Sunday, July 1, 2007

Sunday, July 01, 2007
Sunday Current mood: ecstatic
My brother and sister-in-law came in to town on Saturday to visit MJ. They both were able to hold her eventhough she had a lot of tubes and wires everywhere. They were only able to see MJ when she was born and that consisted of seeing her in the incubator waiting to get on the elevator to be trasported to LeBonheur when she was first born. So glad that they were able to see her.
In other news and the most exciting news of all! MACY JANE IS OFF OF THE VENTILATOR!!!!!! It was actually an accident. She kind of decided that she was tired of waiting for the docs to do it so she did it herself. My sister in law was holding her and MJ coughed and started to sound differently. She called for her nurse and the nurse put her back in the bed and checked her and sure enough the little booger coughed her breathing tube out. (it was loose apparently to begin with because it was taped down solid to her face!)
Mandy came out to the waiting room where I was and had a funny look on her face and said that I might want to go in there because "some tube was out and they were putting that green bag thing on her face". I was like WHAT?!!! Me and Steve both ran back there. Sure enough she was laying flat and they were bagging her and the RT was about to retube her when the doc came in and said to just see how she does since they were going to extubate in the next few days anyways. They did a bunch of blood gases ever so often last night to make sure she was ok and she was!
She LOOKS so much better. Her poor little face has the red baby acne on it now from all of the tape that was put on her face to hold the breathing tube in. It looks pretty bad but it will be gone soon. So far her oxygen levels have been okay. They dip a little when she cries, but the difference this time is that they come back up after about 30 seconds max. Dr. Cabrera said that if she continues to do so well they will send her back upstairs tomorrow. I certainly want her to do well, but I am so nervous about her going back up there! I think I have the right to be that way though. God is in control though and he will see her through. --and us!
Well, my time is limited today. Now that she is off of the ventilator it is so much easier to hold her and of course she is awake just like she used to be so that means that she wants and needs to be held A LOT
I hope that she is in a room before July4th because my sister bought her a cute little 4th of July dress and I really want to dress her up. We may not be able to do fireworks and have a cookout, but we can still celebrate in her hospital room....somehow She will look so cute, I will have to post pictures.
Hope everyone is doing well! Thanks for the prayers.

Saturday, June 30, 2007

Saturday, June 30, 2007
Saturday Current mood: excited
I must say that it is nice to have Steve here with me finally. He is only gone for 2 days at a time, but that seems like an eternity. :o)
This update will be quick as I need to get back upstairs and hold MJ. We talked with Dr. Cabrera this morning and he was very optimistic again. He told us that MJ likes to be held and that she does better when she is held and that it is very helpful to them that she is calm when they wean down her sedation medicine and can turn down the ventilator support. SO! Needless to say, she is going to be held all of the time now
She is doing really good and she looks great. Her coloring is nice and pink and her oxygen levels are fantastic. I can't wait to get back upstairs and hold my sweet "sugar bear". That is what I call her when I see her or "sug" (sounds like shoog).
The parent resource center (where I go to use the computer) has weird hours on the weekend so this is the last time I can check this or email for today. Tomorrow it is open from 1-5 so my update will be a little later.
Oh yeah--Dr. Cabrera said that she should come off the vent in the next day or so. YAY I can hear her grunt, cough, cry etc. I have never wanted to hear her cry so much!!
Hope everyone is doing well. Continue to pray for these specific things:
Collateral arteries to grow bigger, Dr. Hanley to make the right decision, MJ to continue to gain weight (she weighs over 7pounds 11 ounces), MJs immune system (they sent blood off yesterday to evaluate it, we will know more in a few days) and just everything in general.
Once again, thanks so much for the prayers. It is awesome to see God working even in the tiniest ways.

