she gets mad she clamps down and basically stops breathing .. She ended up throwing up so they stopped her feeds again and now she's sleeping. This episode wasn't as bad as the first one which is good however, they did tell me that if she keeps having these then she will not be able to go home till they are gone so now every time she does this all I think is great now it'll be even longer till she comes home. They also want to up her on a new medication and take one of the ones she is currently on away, so we'll find out more about that when the doctor comes in and discusses that. So that has been my exciting morning and early afternoon, I just hope that's the end of it and we can move forward from here. They also found that there is some bacteria around her Trach so she is on two antibiotics for the next 14 days.

The little bit of good news is, they did a chest X-ray to see if there as something wrong with her chest or something blocking her Trach like a mucus plug or something and it came back normal .. The doctor said there was no new change from the one they did yesterday so this is all a result of her being mad. So Praise God it's not something horrible .. Puts a new meaning on the whole "I'm going to hold my breath till you do what I want" things from our kids .. She actually really means it lol!!!!

Sunday, January 23, 2011

Here's The Pretty Baby!!

Such a beautiful pretty baby .. If you look closely you can notice she has two different colored eyes. This is how wonderful God humor is: Well both the boys have brown eyes, so my whole pregnancy we prayed that Eowyn would have different colored eyes .. lol I guess we weren't specific enough so God gave her, literally, two different colored eyes lol .. We just wanted something other then brown!! Isn't God funny!!

Saturday, January 22, 2011

Eowyn Update 28: Having A Rough Day!

So today around noon Caleb got a phone call from Eowyns nurse, she told Caleb that around 8am Eowyn started breath really fast and was having trouble catching her breath, her HR also started to climb and her saturation was going down into the 80%'s .. The doctor came in and order a large panel of test to be done and for them to preform an x-ray on her of her chest. They also had to raise her vent settings, she is now on 40% oxygen (not to big of a jump because she was already on 35%), the rate also went up from 10 to 14 and the pressure was on 22 and is now on 24. So the changes are not huge but it's not the direction you want to be going in. The doctor called back and spoke to me around 2pm and told me that her white blood count was elevated and that they found out she was anemic, so they ordered some antibiotics (which we are still waiting on) and order for her to have a blood transfusion. He also told me that the dietitian is making an order for Eowyn to receive a multivitamin that has iron in it to help her produce blood (which isn't a huge surprise to me because both the boys have been anemic their whole lives and my side of the family has a history of being anemic). She has been getting the blood transfusion for the last hour and she has about an hour left. Her HR is still high, she's sleeping right now and usually it's around 120 but right now it's at 145 and her respiratory is usually 25-30 and right now she's at 55-60. Her saturation was at at 92% or lower when I first got her at 3pm, but now it's come up to 97-98%. As for the test results we won't know anything till later tonight for tomorrow .. Not sure if this is an infection and if it is they don't know if it's from her Trach, her G Tube or her PICC line, right now nothing is clear but they still want to put her on antibiotics because with her history in the hospital and her condition they can't wait and take the chance that nothing is wrong, they basically treat it agresivley and if it comes back negative they just take her off the meds. So with all this not so good news, I won't say bad news because we've seen far worse, we do have a little good news .. On Thursday she had an ECO done of her heart and chest again and the pulmonoligist (the doctor who will be following her even when she comes home) told Caleb and I yesterday that the ECO did show SOME improvement, nothing crazy he said but there is improvement .. In my book "Some" = PRAISE GOD!!! Even with little set backs like today there is still need to rejoice .. God is good in everything He does and though we may not know the reason we do know how big and powerful our God is .. Take refuge in the fact that everything is in His hands!!! Please keep Eowyn in your prayers today, that she would feel great and recover from whatever this is quickly .. Thank you all, God Bless!!

P.s. The training is going great, Caleb got to change her Trach on Friday and I did all the cleaning and hygiene care .. We also got to learn how to bag her and give her one breathing medication (basically it's an inhailor that opens her lungs). We are supposed to start training on the vent but we will have to wait and see if she is doing better by Monday before we start all that, I'll let you all know what happeneds.

P.s.s. This post was writen on Saturday but for some reason it wouldn't let me post it at that time so I'm posting it now .. the only thing that has changed is the Mode of the vent. She was on this mode that only suported her breathes every time the vent would breath for her, now the vent gives her suport every time SHE takes a breath .. even if she breathes 60bpm the vent will suport her every single time which will help give her a break and not have to work so hard to breath. Oh also on Friday night around 7:15pm I was leaving a parking area, trying to get home and a guy ran his stop sign and hit my car .. so just one more thing to add to my plate. God is good and protected everyone in the accident and now the long proccess of insurence agents and trying to get my car fixed is starting.

