lab

Dr Kayser ordered a ton of lab this week. We ended up having it drawn at the childrens hospital...wow.. 2 sticks and got blood both times.. it was a relief... Nancy and I also got the grand tour of st francis..go ahead ask.. we can tell you where anything is :) Anyway.. her liver functions came back a little bit better.. Dr Kayser stress A LITTLE, so still not cured obviously.. but she is not getting worse, which if it was the DNA depletion she would after a month and a half of this.. or I would think, but I am not a dr. so I guess I wouldnt.. her clotting factor was a little high, but not worrisome and the test for the other will not be back until next week at least.

Thanks for the advice on the teething situation.. the tablets seem to help better than the motrin! plus we dont want her to grow immune to the motrin since she cannot have tylenol at this point. She ran a little bit of fever the night before last, and I of course got nervous and worried, but I knew in my brain it was from the teeth, but a little bit of me worried about some sort of infection..She has not ran one again since yesterday though.. so that answered my doubt..

Please keep praying for her. I know she is stable, but I just want so bad for her to feel like herself again and look like herself again with NO YELLOW.. and I would love for this all to be just a big fluke and her liver get better on its own.. I kinda doubt that will happen, but it would be nice.. anyway.. keep praying..

news from the geneticist...

Dr Kayser called and said they got some of the results back from the biopsies. He said the muscle tested perfectly normal and the liver was sick, which we knew, but the pathologist said that he couldn't appreciate the mitochondrial DNA depletion from the liver itself, and if he didn't know of the family history of this he would diagnose as galatosemia. They do test for this as newborns, but he said if it came back borderline, they may have thought nothing about it. So he is requesting her newborn screens from SJ tulsa and I am taking her to his office tomorrow for her weekly lab as well as the test for this. I am trying to take this as good news, I know that both the babies before were also tested for this and it turned out to be the other.. so I am undoubtly still wary to shed my fear.. if it is by chance the galactesemia, we are not sure yet if the liver could correct itself or if a transplant or other treatment may be necessary. It depends on the damage done.. So we are still waiting and praying and thinking positive thoughts. I love her so much and just want a miracle to happen and just wake up one morning and everything be perfect.. BUT as I have said before, we will do whatever it is that we need to do to get her better. as long as there is breath in my body, I'll never give up on her..

Oh he did seem pleased that her sugars are staying above 70 and that she is not behaving ill... other than the tooth situation :)

Isn't she just beautiful?!?!

good news, bad news...

Good news is Ella is trying to get a tooth in! her bottom gum has her first little "bump".
Bad news is Ella cant have Tylenol and isnt old enough for motrin yet. At the hospital they said it was okay to give her motrin sparingly, but she has to take so much of it and does not like the flavor.. so needless to say, its a chore.. we've been doing orajel and motrin when absolutely possible..
Our dr's appt this week is Thursday, I think I will ask if there are any other alternatives to help her out some.. my SIL suggested Pure Vanilla extract? any one heard of this? any other suggestions?
other news is it is soooo cold outside and the whole fam is home today.. I cant decide if that is good or bad :) lol...

enough is enough...

At least that is what Ella told the people at the lab today. She had a dr appt yesterday and weighs a little under 10 lbs now. We went to the hospital to have them draw instead of the RML next door. They needed a liver panel and a coagulation profile (to make sure her blood was clotting okay). They poked her a few times and only got enough to do the liver panel. So today we were to return and they would have a RN come down and try. We got there and they called one down and go figure, all of Ellas veins were crappy. So they try a vein in her head and only get half of what they need, and the nurse refuses to stick her again.. ( I also refused) so we called the Dr and he called the specialist and they decided her liver profile was stable enough and her physical exam was stable, to forgo it for this week.. maybe this will let her little body rehydrate and heal.. hopefully.. I'm not really sure what the next step is if they cant get any blood.. back in the hospital I would assume.. Anyhow.. we follow up with Dr Kayser ( the geneticist) on Feb 9, 2009 and hopefully find out our next move..