Friday, June 29, 2007

Friday, June 29, 2007
Friday Current mood: annoyed
You know what is sad? The fact that I have to move the mouse to where the time shows on the computer to find out what day of the week that it is.
I do not have alot of new information as of yet. I cannot wait for 7pm to get here though because MJs nurse today has been really rude and hostile to me and my mom today. I do not understand it and am not going to say anything about the things he has said/done because it just upsets me. I will say that he does not have a caring spirit about him (perhaps because he is a male nurse taking care of a baby?) and me or mom will be sitting back there with MJ all day because she isn't getting any TLC from this guy. She is 5 weeks old and she is waking up more and more today and she needs to have some human interaction from people she knows and loves her. Don't ever tell me not to stimulate my child, especially when I can see that she is crying (eventhough you can't hear it). If I see that she is upset then by golly I am going to hold her hand. If that is overstimulation in your opinion then GET OVER IT because she needs to know that her mom and nana are there for her. Just pray that the hours pass by!
It is amazing how I can see Satan sending stuff our way trying to discourage us, today I guess it is the nurse. I am not going to let it get me down, I will continue doing what I have done since Tuesday and we continue to have problems I will talk with the nurse in charge.
Now, how is MJ today? According to Dr. Cabrera-they are changing some ventilator settings to one that allows MJ to initiate the breath--then the vent will give her support. When she has been waking up she has been so agitated and working against the ventilator that it is doing more harm than good. Sor far she is doing well with the new settings and they are slowly going back down on her sedation. Also, I asked Dr. Cabrera when we were going to test her immune system and see how much of one she has and he said that they would draw blood today to evaluate that and that it could have already been done! This will give us some clue as to how well she can fight infection and exactly what she will need when she does get an infection. So, not a bad update today.
There is a nurse here that I guess worked with Dr. Hanley (California doc) or worked where he works or something and she was going to talk to me to let me know what it was like out there. Mom is back with MJ so that I could pump and check email and she was trying to text me about it but I didn't understand completely what she was saying. That would be awesome to know what its like and what kind of accomodations that they have for parents/grandparents etc.
People have been asking how they can help Steve and I and we have been thinking and praying about it. We have come up with some ideas and I will blog about that in a separate blog once I know more. I will say that while we are in Memphis, just a visit would be nice. My parents are here and help provide meals and snacks so we are covered there. It really is nice to have visitors come and see us because it helps to take our minds off of everything and as an added bonus, you can go back to see MJ for a few minutes if you come We will really need help and support when we go to California, but like I said we are still talking about that and I will let you know more later.
Well, I need to go take my milk to MJs nurse and see her and get some lunch. I am absolutely starving! Hope everyone is doing well.
P.S. please remember to keep my friend Micah in your prayers too-she is going through a hard time right now and could use your prayers, also her nephew is really sick right now (only a couple of months old) with an ear infection and UTI. Thanks