Thursday, January 20, 2011

Eowyn Update 27: Training and More

Well as you already know it's been a while since our last update .. Everything is going by so fast now and with Caleb working and going to school time feels nonexistent. So I'm going to try and update you on everything that has happend in the last few days .. First, we started training on Monday (17th), it went really good they really just forcused on showing us how to clean around the Trach area, changing the neck ties and how to clean the old Trach so it can be reused. Second, she got her G-Tube put in on Tuesday and we took that day off of training so she would have some time to rest .. She was upset and a little in pain when I saw her but she is doing great now and it's so nice to finally be able to see her whole face, with no tubes no wires no tape. Third, we got to put our knowledge to the test, on Wednesday we had to do everything we watch the RT do on Monday ourselves .. We worked together and got her all cleaned up and looking nice, we also watched the RT put in an entirely new Trach because that was part of our lesson and Finally today we got to do the whole thing ourselves, so Caleb washed her down and changed all her dressings for the Trach and I got to up a brand new Trach into her airway .. Then tomorrow we get to switch roles, I'll do the cleaning and Caleb gets to put in a brand new Trach. After the Trach care is covered we move on to ventilated settings and how to operate her vent. Speaking of vent settings she did have a little change on her settings, her rate is down to 10 and pressure is now at 4 .. They tell me these are really low vent settings, the oxygen is still at 35% but oxygen is a treatment for hypertension so she will most likely be on oxygen much longer then she will need a vent. She also got a swallow test done today, since she got her sucking reflex back they wanted to see if she would take a bottle and they wanted to make sure that when she sucked it wasn't going into her lungs. The study was done at 1:30pm and she past with flying colors .. Not only did she pass but they said she was the fastest study they had ever had lol .. But they did starv her for 4 hours to do the study so she sucked down the formula like it was going out of style. So now she is sleeping and I have to get going so I'm back in time to take CJ to wrestling. They also increased her feeds and are now giving her 45 cc's over a 2 hour window and then turning the feeds off for 1 hour and then repeating the process. Hopefully, with the doctors consent I will be able to feed her myself out of a bottle soon .. I can't wait!! Thank you everyone for your prayers .. Oh we also got the home evaluation done on Tuesday and everything seems to be in order, there are a few things we have to get and one of them, moving the water heater, will have to done before she can come home so we will be doing a fundraiser soon to help with the cost of all these changes that have to take place .. Ok so I really do have to go now but thank you all very much for keeping us in your prayers .. I'm so happy to be able to give you good updates, Praise God for all the wonderful and positive changes that ar e happening!

Sunday, January 16, 2011

Eowyn Update 26: 4 Months Old~Visit From Brothers

Little Miss Eowyn is 4 months old today .. I just can't believe I was blessed enough to see this day. She is getting so big, every time I pick her up I can tell she's gotten heaver or she's getting taller and her hair in the back is finally starting to grow back in, Praise God!! Everyone who watched over her in unit 5700 comes and checks up on her and they all can't believe how well she is doing and how great she looks. I get people telling me all day how beautiful she is and what a great smile and personality she has. I am so blessed to hear all the nice thing's people have to say about her. She is one very happy baby, I don't think very many people can go through what she has went through and still have the happy disposition she has .. She's so unique, I'm just so blessed that God has given me charge over her. So for her 4 month birthday she got to have a visit from her daddy and brothers .. They got here around 2pm and it was perfect timing too because she was wide awake and roaring to go. CJ and Jesse go to see her, talk to her .. They asked questions (well CJ did most of the asking, Jesse just pointed to things and said "What's that?! But it's a question none the less lol) and the best part about it all way CJ got to hold her (see above picture). You should have seen him, he was blushing with happiness and couldn't stop smiling .. He talked to her and made her smile and squirm. He got a little nervous whenever she would move (I was holding her with him) so after a while of her kind of going crazy he said he was done holding her. She goes crazy mostly because she's IN LOVE with CJ and I'm serious, every time she hears his voice or sees him or his picture she just goes a little crazy. I think it's because when I was pregnant with her every morning and throughout the day he would come up to my belly kiss her and say "Hi baby sister, I love you" .. It was the cutest darn thing I have ever been blessed to see!! Jesse was excited to see her also, as excited as a 2 year old can be to see his replacement, as far as being the baby of the family that is. He said hi to her a few times, looked at her and said he loved her but when we asked if he wanted to hold her or touch her he gave us a firm "NO" .. So we just let him be. Then the baby took a nap and the 4 of us went to get some lunch. It was a very good day, very blessed to have all my family here on this day. God is so good and faithful and I'm just so happy about what He is doing in our lives, every time I think about it I find myself grinning from ear to ear .. Praise God, Hallelujah!!!

