Wednesday, March 27, 2013

Tomorrow is the Big Day!

So tomorrow is it! We are finally getting to bring our babies home after 11 long weeks in the NICU.
Unfortunately Madeline decided she just couldn't quite go without bringing a little piece of the NICU with her. So we will be bring her home on a small amount of oxygen. If you remember my last post where the doctors were debating to put her back on it or not, it was decided that although she is able to maintain her oxygen levels most of the time without being on oxygen, when something small happens and her body gets the slightest bit stressed she just doesn't seem to have that extra little strength to overcome it without her oxygen dropping. So it was decided to put her back on a small amount of oxygen in order for her to be able to come home with her brother. They told us they don't expect her to have to stay on the oxygen for more than two or three weeks. The good news is though, with oxygen comes monitors and that means a little peace of mind for Jason and I.
So wish us luck! We are beyond excited and relieved to start this next chapter of our lives as a family of 4 all under one roof.

Sunday, March 24, 2013

Madeline Gives Us a Reality Check

The past few days Jason and I have been living on cloud 9. We were so thrilled. Everything seemed to be going so well. The babies looked like healthy 6 (almost 7!) pound newborns. They both were off oxygen, off their feeding tubes, and taking bottles. Mason had his hernia repair surgery and came back from the operating room breathing on his own and hungry for a bottle like nothing even happened. We were told that as long as nothing crazy happened we would be bringing both of our babies home next Wednesday. There was finally a light at the end of this NICU tunnel (I say tunnel but what I really mean is exhausting, never-ending, stress filled, hell of a ride roller coaster). Then Madeline decided it was time to smack us back in to reality. Because although these babies may look like perfectly healthy little newborns, the reality is....they are still preemies. Preemies who were born wayyyyy to early, have overcome so many obstacles, and still are not as healthy as we wish them to be. Don't get me wrong, they are doing fabulous. However, we learned on Friday night things may not be as they appear. Especially in Madeline's case.

Madeline had come off oxygen this past Monday. The first few days weren't so easy for her. She had many dips in her oxygen levels throughout the day. However, they were always brief and she was able to recover on her own. They happened frequently but since she popped back up so quickly from them the doctors decided to let her stay off the oxygen and try and get the hang of it herself. By Thursday she seemed to be having a lot less of these "dips" in her oxygen. She was also taking almost all her feeds by bottle and not her feeding tube. So on Friday they removed her feeding tube as well. On Friday during the day while Jason and I were on the floor of the OR, waiting for Mason to get out of surgery, Madeline had one of these dips in her oxygen. The nurse had to use the oxygen mask to blow some oxygen on her face to help her recover. This was unusual for Madeline because she always recovers without anyone having to intervene. We didn't really think much of it, thinking that she may have gotten choked up on some milk or spit up. Late that evening Jason and I were sitting next to her crib while she was sleeping. She again had another dip in her oxygen level. I peeked in to her crib and she looked fine. I fully expected her to bounce her oxygen saturation back up to where it needed to be in a matter of a few seconds, as she usually does. This time though her alarms kept dinging and her color started to change. Her oxygen was much lower than she usually dips down to. Keep in mind she is fast asleep not making a peep through any of this. It took several minutes, the nurse paging the Nurse Practitioner, waking Madeline up, rubbing her back and chest, and again the use of the oxygen mask for her oxygen levels to return to normal. The Nurse Practitioner who was on for Madeline's team of doctors that night noticed she was sounding congested. Not in her lungs but more in her upper airways. Maddie always snorts a little when she breathes so this was not too unusual for her, but when you listened more closely it was apparent she sounded pretty congested. So they decided that before anything drastic was done (like draw blood for labs or place her back on oxygen) they would try flushing her nose with saline and suctioning it to try and help some of the congestion. As the nurse did this a HUGE wad of, well for lack of a better word, boogers came out of one nostril and another out of the side. You could literally hear this getting sucked out and into the suction tube from across the room. They were HUGE. Everyone seemed to be immediately relieved. It was obvious this was why she couldn't breathe efficiently. Immediately her oxygen rose to almost perfect, she stopped doing what they call pulling (which shows she is working hard to breathe), and everyone took a sigh of relief. I however was trying to hold back tears. This officially freaked me out!!! I mean this was such a small and stupid thing. Boogers?? Really?! How could something so stupid cause my baby to turn an unnatural shade of pale blue and have so much trouble breathing. What if this happened when we were home in the middle of the night. With her oxygen levels dropping that low, her heart rate would have eventually dropped as well and I shudder to think of what could have happened next. This was not OK. This was not an "oh no big deal just some boogers" situation. We were taking our babies home in less than a week. Something like this can not happen at home when we don't have alarms to alert us that our sweet baby was in such trouble. Needless to say Jason and I did not sleep well that night. I shed a lot of tears of panic and fear.