Thursday, June 28, 2007

Thursday, June 28, 2007
Clarification Current mood: confused
This is just a clarification of the information that is circulating where I work I hope that I have not given the impression that nothing can be done for Macy Jane now. If I have, I am sorry. I have so many things on my mind that I may have painted that picture without even realizing it. I will try to paint a different picture now.
At this point, after my conversation with Dr. Cabrera this is the latest. According to Dr. Cabrera, Macy Jane should recover from this bump in the road. He thinks that aspiration is the cause of this episode, even though she does not show any signs of it besides her sats dropping. That is a good thing thing however because she does not have a fever etc that goes along with pneumonia.
Regarding her surgery. The information was sent Tuesday morning via FedEx to Dr. Frank Hanley at Stanford University in Palo Alto, California. Dr. Hanley has weekly conferences with staff to review the cases that are sent to him. He will decide what he can do and when he wants to do it, IF he can do anything. Dr. Cabrera thinks that Dr. Hanley will be able to do something, but she needs to be older and bigger. As in 4-6 months and she needs to weigh at least 11 pounds. A few days ago, it was a possibility that her heart was getting worse and that she may need surgery sooner than later, but as of right now Dr. Cabrera thinks that this is not heart related.
We have not given up hope for Macy Jane. At this point, surgery IS STILL AN OPTION. If Dr. Hanley says he can't do it then our options are only attempting to find a surgeon that can or will if we even decide to do that. We trust Dr. Hanley though because of his reputation and the fact that he is the inventor and expert in this surgery and if he thinks nothing can be done then odds are nothing can be done.
Once again, I didn't mean to freak anyone out or paint the wrong picture. Our options are few, but we still have them. I appreciate the prayers, continue to pray!!!
Thursday, June 28, 2007
Thursday Current mood: grateful
I got to see my sweet baby's eyes open! She has been paralyzed and heavily sedated since she has been in the PICU and today they turned off the paralyzing drug and turned down her sedation. I just happened to walk back there to give them my freshly pumped milk (which by the way, the supply is back up after a day of pumping every 2-3 hours--the supply/demand thing really is true) and her nurse had just started to turn everything off.
However, her eyes being open was short lived. She started to get agitated and fussy and that was causing her oxygen saturation to drop into the 60s so they inceased her sedation meds and started her on some pain medicine. Lauren, her nurse, is such a sweet girl. In a little bit she is going to let me hold Macy Jane! I am so excited. I have been sitting at her bedside in a rocking chair holding her hand and reading a book the past 2 days. I do not know what she can hear or sense but I try to talk to her and touch her so that she will know I am there if she can hear or sense it. It's amazing that when we are in there her oxygen levels go up. They are weaning her ventilator down, which is a good sign.
In other news, this morning I overslept--big time. I went to bed at 1:30am and set the alarm for 6:15 so that I could get up, shower, and then pump and get breakfast before I could go in to see MJ (visitation is closed from 0630-0730 and 1830-1930). Well, I woke up at 9am to the sound of mom looking for something in a bag. I couldn't believe it......doctors rounds start at 9 so I had mom (who was up and dressed, but wanted me to sleep so she didn't wake me) go in MJs room so that if they came by she could hear what they said etc.
I was about to get in the shower when she text me that Dr. Joshi (MJs cardiologist) was in the PICU. He did not come and see MJ yesterday so I was eager to talk with him. Needless to say I ran back there in my pj pants and he didn't even come to see Macy or talk to us! Instead, the cardiac intensivist, Dr. Cabrera, came in to talk with us. He was such a blessing from God. He explained many things to me and mom and discussed MJ's surgery. He was very optimistic that Dr. Hanley would agree to do MJ's surgery and that she could survive it etc. He does think that all of this was caused by MJ aspirating on her feeds eventhough her lungs do not show it. He said that the day she was admitted to the PICU he expected her lungs to look horrible and sound horrible--just based off of the vent settings that she was requiring, but that he was very shocked because the two do not match up. He explained that if it were her heart it wouldn't have caused this, this fast. Stenosis happens gradually over time and you gradually see things go wrong, not all in one day. I still am not 100% believing that she aspirated, but they are the doctor's who deal with heart babies all of the time and they know way more than I do or ever will know and I trust them.
So, not awesome news but it isn't all bad news either, thank the Lord. I can't wait to hold her, that in its self will mean so much. Steve had to work today and tomorrow so he can't be up here. I do not know what I will do when I have to go back to work. I really do not want to go, but I have no choice. I need to start back in the middle of July so that we can hopefully save some money to cover the basic bills while we are in California, but MJ is going to be in the hospital here for a long time. My mom is going to help out and stay with her while we are at work, but I will come up to the hospital when I get off and spend the nights I think. Maybe I can only work 2 days a week instead of 3. Who knows. I am taking it one day at a time. We do not have any credit card debt so if we have to put our house note and bills on one until things settle down and it is the right time for me to return to work then so be it. We originally planned to let me be off of work until September, but with surgery possible being in October I need to save some time off so that I do not have to take a personal leave and risk losing my position.
Anyways, lots of things to think about and pray about. I feel much better after getting some sleep last night. My outlook is a little better on the whole situation. Thank God for Dr. Cabrera because I was really starting to become discouraged and fretful. God sent him to us exactly when I needed to hear something positive.
Thanks for the prayers, keep them coming!!