P.S. Caleb and I start training tomorrow around 2pm .. Please keep us in your prayers. We get to practise doing a Trach change on our own daughter, even more nerve racking in my opinion!!

Saturday, January 15, 2011

Eowyn Update 25: From Unit 5700 to 5800

So I went to grab a bite to eat last night and when I returned to her room I walked in on a nurse grabbing all Eowyn's belongings and piling everything into her bed .. I was just curious as to what she was doing so I asked:
Me "Um, sorry what are you doing?"
Nurse "Gathering her stuff together"
Me "Ummhhmm, OK good, Why exactly?"
Nurse "She's leaving"
Me "Leaving to go where"
Nurse "Oh they didn't tell you?"
Me "I'm assuming not, why tell me what?"
Nurse "She going to be moved"
Me "OK got that, to where exactly
Nurse "She's going to Step Down"

Sounds bad right? That's what I thought when she said it to me .. sounds exactly like the name, a step down, like in the wrong direction, like Eowyns getting worse .. That's what I was thinking.

Me "Is she getting worse?"
Nurse "Oh no she's fine, that's why she's going to Step Down. We need to make room for the other patients coming in who are sicker then she is"
Me "Oh right so it's a good thing then?"
Nurse "Yep, means she a step down in sickness .. one step closer to going home"
Me "OK great, you had me worried for a minute there"
Nurse "Sorry, don't worry it's good thing"

So to keep this long story from getting longer I will just say Praise God!!!
She is doing very good, HR is perfect, saturation is 100%, I even get a little more responsibility as far as taking care of her like washing her, changing her diaper, holding her, getting her to suck on a binkie and bottle, it's great and she seems to enjoy her new room, the only down side I think is that she now has to share the room with another baby .. But the nurses all seem nice and I have yet to meet her new doctors. Just more step closer to being home .. Praise God!!!

p.s. Also, I'm not sure I told you but the results from her PH Probe test came back and everything is normal, Praise God!! She may not even need to G Tube if they can get her to suck on a bottle .. I've been working with her on trying to get her to suck on a binkie and she's doing great so I hope when the speech therapist comes back to get her to take the bottle that we have a praise report to tell you all .. Keep Praying!!!

Friday, January 14, 2011

Eowyn Update 24: Training Will Begin!!

Well it's been a few days since I last updated everyone on Eowyn and what better time to do it then when she's sleeping .. She stays awake a lot more now and with trying to play with her, keep her entertained and do little things like change her diaper, give her bathes and do her hair the time goes by a bit faster now. So she is doing really good, she has been for a while now. Her HR varies depending on if she's awake or sleeping but for the most part it stay around 120-150bpm, her saturation is at 100% pretty much all the time now, Praise Jesus!! The oxygen and vent settings are all the same and I don't think they will be changing them, I think these are the settings she'll be coming home on. Which brings me to my next exciting update, Caleb and I will have our first Tracheotomy Changing class on Monday at 2pm. One more step in the many steps needed to bring her home. We also got our car evaluated today to make sure it was big enough and safe for us to bring her home in and it passed, however with the amount of stuff they were telling me needs to be with her at all time (plus the nurse who has to sit right next to her should we choose to take her anywhere) our car will not be big enough for all of our kids to ride in all at the same time. So, should we choose to take all the kids somewhere we will need to borrow a much bigger car or should I say a van. Also I found out that when we are ready to bring her home Caleb and I will have to take all her stuff (a vent, oxygen tank and suction machine, along with the tubing she needs for breathing) and somehow secure it to the inside of the car with bungee cords so that at any point none of the machines can move at all because they will be huge dangers for all of us if we were to get into an accident with all that equipment in our car .. I was a bit (well a lot) overwhelmed when she was going over how everything would need to fit and how she thought we could position everything, also there will be no training for how to get all of the equipment into the car .. we will have to just take the baby down to the car and basically figure it out while 2 physical therapists watch us so they can see whether or not we can satisfy their regulations. I don't think Eowyn is ever going to be bale to leave the house, unless it's because we have to for doctors appointments. I just really pray she doesn't have to be on this vent for to long because if she just had the Trach it would alleviate all this stuff we have to tie down in the car and basically make everything easier and faster .. The physical therapist was telling me it could take from 2-4 hours just to put Eowyn in the car, tie and secure everything down, I mean my goodness this girl is going to require a lot of our time lol, not that she didn't before but now she's just getting ridiculous. But even with everything we still have to do I am excited to finally be starting our journey in training so we can bring her home .. God is so good and He amazes me daily, I learn the most wonderful examples of His love when looking into my own daughters eyes watching her smile back at me without a care in the world. Knowing how much she trusts us to do whats right for her, such innocence and this gives me a whole new outlook on trusting God as a baby trusts her parents .. I mean she knows nothing and can do nothing but still she is safe and cared for and all her needs are being met, and all she has to do is smile and look so stinken cute .. Oh man she drives me crazy with all her cuteness, I just want to eat her up!!!! So as you go from this page and go on with the day please keep Eowyn in your prayers and please keep Caleb and myself in your prayers also .. There is a whole lot of stuff we need to learn and somehow keep in our memory and Caleb is going to school full time and teaching this semester so everything has to somehow work together perfectly for us to get the training done as fast as possible and finally get her home ~ God is so amazing and thank you all for your continued prayers!!
p.s. Also in the picture Eowyn got to play in a bouncer yesterday for the first time .. and she loved it!! If I were laying down for 2 months I would love to be sitting up too. The chair vibrated and sang songs, she just didn't even know what to do with herself .. She's going to be so spoiled lol!!!

