Monday, July 30, 2007

Monday, July 30, 2007
California! Current mood: nervous
My mom just called me and told me that she had the OFFICAL LETTER FROM CALIFORNIA in her hand!!!!!!! The official plan, according to Dr. Hanley, is to perform a surgery called a unifocalization when Macy Jane is 4 months of age. 4 months! Macy Jane is exactly 10 weeks old today. We do not have the specific details of how we are going to get her out there or even when the exact date is, but at least we know for sure that the time frame is 4 months of age.
The letter also stated that if MJ showed signs of worsening heart condition and was not thriving, that the surgery would be done earlier than 4 months. Dr. Joshi, her cardiologist in Memphis, stated that it might be done as early as 3 months of age. Ahem.....that is only 2 weeks away?! I have butterflies in my stomach and am so thankful that the letter arrived.
My hope is that we can raise enough money between now and then to help cover our expenses and that Macy Jane will continue to gain weight and thrive and make it to that 4 month old mark. Some people have asked what expenses we would have etc. A brief summary would include: airfare for me & Steven to get to California (still not sure if MJ will be flown by medical jet, and if so if one or both of us could ride with her out there), lodging while we are out there, meals for us, and medical expenses. I will just tell you that her 2 week stay at LeBonheur when she was born cost us almost $67,000 and she has been in the hospital for 6 weeks so far this go around, you do the math. We aren't sure what insurance is going to pay because all of this is going to be out-of-network costs.
We have been told to expect MJ to be in California a minimum of 1 month. That means that Steven will not be working for that month and that means no money coming in. We were thinking of trying to get his California nursing license and work a little out there, but we are not sure that there is enough time between now and then to get that done. Anything just to be able to cover our bills back home. God is going to provide, I firmly believe this.
I just wanted to share the new update with everyone as we have all been waiting for 6 weeks to hear from California. I will keep everyone posted!
Love,
Bethany
Monday, July 30, 2007
Reflections Monday July 30th Current mood: optimistic
I was able to spend Saturday and Sunday night at home, with Steve. It felt so nice to be able to sleep in my own bed, but I have gotten so used to the couch in MJs room that my back is killing me now! It really was nice to get away though, but of course I couldn't wait to get up on Sunday and go see my little blessing.
I have been struggling the past few days with my outlook on things and started to have a bad attitude. However, last night I had a heart to heart talk with one of my best friends and then I called my sister at 11pm and talked with her for a LONG time. I knew that if I talked to these people that they would give me advice that maybe I wouldn't necessarily want to hear, but needed to, but at the same time they would help to get me back on the right track.
I have been getting discouraged because it seems like we have been taking 2 steps forward with Macy Jane and then 3 steps back. Perhaps it is because my faith started to waver a little bit. However, my perspective is back and I feel renewed and alive again and excited about all of the things that God has done and is going to do. He has shown His protection in so many ways in Macy Jane's life and the devil has been working overtime to mess things up and discourage me. I know that God has a purpose for MJ's life, if He didn't, she would not have survived in my womb. Each day that she is alive is simply a miracle. So many doctors did not think that she would make it through her stomach surgery, but she showed them! Except for being on a little bit of oxygen still, she is a trooper. It has been a slow process of feeding her through her g-tube and last Wednesday and Thursday she took a turn for the worst. Her white blood cell count was 29,000 & she was dropping her oxygen saturations quite frequently, breathing 120 times a minute and SO fussy. They got the doctors in there and they took care of her pronto & now her white blood cell count