The next morning Madeline again had another episode where her oxygen sats dropped and she needed a little boost of the oxygen mask to help her recover. So Jason and I sat down with the doctor and discussed what was happening. We came to the conclusion that maybe we are just expecting a little too much out of Madeline right now. As thrilled as we were to think that she will be going home next week at the same time as Mason, it was apparent that this may not be the case. Madeline had accomplished so much, so quickly, over the past week. The doctor had warned us that sometimes a preemie baby can do really great and then start to slowly show signs that maybe things are moving too fast for their little, immature bodies. Maybe taking her off oxygen and removing her feeding tube in the same week, even though she had been doing really well, was more than she could handle. The doctor explained she just didn't have the extra strength to overcome small obstacles (example: taking all of her feeds by bottle instead of just 3/4 of them and relying on a tube for the remaining or even overcoming breathing around or sneezing out large boogers and mucous!) that a full term or stronger baby could. We decided that if Madeline had another episode where it took a nurse to intervene to get her oxygen levels back up, then she would be placed back on a very small amount of oxygen again. A few days ago if you had told me Madeline might need to go back on oxygen I would have been very upset. Now I realize if she needs this little bit of oxygen for another week or so, then that's what we have to do for the time being. I know she will eventually come off of it. But this may be what she needs until her body adjusts to everything we are asking her to do.

We also discussed the possibility of her being discharged home with heart and oxygen saturation monitors. I was under the understanding that she could only have these monitors if she went home on oxygen. I explained to the doctor that I would NEVER sleep if these little events were possible at home and she was not on any monitors. I seriously was already beginning to figure out how Jason, I, and my mom could take shifts watching her in the night so that she always had a set of eyes on her and we would know if she stopped breathing. The doctor assured me that they would not release her home if she was still having these episodes and if they thought they were still a possibility when she was discharged home they could send us home with monitors for her to wear at night that would alert us if her oxygen levels or heart rate dropped. Hearing this took about ten million pounds of weight off my shoulders. I could have kissed that man. I'm not kidding when I say I would NOT sleep and would spend every minute of Madeline's sleep with me staring at her to make sure nothing happened. It was such a relief to know that if we needed these monitors at night, then he would order them for us at discharge.

The last thing we discussed was it was now possible for Mason to be discharged before Madeline. Again if you had told me this a few days ago I would have been devastated. Now I realize that if Madeline needs a little more time, then that is exactly what she will get. I know this will be hard for our family. If Mason goes home then I will go back to southern Illinois with him, and Jason and the rest of our family will have to take my place in St. Louis staying with Madeline. This breaks my heart, but I know it will only be for a short time. I have spent almost every single day all day with these babies at the hospital. I have been away only a few times when I came down with mastitis (twice, not fun) or when I went home for the day to do laundry and get their nursery together. I hated thinking I would be finally going home and not bringing both of my babies. But I know she will grow out of these episodes. I know our doctor will make sure we feel safe bringing them home (even if that means she comes home on a small amount of oxygen or uses a monitor at night to alert us of problems). And most importantly I know we will make it through this.

Another NICU twin mom who I message with frequently on Instagram told me that the last week or two were the hardest for her. Initially I thought yeah right nothing was harder than those first few scary weeks, but now I understand what she meant. The end of this NICU journey is soooo close but at the same time feels like it is taking forever. It is not only exciting to think we will all be home together, but also extremely frightening. Maybe I can talk one of the nurses into coming home with us. (Ali and Amanda I know you are reading this.....don't ya want to quit work for a week and stay with us....I'm kidding, I'm kidding. But not really. haha!) 

