Michael's Home!!!

I know it's been quite awhile since I've updated the blog, but no news is good news, as they say. Michael is home and doing great! We got the OK to leave the NICU a week ago Sunday, just one day short of six weeks. Needless to say, I am very tired and I feel like a dairy cow!!! But I'm a happy and content dairy cow:) Michael was weighed this morning and is really "packing on the ounces"; he's up to 6lb, 3oz!

It is so good to have him home! Although we are still on NICU rules, in that he is on a monitor and we have to be overprotective as far as outside contact, we feel so blessed and thankful to have him here with us, instead of across town at Memorial. One day blurs into the next, as AJ and I establish a routine. But I never tire of just looking at him with awe. To think how far he's come in such a relatively short time, I realize that life doesn't stand still and I feel the need to take it all in and savor every moment.

I will be posting more pictures later this week, as time permits, so that's it for now.

My Big Boy

Just a few pictures to show just how big Mr. Michael is getting. You will notice that he is in some "outfits" now and looking good. If you want to see the whole photo album here is a link to the new album! http://www.kodakgallery.com/gallery/creativeapps/slideShow/Main.jsp?token=145853200310%3A1107724308

"We have a Code Brown!!!"

Last week was a pretty big week for Michael! You see, since we have been in the NICU, he has needed a little assistance getting milk down and out. He just hasn't been able to "Go!" Now we all know that on the road to recovery, sometimes you just gotta poop. Everyday the doctor would tell me, "we upped his feedings, but his belly is still distended, we need him to start working food out on his own." I was really starting to be discouraged; it was tough hearing the same thing every morning, especially when there was nothing that I could do to help that along. So, I am proud to announce that when I called to check on Michael in the wee hours of Saturday morning, we received excellent news...."He POOPED!" And since that momentous occasion, he has gone quite frequently!!! I never thought that I would be a person that would get excited about such things, but I am a changed woman. I just really feel that Michael is going to grow and gain weight so much better now. He already has gained some weight... as of last night he weighed 4lbs 5oz. I would like to commend my little man as he continues to make strides in the right direction. Also, I would like to add that I do realize that this is going to be an awkward entry for Michael to hear about someday... I am embarrassing him already, so "mums the word"!

In related news, I think that as a direct result of the progress that I mentioned above, I am also thrilled to announce that when I arrived at the hospital yesterday morning, my son, Micheal, was in a crib! No more hanging out in the big incubator, we are too big for that! It was so cool to walk into the room and see him looking more like a "normal baby"! The incubator's are just so scary looking, they just make it seem like the baby is so fragile in that clear acrylic box. Michael was dressed in one of his own outfits, a blanket and a tiny hat, when I arrived, and was snoozing in the room temperature air. Michael also is down to only two cords that tie him down, one is the feeding tube, the other is a monitor that watches is heart rate and respirations. So when we want to pick him up and hold him, it isn't nearly as big of a production. You can now see why it's taken me so long to write, I was just too busy trying to keep up with all of the new developments! He is awesome! I am so proud of every step that he makes. I know that we are still in for a long ride, but when he makes progress it just re-instills to me that it won't be like this for long. I am trying to remember to just exhale and watch this little person grow, change and start to have his own little personality. He is more alert every single day; sometimes he will just lay back and take in his surroundings. At times his eyes are so big and alert, I am sure that he is making tiny mental notes about the world around him. He is also starting to recognize our voices and he seems to look for us when we enter the room. I am enjoying getting to know him and I am excited to see who he is going to grow to be. In the midst of all of the emotional and hormonal peaks and valleys I am going through, all that I need to do is just look at Michael and I start to feel centered again. He is like a drug to me, he is what makes me feel better!

"In God's Arms"

This past Sunday we laid our son Levi to rest. In South Bend there is a program called "In God's Arms," that is a memorial built just for babies. You would never have heard about it if you hadn't known someone who had lost a pregnancy and had participated in this service. A local funeral home honors babies by having a burial four times a year for the ashes of those lost. In 2008, I attended this service with a friend to honor the miscarriage that she had suffered, and it made a positive impression on me. I came away, at that time, with a sense of peace and hope. So, when it came time for us to make a decision for Levi, I knew exactly how I wanted it handled. Rather than focusing on a traditional sad funeral, we chose "In God's Arms" to honor and acknowledge his presence in our lives. It gives me a sense of peace to know that Levi is buried with the babies rather than alone somewhere else. The service took place at Southlawn Cemetery here in South Bend. The area dedicated to these babies is a peaceful and pastural setting that includes a large monument, bench, and headstones honoring the babies. As time goes on, it will be a peaceful place to visit and share with Michael. Although it was a tough and emotional day, hopefully we will get a bit more closure on our loss, focus more on the present, and look forward to our future. Which brings us full circle back to Michael.