Monday, January 10, 2011

Eowyn Update 23: PH Probe

Well our baby is doing great again, Praise God!! Her HR is 130bpm, Saturation is 99-100%, her breathing is perfect and she is still breathing way above the vent. The vent settings are doing great, same as yesterday, no big changes. Today she got her ECO done and we should have the results for that tomorrow. It will show if the Hypertenaion in herr lungs has gone down at all since the last test. Also, it shows whether the heart has decreased in size and the functionality of the heart as well. Please be praying that the hypertension has greatly improved and just for overall complete healing in her body. A nurse did come in and insert a PH Probe which will measure (over a 24 hour period) how much acid reflux she has. The purpose of this test is to see what kind of GI tube she will need to have put in. If she has a high count of acid reflux then an OR doctor will have to insert the GI tube and fix the little flap that controles the acid, if she has a normal amount of acid reflux then the procedure can be done bedside by her regular doctors. Like I said, the study is done over a 24 hour period so we won't know anything till tomorrow. Other then all that she has a pretty uneventful day .. She'll get to just sleep, poop and play, which is all any baby wants to do. I myself feel tired, overhelmed and I just think to myself how unfair this all is, not just for our family but mostly for her. I feel bad she has to go through all this and still there's no answers .. it's just this way because it is. Personaly I really can't wait untill I'm done seeing this hospital .. Everyone here is great but I'm so ready to take her home and try to have a normal life, as much as we can anyways. She's doing really good and I should be happy, which I am however the stress of it all is starting to weigh on me. Plus Caleb is going to start school tomorrow and then start teaching next week so I'm not sure how seeing the baby is going work, plus the boys are sick right now .. CJ and Jesse were throwing up last night and now Jesse has a slight fever, plus there is other health problems going on with Jason and Britnys' kids .. We are already getting medical bills in the mail and I just think everything is a bit much for me right now. So the stress of life I guess is trying to bring me down. I just need to keep forcused on God and all the good things He's doing in our family and in Eowyns' life and little body .. I know this will all pass, I'm just wanting it to pass a little bit faster!!

Sunday, January 9, 2011

Her First Outfit In 7 Weeks ..Praise Jesus!!!

I am so blessed to finally be able to put an outfit on my baby girl .. Thanking God for all the little things I used to take for granted ..God is so good!!!