Happy 5 months!

Today our sweet baby girl is 5 months old.. Happy Birthday Ella Bella... Here's to MANY MANY more years to come... we love you...

this is Ella and her wubby bunny the week before she got sick..

somewhat back to normal...

We are home and settling back in. We even went to church this morning. She was awake about every 2 hours last night to eat. She is only eating about 1/2 an ounce at a time. We are praying since we are back home and in a more comfortable environment, that this picks back up.. It is enough to maintain her blood sugar for now, but not really enough to thrive like she should.. We are loving having her home and being home with Cayden.. it was so hard to be away from him, but he understands that she has and still needs lots of attention. I know this whole situation isnt even close to being over, but we can see how the prayers are working.. We thank every friend and stranger who has remembered sweet Ella in thier prayers.. The Lord is good and continues to bless us every day, just by her presence...

home

We get to go home Saturday (today) at some point.. I am so excited, but so scared too.. We will have to monitor her blood sugars..I have done this a million times, but never on my own baby..eventually when she is eating more, we shouldnt have to do it unless she acts ill. I cant wait for her to sleep in her own bed and of course me in my bed! We will follow lab closely and have an appt in 3 weeks with the geneticist hopefully for a change in diagnosis and a plan of what to do... I am still nervous and anxious about the whole situation... but I have drawn some peace in the last day or two... I just have faith that she is going to be okay.. it may take some time, but when it comes to her, I got plenty... I'm going to attempt to sleep now. keep praying..

ugh..

this is what I wrote after my friends lost their four and a half month old baby in November.. They are still struggling and trying to get by.. please continue to pray for them as well...

~~ the funeral was today. A beautiful service.. they seem to be holding it together as well as possible.. I didnt think I was going to be able to go in.. I stood at the back doors and saw the tiny casket and froze and then lost it.. I feel so bad for them and it all just hit me.. this could easily be me.. that could easily be Ella..I hate sids.. I hate the situation.. now I have this constant fear that something is going to happen to my baby..its just not fair one bit..

reading this breaks my heart...I know its not my fault she is sick,but I cant help but occasionally think maybe my fear of something happening willed her ill... I know in my heart that the Lord has a plan for everything.. I'm just still trying to make sense of it..

Good news is that she is completely free from IV and monitors. We are trying to control her sugars with out the IV. If we can do this for a day or two, I think we may get to go home and wait out the results instead of spending our days here. She is loving being held of the time and I am not minding one bit.. She is also taking her pacifier all of the time, which she hadnt before.. When God heals her, I think she can take her passy until she is in kindergarten and I will rock her to sleep until she no longer fits in my lap..=)

day 16

Ella is doing wonderful. I was worried about not feeling well from the meds and all of the events from yesterday.. but she is so good.. She had her pain medicine 2 times yesterday and then again in the middle of the night. Around 4 am, I heard her stirring and looked over and she was playing with her binky and kicking her feet.. Wow... She is smiling and staying awake longer periods of time. She still is not eating alot, and the sooner she is eating and taking enough formula, the sooner we can go home.. so pray for that still.. the soonest we will have results is 3 weeks to 1 month and maybe even longer on the blood work.. We did talk to Cayden, we took him to eat and explained the procedure and that we just arent sure what is going on with her still.. He said he prays for her all of the time and knows she is going to be okay.. well I better get.. I will end with a pic of our angel snoozing on her Nana today...

out of surgery

We are back in our room and she is sleeping off the day so far. The surgeon told us that the liver was yellow and hard (the small part she saw) and the muscle appeared perfectly healthy by her eyes. It is a tiny incision in her abdomen and she is already doing better now than she was at this point after the central line.. Anyway. I guess its good news about the muscle, not about the liver.. which we knew it was sick, I was just praying it would be normal I guess.. we're still not sure what all this means as far as the DNA depletion... we'll wait and see how she is and what all the dr's have to say.. I'll update later. I'm gonna take a nap..

maybe he's wrong

Lord PLEASE let it be something other than this... it doesnt even have to be a quick and easy cure...as long as there is a cure.. We'll travel to the end of the earth, give all the blood I have in my body, sell everything I have to make her better... I hate not knowing.. I love her so much, I feel like I could just die.. I wasnt made for stuff like this.. I cant handle stuff like this.. I love her too much to ever go on without her in my life every day... I cant tell Cayden she is sick.. he would just be crushed... I am at a loss.. maybe its something else, maybe its anything else but this..