After the memorial service, AJ and I went up to the hospital to see our "little fighter." We had made arrangements to have the chaplain that baptized Levi come and do a blessing for Michael. Titus (the chaplain) is a very nice man that has a calming energy about him. He took care of Levi two Monday's before and he made us feel as comfortable in our situation as anyone could. In fact, while he was praying over Michael, Michael couldn't stop smiling. His smile right now seems to be mostly accidental, but it is great to see him grin and bare his little gums. Titus also shared with us that his wife had had a twin brother that died at birth. What are the odds that we would have that connection. We left Michael's room with a sense of comfort that we had made the right decisions for our family.

Again this morning I am reflecting back not only on this past weekend, but on the past two weeks. Although, there have been many people/angels that have been a part of our lives in the past few weeks, (more on them later) there are three that stand out in my mind today. In addition to Chaplain Titus there are two men that I want to acknowledge. The first is Dr. R. Shah. I cannot express enough the compassion that I feel from this man. I count my blessings every day that he was the doctor on call that night. Being cared for by a large group of doctors, you never who you're gonna get. But there is no one else that could have taken better care of us that night, physically or emotionally. That brings me to Kerry Palmer. Kerry and his family run Palmer funeral homes, and Southlawn Cemetery. From the time he walked into my hospital room he seemed to understand what we were going through and has helped us through the process. He shared that he was familiar with the NICU, and also with loss. Kerry took the time and energy, when some people wouldn't, to make a huge exception for our Levi to be included in the "In God's Arms" service. You see normally the service is for 20 week babies and earlier, Levi was 29 weeks; it is also affiliated with St. Joseph Hospital, we were at Memorial Hospital, but he made it happen for us because it was what I wanted. We will be eternally grateful.

That is all the time I have this morning; I am off to the hospital to see my Michael, who by the way now weighs 4 lbs!!!!!!! He is getting so BIG!!!!!!!!

I want a "WiFi" baby!!!!

At this point in technology, just about anything you want can be done without wires and cords, but not in the NICU. Michael is hooked up to all sorts of monitors. On Thursday, we even had two new wires for a system that the hospital is just trying out, and we were asked to help in the research. (Unfortunately, they had the same result as they have gotten before, inaccurate data) But this monitor included a strip that went across his forehead, which is only about two inches wide and a three inch strip across his lower belly, those were HUGE on him. Luckily, that was just a twenty four hour study, so he didn't have to deal with them for long. In order for AJ or me to hold Michael we need to have the nurse come and get all of these wires in order and position him in our arms. Then, without Michael moving, without us shifting all around, with out explanation, by the time that the nurse picks him up and places him back in his crib he is a miss so tangled up that he makes home stereo wires look organized. The most amazing thing is that Michael really doesn't seem to mind them. Well, I can't honestly say that... Thursday night I went in to the hospital about 10 minutes after AJ had left, I walked into his room and all hell was breaking loose. Michael had pulled his cannula out of his nose so his oxygen was going onto his cheek, he pulled his feeding tube out, his legs were out kicking and his little fingers were reaching for anything that they could get a hold of, and he was ANGRY! They tell us that preemies like to be "balled back up" if they are in a stressful state, so basically you take the feet in one hand and arms in another and hold them close to his little belly. So, that is exactly what I did, with little success. Then our nurse came running in with a tiny green pacifier and when popped into his little mouth, it was like an off button. He was soothed and almost asleep in just a few short minutes. When I asked the nurse what had happened she said that "he wanted his pacifier and it had fallen on the floor" so she had to go get a clean one.

The point of all this is that right now, Michael needs monitored so closely. He needs to have these probes stuck all over his body. But someday soon I hope to have a wireless baby, one that I can get in and out of his crib without the assistance of a nurse. One that I can dress and snuggle without the fear of accidentally shifting a wire the wrong way, without worrying about keeping his IV arm out straight. Michael already has gotten rid of some tubes and wires, like the oxygen and the C-Pap, but there are many to go.