UPDATE: So I wrote this post on Saturday. It is now Sunday and they have not had to put Madeline back on oxygen. She has not had any more major episodes and seems to be doing really well (knock on wood). They will continue to keep a close eye on her. But as of now she is still off the oxygen and feeding tube. She is taking all her bottles as well. We are not sure when they will decide to discharge her. She still seems to be a little congested but other than that is doing great. As of now I'm thinking they will most likely be discharging Mason first and we will take it day by day until they decide Madeline is done giving us scares and can come home as well! 

Wednesday, March 20, 2013

Good news, Scary News, and Other News

Believe it or not our little ones now weigh over 6 pounds. Actually as of Monday they both weighed the exact same 6 pounds 8 ounces. Madeline has now officially caught up in weight with her older brother (and by older I mean by 1 minute!). They actually look like chubby newborns and not skinny little preemies!

So the good news is last week Mason came off his oxygen and is breathing room air. This week he also came off his NG tube (feeding tube). He has been taking all his bottles now so there was no longer any need for the little tube in his nose. So that means Mason has no tubes or tape stuck to his little face! Madeline came off oxygen this week! She had a little trouble adjusting the first few days, but is now doing great off of it! Madeline has also been doing great with taking bottles. She occasionally is a little too sleepy to take them all but we are hoping she gets more consistent and they have talked about removing her NG tube possibly on Saturday. I can't wait to see her with all the tape off her face!

We have also found out that Mason will be having a small surgery on Friday. Mason has a right inguinal hernia and will have to have that repaired a few days before he is discharged. Hernias are fairly common in preemies and we have been told the surgery is a laproscopic surgery with a very small incision. Our only worry is that he will have to be put asleep for the surgery (which means they have to place him on the vent for the surgery). Mason has been doing very well breathing without any oxygen, so obviously we have some concerns about how he will do coming off anesthesia and taking the breathing tube out after the surgery. We are hoping it won't be an issue for him, however I have become so accustomed to worrying about these two that I'm kind of driving myself crazy thinking about how he will adjust after surgery. We are hoping and praying for the best of course!

Madeline still with the feeding tube, but no more oxygen!!!

Mason without his oxygen and feeding tube! 
So I'm trying not to get my hopes up too much but they have told us that if all goes well with Mason's surgery and he recovers quickly then he may be discharged as early as Monday or Tuesday. If Madeline can continue to show progress with her feedings and is able to take all her bottles there is a chance she may also be discharged along with her brother! If not she may have to wait until the end of next week. Jason and I are really hoping we will be able to take them both home on the same day. It will be so difficult managing with one baby back home and the other two hours away in St. Louis. I know it would only be for a few days, but we are so eager to have our whole family under one roof. Nothing about our pregnancy, delivery, etc has been "normal". So we are really hoping to have that "normal" homecoming with our babies. To leave the hospital with both our babies and come home and feel like finally we have our family together. But... if she needs a little longer here in the NICU, then we will make it work!

So get ready for picture overload. I haven't posted in a while so I have lots of pics to share! Most are from a few weeks ago so that is why some of the pics show them with their oxygen and tape!

Love how he has his hands folded

Mason loves his Curious George monkey

The Wubbanub Binkys are probably the best invention ever. They love them. 

They have had lots of visitors the past few weeks! 

Mason just waving hello! haha!

A saturday morning in the NICU

Their first St. Patrick's Day

 Cousins in their matching bows! 

Wednesday, March 13, 2013

2 Months Old!

The twins are 2 months old as of yesterday, March 12th. The babies have gotten so strong and big in the past month. I could not be any more proud of everything they have accomplished. 