Eowyn Update 22: Next Big Step ~

As I walk into her room it seems like I fall in love with her even more .. How is that possible?! It's not like she has done anything to earn my love, hasn't done anything for me and when she grows up she might even not like me from time to time, yet my love for her surpasses all words in my vocabulary .. Then to think about how much more my Father God loves me, even though I don't deserve it, it's an impossible task and I just simply won't be able to fully wrap my head around it until I'm in His arms. Through this situation with Eowyn God has given me a great insight to truly knowing how much He loves me. How, through everything I do or don't do, He loves me. When I don't earn it or deserve it, He loves me. Though I may grow up and tell Him (as I stomp my feet) "I don't like you" from time to time, He is patient and He loves me .. What have I done to earn such absolute perfect love? Nothing, yet He still loves me!! That is an incredible thing to think about. Now for your update, Eowyn is doing fabulous! Her HR is around 140bpm which is a little high but she's kind of agitated right now but when she is resting the HR is around 109-120bpm and that is perfect. Her saturation is 99-100%, sometime you can see it go down to 85% but it doesn't mean that's what it really is, because she can move a lot more the little probe they have on her foot to read the saturation doesn't read properly .. You should see how fast she can move those little feet lol it's funny and really cute. Her respiratory is doing great, she is breathing above the vent and I think she is finally getting used to the Trach a bit .. in fact she has already detached the vent from her Trach several times. That will be something she'll have to learn not to do but for now all we have to do is reattach it and everything is fine. The vent settings have changed a little bit, a few of the setting I'm not sure about and I don't know what they do but those only got changed by one point or so .. The big one that changes is the rate setting, it has been on 16 for a while and then last night around 1am the RT (Frank, who is super nice and plays with Eowyn and will just talk to her every time he comes to do a treatment) came in and with his stealth ninja moves turned it down to 12 without me even seeing him do it .. I only recognized it when she woke up and I was standing next to the vent machine playing with her, I looked over and was in shock to see the setting had gone down .. Well she is doing great, all her stats stayed up! The next big thing that's going to be happening is, if all goes well and she tolerates it, at 4pm they will be turning off her Milrinone which is the last IV medication she has going into her .. This is big, not only because it's one less drug she's on, but for her to come home she has to be off all IV meds. So if this goes well she will be one step closer to coming home .. YAYAYAY!! Then after today the next big step is coming either Monday or Tuesday .. They will give Eowyn another ECO to measure her Hypertension once again and see if it has decreased at all from the last one she was given 2 weeks ago .. Everything is moving in the right direction, please keep her in your prayers and give all the Praise, Honor and Glory to God!! He is doing a Great and Mighty work in Eowyn and I am so blessed to be able to see it all unfold.

Saturday, January 8, 2011

Guess Who FINALLY Gets To Hold The Baby!!!

Eowyn Update 21: First Trach Change!

So the first Trach change is complete .. actually it was done this morning before I even came in to see her, but non the less it's done, it went perfectly and all I have to do is wait till she's done with her nap to finally be able to hold her YAY Praise Jesus!!!! I will be getting a picture of that and posting it for all to see. So a couple of things have changed since my last post and all for the good .. As you know she got changed into a bigger bed and we have managed to deck it out with toys and decorations to keep any babies attention going for hours lol, the bed is really cute and super colorful, I'll try to get a picture of it up soon. Another big step for her is last night around midnight the doctors were doing rounds and told our nurse to turn off Eowyns' Morphine and Versed completely .. She is now on METHADONE and ADVENT!!!! Never thought I'd be glad to say my kid was on Methadone but here we are and I am so excited .. The nurse (Raquel, who is another one of my favorite nurses, she's awesome) told me the Methadone makes her sleepy so that's why I'm waiting for her to wake up to hold her .. I also found out that the Methadone and Advent is given every 8 hours orally, first they give the Methadone then 4 hours later the give the Advent, so every 4 hours she is getting some type of medication and now every couple of days they will slowly go down on the dosage till she is able to come off of them both completely. The doctors have also been trying to increase her feeds but every time they go up on the cc's the baby ends throwing it all up, or at least most of it .. She's still pooping so I know she's getting something, she's just not ready for that much. She has to be on 90cc's of formula before she can go home though so I don't know how long that will take. Currently she is on 25cc's and it's on a constant drip of formula .. she has to go from that to eating 90cc's in a 30 minute period every 3 hours. It's fair to say that on the feeding department she has a little ways to go. But also she has to be bale to tolerate the 90cc's before they will even put the GI tube into her belly. The lower GI still has to be done before they put the GI tube in so she has a little while to go to get used to the 90cc feeds. So everything is looking really great, PRAISE GOD!!! He is so wonderful and I just love watching the hand of God move in our family .. To look back at the first pictures of her when she first got here and first got on ECMO to looking at how she's doing now, it just blows me away in amazement at how God works and not just through this situation but through everyone who has been involved in reading this blog, praying so diligently for her and everyone who has supported us financially .. So many people have been touched and changed through this and I am so glad I have been able to witness everything .. Especially to be blessed enough to see this miracle first hand. God is so Fantastically Amazing .. What else can I say!!!!

