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MAKAYLA MARIE
mel4smiles04 |
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BIRTHDAY GIRL!!
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May 13, 2008 02:08pm (EST)
Okay well let's see where to start. On Friday I took MaKayla to get her pics taken, They turned out really good. I'll have to put some on here!!! I spoke with our Nurse Practitioner on Friday and they started MaKayla on steriods to help her lungs. On Saturday HER BIRTHDAY she didn't seem like she felt very well. She did taste her cake but not really much. We had it at the new optimist club due to the rain and cold wheather. She got lots of clothes for this summer and some toys. We have all of Marissa's hand me down toys so I'm glad she got the clothes because none of Marissa's clothes from this age is summer clothes. Her and Marissa are getting a swing set too. They'll both love that, as they both love being outside! Hmm Okay well let's see, on Sunday, Mother's Day. I went out to breakfast and then we grilled out supper with my mom. It was nice. The girls got me a cute card and from them I'm going to get to buy some flowers to plant outside. Some people may think, whoo flowers, but that is what I wanted!!! Josh got me this flower/plant. It's a plant with one flower bloomed, called a Gerber plant??? I think, anyhow it has one pretty orange flower out of it. Hmmm Yesterday I had to take both girls to follow up appointments. MaKayla checked out okay, her lungs sound good, and he wants her to stay on continuous feedings until she comes off of oxygen. He said she'll prob be on it for a while now, but hopefully with summer we'll be able to get her off of it. Also he wants to see her back in 3-4 weeks to get her first shots and to follow up with this lung issue. Marissa, well she has a bacterial infection in her stomach/bowels and is to start antibiotics. On Saturday the pediatrician called me to check on her and to tell me that if nothing ended up growing then they'd have to do a colonoscopy. So as bad as it sounds, I'm glad something grew so that way she is on antibiotics and won't have to be scoped! She is acting better. She, Marissa, also has a follow up appointment in 3-4 weeks for her stomach/bowel issue. So again in 3-4 weeks I'll be tired from taking them both in....whew, it was a long evening. We got checked in at 5:50 pm and didn't walk out of the doctors office until 8 pm. So needless to say both of them were grumpy!!! We got KFC on the way home, ate and then they both went to bed. This morning I was so exhausted, from no sleep catching up to me, and I'm starting with cold symptoms which I know is from no sleep I had my mom watch Marissa for a couple hours so I could take a nap while MaKayla was still sleeping. So I'm a little rested now. I will be going to be early again tonight too!!! Thank you for all the birthday wishes for MaKayla and cards if you sent them!!!!! We will update sometime with those birthday pictures!!!
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Posted by mel4smiles04 | Comments: (4) | Permalink
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ANYBODY WANT AN UPDATE :O)
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May 08, 2008 06:34pm (EST)
Sorry for the lack of updates!! MaKayla is home. We got to come home Tuesday night. I don't know if that was the best thing or not. Iwas up pretty much all night Tuesday into Wednesday then Marissa slept in until 11 and MaKayla until noon. So I did get a little shut eye. MaKayla has for the past two nights coughed her head off!!!!! She will be okay and then wake up in a drenching sweat and coughing and drop her sats. So we go through the ritual, I turn her oxygen up, give her a breathing treatment, turn on her fan and sit up with her until she is all calm again. Sucks that it has to be this way but things will get better....right?!!! Well yesterday Marissa started to run a fever of 100.1 and was telling me that her tummy hurt, she was up at 11 and back to sleep by 1:30 and slept for two hours. She started in with diarrhea. Well last night Josh and I went birthday shopping for MaKayla and Marissa wanted to go so we did let her b/c she was not running a fever and I had to make two trips to the bathroom with her. I thought yesterday that I noticed blood in her stools, yes I know this is too much info but this is the CRAPPY days I've had in my life so I'm sharing. So we kind of just went on thinking it was hemmorrhoids and then this morning when Marissa woke up she was running a fever of 102.4 and had an accident in her pull up and it was bloody stool, then a bit later had some more so I thought okay let's see what the doc says. I had to take her and a stool sample to children's mercy to the clinic. Well he sent her stool off for culture and said yes it is indeed blood and drew a CBC w/diff and we should know the results tomorrow. I tell ya what, when it rains around me it freaking pours!!!!! I need a break. I don't think I have ever had this much stress in my life....things will get better though, they have to right??!!!  ) Marissa is feeling okay, just won't eat and says her tummy hurts. Tonight she is staying with her Grandma Mona and will be back in the morning. Tomorrow MaKayla has a meeting with her first steps lady at noon and then we are going to get her pics taken. I debated on whether to continue that or not but she only turns one once!!! So she is going to wear a mask until it is time for pics. She is still on increase oxygen sometimes up to a liter to keep her sats above 93%......I'm so ready for her to be better. I talked with our pediatrician today whlie I had Marissa there and he decided to start MaKayla on Pulmacort. It is for asthma kids and that is what she is starting to have symptoms of, but they can't "test" her for asthma so they can't call it that until later in life, for now it's called reactive airway disease. So yet another medication to get her through her days in life. She needs a purple heart award with everything she has and continues to go through. Her and Marissa, cuz Marissa continues to be strong and a loving little sissy no matter how often I have to leave her behind to care for MaKayla. Neither one of my girls know how much they mean to me. Someday when they are both bigger they will know. This weekend is mother's day so don't forget your mom's but most of all it is the most special weekend that I will never forget in my whole life!!! MY 1 POUND BABY IS TURNING ONE!!! I never ever thought we were going to make it this far. One day that she was the worst June 7, 2007. She was on the vent still, on 100% oxygen, not taking any breaths on her own, her oxygen levels would drop into the 60's and the docs told me, "Melissa there is nothing else left for us to do, it's all up to MaKayla." Thank God she had a special angel on her shoulder telling her she had to fight. She had to fight and did and continues to fight to get through life daily. We have just been through so much this past year that Saturday will be the most special day in her life even though she doesn't realize a thing. Well before I start crying I'm gettting off her and going to bake her birthday CUP CAKE!!! don't forget to email me if you want our address to mail MaKayla a happy birthday card!!!!!! She has one day left until she turns ONE......WAHOOOOOOOO!!!!!!!
