Written by me- Megan Nicole Jones
Wednesday, February 29, 2012
Written by me- Megan Nicole Jones
Monday, February 27, 2012
We prayed that day before finding out about going to Cinci, and was prayed over, and I found so much comfort from praying, then finding out about Cinci, I did the only thing I knew to do, and that was to pray, and pray and pray, and pray some more. And after all the praying, we felt in our hearts it wasn't thing to do at this time. As far as later on down the line and going to Cinci comes back up, that is a whole new story and day.
There are other reasons why we decided not to go, but in this situation I feel its something I do not to want share with everyone, just those people me and my husband chose to share information with. I'm sure every one can respect the privacy we choose. *smiles*
I would like to extend a personal Thank you to my friend Mollie. Talking to you tonight has been so wonderful and someday, we will meet, and I cant wait to get to know you more.
Today Chloe is doing well. shes down a little on her oxygen and off her antibiotics. She is still getting a lot out of her nose, she has to let this sickness run its course.
Sunday, February 26, 2012
Saturday, February 25, 2012
Everyone... please stop with reasons why we should go. All it does is make things harder, and we arent going to be guilted into going. We are going to do what God puts into our hearts. It maybe a later time we go, it could be monday, it could be never.... but for now, we dont need to hear reasons why to go because we already know them. Remember, we arent you, or the family with their reasons why they have to go and went, we are Mr and Mrs Jones, and our daughter is Chloe Lee Jones and we have faith, and we serve a big God and we will do what he puts in hearts to do. I will temporarely shut down my FB and will stop posting if any more reasons to go gets told to me. I will only keep contact with family. No offense to anyone, its just making things harder. I am thankful for the caring and prayers, and im not trying to be mean, but this is a huge decision.
Friday, February 24, 2012
p.s.s. The Image was made by a dear friends, cousin. I don't know his name, but all I can say is THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!
Wednesday, February 22, 2012
I want to be home so where I can see my loving husband every day and to have our new normal become just an ordinary day. I love Chloe with a so much love, and a kind a love I have never felt before in my life. I know Chloe will be home when Lords will has her be home... I just really miss being home.
My first couple nights here at the charity house, after finding out about the EB, all I could do was cry couldn't comprehend what exactly was going on.... an now... I do dressing changes and lance blisters, I don't even flinch when I see Chloe turning blue anymore... I just grab the oxygen and suction her mouth out and shes fine! I've sat while she was in surgery for 3 hours, and just let the time crawl by till I could see her, I've seen her cheeks completely raw, and on a ventilator... I've had her throw up on me, and seen her sores bleed, and non of tho's things faze me like the feeling of how I want us to be home. I know shes going to be okay, Shes going to be a spoiled girl, but right now, I just want her in my arms, snuggling at home all cuddled up next to Travis.
Tuesday, February 21, 2012
Her arms and legs are covered in bandages, aswell as around her. and her head because the back of her head isn't looking the best. It started bleeding a little bit during her dressing change even,
Her left foot as been puffy/swollen looking, I'm guessing from all the extra fluid she has been getting. So I propped it up and that made it go down a little.
The best part about today is, I was playing with her a little bit and I had her arms and was moving them around and talking to her and she started to smile!!!! I cant belive it but she is starting to smile!!!! I cant wait to make her smile more and too see her smile more and more. She is so precious and I just her so much! I can't belive she is at that age already to be smiling. I just want to make her smile more and more.
Sunday, February 19, 2012
Chloe had so many little blisters on her over the weekend. She has tiny ones on her hand, arm, leg, and 2 on big toe. On her side one blister the skin rubbed off and the back of her head is just terrible. She is on the oxyhood again because she had a fever of 104! They did cultures and so far they have had no growth, and she is on antibiotics. She has had a crazy weekend. She had 2 blood transfusions yesterday and one this morning. Right now she isn't eating because she has been sick. They are talking about she may be anemic and that is it common in EB, and that some point she may need a supplement or even be transfusion dependent, but this is not fact yet, just ideas.
