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.