Wednesday

big day on Wednesday. Ella will have her liver biopsy (open, not needle) and on the way out they are going to take a muscle sample to biopsy also.. Tomorrow is kind of a chill day, they will draw all kinds of lab and urine, talk to the surgeon about the procedure and pray that the dr is wrong and this is something that is completely treatable.. thanks to everyone for the kind words of encouragement and prayer...

diagnosis

is the same as what sweet Bailey and Slade had. A mitochondrial dna depletion. It never was meningitis and apparently this causes the milky spinal fluid and brain swelling, so they would naturally assume this is meningitis. The genetistist came in this morning and gave us the news. He is on the phone with Houston, Denver and Philadelphia hospitals to the guru's that deal with this sort of illness. We asked if he had heard of any survivors of this and he said "not in infants.." for now we will stay in the hospital and keep on the IV meds and the dr's monitoring her labs frequently... this is my worst case scenario and I cant breathe and I cant imagine going on without her... please pray like you never have before and feel free to share this information with anyone that prays. I know God still provides miracles, and we are praying for one now..

central line is in

and working well. She has had blood drawn from it and man... it is WAAAY easier.. she is having issues coming out of sedation, but seems to be resting now. She is scheduled for her liver biopsy on Wednesday.. the dr wants to talk to a specialist in Denver that was/is working on Bailey and Slade's (jays cousins babies) condition and is going to talk to him about Ella and make sure she doesnt have the same thing and see what he needs to do to eliminate this possibility. We are praying it is nothing serious like that and is just from the medicine or just the virus or bug affecting her little liver. So it looks like we will at least be here through the week again.. and hopefully other than the biopsy, it is uneventful.. thanks for all the thoughts and prayers and well wishes.. I will post again tomorrow and try to post a new pic... =)

okay

so at noon today they are putting in a central line and tomorrow they will do a needle guided liver biopsy. She is doing good and her blood sugars have been so good.. and she is grinning and being all cute again.. I've always hated roller coasters..especially emotional ones.. keep praying.. I'll update soon.

Sat PM update

A geneticist came in today to talk about what he thinks what may going on. Since Jay's 1st cousin, Amy lost 2 sweet babies to a metabolic liver disease, they are wanting to check Ella to make sure she doesnt have the same thing as them. They were sweet enough and came up and see us this And did say that she does not look the way they did with thier illnesses. He did mention doing a liver biosy at some point next week, ugh..they decided not to do the central line since one of her clotting test was abnormal..until that stabilizes they cant do it, and they cant find anywhere to stick another IV... she is not getting the IV glucose anymore, so they are checking her blood sugar every 2 hours making sure it doesnt drop again. As long as we can continue to get her to eat she should be okay. if it crashes they will have to put in an NG tube to make sure she gets the sugar in her system..We are suppose to see the GI dr some time and see what they say. they are needing more lab, but she has reached the maximum amount to be drawn today.. so tomorrow they will probably have to draw a ton again. Been a rough day, but she is a trooper... keep praying.

from going home to getting a central line..

well we are not going home any time soon. Last night one of the dr's came in to check on Ella and her eyes and head were so swollen. She ordered some lab and the glucose was 31 and her liver tests were way off again. So they had to IV her again at 3 am, and after an hour and a half of failed attempts, they got one in her shin. and they just had to take it out because it was no good.. so they have decided to do a pic line instead of the endless poking and prodding for blood and another IV. So we are waiting on this.. We're not sure at this point what is going on and what is causing it all. They are having a GI dr come in and evaluate her liver... they did the ultrasound and we're just waiting to hear something from someone... please keep praying... one step forward, two steps back I guess...