Mason Dallas Rimini
At Birth: 2 pounds 6 ounces, 14 inches long
1 month: 3 pounds 10 ounces, 16 1/2 inches long
2 month: 6 pounds 1ounce, 17.9 inches long

Madeline Sophia Rimini:
At Birth: 2 pounds 7 ounces, 14 1/2 inches long
1 month: 3 pounds 4 ounces, 16 inches long
2 month: 5 pounds 13.5 ounces, 18 inches long

So much has happened in the past month.  Monday they tried both babies off oxygen. They were on 1.5 liters previously and were planning to switch them both to low flow oxygen at .1 liters. However, before they did that they decided to try them completely off oxygen to see how they would do. Mason did fabulous and is still off the oxygen! Madeline couldn't quite make it work and her oxygen levels wouldn't stay quite as high as they needed to be. So she is now on .1 liters of oxygen. It's crazy how that just tiny little bit is what she needs to keep her oxygen levels up. But if we have learned anything from Madeline it's that she only does things on her own time. When she is ready to be completely off she will let us know, probably by ripping it out herself like she did the ventilator! The doctor said this is the lowest form of oxygen they give and it's actually an amount that they will send babies home on. So it's good to know that if we get to the point where she is ready to go home from a feeding and growing standpoint, and still needs this tiny puff of oxygen, that's won't stop her from being released home. Hopefully she will be off of it before then, but if not, that's ok too. 
Speaking of feeding the little ones are still getting their feeds from the NG tube (in their nose) but we have been working on breastfeeding and bottles! Breastfeeding these two probably requires a post in and of itself....but lets just say it's going pretty well. Some days better than others. One time they will take a full feed from nursing, the next time they seem to want nothing to do with it, then the next time they make take a fourth of a feed. It can get pretty frustrating that they seem to not have any consistency with it, but the doctors assure me this is normal. They also occasionally choke themselves up while eating. Blue is not a color you want to see your baby turn. Especially when they are in your arms trying to nurse. They have given me many a heart attack when they turn that nasty color and send their alarms off. Ugh. Scares the crap out of me. Thank God for the nurses around that can help bring that nice pink color back to their faces when they get choked up like that. Today was the first day we tried a bottle. The doctors put the order in as only Jason (not me, not the nurses, not the therapists were allowed to try first). I thought that was sweet. He was pretty excited to finally get to feed them himself. At the first trial Mason was not interested. Madeline finished 3/4 of the bottle her first time. Later that day Mason was able to finish 3/4 of his bottle and Madeline did the same. They just seem to get a little tired during feeds and can't quite finish, so the remainder is given to them through their NG tube. We will keep practicing though! I know they will get it eventually. It's just a little frustrating when you want so badly for them to catch on quickly so that it's one last obstacle in our way to going home. 

You continue to be the most animated little guy. You always have either a little grin or a worried scowl on your face. You also grunt and groan during any sort of activity. You are such a noisy little thing! You have also gotten so big!! You gain so much weight every single day. You take 54 milliliters (about 1 1/2 ounces) of milk every 3 hours. Your preemie clothes no longer even fit and you are now wearing newborn size sleepers (even though they are still a little big). Over the past week you have pretty much stopped spitting up with every feed and you seem to be much less fussy now. 
I am so proud of how well you have done this past month. Since birth it amazes me how I have never known anyone as small you and your sister and at the same time I have never met any two people as incredibly strong. You amaze me every single day and I love you so much!
Love you to the moon,
Your Mommy

My baby girl. You continue to be so laid back and never seem to get too upset. Your Daddy and I have only heard you give a real cry once! You have found your voice in other ways though. You give little grunts and squeals sometimes, but most often you like to snort! You sound like a little piggy sometimes! Speaking of piggy you have gotten so big! I love to kiss your chubby little cheeks! Even though you have always weighed less than your brother, you sometimes look as though you are bigger because of those adorable cheeks! 
You are proving to continue to be very independent. Sometimes we will walk over to your crib and you will be wide awake just looking around. We never know when you are awake because you never make a peep! You are happy to just look up at the lights on the ceiling. 
We love you so much Miss Maddie Moo. I could spend all day giving you little kisses and watching you. Keep growing big and strong and overcoming all the obstacles that being born so early has unfairly put in your way. I have no doubt you will.
Love you to the moon,
Your Mommy 

Mason and Daddy trying a bottle for the first time

Mommy and Madeline trying a bottle 3/13/13