is down, her sats are up, and she is our happy baby again. God is good. The best news of all is that during that fiasco, they turned her feedings off (she is on a continous feed of breast milk through her tube) just to be safe because it is hard to tell if it is related to her heart, or from her GI system. However on Saturday they started the Pedialyte back at 5cc/hr and she did well with that. Yesterday they turned it up to 10cc/hr and she continued to do well with that, then today my mom sent me a message saying that they switched her to breastmilk at 10cc/hr and so far she is doing great. Her previous goal rate was 21cc/hr before she had surgery, so I am not sure what the goal is now since she is bigger etc.
If we can get her to her goal rate per hour on her feedings then maybe they will start weaning her oxygen levels and perhaps we can go home?? She has to prove that she is gaining weight every day before she will be able to go home. She can go home on oxygen, but not on the type that they have her on. We will see though. We are still probably a couple of weeks from going home and that is if everything goes smoothly without any more setbacks.
Yesterday I was giving her a bath and clipping her finger nails and noticed the tip of her left index finger and her nail bed was purple. Her finger nails always have a bluish tint because of her heart defect, but this was different. I pointed it out to the nurse and she said that they would watch it. Well, my mom text messaged me last night that her cardiologist came in and that they were doing ultrasounds of her heart, lungs, and her central line to make sure she did not have any blood clots or vegetation. Everything with that looked okay, but they consulted an Interventional Radiologist to come from Mississippi (apparently he is a specialist) to do a high tech ultrasound of all of her blood vessels in her left arm to make sure that there is not a blood clot, and if there is, what to do about it. Thank God that the doctors are on top of things and hopefully they will figure out what is going on with her finger, if anything serious at all.
Well, I need to jump in the shower and get back to the hospital to see my sweet baby. It makes my day to walk in the room and see her smile when she sees me! She is still trying so hard to make noises....she opens her mouth in the shape of the noise, but it just won't come out!!! I can't wait for the day that she giggles and coos up a storm.
My sister is checking today to see what type of fund that we can get started for Macy Jane's bills etc. Several people have mentioned doing fundraisers and that people want to donate money, but Steve and I want to have an account set up with someone other than us being able to withdraw money so that there isn't any speculation as to what we spend the donated money on. Everyone knows that California is an expensive place to be and as it looks right now I will not be able to return to work until after Macy Jane has her heart surgery. Our income has been cut in half and our bills are twice what they have been so you do the math I can't complain though, God has provided and we are not lacking for anything. I know that He will continue to meet our needs. Steve recently got a raise and thank the Lord he is able to work and has a decent paying job. I will update with more information as it becomes available to me. If anyone has any suggestions as to what we can do, I'm all ears. I hate feeling like a charity case, but this is a circumstance that is out of our control and we never could have saved up enough money to cover the expenses even if we knew about it a long time ago. Things will work out though. I keep wishing that we would inherit millions of dollars from some dead rich unknown relative.......haha.
Well, thanks for the prayers. Please pray specifically that 1 we will get the official letter from California with a plan for surgery 2 MJs finger will regain the circulation and the docs to figure out what is going on 3 that she will continue to tolerate her g-tube feedings as they increase the rate 4 that they will be able to wean her off of the oxygen 5 to continue to gain weight and lastly, that God will continue to give us peace and understanding and strength as we go about our daily lives. Thanks!!!

