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.

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.

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
http://www.ccsjonline.org/
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.

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!

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.

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!!

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.