The IV she had for her head would not stick so they had to use tape on her. I hate that they did that, but, the nurse said she spent about an hour trying different things to make it stay but nothing would stick from all the vaseline. And the nurse is wonderful, and she really hated to do that. When I saw it, naturally I was furious. and when she came in I asked her what had happened for the tape being used to make sure it wasn't some random person who did it. And they nurse started to cry and said she didn't want to hurt Chloe. I told her it was okay and that Chloe is a strong baby and she will be okay and that sometimes the good out weights the bad. I hate that she was crying, but I can see that she cares, I was just very upset when I first saw it. And they couldn't put it in her feet because they were getting so tender from heal sticks and previous IV's
I was talking to her Nurse practitioners the other day also and they are concerned about her nutrition. They took her off the breast milk and placed her on Elecare, ( EleCare is designed to meet the nutritional needs of infants who cannot tolerate intact or hydrolyzed protein. The amino acid-based, hypoallergenic formula is clinically shown to support growth in infants when used as a primary source of nutrition.1 Plus, EleCare has DHA and ARA — nutrients found in breast milk that help support brain and eye development. from Elecar.com )After talking with them, they said its a possibility that she may need a Gtube sometime in her future
Over all she is doing so much better. I wish her skin looked a little better but since she has had the transfusions, she has color now. Before she was so pale and didnt turn very red, and her lips were a very light pink and now they are red and so kissable! And she read rosy cheeks!!!!
Sorry for not posting anything over the weekend, My husband was here friday night and will be here untill tomorrow afternoon so I have been spending lots of time with him. We usually only get to see each other once or twice during a week because I am here at the hospital and staying at the Ronald Mcdonald house and he is back in our home town working. He is wonderful. Just seems like when ever he is here Chloe gets sick *smiles*
Love you all!!!!
Wednesday, February 15, 2012
Now Today today, Chloe had a wonderful day. She was alert and awake and just relaxed looking around.. She wore a cute little long sleeve onesie and matching pants with a flower on the booty and even wore the hat! She just had a really good. Her eyes looked so big and curious. There were a few people talking in the nursery and her eyes got so big and curious, and a little scared. It was so adorable. Then her hands where folded, it looked like she was praying. I had a pillow on my lap and put her head on my arm and let her lay on the pillow, then she laid on her side on the pillow and slept, she was such a happy baby like that. You could just tell she was happy and relaxed. It was a quiet simple, calm day. I am so happy she finally was able to relax. and no blisters either today. She did throw up on me today... twice. I was holding her and both times it was caused because she was coughing really hard, and the first time it got all down the side of my skirt on my leg, and it was really gross because it happened while she had milk going in her feeding tube. The second time, I was ready for it and cupped my hand under her chin and I got all the throw up in my hand and it was a puddle in my hand, so the nurse suctioned what was left out of her mouth then suctioned the pool of throw up out of my hand. It was funny how it played out. It made me feel like a mommy. :) I love simple days
Monday, February 13, 2012
Chloe had a fever of 103! very crazy, they did some labs and drew blood for cutlers, and did a LP, her white blood cell count is elevated, so far all the test are negative for infection, some stuff in her blood is a little off so they are watching her, and her labs for that, so she had a busy day between blood being drawn and getting an IV put in her foot
Today the renal Dr came in and just checked her out a little, and said her sodium is high so they may adjust her TPN. Her fever is gone so far and she didn't have any Tylenol either.
Chloe skin is okay right now... I think its almost the worst its been ( besides after surgery). Her hair on the back of her head is pretty much gone and from where they had that oxygen hood on her and she was on her belly, and she was rubbing, it caused 2 blisters. one I didn't get to see, just saw where it popped its self, and the other I saw last night and this morning it popped its self also. Her tongue got a blister from where she didnt get her passie and she was trying to eat the oxygen hood, and then now she has a little blood blister on her tongue from where it popped. She had a blister on her hand from her hand rubbing on the oxyhood, and one on a knuckle from the oxyhood. She had a blister the size of the broviac dressing from the duoderm. they blister was big, but there wasn't a lot of fluid so I had to push the fluid all to one side just to get the fluid out. I really don't like the oxyhood. They also put cotton balls in her diaper to catch her peepee for testing to make sure her kidneys are okay. I just feel like she has had so much testing done to her, and labs done, and cutlers to grow and everything else. She just needs a day of peace, and not being bothered unless its from her Momma.