Thursday, July 26, 2007

Thursday, July 26, 2007
Update July 26th Current mood: cranky
My update is that we are still at LeBonheur. Shocked? Didn't think so. I am not in the best of moods today, but that is life. MJ is still in her regular room and they starting giving her pedialyte in her g-tube yesterday and they started breast milk in the tube today. So far she is doing well with that.
She has started to drop her oxygen saturations today. Please say a prayer for her. We aren't sure what is going on because her chest x-ray looks great?! Supposedly we are still looking at MJ having heart surgery in 6 1/2 weeks! That isn't long at all. Of course we are still waiting on the official letter from California. Will keep updated as we know something.

Saturday, July 21, 2007

Saturday, July 21, 2007
Saturday Current mood: contemplative
I am sitting in the ICU next to Macy Jane just trying to pass the time. She was supposed to go back upstairs yesterday, but she had an episode where her oxygen levels dropped to the 60s and her heart rate was in the 180s for a period of time. Steven and I both think that she was in pain, but we are not her nurse and are just trying to have patience. She is doing GREAT after the surgery though. We are thankful that she has not been on the ventilator and hasn't had any complications from her tummy surgery.
She also had a fever Thursday night so they drew blood cultures, but so far they have been negative. When she is swaddled with a blanket on top of her, she always gets hot really fast. If you take her temp right away, she is hot. I guess she gets that from her father She is such a fighter though and has amazed her doctor. The surgeon called me yesterday and said that he is very pleased and amazed at how well she is doing. I thank God for His blessings on her.
Last evening I was able to get out of the hospital for a little bit with my sister and my brother-in-law. They have been looking for a car for my sister for a while now and haven't had much success. She wanted a Toyota Camry and then a Nissan Murano, but couldn't find what she wanted in the color and price range. I happened to think that my grandfather retired from Ford Motor Company and that he is able to get family members a discount. We looked on the website and she found the Ford Edge. We drove over to Dobbs and she found one she liked! I am SOOOO happy for her. The Edge is a really pretty car/suv and she got a deal on it. Fully loaded car and she was able to get 4,000 dollars off thanks to my grandpa. Now, she will be able to come to Memphis any weekend that she wants because she has reliable transportation. It is amazing how things happen according to God's timing. All that has been going on has taught me one thing. To sit back and be patient because everything happens in God's timing. No matter how much we try to speed things up, we get only end up becoming frustrated when things don't happen when we want or how we want.
They just brought in a newborn preemie baby. He is so little and is struggling. I guess technically I shouldn't be watching what they are doing, but it is so interesting to me and he is right across from Macy Jane. My heart goes out to his mommy. I know what it is like to give birth after waiting for so long and then not even being at the same hospital. If you think of it, pray for this little boy and his family. MJ's nurse said he is one step away from being put on the ECMO machine......I hope he makes it.
Well, I guess I will go for now and try to update my page. It's been a while and needs a facelift. MJ may get to go upstairs today, we are waiting for the doctors to round. It is going to be a while though because everyone is working on this new baby, and rightfully so.
Oh yeah! I forgot to mention. I was able to hold Macy Jane last night until 1am. That felt so good. Another blessing is that so far we have been able to stay in our room upstairs. If they need the room then we will have to pack up and move out, but so far they haven't. We have been able to get a good night's sleep, something I haven't had in months!
Thanks for praying. It is working and please don't stop!

Wednesday, July 18, 2007

Wednesday, July 18, 2007
July 18th Update Current mood: scared
WoW! I am sorry it has taken me so long to update. Everytime I come to the computer room thugs are on the computers and no matter how long I sit here and wait and sigh a million times thinking they will get the point, they don't. So, I gave up. I have a PDA that I have been checking my messages with, but for some strange reason it will not let me post a blog or bulletin. For those that have sent me messages and I haven't replied, I promise I will---but not until this weekend sometime.
