Extended Visit with Suttle Surprises!

Last night I went to visit the boys. They are getting so big and maturing so quickly. I never thought I would say it but, it makes me a little sad to see how fast they are growing. It just reminds me that once they're actually home, time is going to go by faster and faster with each passing year.

Most of you have read that we have been trying to work on getting the babies to associate sucking with having a full tummy to attemt to prepare them for bottle feeding. Well last night when I went to visit, Logan was so into his pacifier. He has never really been one to try to suck his thumbs, eat his fingers, or his sleeves. He would suck some but just was not nearly as thrilled about the paci as Nolan. To see him doing so well with the pacifier last night was just so exciting! It means he is maturing. That need and desire to suck before a feed and "root" for food, those are all steps to "maturing"! We were even able to get Logan to keep his hand in one spot so that he could "hold" the paci in his mouth as opposed to sucking once or twice and it flying out of his mouth! We are still unable to hold Logan due to the RV (Rhino Virus/Common Cold). Last night I was able to change his diaper and help with his hands on care. I at least get to have some contact with him that way. His nurse did take a culture yesterday to see if the RV is still hangin out. Hopefully the results will come back this afternoon/early evening and they will be NEGATIVE! It was so neat to see Logan so alert yesterday.

During his hands on care and feedings he was very into what was going on. He did not seem to be the least bit bothered by it. He was just very relaxed and went with the flow! One thing that I was just thrilled about was his amount of movement. He had wiggled himself ALL THE WAY to the bottom of his isolette. The distance from where he is normally to the bottom is about a foot but, for a baby that shouldn't even be here yet, thats pretty stinkin far to wiggle! These guys continue to amaze me on a daily basis! Considering all of the things they should not be able to do, they sure are doing a whole lot! Logan is almost on full feeds at 31mL and is doing well with them. The nurses have started running his feeds over 45 min on a pump and this has really helped with his reflux issues. I wonder how I will manage to do that at home? I am sure we will learn, even with out all of the fancy NICU equipment. Logan's isolette is set to 26.5 degrees celsius. Room temperature is between 27 and 26. Do you know what that means? It means that once Logan is able to bottle feed and off of his feed tube and over his sickness, he will be movin out of the isolette and into a BIG BOY BASSINETTE! We are very excited about all of the upcoming goals we are trying to reach!

As for Nolan, he is also surprising Mommy and Daddy more and more every day. He too was very alert last night. They are starting to actually act more and more like full term babies every day. From a respiratory stand point, the boys are definitely improving. They were maintaining a respiratory rate of anywhere from like 120bpm down to as low as like 20bpm. Full term babies will breathe at a rate of 20 bpm to 60pm. This is ideal. We were beginning to get concerned with their bpm and adding it to the list of things to stress Mommy and Daddy out during visits. Yesterday (and the day before) Nolan (Logan too) were breathing anywhere from the high 70s down to 20bpms! They are starting to "just get it". Things are clicking and starting to come together for these guys in a positive way! Nolan was, as usual, constantly looking for something to eat/suck on. This is AWESOME! The more they show they are ready to nipple, the easier it will be once we attempt it on Monday! I hope to get a couple of pictures of this main event tomorrow. Life would be so simple if there were a photographer to follow me to the NICU during my visits! :) Grandpa is a self-proclaimed photographer so, we will just have to make him come up with us a little bit more often now wont we! Last night during my visit I was able to hold Nolan.

I got to talking to his nurse and before I knew it, he had been out for about 2 almost 3 hours! His body temperature should be at 26.5 degrees celsius as a minimum but, when we checked him he was a little cold. However, he was only wearing a onesie, was wrapped in one blanket, and, was out with NO HAT! He had only dropped his temperature to 26.0. Not too shabby for this little guy at all! I put his hat on him and wrapped him extra tight. Within a half hour or so, he was right back up to where he needed to be and then some. Nolan has been actively trying to take himself off of his Nasal Cannula. I am pretty sure he is sick of having that thing blowing up his nose! Poor Guy! One step in

the right direction to losin' the tubin' was made yesterday! Nolan was not only getting 25% Oxygen through his cannula but also to his isolette. The awesome respiratory guys finally decided he proved him self ready and they shut off the oxygen to his isolette! YAY! That means that he is now only on 25% oxygen and room air (what you and I breathe) is 21%! I was so excited to hear this! Nolan also had his feeds increased and is up to 21mL every 3 hours! While Nolan is proving to be the chunkier of the two, we are starting to believe that most of his weight is from water retention. He was given an extra dose of his lasiks two days ago and continues to get them every other day. The docs are dicussing whether or not to put him on daily lasiks like his brother to rapidly decrease the edema (swelling). Nolan's ID bands were just replaced two days ago and he is already either out growing our out swelling them, one of the two. The lasiks, in my opinion, are much needed at this point. Nolan is also going to try to bottle feed on Monday....Mommy is super excited and can't wait to give it a try! :) Upcoming goals for Nolan are to master bottle feeding and get a new bed!! I think we are closer to the new bed than the bottle feeding but....it is all about patience. We are no longer on our own time but rather, Twin Time! I left the hospital around 1am and the boys were both sound asleep! I just hate leaving them. It's almost time to wake up Daddy and head up for another visit!