She has special kind of nipple for her bottle and I am going to try and work with her tomorrow with it. I am considering staying at the hospital all night and day some time soon, so I can try and work with her and the bottle. She needs a chance to get it down. She is up to 25ml today and tomorrow will be an ounce, and she only gets five down before they decide to push her food. I think she can do it, she just need frequent breaks,
Sunday, February 12, 2012
So today we figured a better way to feed Chloe by just placing the nipple in her mouth and dropping the milk in the nipple. At 2pm we wanted to do that again but, while i was doing her bandage changes I looked in her mouth while she was crying like I always do, and she had a pretty good sized blister on the side of her tongue. We are unsure how exactly it got there because, She has had her passie for awhile now, so if she would have had a blister by now, and if it was from the bottle, I would think it would have appeared the first day with the bottle. So we are going to get her a special kind of nipple that is for babies with anything wrong with their mouth and put some aquaphore on the nipple and see if that helps any. A special thanks to The EB group and Janelle for the advice, I told the nurse, and we are using it!!! So until we feel like her tongue is healed, we are pushing her feeds though the feeding tube for now. It makes me so sad, It was like the whole side of her tongue! Thankfully it popped on its own and she didn't have to deal with it for to long.
After that, where the information stuff really started...
I have to have a pediatrician picked by Thursday, her primary nurse said so, so that way that Dr can be prepared for EB. Then we have to have a dermatologist, and then we may have to her follow up care appointments with the EB specialist in Cincinnati Ohio, and they meet once a month.
I guess when now that I have typed it out, it doesn't seem like it is a lot of information, maybe its just because I am so tired.
I really hope Chloe gets over what ever it is that she has going on. She has had a fever and coughing a lot, dropping her oxygen, or has a really high heart rate. May still be a reaction to her 2 month shots, and she has a minor cold. poor little baby doll.... I wish we wouldn't have to deal with mouth blisters.... but.... I guess we are. I am happy that it seems like more people are becoming aware about EB, Friends and family of ours are always on the look out for elephant and butterfly items for Chloe and I, It is so awesome. I love my butter fly child!
Friday, February 10, 2012
Today one of Chloe's primary nurses recommended a couple pediatricians so I am going to give them all call this following a week and maybe even thinking about setting up and interview to talk to them... See what one will be more willing to want to learn and take care of an EB baby, and who we personally think will better suit our needs with Chloe. Such decisions to make. one Dr is in our town, and the other is slightly out of town. So we have that to be thinking about, as well as things we are going to need for Chloe's care when she gets home.... gotta re arrange our room for the bassinet, and find some fabric and hem it for it because she may be a messy baby because all the vaseline and it getting everywhere as well has it being padding for anything hard she may have to lay on ( like her diaper changer) have to figure out a new routine, I am going to try and keep her on the same schedule for when she eats like she has now, she gets fed on the 8, 11, 2, 5 hours, so every 3 hours, so that will make things a little easier. and figure out a bandage change time for home, specially if she has a home health nurse, I may do it during the times the nurse is there so she can see Chloe with out the bandges on and be able to look over. So much to think about!!! the reality of her coming home is getting closer and closer. I cant believe it!!!!
If any of my EB friends have any tips for home care, and general products being used, please tell me!!! I feel like there was something else I needed to ask my EB friends about.... but I cant remember!!!
Chloe got 5ml of mommy milk, starting off small. When I gave her the bottle, she sucked a little, then would gag. wait a little bit, suck, and gag on the milk. She didn't know at first that she needed to swallow the milk! so half got in her belly, half got spat out. When 5pm came around it was time to feed her again. She had the same amount, and i stuck the bottle in her mouth, she gagged just a little, realized that it was mommy milk, and sucked and swallowed and went to town with that bottle! BUT she forgot to breath! So near the end of her bottle we sat her up and patted on her and let her catch her breath! I called after 8 to see how her 8pm bottle went and the nurse said she did wonderful, Just needs to remember to breath! I think if she keeps up the good work with eating the bottle, she wont need a feeding tube and she will just have to work on remembering to breath! I am so proud of her! She is a fast learner! Just like her Daddy!