MJ has had some real uneventful days this week, thank the Lord! She is basically eating, sleeping, pottying, smiling and playing with me during her days. No more pain, thank God! She has the central line so she does not have to be stuck for labwork and she is being fed through the IV right now. She still has both the NGT that is going into her stomach and sucking out the gastric contents, and the NJT that is actually in her duodenum (small intestine) that they give her reglan & prilosec/sodium bicarb through. However, she is STILL continuing to go through the motions of throwing up, only the bile goes out of her NGT into the little bottle instead of her actually throwing it up. Noone seems to know why she is doing this, it could be because of both of the tubes stimulating her esophagus and stomach to contract like usual eventhough there isn't any food going in. She has stopped taking her pacifier all together Most parents would be happy about that, but it bothers me. That is the one comfort that Macy Jane has always had. Even when she was upset and got calmed down enough, she would take her pacifier. My theory on that is that she has two tubes that take up the majority of both of her nostrils and no doubt make her throat sore to the point that she doesn't want to swallow anymore. She drools now instead of swallowing her spit. She only swallows when she gets choked on it. I feel so bad for her because she used to be able to swallow without a problem. Hopefully after the surgery everything will get back to "normal" if there is a such thing.
Speaking of surgery. After waiting for 2 and 1/2 weeks, Macy Jane is finally going to have the Nissen Fundoplication and the G-tube placed. The surgery is tomorrow morning at ten (thursday July 19th). They say it is at ten, but the surgeon said that it may be eleven before they get started. So, PLEASE PLEASE PLEASE pray for her all morning long. Prayer and God's hand are the only things that are going to get her through this surgery. Dr. Langham talked with me this evening and said that the normal risk of death with this surgery is 1 or 2 out of 100, but Macy Jane's risk is MUCH higher because of her heart and the anesthesia that is required. My stomach is in knots and I feel like I am going to throw up. I pray for God to please touch my little blessing and heal her, but I also have to pray for His will to be done and for Him to give me the strength to get through all of this. So far, He has. The surgery should take about an hour and a half and then there is the recovery period. We know that she will spend the night in the ICU tomorrow night so that she can be watched extremely close.
The recovery time is about 2 weeks. The first 5-7 days she will be in some pain/discomfort that is usually eased with only Tylenol. They will start feeding her through her new G-tube usually post op day 2 and increase her feeds to her goal rate----VERY SLOWLY. Usually it takes 10 days to get to the goal. So, we will very likely be in the hospital at least 2 more weeks. LeBonheur is my second home, and I have finally accepted that. I have my little routine down now and the days fly by. I play with Macy Jane in her bed and tell her stories and rock her just as if she were at home. She needs some sense of normalcy and I do as well. She has been so much fun! She absolutely loves the mobile that is on the end of her bed and watches it almost all of the time that she is awake. She smiles when you talk to her and when you say "cocka-doodle-doo" or anything that rhymes with coo-goo-boo etc in a really high voice she opens her mouth and tries sooooo hard to coo. I think she will in a few more days. (maybe longer with the surgery) She tracks moving objects with her eyes and has pretty good head control for a baby that is pretty much laying on her back most of the time. Mom and I have been sitting her up and supporting her back and letting her practice holding her head up. She wobbles a bit sometimes, but for the most part she can hold it up and bring it back to normal position if it falls back or forward. It is very important to me to work with her and help her develop like most kids would, eventhough she is pretty much confined to a baby bed right now. I am determined.
Now, on to her weight. She is turning in to a little butter ball! She weighs 8 pounds 6 ounces as of last night! That is fantastic for her. I love weighing her now and get excited as I put her on the scales because every night it has increased! Praise the Lord. Her preemie clothes are getting a little snug now and the ones with legs do not fit because she is so long!
We still have not received the official word from Dr. Hanley in California. There was an e-mail sent by a doctor at Stanford to the cardiologist here that said that he thought Dr. Hanley was accepting the case, but we just have to wait for the official document to be sent to Dr. Joshi. The email did say that Dr. Hanley would probably want to do the repair at 4 months of age. That is less than 2 months away! MJ was 8 weeks on Monday!!! I pray that we are able to take her home and have a somewhat normal life between now and then. Just continue to pray that we will hear the official yes soon so that we can plan. I am obviously not going back to work for a long time yet, but I honestly don't care. MJ is my 1 priority and God will supply the money that we need when we need it. I can't worry about that anymore.
Well, I need to get back upstairs. I have been trying to spend as much time as possible with MJ today--and making her smile. She is such a beautiful and happy baby (and yes she still has red hair and bright blue eyes!!), even after all that she has been through. Please remember us in your prayers, especially tomorrow around ten! I will try to update more often, but I know ya'll understand.
I hope everyone is doing well!