Monday, June 25, 2007

Monday, June 25, 2007
Mixed Feelings
I was finally able to leave the hospital a little after 2pm. Now that I am at home, I am missing my MJ and cannot wait to get back to the hospital. It is funny how that when I am there and need a break I can't wait to leave, but after an hour or so I want to go back. Normal, I know. I had to get away and I am forcing myself to stay away for a little bit longer........but it's hard. I called Steve and heard her fussing in the background and I just wanted to reach through the phone and pick her up and hold her and give her an eskimo kiss to let her know everything is okay. It must be done though since I have only left the hospital 2 times in the past week and that was to grab dinner for an hour.
I am starting to think that MJ is going to be coming home on oxygen. Most babies with her heart defect are on oxygen supposedly, so I guess it was just a matter of time before she had to have it too. It is kind of a bummer, but God knows why.
I am so tired and would love to nap in my own bed but I am afraid that if I do that I will not wake up for hours and hours. Steve is at the hospital today watching MJ. He had to work the weekend so he took over today, which is why I am able to get away for a bit.
I went to the DHS office. I hate going places like that. I do not know why. I have hated it since I went with one of my friends years ago. I just feel dirty when I walk in the door. It didn't help that this office was in an old run down smelly building. I found out......................a whole bunch of nothing. I have an appointment on Wednesday morning that I am going to have to cancel. There is a ton of papers that I have to have for them such as 8 weeks of pay stubs, utility bills, bank statements, birth certificates etc. I feel like I am buying the house all over again. Needless to say I do not have time to find all of that. She doesn't need the Tenncare right away so we are going to wait until thinks settle down a bit first.
Well, it's after 6 so the rush hour traffic should be about over. I guess I am going to head back after I stop and eat some Mexican food with mom and grab Steve some Arby's. That's one thing that stinks. Since we live so far away, we can't cook a meal and bring it to the hospital each day so we have to eat out a lot. Thankfully, Steve's coworkers have him a card with some money in it and we have been able to eat off of that which helps out greatly with the finances. By the way--this is an informal thank you to those people that work with Steve that gave money..........it was greatly appreciated. I will post more later if anything new comes up. Bye Bye Now
Monday, June 25, 2007
People Current mood: drained
I have one question. Why do grown-ups act like little children and if they get their feelings hurt about something they revert to the "I'm not your friend anymore" or the "I am going to exclude you from this or that" mentality. Sometimes I feel like I am in elementary again.....or even preschool. Some of my friends that are grownups need to GROW UP and get a life because I do not have time in my life for stupid childish behavior and if you want to act like that then do me a favor and take me off of your friends list, do not read my blogs, and lose my phone number. I have more important things to deal with than who and who isn't my friend.
I realized last night that I have been calculating MJs weight wrong this week. They come in every night to weigh her around 8 pm and they weigh in kilograms. Somehow I screwed up my conversion to pounds and so we thought she wasn't gaining weight. HOWEVER...........Macy Jane has gained 8 whole ounces since she came in to the hospital. PRAISE THE LORD! And that is with her throwing up too. I was so happy when we realized our mistake. She is gaining more than what she needs to be actually, but that is okay. They want her gaining an ounce a day or there about, since that is what most other babies do.
Well, I need to run. Today I am driving to Covington to our county DHS office to see about getting MJ on Tenncare for her secondary insurance since her primary insurance isn't going to pay for certain things. Did I mention that we got a bill in the mail from LeBonheur for almost $67,000???!!! I laughed and laughed at that. Can honestly say I've never seen a bill that much. However, that is before they filed it with insurance......so we'll see
Hope everyone is doing well. I can't wait to leave this hospital today for a break outside of these 4 walls. I will miss my little MJ, but I need to maintain my sanity for her sake as well. Keep praying!!