Always Moving The Tongue!

Wednesday, January 5, 2011

Eowyn Update 20: Time For A New Bed!

Baby is doing great today! Her HR is around 130 or lower, saturation is 100% and all the vent setting are the same except the oxygen. They had to raise the oxygen to 50% for a short time because they finally were able to wean her off the INO completely PRAISE JESUS!!! One more thing she no longer needs to depend on .. plus it makes her one more step closer to coming home, she can't come home on INO so this is a step forward for sure. They are also going to start her on Methadone and Adamant which will help her be able to come off the Morphine and Versed. She is very addicted to both medications and she will not be able to come home on drips so the Morphine and Versed have got to go in order for her to get even closer to coming home .. Not sure if they are going to start the two new meds tonight or tomorrow but I'll let you know when it happens for sure. Another big thing is Eowyn gets to get a new bed Yaya!! She is so small for the current infant bed she is in so they are putting her in a large crib sized bed. It's really cool mostly because we can hang toys for her to see and start to play with .. So even if we're not there to entertain her when she's awake she will be able to see something other then the ceiling or stare at all the medication she is on. Plus we will be able to see and reach her better, which will be really important because, come this weekend, after her first Trach change we will FINALLY be able to hold our baby girl for the first time Yaya!!!! PRAISE JESUS!!!! God is so good and I just can't wait to hold her. I do have a prayer request for you all: Please be praying for our nephew Jonathan. He is 4 years old (almost 5) and his parents (Jason, Calebs brother, and Britny his wife, who flew in from Russia to help us with the boys while Eowyn is in the hospital) just found out he has H Pylori (Helicobacter pylori: Bacteria that cause stomach inflammation (gastritis) and ulcers in the stomach. This bacteria is the most common cause of ulcers worldwide. It is often referred to as H. pylori. H. pylori infection is usually acquired from contaminated food and water and through person to person spread. The infection is common in crowded living conditions with poor sanitation. In countries with poor sanitation, 90% of the adult population can be infected. In the U.S., 30% of the adult population is infected. One out of six patients with H. pylori infection develops ulcers of the duodenum or the stomach. This bacteria is also believed to be associated with stomach cancer and a rare type of lymph gland tumor called gastric MALT lymphoma.) He is now on two different antibiotics that are at a double dose for his age, an antacid that is at a double dose and a double dose of Pepto-Bismol all of which have to be taken multiple times a day .. Please keep him in prayer, for healing and for protection from side effects from all these drugs. Thank you all so much for all the prayers you're putting out there .. All the Praise, Glory and Honor be given unto God!!!

Tuesday, January 4, 2011

Eowyn Update 19: Upper GI

So the baby is doing really good today. She did have one moment where her stats went down really low but I thinks it's because they tried to go down on the INO again and she wasn't having it. For the most part today she has been sleeping and stable her HR is around 100-125bpm, her saturation is 99-100%, all the vent settings are the same (same rate, flow and oxygen). The INO is at 2-mikes right now so it is lower then the last time I updated her stats but when they went from 2 to 1 she kind of lost it and they had to go back up to 2. They aren't sure why she keeps de-sating every time they try to go down on the INo because they said at 4 mikes it's kind of like breathing regular air so at 2-mikes she is even lower then if she were to breath normal air but for some reason she like the INO and they will probably try again soon to get her off completely. They did take her down to OR to do an Upper GI on her, they need to make sure everything is in the right spot and working correctly in order to put the GI tube into her belly .. They said everything look great and functioned normally. Now they have to wait and get a Lower GI done before they can place the tube. I'm not sure when they that scheduled for but this is all information I was able to get out of Caleb. He'll be there at Loma Linda till Thursday and then he'll come home so I can spend a few days with her .. We decided to stay 3 or 4 days at a time because it's kinder to us on gas plus the boys get to see each parent for a longer period of time, trying to give them a little more stability, if thats possible. No news yet on when we'll be able to take her home or even when we'll be able to start our training to learn how to operate her vent and take are of her in general. I do know that the OR doctor will do the first Trach change on Friday or Saturday, it will have to be changed once a week, even when we bring her home, but they'll show us how to do that in our training. After the first Trach change they said we would be able to start holding her, which I am so super excited for and so is Caleb. They will also start her on Methadone in order to get her off Morphine and Versed, they did tell me that the general rule is how ever long you were on Morphine is the same amount of time you have to be on Methadone so you don't have withdrawals. Dr. Mirza said she isn't mentally addicted to Morphine but she is physically addicted and if they don't give her the Methadone she will have severe withdrawal symptoms and it could kill her. So apparently Morphine is no joke! In everything the hand of God is there and I see it everyday, not just with her but with our boys as well. I am going to be taking CJ and Jesse to go see her tomorrow. CJ has seen her one other time but this will be Jesse's first time seeing her since she's been in the hospital. He has to meet with a Life Coach Specialist before he can see her so that's scheduled first tomorrow morning and then they get to visit. CJ has already met with her and because of his age and how he did the last time he went she cleared him to see the baby whenever he wanted without having to meet with her every time. So with that I say good night and want to thank you all once again for be so diligent in praying for her for so long .. it is truly amazing to know we have so many people behind us and united under God. Praise God in all things!!!