Monday, July 9, 2007

Monday, July 09, 2007
The Weekend-WRETCHED Current mood: angry
Macy Jane finally went to a room Friday afternoon on the the 7th floor. She arrived in the room at 5:30pm. The ICU nurse did not make sure that she was hooked up to an oxygen monitor before she left and the floor nurse wasn't even the one who took report on MJ, so she knew nothing about her. Macy Jane started choking/gagging/spitting up bile and for two and a half hours I tried to get the nurse to come in there and set up a suction device so that I could suck the throwup and mucous out of her mouth and put her NGT to suction like it was supposed to be and to put a freaking oxygen monitor on my child since THAT IS THE REASON that we are here now, her oxygen being low etc etc. Finally at 7:30 I pushed the button for the nurse and screamed that I need a nurse in here NOW. I wasn't trying to be ugly but MJ was in the middle of having an episode and I needed some help and had NOTHING to suction her with. I was pissed off and I am still pissed off about it. Anyways, shift change had occured and the new nurse came in and within 5 minutes I had all of the things that should have been in her room and on her at 5:30. The day nurse came in at 7:40 and said to me "I just wanted to let you know that I did not get the order to put her NGT to suction until 7:10"---kind of like saying she couldn't do anything until she had the order, she had the order for suction but it didn't clarify if it was continuous or intermittent so she had to wait for that. Bull crap. Anyone with half of a brain cell would hook it up to at least intermittent suction while waiting and if continuous was ordered then it is very easy to go back in and change it. The whole purpose of having the NGT to suction was to keep MJ's stomach empty because she is refluxing so bad and is at a huge risk for aspiration. Anyways, I wanted to say to her, well it is 7:40 and you are just now in here to put her NGT to suction as ordered, what have you been doing the last 30 minutes????? Also, noone checked the placement of her feeding tube.
So, on Saturday, MJ started to look worse and they did a chest x-ray and sure enough she had aspirated and this time it showed up on the x-ray. I am really upset with this hospital right now because they are doing more harm to my child than good. She is in worse shape today than the day we walked in this door. Had she been taken care of those first two hours that she was here on the floor I firmly believe that she wouldn't have aspirated. If I would have had the suction that I asked for at least 3-4 times, I could have sucked the stuff out of MJs throat. What kind of nurse does not check an oxygen saturation for over 2 hours on a child that just came from ICU and was on the ventilator???? A stupid one.
So, on to Saturday. They needed to start an IV on MJ because the one in her foot didn't work anymore. They called Pedi-Flight to do it because MJ doesn't have good veins. I was in the shower and the nurse knocked on the door saying that they needed to shave MJs head to put an IV in. Okay, look at my profile picture.....do you see all of that hair??? I was SO upset, but I knew she needed it. They shaved the left side of her head completely bald. They got the IV and started some antibiotics on her. Then, we noticed that her feeding tube was almost completely out of her nose. The nurse pulled it out because it was choking MJ. The doctors said that it couldn't be put in at the bedside and that it had to be put in in radiology. I tried to tell them that in the ICU they just put it in there and the nurse did it and if they wanted, I would do it. Oh no can't do that. So, they did not feed MJ all weekend and she still isn't being fed. She has lost weight big time. She has IV fluids to keep from being dehydrated. She was supposed to go to the cath lab at 8am to get a more permanent IV access in her chest and to get her feeding tube put in under x-ray. Now they are saying it is 3pm. They are going to start her on something called TPN and it can only go in a central line iv access. The TPN will fatten her up even if she doesn't have her feeding tube in.
Now, what about the G-tube and the Nissen Fundoplication? We still don't even know if the surgeon will do it. I do not understand what is going on with that sitiuation. She needs both and most people know that, so when is it going to be done?? I am talking to some people today and tomorrow about what has been going on with nurses etc. because their actions are unacceptable. Did I mention that one nurse in the ICU turned off MJs alarm that goes off when her oxygen levels drop too low? Yep! He turned them off for over 4 hours & I don't know how long they were off because I wasn't in there the whole day. Thank the Lord I was in the room and watching her, but if I have to do that then put me on the freaking payroll and let me be paid to do their job. I am still waiting on his manager to come and talk to me because like I said, that is unacceptable for an ICU nurse to do. He was putting MJ's life at risk!
Anyways, I know I am full of gripes today. I had a really bad weekend and to top it off Steve wasn't here, he had to work. Thankfully my mom was able to stay and help me. There is one good thing.....MJ smiles a lot now. I don't see how she wants to with all that has happened to her, but when you talk to her she smiles. She now has this thing where she will scoot and scoot until she is on her right side. She will not sleep unless she is in that position. I love it
Well, I need to get back upstairs. Hope everyone is doing well. Hopefully we will have answers soon. Still no word from California, yet. One doc said that Dr. Hanley was reviewing MJs case today and another one came in today and said it was going to be Wednesday, so who knows. I sure don't. I just have to take it one day at a time.
Thanks for the prayers & keep them coming, we need them!

