MARYCATE IS HOME!!!!!!!!!!!

Yes, it is correct Mary Cate Mustaine has made the long 6 mile journey down lake Drive to Grandma and Grandpa’s house. She made this move on Friday September 12th her 100th day in the hospital (and hopefully last as far as I am concerned). She came home on oxygen and some other medication (Brigit says she feels like a chemist when she mixes up MC feeds) but besides that she has a clean bill of health (eyes, ears, brain, heart and lungs all functioning fine). SO we are so excited to have our little girl home with us.

I know I have not posted in a while I am so sorry about that. You all have been their for us through the whole process from the hospital to MC birth, through surgeries and blue spells and when the moment of truth comes I am asleep at the wheel with getting you info. So for that I am sorry. I beg your forgiveness and chalk it up to the fact that MC has not yet decided if she wants to be awake from 2-6am or 2-6 pm, so she has opted for both right now. Which has curtailed her parents sleeping pattern and the amount of things we can get done in one day. SO I wanted to make sure you all had the great news and got to see the pictures (Marg the beard is gone I hope you approve). I will continue to keep you all up to date with pictures and news but in the meantime I cant say Thank you enough for the impact you all have had on my life and the life of my family so thank you again.

Back to the Grind

All is well here in Wisconsin. After the long night I gave mom and dad on Sunday night/Monday morning, I told them to go take a break. Although they seem refreshed, I am not sure the nurses will let them leave again because the pediatric unit spent more time on the phone with mom than they ever hoped for. She called often to check in on me, even though they kept assuring her I was FINE. I am glad mom and dad were able to get a night away and they tell me that they went to a fun hotel in downtown Milwaukee to relax and catch up on sleep. They seem to be much more with it now, thank goodness, b/c I was quite worried about them.

I am doing great. The doctors have put me back on oxygen and I enjoy it. Just on the nasal canula and they say I may go home on it. I overheard my neonatologist telling my parents that I might be able to go home on Friday or Monday. She said they just want to make sure my electrolytes are good and that I don’t pull any more shenanigans like I did on Sunday night. Luckily all of the fluid I was collecting has gone away----I think I peed about 10 oz of it off within 1 ½ days----so I am currently 4 lbs 14 oz. and we think this is legit weight not water weight.

Some things to be praying for would be (1) our ride home, it seems that the doctors think flying makes more sense. If I am on oxygen this will be necessary b/c the longest portable oxygen tank lasts only 10 hours and that will not get me to FL. My mom says if we fly she is definitely going to need some anxiety meds whatever that means. Secondly, for a home in Fort Myers. With my oxygen needs mom and dad think it would be best if we had a house to go to since we will need a tank there when we get there---it seems that we have not found the best one yet. Lastly, mommy got a very sad phone call last night----I had a good friend that was my neighbor in the NICU, her name was Alliyah. She was born 2 days before me and was my little buddy. She took a turn for the worst and passed away yesterday. If you could pray for her mom, Nancy, and for my mom and dad, as they love her during this tough time, I would appreciate it. Hope you enjoy the portraits ---- mom will not stop taking pictures of me, it is kind of annoying.

My first ever 1:40 AM post

Yes the time is correct I Chris Mustaine am awake at 1:40 am in the morning. I know what your next thought must be what in the world is Chris doing posting at (1:43am actual time). Well it is a longer story so I will start try to keep it short but I am not really coherent because of the fact that it is 1:43 AM. So let us start with what happened on Friday. On Friday doctor Wolfe (one of the NICU doctors) walked in our room on PEDS and said to us “what are we doing for you here that you all can’t do at home for yourself?” and when we couldn’t answer that question. He told us that we would probably be going home some time next week (Tuesday to be exact the 9th). We were so happy and scared all at the time. So much so that we didn’t even have a chance to post on the blog that we could be going home on Tuesday. (Just for those keeping track at home its now 1:50AM). We started running around like crazy people trying to get ready to come home. After a day running around and freaking out and making 3 trips to Babies R US we felt pretty prepared. So much so that we went to a Shea family wedding which was great. (We thought it would be one of our last nights with free baby-sitting, and the wedding was great Leaver, you totally missed out). So Sunday was our normal Sunday of Church, football, family and food. It was a great day.

I want you all to know in advance that MC is OK but this is where the story gets a little sad. Starting Saturday night the nurses and I started to notice that MC was getting a little puffy and she was retaining some water (which is probably because she was on a diuretic that helped with that, but they took her off hoping she wouldn’t have to go home on it). This wasn’t really a big deal, until about 2 hours ago when she had her first blue spell in about a month and a half. We were giving MC her midnight feeding and she just started to turn blue. I ran and got the nurse and they came in, put the bag over her face, and got her back up and running again (it has been a very scary 2 hours for us). She is stable right now with the nose canula back in her nose (they are working to try to get her O2 needs stable as I type its now at 2:08am). MC, I know, is going to be fine, but the stress level has just kicked into overdrive. We have gone form the excitement of maybe going home on Tuesday to thinking “ what would have happened if she would have done this while we were at home”. So please pray for us, as I know you all will do. Pray that the doctors will figure out why MC is stating like this, why she is so puffy, and also pray that we wont get discharged until the DR’s get this all figured out. Also please pray that we will not leave with a spirit of fear that accompanies this kind of setback. Thanks again for all you do, I really don’t know where I would be without you all (besides crying in the corner somewhere) but because of your prayers and the Lords grace to answer them (I can cry right here typing to you all HA HA) we are able to function and be strong for our little girl. SO thanks. I will post again in the morning when I get up and have more answers. (By the way I should probably change the name of this post to my first ever 2:44am post).