She also got her 2month shots today! The nurse said she did really well with them and all Chloe did was cringe her face! She most get that from me because shots don't bother me to much, and when I used to give blood, I loved watching them put the needle in my arm. I know, weird. She probably has a tolerance for shots because of all the shots I had to get while pregnant also!
I am so proud of Chloe, She amazes me! I praise the Lord for everything he has done for her! He has truly gave her miracle... The Dr's gave her no chance on doing well with her skin, and was telling us that they would probably not do her surgery, that she had blisters on her insides because she had small spots off blood in her poo diapers. (even tho they didnt know if that was true) But you know what, her EB is mild, they DID her surgery, she had no blisters on her insides when they did her surgery, they said she wouldn't heal, and she is and has, and most of them thought that she was going to get worse, and shes only improving! I praise the Lord for everything he has done for Chloe, He is STILL in the miracle business! We have to pray, and God will move in the things we need him to move in one way or another! Sometimes it may not be how we want it, but God knows whats best for us and he wouldn't give us trials if we couldn't handle it, he gives us only as much as we can handle. I went to Church tonight and it was so comforting and wonderful. I am so happy I went. I almost didn't because I wanted to be there for when Chloe ate at 8 but I needed to go to church and I am happy I did! I'm praying Chloe does good with eating because she could be home in just a couple weeks if does really good from here on out! And she is going to chunk up fast once she starts eating! I cant wait!
I love Chloe! She is so amazing! It's amazing how one child, can change and impact so many lifes! Even I am guilty of this, a lot, if not all of us who read this blog sometimes don't realize just how lucky for the small things in our life. For our skin that we can pull and rub and scratch, without there being no trauma to our skin. There are so many different things from our skin to our hearts that we need to stop and take a moment to be grateful for, to be healthy!!!!! There are so many children with EB and other health problems that suffer from pain, disabilities, cancers, and other health problems each and every day and it is so sad... and the children who are dealing with though's things are some of the strongest people! Strength isn't physical, its emotional. That is how people deal with day to day events, is with emotional strength, from major to minor or from just being slightly annoyed to tragedies, emotional strength is what help us. And where does our strength and help come from? It comes from the Lord!!!!
Thursday, February 9, 2012
We cuddled for a while and played a little before my mom-in-law and sis-in-law showed up. It was a good day for my sis-in-law Stephanie, She held Chloe for the first time! Besides me and Travis, my mom-in-law Sandy, and Stephanie are the only other that have held her so far. Travis is lucky if he even gets to hold her right now! I just have this mommy feeling that all I want to do is hold that sweet baby!!!
We have been in the NICU for 2 months, there are lots of people who have had their baby in the NICU for a week or two... and having a baby in the NICU is never fun... but when its been 2 months and counting... the experience is a whole lot different, specially when you have to stay at a charity house in order to see your baby everyday because you live so far from the hospital! I am lucky that I usually get to go back home for a few hours on Thursday, but that is only for church! And when it comes to getting to see Travis.... I am lucky to see him on Sundays! that past few weeks, hes been driving up when he gets off work at 3am on Sunday morning, sleep in till around noonish.... spend the day with the baby and each other, and hes headed back home monday around 1pm or 2 too go back to work! Its not fun! Sometimes Travis thinks I have the easier side to all of this because he is the one working and away, and I suppose yes it is easier because I'm not working in a factory and away from my family like he is, but.... I do have really hard day I have to deal with. Sometimes I have to face her Dr's on my own with no one there helping ask questions and to help understand things. Take yesterday for example... Chloe had her procedure to have the broviac placed again... I think I was more of a wreck then, than I was when she had her stomach surgery because I had Travis and family around to help ease my mind off it all, and not worry.... I'm ready to go home... I'm tired... I miss my husband and family. I want to be home with my baby girl watching Sponge Bob. 2 months and counting is a long time in a NICU, but Chloe has proven to me, that I am a lot stronger than I ever thought I was. And if anyone reading this, and learning about EB, or anything rare, don't ever think that it wont happen to you, because rare diseases and events don't discriminate.