Friday, July 6, 2007

Friday, July 06, 2007
Friday Current mood: hungry
8 POUNDS!
That is how much Little Miss Macy Jane weighed last night. I never thought that I would be so excited over her gaining a pound of weight, but this really is a big deal. We have the right formula/breastmilk combo going, we just need the right place to give it to her.
This morning she went for her Upper Gi. According to Dr. Cabrera, she refluxed but her digestive system appears to be normal!! What does all of this mean now? She will at some point (hopefully early next week) be going to the OR to have a G-tube placed and to have a surgery called a Nissen Fundoplication. The Nissen is a procedure that basically stops her from having reflux, you can't even burp according to Dr. Joshi! The G-tube will be excellent for her long term as a source to feed her. Once all of this takes place, her face will be free!! No more tape. Her face is starting to heal from the tape that was on it with the ventilator. Eventhough she has DiGeorge and they often have feeding issues, so do heart babies. We really think that her issues are related to her heart and that she just isn't strong enough to coordinate the suck/swallow. She sucks on a pacifier like a champ though. Anyways, hopefully we will be at home within the next 2 weeks.
In other news....a freak accident happened to me yesterday. I was driving down the interstate, not a soul around me and I heard a loud bang. I thought someone had hit me and I just maybe went in to shock and didn't feel it. However, I looked up when I heard glass breaking. Something fell from the sky onto my sunroof and completely shattered my glass! What are the chances of that happening?! I was not a happy camper because that is money that I will have to shell out at a time when I am trying to avoid spending money. I called the insurance company today though, and they are sending an estimator on Monday and then I can get it fixed. Thankfully it is parked in the garage here so that it won't get wet if it rains. I pulled the shade so that if the rest of the glass falls out, it won't get all over the car.
Yesterday was a lot of fun with my mom. She treated me to a haircut and lunch at El Porton. She was going to get me a pedicure but I severely cut my ankle yesterday when I was shaving and I did not want it to burn when they did my pedicure. We both have to go to the doctor on Wednesday so I can get it done then. After being in the hospital for 4 out of the last 6 weeks, it feels nice to get out and be pampered/spoiled a bit.
Well, that's all for now. We may be able to go upstairs to a room later this afternoon. Nervous but happy about that.
Friday, July 06, 2007
Oxygen Current mood: bouncy
Steven and I went to lunch while my mom stayed in the ICU with MJ and she just sent me a text message saying that MJ has been off of her oxygen for a bit and her oxygen saturations are staying up! It may be shortlived, but at least she is able to go some time without needing it.. Thank the Lord!

Thursday, July 5, 2007

Thursday, July 05, 2007
Thursday Current mood: hopeful
Finally, some progress! MJ is going to have an upper GI done tomorrow to look at her digestive system. After that, Dr. Cabrera wants her to have a G-tube placed. We did find out this morning that the doctor that does the g-tubes does not think that Macy Jane is big enough to have one placed or well enough from cardiac standpoint. Dr. Cabrera disagrees with him and we heard him telling the others that babies that are premature and twice as sick as MJ have G-tubes placed. Everyone seems to agree with Dr. Cabrera and I trust him so far. I do not want Macy Jane going home with all of the tubes etc. in her nose. She is uncomfortable and can barely breathe out of her nose. Since babies only breath through their nose and hers has 2 tubes in each nostril, it is hard! Hopefully they will hear from California and Dr. Hanley will say that it is okay for her to have the G-tube.
This morning she is doing okay. She is bundled up real tight in her zebra blanket and snoozing. They are going to have to put an iv in her for the upper gi. Thank the Lord I am leaving the hospital for a few hours today & won't have to hear her cry cry cry. Trust me, if it would help to be there in the room with her, I would be but it really doesn't. She is mad and upset no matter who is there. She is still on 1/2 liter of oxygen, but I am sure they will be able to take her off of that once all of those tubes are out of her nose. She is at risk for aspirating the contrast they have to use so Dr. Cabrera said that he is personally going to go down there with her and watch her throughout to make sure that she is ok. After that, she may be able to go back to a regular room I am nervous about that, but I must get over it because that just means that we are one step closer to going home.
Today, Steve is going to stay with MJ and I am going to get out of the hospital for a little bit. Last night Steve and I went to dinner and that is the first time I left the hospital in days. Today, I am going to get my hair cut (it hasn't been done in almost 2 months!) and get a pedicure. My feet look awful--even Steve commented on them yesterday so they must be pretty icky. I at least need a polish change!!!
I am going to put a web address on here of an article that Dr. Cabrera printed out for Steve and I. The Lord knew that we were extremely frustrated last night and that we were going to ask Dr. Cabrera A LOT of questions this morning and that we were upset about no progress/no tests. The first thing Cabrera said was about the upper GI and then handed us these articles. It brightened our day up tremendously. It is hard to understand some things they are talking about, but look at the percentages etc. The address is: http://circ.ahajournals.org/cgi/content/full/101/15/1826
I hope everyone is doing well. Thanks for the prayers, pray for MJ in the morning that the test will go well!