NWM sound asleep!

 


LLM sound asleep!





Caution: Rough Waters Ahead

In the beginning, all of the nurses kept reminding us that this would be a roller coaster until we were finally home and even then, there would still be bumps that came along. I did such a good job living by this and not getting my heart set on things and really just avoiding breaking down for such a long time. We are fast approaching two months and I am really starting to break. I keep seeing these babies go home to parents that don't show up on time, never come to visit, don't seem to really give to hoots about the baby that they are blessed with and lucky enough to be taking home and wondering when I will get my turn. No one can possibly understand where I am coming from at all unless you have lived it. It is just one of those things. To sit in that room and be so willing to take my babies home in the blink of an eye and know I can't. It just hurts. I hate to see them in there. They are really doing well for 25 week preemies BUT that doesn't make it hurt or suck any more or any less. I am afraid that if one more person tells me how lucky I am I may burst. I realize this is not the christian way to be however, it is the human way. I am not questioning God or my religion. I do not think I am being punished for anything. I am not blaming God, I just don't understand why some people that don't seem as deserving as others get it so easily. I just want my babies home really. While the NICU is a very humbling experience, I would never wish this on anyone. To sit and watch the monitors and listen to the alarms. To over hear all of the medical jargin, to know far more about the NICU than one that is not a NICU nurse should, is something that I never ever want to experience again. All I can do is have patience and know that it is in God's hands. Regardless of how it appears to me, it is in God's hands. We would not have made it this far if it were not. The boys' two month mark is fast approaching and everything is starting to hit me like a ton of bricks.

Ok, now that I got that vent off of my chest, I will move on to the positive things! :)

Nolan continues to do well. He weighed in today at a whopping 4lbs 2.5oz! He broke 4lbs!! This is H.U.G.E!! He has a little double chin and is starting to get some little chubby rolls on his arms. I love it!

 He is doing well taking a pacifier just struggling to keep it in his mouth. If we swaddle him nice and snug and gently pull the top of the blanket over the paci, it will stay fairly well. He roots, sticks his tounge out, looks for food. About 15-20 minutes or so before almost every feed, he will wake up. His eyes are wide open and he is very alert. It seems like he is getting used to his feeding schedule and knows what to expect! It is during feeds that I try to work with him the most on sucking. Monday we are going to attempt his very first bottle feeding. This is very exciting and very nerve wracking. I want to do it and I want to see him soar with it but, I do not want to see him fail or struggle. Im sure I will take it pretty hard. Ive been taking EVERYTHING hard. I failed to mention that I may or may not have had 2 major break downs in the NICU in two days. Not one of my proudest moments that is for sure! Back to Nolan, he seems to be out growing his preemie outfits rather quickly. I am excited to see him growing but, I am kind of sad to see how quickly he is growing. It is like time is just flying by. Before I know it they'll be driving!

Nolan has had a lot of edema. He has what is called dependant edema. Dependant edema is from the babies laying at an angle in their isolettes. This is very common in preemies. Since he is at a downward facing angle, he has a lower extremity dependant edema (swelling). His legs have become taut due to the edema. He even has a significant amount of swelling in his scrotal area. The swelling in his penis is from the edema whereas the swelling in his scrotum is a combination of the edema and his groin hernia. To try to help Nolan release his excess fluids, he is on Chlorothiazide every day and Lasiks every other day. These are both dihretics. The Lasiks are a boost to the Chloro. There is a chance that Nolan will drop his weight slightly if he responds quickly and positively to the dihretics.

Nolan does have an umbilical hernia as well as the groin hernia. This is a hernia located beneath the belly button. The abdominal muscels are not strong and when he bears down to poop or sneeze or cry, the muscels pop out. There is no need for reconstructive surgery for the umbilical hernia. He will simply have an 'outtie' belly button. Few preemies do out grow the umbilical hernias and go on to have an 'innie' however, this is not likely in their case. Nolan will have to have surgery on his groin hernia. The minimum weight requirement for the hernia surgery is 4.4lbs. Nolan did have his second eye exam today to make sure that there are no issues with his retinas detaching from his eyes due to the extended use of oxygen. Preemie babys routinely get eye exams to try and prevent the eye troubles.

Otherwise, Nolan is doing well! :)

Logan still has the Rhino Virus. I am still pretty upset about this. I do realize it is just a cold however, he should never have contracted it. Had proper protocal been followed I strongly feel as though he would not be sick. I have not held my little love bug in 2 weeks. I hate that! I miss him. Looking at him through the isolette just isn't the same. I mean, I would take that over nothing at all of course but, I just want to be able to hold my baby.