I showed the nurse practitioners the wound care products that was sent to me, and they are going to learn more about the product and see how affordable it is ( so that way we don't fall in love with it and we can't get anymore as the NP said. I am so thankful full tho for being able to have the product sent to me and to learn so much more about it!
Today was a really good day tho like I was trying to say... I was able to see our nephew Joshua, and he is just so sweet! I held my arms out to him to pick him up and he held his arms out to me, and I asked him for a hug, and he gave me a hug, and I asked him for sugar, and he gave me some sugars. It was so sweet! I miss all the little ones! I miss our other nephew and niece, and I really miss my 3 nieces. I haven't seen any of them since June 2011! same as with my parents and brother and sisters! I miss everyone!!!! Sandy, and Stephanie and Joshua and I, all went to Apple-bees and that was so wonderful to get out and do something, Then me and Sandy went to Gigi's cupcakes, and got a cupcake, then we went to a tanning salon and tanned for free! Its free tan week at Sun Tan City, so that was awesome, I haven't tanned in so long! I wasnt able to this past summer because of being pregnant, and I didn't feel good half the summer so I was always inside... Kinda... when it was nice and cool out me and Travis would sit out side and play rummy or scrabble! I truly miss that! I ate so many hot Cheetos!!! Oh yes and also we went to once upon a child and got some dresses for Chloe! Got some cute stuff, even a dress with butterflies all over it!
Well I guess ill get right to the point, WE ARE FEEDING CHLOE TOMORROW!!!!!!!!!!!!!!!!!!!!!!! WAHOO!!!!!!!!!!!!!!!!!!!!!! Pray nothing goes wrong!!!!
Well thats all for now! my eye lids are about to fall over my eyes! Have a wonderful day/night!
Tuesday, February 7, 2012
Also today, another nail came off thank goodness, it was looking really bad and I think she had a blister under it and that caused the blister on her finger to refill and look as bad as it did. When the nail came off it was moist and it opened up a whole side of the blister so I made sure there wasn't any more fluid.
OH before I forget, GO UK BASKETBALL!!! beat Florida by 20!
Monday, February 6, 2012
When we went in there, the nurse was in a gown and mask and was taking it off, and we were thinking "Oh my goodness, whats going on!?" And I remember looking over at Chloe, and then I saw an oxygen hood. Me and Travis hurry over to her crib ask okay, whats going on...
Chloe's finger where she had a blister at, was very red in color, and she had a fever of 101.3 and was dropping her oxygen. A day or two ago blister on her finger got lanced, but I lanced it again because I realized that there was more fluid in it, and I noticed that when I pressed on her fingernail, fluid would come out, so I'm assuming that there is a blister under her nail. the nail looks like its going to fall off, I just don't know when, but I can't wait for it fall off. So she had blood drawn this morning and she is on antibiotics vancomycin and gentamicin, her usual.
If hearing all that wasn't enough.... I was looking at Chloe and I was trying to giver her, her passie, and she didn't want it, so I went to lay it down in the crib with her, and I look at her chest and the clamp that goes around her broviac, was just sitting there, and I picked it up and showed Travis and he didn't understand why it was off. Well the nurse comes in and I showed her the clamp and she is looking at Chloe she says "There should be no that can come off unless..." and she grabs the broviac, and says "unless it comes out" and she is holding the broviac! It slipped all the way out! They shouldn't be able to fall out!!!!
They give her an IV in her head, and they say they are going to try and put a PICC line again at shift change-3 O'clock. Well Travis sadly had to return home to work and wont be back until this following weekend.
I waited until 6 O'clock to be able to return to the nursery to see Chloe. They could not get the PICC line. as of right now, she has an IV in her head again, and tomorrow at 7am they are taking her back for surgery to place another broviac line. Its what needs done, but im so frustrated because that means they are going to have her on the vent again, and she will be on it for a couple days before she gets off of it, and that means she wont be able to eat for the next couple days. Hopefully she gets off the vent fast, and by the end of the week she is fine and we will be able to feed her. I am thankful tho that this time when she gets put in the vent, the nurse practitioner will be there, and so will the nurse because they are doing it right there in the nursery before they take her back to make she no tape is on her skin and what happened last time doesnt happen again.