It is now 3:40 AM but I could not leave you all without the results of the tests. MC Sodium level was very low and that is why the doctors think she is retaining water and having trouble breathing. The good news is that low sodium is an easy fix she just gets sodium (it's a treatment plan even I can understand). So hopefully we will give her her sodium tonight and tomorrow and she will be back on the road to recovery. Thanks again for your prayers. Now it is time for sleep. I hope!!!!!

She is seriously so CUTE, Mom and Dad not so much right now

OK---I know that every mother thinks this, but I must say with all these tubes (or hoses as my dad likes to call them) gone, I think my daughter is beautiful. I have so much fun dressing MC up and taking pictures. These preemie clothes are awesome. Unfortunately I do not seem to be looking as cute as my daughter. MC's speech therapist had a preemie and said when she looked back at all her pictures when her son was in the hospital, she realized how little time she spent on herself during that time --- which actually made me feel somewhat better---I cannot remember the last time I did anything with my hair or put on any make up at all. Dad also wanted me to include the picture of him after night one on the pediatric floor----it was quite the introduction to parenthood---my favorite moment was when Chris asked the nurse when MC would get on a schedule and sleep through the night.

MC had her last head ultrasound today, prior to discharge. Everything in her brain looks normal. YEAH!!!! She also had a follow up eye exam today and the doctor said her eyes were looking no worse. We will hope to find out next week if they begin to improve. Lastly MC can hear---she passed her hearing test and we are so thankful of the progress we have made. Thanks again for praying her and us through this time!!

Please Help

This post has nothing to do with Mary Cate....this is Mom's desperate plea for you the reader. In transport from VA to FL it seems that my computer has crashed. Although I lost a ton of information, most of it is meaningless. There are 2 files though, that I am quite sad about losing, one in which most of you can help me out with. The first was my resume, which I am not looking forward to re-writing and not the one that I need help with (although I would if anyone was bored and wanted to offer their services). The second is my address list, for birth announcements and X-mas cards---I am attempting to put it back together and with your help it could be a much quicker process. If you get a second and could email me your address I would really appreciate it ----my email is bashea@liberty.edu
I would rather you not put information like this on the blog for safety reasons. Thanks so much in advance!!

MARY CATE IS A NICU GRADUATE!

MARY CATE IS A NICU GRADUATE!

Let me start of this blog by apologizing for my screaming (at least that is what people tell me it means when you write in all caps). Also please apologize to anyone around you that you may have scared when you screamed and leaped for joy after reading this stupendous news (because I know the check clerk at Babies”R”Us will never be the same after hearing my wife scream when the NICU nurse told her). Yes it is true at 9:30 pm central time Mary Cate Mustaine took the long trip from the Neonatal Intensive Care Unit on the 4th Floor of Columbia St. Mary’s Hospital to the Pediatric Unit on the 5th Floor (which is where Brigit and I have been staying for the last couple of weeks). The trip was uneventful except for the utter hurricane of emotions going through Mom and Dad who were just minutes away from being left alone with there baby for the first time in her short two months of being on this earth. Just a side note here, they really don’t give any kind of test or quiz or much of anything to prove you are able to handle being responsible for the life of your baby. This truth is never more evident when the door closes behind the nurse after she says see you in 3 hours for the next feeding (in my head I’m thinking are you kidding me, you all have done such a good job over the last three months to keep my beautiful daughter alive and your handing her over to me and I could ruin that in roughly 3 hours.) All I am saying is there should be a test or something. Despite my utter incompetence at being a good dad I am happy to report that MC is still alive and doing very well after one full night with only parental supervision and nurse help.

I am sorry again, (I got side tracked with the big news) I know you want to know how we got here. Last report MC was coming out of surgery and doing OK. Well surgery was the platform that MC needed to springboard herself into overdrive. She started improving on her breathing right after surgery and shortly after that the doctors let her start eating again and both went so well they told us yesterday that she would go to Peds if there was enough room but there just wasn’t. Until Gods glorious hand came down and let someone from Peds go home. That is when we got the call that MC was moving upstairs. So for those keeping score at home Mary Cate as we speak has no O2 needs, No IV needs and No restrictions on food (for the people like me who don’t understand that last sentence that means absolutely no tubes, whatsoever).

So that is how MC got to be upstairs in Peds and living with her Mom & Dad full time now. We are probably a couple more weeks from coming home but we are in a really neat place right now of being able to care for our daughter in tangible ways that we couldn’t do before. We know this only possible by God’s grace and your prayers. So we give Him praise and you all our heart felt thanks for praying MC through this stage of her life. Thanks again.