Friday

Ella's IV is out, hopefully for good. It was irritated and causing swelling in her forehead and eyes. I thought she was just really tired because she was barely opening her eyes, but I'm pretty sure they are swollen closed.. The good news is that she is only due to have 1 more dose of the antibiotic, so they are checking to see if its okay if we skip the last dose. Her liver test are back down today, so unless something comes up, I'll just have to take her in to recheck them out patient. Assuming the swelling goes down and all goes well today.. we are told we will be release tomorrow ( Saturday) or Sunday.. She is still not eating that great.. but I am just going to pretty much force feed her so she can make sure to get all of the nutrients that she needs and NOT have to get another IV. Sooo keep praying, hopefully this nightmare is almost over. I'll update again when I know more about the IV situation... Thanks everyone for the prayers and loving comments..

Oh yeah one last thing, our pastor came in the day before yesterday and read Ella the verses on how God never rests and how he is always there and she just looked at him and smiling.. I think she knows he provides for her and will restore her health.. I pray that we are the kind of parents that continually have unstoppable faith. I have been a wreck off and on, but I have faith in the Lord and that is what has spared my sanity. I have had moments of complete fear and empathy for my baby.. But never doubt.. He is good...


**UPDATE**
Ella's eyes are still swollen closed for some reason..keep praying for that. Still no IV though...

Wednesday

She has been all smiles and resting good today.. still not eating great, but enough for now I guess.. She had an Xray of her belly this AM because she was swelling some again.. I never heard anything so I assume its normal. She was given lasix and albumin to help and she has gone down some.. her feet are still swollen so I propped them above heart level to see if this helps. Last time we had a real good day she crashed that night.. so I'm praying hard this is a trend and every day is better and better! Her infectious disease dr told her this morning she was the smartest 4 month old baby she has ever seen.. she kept looking at him and smiling every time he said the phrase "go home".. =) nothing real big to report so I guess that is good news. I'll post either tomorrow or if anything comes up tonight! keep on prayin' for our baby.. The Lord is good and I have faith he is raising her up every day... and in no time she will be back to her normal self!

tuesday pm update

her liver functions came back better today,. but no real reason why the are elevated in the first place.. so they are just going to watch her for now. Good news, she got her cath and pulse ox taken off today and they are only going to check her blood sugar if needed instead of every 4 hours!! She ate 2.5 ounces a little bit ago, but threw it up.. I think it was just too much for her right now, she will have to build back up to that and her normal 4 ounces at a time... she is a little cranky this pm, she just got some pain meds to help her relax, so hopefully she takes a little nap and wakes up better in a bit..The infectious disease doctor did say that she will be on antibiotics until Friday. I am guessing it will be early next week before she gets released. I just know I am ready to be at home and things back to normal, but I am definately not wanting to take her home until she is 100% better..I'll update again later when I know something different..

tuesday pm

her blood work came back better than yesterday, still elevated, but no reason why.. she is better phycially today, but kind of cranky.. She just had some pain meds which make her sleep for a while, so hopefully she wakes up in a better mood..