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Posted by mel4smiles04 | Comments: (2) | Permalink
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WAHOO ;O)
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May 06, 2008 11:43am (EST)
DRUM ROLL PLEASE...... We may get to go home today!!! WAHOO!!! She has came down more on oxygen. She still needs it but is down. She has not had to be deep suctioned since last night and I just used the bulb syringe this morning and got lots back so that is a good thing. She was happy, playing, SMILING this morning. I was excited to see her smiling at me!!! The doc is going to come back around 3 pm and we'll make the decision then on whether to go home or not, and as of now we will go home!!! YEAH!!! She is sleeping now, I think as much as she was playing just wore her little body out!! Well I'm off to get some lunch, will update later on whether we go home or not!!!
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Posted by mel4smiles04 | Comments: (5) | Permalink
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STILL HERE
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May 05, 2008 07:53pm (EST)
Well today is about the same. We were on a liter all day until our night shift nurse came in and I asked if we could try her at 1/2 liter so we are. So far, so good. They deep suctioned her a little while ago and got quite a bit back. Of course she wasn't happy but sounds better!!! She was playing today when she was awake, but seem to have slept most of the day. It's good for her to sleep I know But I'm so ready for her to be her normal, cooing, dadadada, smiling self!!! The doc we had today I really liked. He is back tomorrow. We made a plan of action/goals to meet for her to go home. 1)Decrease oxygen 2)no deep suctioning 3)no de-sats 4)less retractions. So far we have just went down on the oxygen nothing else. So hopefully it won't be too much longer and she'll come around. She was moody all day today. I no longer have a sore throat, I think it was from the air in the hospital! Our nurse that was our home health nurse came and visited us today and brought me Panera Bread Soup bowl. I had the potato kind, I never have had it before and it was really good!! I thanked her several times, we are lucky to have such good people in our lives!!! Wednesday I may let Starla stay the night with her if we are still here and no talk on going home on Thursday so that way I can have a night in my own bed, pack some more clothes, and relax with Marissa. I saw the news and it sounds like it will be stormy so I don't know what I'll do. I know I can't be in two places at once and I'm stressed already and storms freak me out, so we'll see. Well I am going to get off here for now and watch the rest of the Bachelor, Women tell all. And will update tomorrow sometime!!!
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Posted by mel4smiles04 | Comments: (2) | Permalink
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SUNDAY
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May 04, 2008 03:30pm (EST)
Well today is a little better of a day. MaKayla still coughs when awake and is still pretty sleepy and moody. They don't get as much when they suction her out. They took a swab of the inside of her nose earlier to test her for pertussis (whopping cough) we'll know the results in 24 to 48 hours. They have her on 1/2 liter of oxygen, so it has came down. Thankfully. She is keeping her sats around 93% and above unless she is coughing or getting suctioned. Her sats drop down when she does not have the oxygen on though. K well I can not think of anymore. I need to be healed, I'm getting a sore throat. I think it's just the hospital air but not too sure. So pray for her, for me, and for everyone else who is going through this with us. It's miserable seeing her like this!!! Stuffy, grouchy, sleepy baby! ) She still tries to play peek a boo with her blanket though:o) So that's good!!