Monday, January 3, 2011

Tracheotomy is Complete: Praise God~

The procedure went great, no complications and the baby is now resting and doing well. Caleb and I got up this morning at 5:30am, got some coffee (because who doesn't need coffee that early in the morning) and we were at the hospital at 6am. They didn't end up taking her down to OR till 7:30am, that was expected, at least I expected it because when does anything at a hospital ever start when they say it's going to lol. We were able to follow her down to the 2nd floor where the OR is along with her nurse (Shana, who is one of my favorites) and her RT (Julie, how is also one of my favorites) and a couple of other helping hands. We waited with Eowyn outside the OR double doors just talking to her and rubbing her head as the team of doctors and nurses came to take her from us. At that point there is nothing you can do but know and have trust in the fact that God is in control and nothing is going to happen that isn't supposed to happen. After about an hour and a half they came back up with her .. We were waiting in the hallway because we knew she was coming up and as she came off the elevator I saw her little hands moving (there's a relief that comes with seeing that kind of thing). The OR doctor looked at us and said after she got the baby settled she would be back to talk with us. After about 5 minutes she came and said that everything went just fine, there were no problems or complications and the only thing that they didn't end up doing was putting a scope down her throat to see how much damage, if any, there was to her throat because of the tube. She said they decided not to do it because in order to do it they would have to take the tube out, insert a camera and for that Eowyn would have to be breathing on her own for a few minutes and they didn't feel like she was ready to do that yet. They will wait and as she gets bigger and is able to come off the vent then they will decide if it's still necessary, she said by that time everything that could be wrong could have already resolved itself and there would be no need for any further testing. So this is a glorious time of Praise and Thanks to be given to our Savior for all the safety and provision He has made for Eowyn .. Thanks to all of you also who were so diligent in Praying for her this morning and during her whole stay here at the hospital. She looks super cute, not that she didn't already, but you never know how important your uper lip is till you have it covered with tape all the time. It's almost like she's a whole new baby now that you can really see all of her face. The nurses all told Caleb and I that they already knew she looked like me but now with the tape off her face you can see how much she REALLY looks like me lol .. Poor Caleb, maybe he'll get the next one!!

Sunday, January 2, 2011

Update On Tracheotomy: Prayer Needed!!!

So Caleb, the boys and I were eating dinner when I got a call from Loma Linda. At first my heart sank because I don't normally get calls from them .. even when things were really bad with the baby I didn't get any phone calls but the first thing she said was "Eowyn is fine", after that I was good to listen to what she had to say. So here is the update: The nurse called me and informed me that the operation that was scheduled before Eowyn's got cancelled so instead of her operation being in the afternoon she is now going to be taken down to OR at 6am in the morning to be prep and operated on .. I ask that you would please be praying for her, that the surgeons would have the rest needed to preform the operation successfully, for them to have knowledge that surpasses all understanding and that God would have a hedge of protection of Eowyn, that she would have no complications but would fly through this with ease. Thank you all so much for your prayer and if you're up around 6am or so please say a prayer for our little girl .. In God we trust!!!

I'm Excited .. Praise God!!