Tuesday morning

She slept well last night, other than 1 feeding and the nurses bothering her :) It has been 1 week since we've been here, and 1 week since I about lost my mind with fear.. and dont get me wrong, we are alot better than last week, just not where I hoped we would be.. her liver enzymes are elevated , so she had more lab this morning, and will have some sort of imagining of her liver this AM, either ultrasound or another CT... so we're waiting to find out the cause of this and what that will mean as far as her diagnosis/prognosis.. I'll update again later when I know something new..

today..Monday

today was better than yesterday, and as long as tomorrow is better than today maybe, just maybe... we will get out of this place.. =) thanks for all the prayers

bad day(s)

you know that awful Daniel Powter song, bad day? Well that describes Ella since around 10 pm Sat night.. Sat day she was smiling, cooing, playing with her toy, being her cute little self.. so Jay and I decide since things are going so well that my parents could come up and stay with her and we would take cayden to eat and home to sleep in his bed for the night.. We had barely been gone and hour and my mom called and said her IV is leaking and they are going to have to put a new one in. ugh.. so she says its no big deal and to stay home for the night.. So I go home after dinner and do some laundry and kinda get C's stuff together for school and go to bed.. Sunday AM I called in to tell my mom we were going to grab a bite and will be right there, she tells me Ella had a bad night and seems to be doing worse.. so we get here and she is soo swollen and pretty much back to the way she was the day we brought her in.. crying and screaming by just touching her little arm and rolling her eyes back and just looks sooo pale. of course.. this would happen when I was gone... so the dr's come in and arent sure what is going on... do another head catscan and a boat load of lab.. It came back and her glucose was 29, so they gave her some sugar and it came back up.. the CT was normal, thank the heavens above..they thought maybe she had some fluid on the brain, but she didnt..her blood count is creeping back up a little and they are not sure why.. They put a cath in to measure her urine and started her on Lasix and in a matter of hours she had passed 7 ounces of urine, which is more than she had done in 12 hours. She had perked up a little bit, not alot, has a little color to her, still cranky and listless..Also her glucose was 41 and she got more sugar and brought it back up to 84 just about 1/2 hour ago.. Please Please continue to pray for her.. they are still considering her critical and considering putting her back in ICU if all does not pick up soon.. and we want her healthy enough to stay on the normal floor, where its not quite as scary ;) here are a few pics of our sweet baby from this evening.. see how swollen she is? She is not a chubby baby at all for those who havent seen her in person.. anyway.. keep praying..

Ella update for Friday

We are in a normal room now! and in a crib instead of a huge adult bed, which I found out they put her in just in case they had to intubate or work on in case of emergency.. that is scary that was on their minds! I just figured they were out of cribs? she is doing well today.. she has a round belly and some tummy problems, but we are working on them.. Nothing serious thank goodness.. Cayden was able to come and see her and was ecstatic, he brought her a bear that said "princess" and then told everyone that he could catch that she is the princess..lol.. she is still on IV liquids for now and hopefully soon she will be taking in enough formula to have it stopped.. she also is letting us hold her a little more, we just have to take it when we can get it though.. she is so sweet, even feeling bad, she just acts like a little angel.. Thanks to our friends and family for bringing bears, balloons and food :) Especially to Mandi who brought it twice, since Jay burnt the first meal up in the microwave... here are a few pics Mandi snapped.. keep praying.. we know this is the only reason that she is getting better so fast!

happy new year!

Happy new year from us at the childrens hospital :) Ella is very alert and active today. we've even had a few smiles. She let us hold her for a little bit a while ago for long enough to eat a bottle. The dr came in and said the final results from the spinal tap were pretty inconclusive because of all of the antibiotics she has had for the sinus infection and the IV dose she got at SJ owasso, but he is sure due to the look of the spinal fluid its meningitis and thankfully not got as bad as it potentially could have. I know that is because God is good and has had his hand on her the whole time.. We will for sure be in for another 7 days-10 days so she can complete the treatment. As I said before she still has a way to go before she can get back to 100%, but progress is progress.. :) and holding her for 5 minutes is like a gift from God for me at this point.. please continue praying for our sweet angel.. Oh yeah we were told that sometime tomorrow we will be put on a regular floor and out of the ICU! Woo hoo!! we love all the attention and care we've gotten here, but Cayden is just itching bad to see his baby sister! and I know for sure that will put a smile on her little face.. she loves him SOOO much! if anyone has any questions please email me @ jennygrl1026@yahoo.com or leave a comment and I will try to answer..