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Posted by mel4smiles04 | Comments: (2) | Permalink
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:(
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May 03, 2008 03:20pm (EST)
This is sad. We are back at the hospital with MaKayla!!! She did have her swallow study on Friday. Friday morning she seemed to be having more probelms then usual. She was on 1/2 liter of O2 with her sats around 88-93% I did tell them this there. They did the swallow study and said that she needs to have nectar thickened liquids and baby foods of stage 2. So we headed home, and she started to get worse as far as coughing goes. She seemed to be doing okay, she was sleeping so my sister, who is a nurse, came to watch her so Josh and I could get a night out to watch a movie and to go out to eat. Well we went out to eat and then during the movie my sister called and said that she was not doing well. She gave her 2 breathing treatmetns and said it wasn't helping so she met us at the movies. She was sleeping by then I took her out of her car seat for 10 min and she was huffing and puffing and wheezing so I said let's just take her in to get checked out. Well they kept us. She wasn't doing well earlier. She was on a liter of oxygen with her sats about 79% when she was having a coughing attack. She is now at 1 liter with sats from 93-96%. So better but all she does is sleep and if she is awake she is miserable and doesn't do so well. Her sats drop and just coughs and coughs. The doc in the ER said we'll keep you for 24 hours just in case anything goes wrong and I'm glad that they did. Now the doc said that they will keep us until she is to her baseline oxygen and not coutghing like that and not having desats. So we'll see how it goes. Well pray for sweet makayla and I have got to get back to her. Thanks I'll update later!!!
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Posted by mel4smiles04 | Comments: (4) | Permalink
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WE ARE HOME!!!
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Apr 30, 2008 10:38pm (EST)
We are home!!! Yeah!!! When we got released from the hospital this late morning I went and picked up my mom and Marissa so I could get MaKayla's perscriptions, and not take her in, then while we were at the drug store they could not get her antibiotics in until tomorrow. And I didn't think that would be wise so they called around for me and we had to drive to Butler to get her antibiotic, then back to Adrian to get her other medicines! Then we got home and I put the girls down to take a nap and we all slept!! Whew, I needed that! I was up pretty much up all night long, it was b/c I was itching really bad. I never once thought to look at myself until about 6:30, well I was broke out in HIVES!!! Ugh, I called my sister and she brought me a Zantac and some benadryll, I think I was allergic to somthing in their bedsheets, someone else said stress, so who knows, we'll just see if I continue to do it. I still have them on my legs and I continue to itch on my arms. They stink, well I should say THEY ITCH!!! MaKayla is doing okay, happy to be home!! Her diagnosis were asperation pneumonia, increased hypoxia, former preemie. And while we were in the ER the doc said she was in respiratory distress. MaKayla has had two breathing treatments since being home due to sounding raspy. She is on continuous feedings until after we find out the results of her swallow study on Friday. Our OT may go with us on Friday if she can arrange it. Hmmm, I don't know if I have anything else right now. Her party is in a little over a week, I should say her BIG BIRTHDAY is in a little over ONE WEEK. WOW!!! That is why I have changed her website to balloons, because we are sure celebrating for her!!! I hope she passes this swallow study so she can have some ice cream but I'm not so sure because she asperated again last night while I was feeding her at the hospital. So the doc said this morning to just not feed her anything but her continuous feedings so that is what we'll do!!!
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Posted by mel4smiles04 | Comments: (0) | Permalink
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#4
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Apr 29, 2008 12:40pm (EST)
UPDATE #4 FROM BEING INPATIENT
Well we have seen OT today. She is now scheduled to get a swallow study done on Friday downtown at 1 pm. We'll see how that goes since she will not eat well. We have had an xray with some dye put into her g-tube to check on her fudo and it is still in place. They gave her 150 ml's over 5 min. She didn't really like that well but she is now sleeping sound. It sounds like they are going to start her feedings soon. The doc said earlier something about her being on slow continuous 24 hour feedings. But I'm not for sure. We'll just see what she thinks. I doubt that we'll have to stay until Friday. Earlier the doc said that it would probably be another day or two and it would all depend on when the swallow study is and how she tolerates her feedings and how she is breathing. I have not heard nothing on the MRI/ultrasound results that she had done. So we are awaiting that. And we are just hanging out. She gets her IV antibiotics. The doc said she'll be on antibiotics for 10 days. Part will of course be IV like she is getting now and then when we get discharged to go home then it will be by her g-tube. Well that is about all I know for now. I do know that our zoo trip has to be cancelled ( It will prob be sometime in June now I think that is what my mother in law was trying to tell me before I had to hurry off the phone to go downstairs to xray!! Well PRAY PRAY PRAY, and BELIEVE IN MIRACLES!!!
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Posted by mel4smiles04 | Comments: (4) | Permalink
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UPDATE #3
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Apr 28, 2008 03:25pm (EST)
UPDATE #3 FROM BEING INPATIENT
Well, we are going to be staying again tonight. We will have PT/OT in the morning at 9 am. Then we will go from there. Probably have a swallow study done, not for sure on that one. Also they are going to try to get the radiologist look at her MRI/ultrasound from her back from when she was in the NICU. She is still grumpy today. So far no fever, and is just on clindomycin antibiotic now instead of two. She is still not getting any of her feedings and hasn't had any since yesterday at 1 pm. And will continue with nothing until they know about asperating, poor thing!!! Like I said before though she does not care, she doesn't get hungry. She is mad cuz she can't really do much in bed. I hold her, she slept for 3 hours in my arms, I was uncomfortable but whatever I need to do to comfort her I will!! Her xrays of her belly came back normal so that is a plus!!! Well I hear her hollaring/crying so I've got to get back. Keep praying and BELIEVE IN MIRACLES!!!!
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Posted by mel4smiles04 | Comments: (0) | Permalink
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