Wednesday, July 4, 2007

Wednesday, July 04, 2007
Happy July 4th! Current mood: grumpy
Well, there will be no pictures of Macy Jane in her dress because her daddy forgot to bring it Shame on him! It takes 45 minutes to get home and I am sorry but with gas prices the way they are, it just wasn't worth it to drive all the way home for that. She is fussy today anyways so we are trying to just let her sleep. She is a gassy baby these past few days and I am sure that is what is making her fussy. They started giving her Mylicon on a regular basis.
I guess I didn't update yesterday.....sorry about that. Honestly it slipped my mind. MJ had an awesome nurse yesterday and I stayed in the back with her all day trying to comfort her and also enjoyed talking with her nurse.
I think the last time I updated MJ had had another episode and they stopped her feeds. Well, they consulted a general surgeon to place a G-tube and do a surgery called a Fundoplication. He came by on Monday and at this point he does not feel comfortable doing the surgeries on MJ because of her heart. The resident that works for him told us today that they were contacting the surgeon in California (who we still haven't heard from yet) to see if it was okay from his viewpoint to do the surgeries. She really does need them. They started feeding her Monday and have slowly increased the amount and now she is at her goal rate of 21cc/hour. She is back to getting the amount she was before when she was gaining weight. AMEN!!!
So far she has tolerated it. Her feeding tube is not in her stomach, it is in a position called trans-pyloric.....it is past the sphincter in her stomach so when/if she throws up--it won't be formula/milk because that is impossible. It can be however gastric contents (green bile). So far she has only thrown up mucous. Steve and I walked in this morning after breakfast and the nurse had put ANOTHER tube in her other nostril and that one goes in her stomach and is hooked to suction to decompress her tummy and suck out the mucous so that she doesn't throw up. On top of that she has oxygen on still. Hopefully they can get that off soon, she is only on 1/2 liter. Poor baby, she has a tube in each nostril plus the oxygen prongs in there.
It is getting harder and harder to see her like this. I feel like that we are torturing her and that she is just miserable. I cannot wait to have my happy baby back and it is really starting to upset me that she is having to go through so much. I do not want her to suffer her whole entire life.
God is still with us and has a plan for all of this. I am anxious to get to California so that she can have the surgery. We have a long road ahead of us, but we will make it. It saddens me to think that MJ is 6 weeks old and she has been in the hospital for 4 weeks of those. Pray that we hear from California soon and that the GI issues will be solved soon. The sooner they are, the faster we can get home. HOME. I have been home for a total of 2 hours in the past 2 1/2 weeks. I miss the smell of my house, my bed, my refrigerator, my tub, my shower, and my couch. I just want us to all be able to go home and enjoy being a family. Each day is a gift from God and we aren't guaranteed another day.
Well, that is all for now. I need to get back upstairs. MJ has a male nurse today that I swear is wacko. He is non compassionate and kind of cocky. We ask him questions and he does not answer them. He tries to joke with us....haha not in the mood! Hope everyone is doing well. Happy 4th of July! Enjoy some fireworks for me (particuarly sparklers). Steve and I may try to find a place in the hospital with a view so that we can see the fireworks go off downtown. That's about all of the celebrating that we will get to do. Bye bye for now!

Monday, July 2, 2007

Monday, July 02, 2007
Monday Current mood: tired
Well, MJ gave us another scare yesterday. She had another episode in the afternoon where she dropped her heart rate, threw up, continued to drop her heart rate, became clammy, sweaty, extremely pale (not blue this time). They were going to reintubate her (put back on ventilator), but the doc that was there gave her more oxygen and watched her for a few minutes to see how she would do. She pulled herself out of it and after about 30 minutes she was back to herself. She was awake for over 7 hours straight after that. She is on a type of nasal cannula for oxygen that has a lot of condensation that builds up and it kept trickling down the back of her throat and waking her up when she would doze off.
I talked with Dr. Cabrera this morning and he said that they are going to stop feeding MJ for a few days to give her system a rest. In the mean time he is going to talk to his collegues and determine what tests to do. He wants to check her whole digestive system to see if there are any structural abnormalities and to see what course of action to take. Hmmm seems like I remember posting a blog about them needing to check her out completely......oh-well Dr. Cabrera is awesome and I thank God that MJ has such a knowledgable and compassionate physician. (if you want to see him look up Dr. Antonio Cabrera)
Well, I need to get back upstairs and see the little one. Hopefully I can catch a nap.....4 hours of sleep just wasn't enough last night and I feel like a mack truck has run over me, backed up and run over me 100 times
Continue to pray, THANK YOU

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.