But the good news this week is that we are on top of the infection that he had, and he is able to feed again!!! This is a huge step in the right direction! Hopefully, during the next few days he will start putting on some weight. He needs to get some meat on his bones. He is also off the oxygen for the second time and his digestive system is working again. He is much more alert and has the energy to throw a few temper tantrums...which is a sure sign of health. So from the Jones house I say enjoy the weekend, I know I will, AJ and I are going to have some much needed time together. I will catch up with you all on Monday!!!!

Boy's Night Out!

I just wanted to share a story about my hubby, AJ! He has been such a good new daddy, and a rock for me as well. Last week, when I was in the hospital, AJ was in the NICU constantly. He knows the ins and outs of the NICU and is a favorite with all of the nurses. I was the one that read all of the books and he is the one that quickly became the hands on expert. It has been unbelievable to watch the changes in him, and I couldn't be more proud. One night last week, he came running into my room and was about to jump out of his skin, so excited that he got "peed on". In response to this I of course said, "What are you talking about?" He had evidently changed his first wet diaper and forgotten to point "it" down. He was thrilled to be covered in baby urine. He has been like that with EVERYTHING! He was so happy to change his first poopy diaper, to take a temperature, to weigh the diapers, to measure Michael's little waist. AJ has started to call Michael his "main man Mike!"

On Monday, AJ started back to work and he had a rough day. He was used to spending every possible waking minute next to our little man and now he has a few short hours with Michael at the end of the day. AJ has been trying to get to the hospital at 7:30 for bath time, but that is a rush. Well, he has started referring to his alone time with Michael, "boy's night out!" And we have all laughed at how the meaning of that phrase has changed. Last night when I got to the NICU to have my late shift cuddle time, I saw something that melted my heart. My big, tough, husband and my little tiny Michael were both sound asleep in a rocker. The nurse stopped me on the way in and told me to have my camera ready when I walked into our room. It was a moment that I will never forget. It is amazing the feelings that are developing not only for our son, but for Aj and I as well. I always knew that Aj would be a great dad, but to have a front row seat to watch him become a parent is really an honor. So to this I say, "Keep it up Daddy, you are doing a great job!"

Remembering to Breathe!!!

Let me start off my telling you all about a beautiful little boy named Michael Terry Jones! We named him after the most important man in each of our lives, our fathers. And we can only pray that Levi is in my dad, Michael's, arms right now. Michael Terry Jones is a strong little man, he is a fighter, our own "ultimate fighter." He was born at 3lb 14oz and 17" long! He cried immediately, which was a sound that I may never be able to describe. We had been waiting and praying to hear those lungs fire up for what seemed like an eternity, and when they did, all AJ and I could do was cry along with him. As of now he has dark hair and blueish eyes. He may come home with blond hair and brown eyes or brown hair and blue eyes, you just never know. He has blond peach fuzz on every inch of him. He has his Mommy's hands, long and skinny and his Daddy's feet, arched and wide. He is absolutely beautiful and no one who has seen him can get enough of him, especially AJ and Me.

His first experiences with the outside world have been filled with trials and hurdles, but he is continuing to roll with the punches. First off, if you look at the photo album that is linked in this blog, you will see in the early shots that he had a huge tube crossing his face called a C-PAP. This basically forces humidified oxygen into his lungs. This tube doesn't go into his lungs itself, which is a good thing, as those tubes can cause scarring in the lungs. But by Wednesday September 30th he was taken off of that big tube and put on a small cannula that just puts small puffs of oxygen/room air into his nose to stimulate breathing. He has a lot of other tubes and wires attached to him, most of them regulate and record other bodily functions. The tube that goes into his mouth is a feeding tube that goes into his belly. He didn't have a good go- round with the formula that they tried in the first few days; his body didn't want to digest it. But I like to think that he was just stalling until Mommy's milk came in, because he has done great digesting that. Michael and Mommy are a nutrition team to be reckoned with! I pump around the clock and he does his best to take in more milk every day.