Sadly its like Chloe, for every two steps forward, its one back, but it could also just be the devil trying to get me down because we hear the news we have been waiting to hear for 2 months, and he is trying to bring us down, but thats not going to happen. We have been though so much already to let that happen. We have faith in the Lord. HE will have Chloe come home when he feels is the right time.
Sunday, February 5, 2012
2.) The skin on your hands is peeling because you wash and sanitize so often.
3.)Acronyms are a part of your everday lingo. Example: (Dsats, A's and B's, CPAP, ROP, RDS, PDA, ect.)
4.) Hospital staff such as receptionist, cafeteria workers, including parking garage staff know you by name, your baby's name, and how long you have been there.
g clothes for the first time is a big accomplishment for your baby.
6.) The NICU nurses see you more often than your family does.
7.) You have a better chance of finding clothes to fit your baby at Build-A-Bear rather than a actually clothing store.
8.)You've aquired a taste for hospital food.
9.) You always change your baby by putting the new diaper under the old one before taking it off.
10.) Hearing the sound of your baby cry is beautiful, not annoying.
11.) You know what 'bilirubin" is.
12.) It makes you want to scream when someone complains about being pregnant when their pregnancy is completely normal.
13.) When you see a full term baby and think "Man, that baby is huge!"
14.) When you child turns blue and the nurses have to use oxygen to pink'en up you baby, and you dont even flinch
15.) when you know how to get things working again before the nurse
16.) when your child turns blue infront of a Dr and he lets you make her start breathing again
17.) When you know who the good nurses and bad nurses are
18.) When you can change a diaper and clothes through two tiny portholes
19.) When your husband can't remember what an incubator is called so he just calls it a cage.
20.) When your baby is out of their incubator and in a cot for the first time is a big accomplishment for you baby and you couldn't be more nervous for them
21.) When you get discharged after birth and can't bring your baby/ies with you
What an amazing past couple days!!! Sorry I'm posting so late, its just that I've been really tired and when I go to make a post, I fall sleep. So ill start with Friday
I called the hospital in the afternoon, I was at home during the bulk of the day. When I called, the nurse told me that Chloe was doing really good, and that during the morning while the Dr's were doing rounds, Chloe decided to pull out the replogle tube. The Dr's then decided to leave the tube out and see how she does. Later that morning they took an x-ray so see if she had an air gas pattern, and sure enough she did!!! The tube was sucking out everything in her stomach, including the air they needed see! Chloe looks amazing without having a tube sticking out of her mouth. She looks like such a big girl!
Me and the nurse worked with Chloe on some developmental things. We placed her on her stomach and she almost lifted her head and turned it to the other side! Also I've been sitting her on her butt like a big big girl, and talking to her and playing with her, and she loves it! she just looks around and stares at you. Its just amazing how good shes doing!!!
Alright alright... now for the really really really good news.....
GOING TO FEED CHLOE ON MONDAY/TOMORROW!!!!!!!!!!!!!
Talking to the same nurse again, and they will probably give her a bottle for her first time feed to see how she does! I am so excited! I told them that I want to be the first person to give her a bottle and no one else. And today when Chloe was on her belly, she lifted her head completely up and got half way to turning her to the other side before she got tired.
I just cant believe how well she is doing. God has really moved for her and given her a miracle. We have so far since she was first born.
We had all the normal complication of a premature baby, apnea, EB, pyloric blockage, growth restrictions from not being able to eat, the Dr's and nurses saying they might not do her surgery, then it was they will do her surgery, but it depends on her biopsy reports, then they said are doing her surgery when shes 2000 grams, and finally they said on the 19th they are doing her surgery then the called and moved her surgery up two days on the 17th of January, ironically her due date, and now we are here!
Oh Chloe loves her passie now! when she gets mad, that is what she wants, her momma to hold her, and her passie.