I am so excited about tomorrow, I know it may be kind of scary knowing the baby is going to have another operation but I just want you all to know that this isn't a step backwards. The Tracheotomy will increase her chances of survival and help her to develope normally, like any other baby would. With this Trach she'll be able to learn how to sit up, crawl and even walk. Her speach may or may not be delayed (only because they don't know just yet how much damage, if any, the tube down her throat has caused) so only time will tell. Also I talked to Dr. Mirza, who you all know I've had trouble talking to because of his way of think the glass is always half empty, but when he came in to talk with me yesterday about the operation he was suprisingly optomistic. He told me that this procedure was our first step in the dierection of being able to bring the baby home .. then he went through all things she'll be able to do as time goes by, how she may only need to vent for 2 month or 2 years, basically everything depends on how well she is doing and how fast the hypertenaion is taking to go down. Caleb and I will have to go through classes and training to learn how to take care of her and how to operate a vent, how to sucction her, how to feed her and just general stuff we will need to know to be able to adapt to having her home. Good thing God has made a way for me to be a stay at home mom. I know it won't be easy but this is what I've been handed and all I can do is trust that God has made something good out of something not so good .. He's made a way for us to bring Eowyn home and have a normal(ish) life and that is what I am so greatful for. I have been praying that God would heal her in such a way that there would be no other explination then it had to come from HIM and taking her home with a Trach and a vent might just be that way. I don't know yet what the future holds, or even what tomorrow holds, that why I rely on God and His disernment becaue He is the ONLY one who can see around the corner .. If this is where He leads me then this is where I will go!!! All of these little moments He gives me where I'm so excited to think about her being home, how I can't wait to finally be bale to hold her, I think they are to show me how much more excited God is to finally be able to have us home and hold us in His arms, like He's saying to me "See how much excitment you have in your heart? Now just think how much more excitment I have in My heart to finally be able to have YOU in MY arms!" and oh, how I can't wait for that day!!! Praise God!!!

Saturday, January 1, 2011

Eowyn Update 18: New Years Day

I hope everyone had a fantastically fun and safe New Years Eve and Happy New Years Day to all of you. I know everyone is eager to move on with the new year but make sure not to forget what the Lord has done in and with your life in the last year, the lessons you've learned, the people He has brought in your life to help mold and teach you, to help you grow closer to Him. We've had a long and challenging year and God has brought us through it all .. I found out in Jan. 2010 that I was pregnant, in June we found out we were having a baby girl, both boys have grown so much over this last year, we have overcame multiple battles with MRSA, a couple of ER visits with Jesse (one to have staples put in his head), Caleb got a job with MSJC teaching a computer class (which starts on the 18th of this month), Eowyn was born September 16th and then hospitalized on November 17th only one day after turning 2 months old and countless trips back and forth to LLCH, plus we got to see Britny and her kids who came from Russia to help us and Jason just made it back to the US last night .. and through it all God has had his hand on us the whole way, not to mention the incredible prayer and financial support we have had from all of you, this year has been a roller coaster of emotions.

Well Eowyn is doing good once again .. she's been awake for most of the day. It's been hard to get her to go to sleep, I think it's because she's been asleep for most of the past month and she just needs a little awake time, but her eyes get really red and you can tell at some point she's just being stubborn and that's when the nurse comes in and gives her more drugs to help put her to sleep, not that I think that's always the solution but what can I do the kid needs to sleep at some point. She got to meet her Uncle Jason today for the first time, I was very blessed that he got to see her with her eyes open even if they were red and tired looking. She's doing really good, her HR is 135bpm, saturation is at 97+% and the vent and INO settings are all the same .. I know yesterday I talked about the doctors taking her off of the INO, which they tried today, but it didn't go well so she got put back on it. The RT (Mike, who is the only RT that can truly pull off the color grey lol) said that at 3.6mikes (which is a very low amount) most babies can usually come off the INO with no problem but when he turned Eowyn's off her stats went down like hotcakes and he had to turn it back on. I think they might decide to go down to 3 or 2.5 sometime in the night but for now she is back on INO and staying very stable, which is where I like to see her. Like Mike says, she's getting mail here anyways why rush her, if she needs a little more time on the INO then that's how it has to be. I did get to talk with a doctor today, I forgot her name but she is an OR doctor, her, along with the resident doc and many nurses will be preforming a Tracheotomy on Eowyn this Monday in the afternoon. Caleb and I signed the release forms today for the operation so it is for sure happening. I'm happy they are going to be doing this because it means that we can finally hold her again, not to mention it will be way more comfortable for the baby then having that tube down her throat. Plus with the Trach Eowyn will be able to come off the Morphine and Versed that is helping with her pain because of the tube in her throat. Please be praying for her over the next couple of days, pray for the doctors, nurses and RT's that will be preforming this operation on her and looking after her in the days to come .. Also pray that they would have patience with us because I know we will have tons of questions and a lot to learn about taking care of our baby after this procedure. God has put some very wonderful and brilliant doctors, RT's and nurses to watch over Eowyn so I know He will send the right ones our way to help us through this transition .. Thank you everyone for your continued prayer, for Eowyn and for us.