Of course having said that, I need to let you know that the above is "game plan," and no matter how hard we try, occasionally we all have to rebound and rethink even the "best laid plans." Yesterday we had to do just that! (SIGH) Michael and I do what is called "Kangaroo Care". There are pictures in our album of us in action, or rather not in action at all, doing Kangaroo time. Basically, we stick him down my shirt, so that his body is against my chest, skin to skin, for at least an hour at a time. Then we relax, I am in a reclining chair, and we just stay still and quiet. The goal is that he can hear my heart, which is familiar to him, and smell me, and feel my lungs move in and out. This has been proven to do some remarkable things for him, including, regulating heart rate, shortening the time in the NICU, aiding in the transition to nursing, etc. Well, we typically both really "zonk" during this time, but not yesterday... he just couldn't remember to breathe. He was having bouts of apnea (pausing in respirations) and then we would have to rub him vigorously to stimulate him again. Needless to say, by the time the hour was up I was a stressed mess, and I doubt he benefited it either. So it wasn't our best time! The doctors and nurses keep reassuring us that all of that is apparently NORMAL for NICU babies to do from time to time, but this did encourage the doctor to do some more testing. Well, today we know that Michael has a little infection and it is causing a domino effect. The infection is causing him to have labored breathing , which makes him have to have more air, which causes air to inadvertently get into his belly, which makes him too full to keep his food down, which causes him to be tired and not at his best to fight an infection. Ahhhh.....that is a mouthful. It has been a bit of a vicious cycle, but now we know the source so he is on antibiotics to clear the whole mess up.

Today our "Kangaroo" time went so much better! (Heavy sigh) We cuddled up for over an hour. It was awesome!!! And we also got moved to a room that is just us and one other baby who will be going home soon. (I had asked if we could move due to the fact that twin boys were brought in yesterday, and one was put right next to us; between the grief and the hormones that was too much for me to take.) Michael's new room is darker and quieter so I think it will be more relaxing for him. He needs that to finish growing and developing all the inner parts that are so important. It is sometimes hard to remember that he isn't just a little baby, but he is a baby that should have been growing in me for another two months. We have to remember that he has needs that we don't automatically think of and we will continue to learn about him and his requirements. Our goal is to be able to trust our informed instincts, just as we would if he were born full term. So we keep the faith, we try to trust the experts, and we put all our love into Michael, in hopes that he will keep progressing.

Well we made it through the first week! (Heavy Sigh) I want to start out by saying "thank you" to everyone who has been there for us through this time. We have had such support from family, friends, physicians, nurses, and total strangers. This experience has proven to me that there are angels walking around among us. I cannot believe the situation that we are in, there is so much to be happy about and yet so much to grieving to be done. AJ and I are taking it one day at a time, and trying to remember to stay positive. Now and then it seems impossible to think about the day ahead, so we try focus on making it through next minute. Then, we think of Michael and we smile and the world feels happy again.

Complications began on Sunday September 27th, halfway through the 29th week of my pregnancy. I had a feeling something was off, I was having some contractions, nothing like labor contractions, but uncomfortable just the same. There also wasn't a lot of activity from the boys which wasn't normal. I did what I knew to do to calm things down, but nothing seemed to work. So AJ and I put a call in to the doctors office, he told us to go to the hospital just to check things out as a precaution. When they tried to put the heart rate monitors on they had a hard time finding two separate heartbeats, not uncommon with twins. The next step is an ultrasound, as they did that I saw that Levi wasn't moving. The resident doctor said that she needed to get a tech down with a better machine to see what was going on. They didn't at that time admit that what I saw was correct. A little over an hour later the ultrasound tech arrived with my OB and they confirmed what I had already known. Levi, "Baby A" was gone, but "Baby B" was doing well. After many tears, much deliberation and 5 doctor's varying 0pinions, we decided to wait until Monday morning to make a decision about the next step. I spent the night debating what my head and heart were telling me, by the morning I had made my decision. AJ and I were in agreement that I was no longer the safest place for those babies, it was time for them to come out. Simultaneously, Dr. Shah called me and said after much deliberation he felt the same way. My C-section was scheduled for noon on Monday. Our families and a few close friends spent the morning with us crying and even sharing a few laughs. At around 11:00am the nurse told us I was bumped back about an hour and a half, which was great news. That time let my mom arrive into South Bend from Florida and make it to the hospital before AJ and I went back. It also reassured us that I wasn't in an "emergency situation," which was comforting. My C-section went well, and when we heard the first few baby cries, AJ and I were both relieved. We were quickly reminded of our situation when the nurse came over and asked if we wanted "Baby A" removed from the room. Instead we chose to hold him and spend time with him, while "Baby B" was taken to the NICU (neonatal intensive care unit). We told to take as much time as we needed and were reassured that he would remain nearby and we could see him anytime we wanted. Levi Camden Jones was a 4lb 7oz beautiful little boy. He is so special to us and we will never forget the moments that we had with him. There was nothing unusual about his umbilical cord, or appearance; we will never know or understand the reasons why this happened.