He is currently weighing in at 3lbs 12.7oz. Logan is also very edematous. All of his fluid is being stored in his legs and scrotal area as well. He was having the same swelling issues as his brother however, his swelling became evident about a week or so prior to Nolan's. With that, he has been getting an increased dosage of the Lasiks for a longer period of time than Nolan. This accounts for the weight difference between the two. Although, even with the fluid issues, the boys are still neck and neck when it comes to their weights! They are so tough! Logan is feeding at 29mL of formula (Nolan is at 20mL). Full feeds are rapidly approaching! The boys will reach full feeds (for their weight class) at 31mL.

Logan is also doing well with a pacifier. He doesn't seem to take the paci as frequently as Nolan but, when he is upset or sleepy, and during a feed he will. Nolan is just content with it always in his mouth. Im predicting he will be the chubster! Im ok with that though. Logan is going to also have his very first shot at bottle feeding on Monday! I am so thrilled and nervous and just excited all at the same time! I just want it to be Monday! Who every thought I (of all people) would say that! :) In adition to Logan's dependant edema, he also has an umbilical hernia and a scrotal hernia. Logan's hernia has descended lower into the scrotum than Nolan's has. This doesn't necessarily cause a problem rather just confirms that he too will need surgery to correct the hernia and tighten up the pelvic muscles. In the case of both boys' hernias, they are still soft and able to be pushed or 'masaged' back up into where they belong. This is only a temporary fix. The next time they bare down or tense up, the hernia pops back out. The real cause for hernia concern is when the hernia becomes hard, or tight, and the color of the surounding area becomes dark. Again, a minimum weight of 4.4lbs must be reached before considering hernia repair. The other thing that will be considered before the surgery is their respiratory status.

If they are struggling with their respiratory rate and if they had a hard time weaning off of the vents (they were pretty much right on track with their weans) the surgery may be postponed. Reason being, that it is not always a good idea to reintabate a baby that has been off of the vent for an extended period of time. Quite often, it is difficult to extabate the baby following surgery. If the baby is extabated post-op, often times, he/she ends up right back on the vent for what ever reason. I hate the vent and would prefer if at all possible to never see it again! Those were some of the scariest days for us in the beginning. We'll see. The docs aren't even seriously discussing the surgery yet, it is just something for us to keep in the back of our minds.

Jeremy and I went to visit the boys this evening. Logan gets hands on care at 6pm. Jeremy has not had the opportunity to change him in a few days or so. He decided tonight was his turn, fine by me! :) Jeremy gets a little nervous because he is so big and the babies are still so small (even though they look like giants to us!). He did an excellent job removing Logan's dirty diaper and cleaning up his bottom and private area. He got him undressed and ready to be weighed. Right before we were going to put him on the scale, Jeremy was checking to see how tight Logan's tummy was. He put his thumb on one side and pointer finger on the other and just gave a small squeeze to check. That was all it took! Logan pooped everywhere! That poor isolette was a mess! I couldn't help but to laugh as I got wipes and soap and such for Jeremy to clean him back up again. Eventually we will get a handle on the diaper and bath process! Last night when I was changing Logan as well, he stuck his foot right in the poop. I cleaned it off and what happens?! Somehow, don't ask but, I sat him it it! I think I went through like 3 diapers last night for the one change! Sheesh! We're still rookies. We'll get it! :)

"With this ring, I thee wed"

Sicking with our family motto: "The best things in life are unplanned", Jeremy and I decided to elope on Friday January 7th!

We do realize that our decision to get married the way we did may not have been the popular choice however, we did what we felt was best for our new family.

I have to admit, while it wasn't the way I ever imagined I would be married, it was definitely memorable, quaint, sweet, and, cheesey all rolled into one!

We were married by a Reverend I found online. She welcomed us into her condo located 45 minutes away from the town we live in. She greeted us at the door while announcing she had just finished shoveling her drive. She directed us up the stairs and around the corner into her living room. She took our coats and we were seated on the couch. She discussed the flow of the ceremony and told us how she would prompt us for our speaking parts in the ceremony. It was exactly like any other ceremony but, with only us and her, and it was in her living room. She had a small corner of her living room lighlty decorated with a wedding arch and some flowers. It was sweet. She was the nicest lady we had ever met. Jeremy and I were both skeptical at first and expected to (quite frankly) be mugged and potentially murdered while we were there but, Rev. Lynn really made us feel comfortable and at home. She laughed and joked with us before and after the ceremony and throughly answered all of our questions before anything was done.

Regardless of how we got married and who was or wasn't there, I am just thrilled to bits to be married to the man of my dreams and the father our two sweet precious baby boys!

Speaking of the boys, they are doing wonderful!

The boys continue to grow. Nolan is 3lbs 8oz and Logan is 3lbs 9oz. Currently we are stuck in this waiting game of sleeping, eating, and growing. This is the slowest part of our experience so far. I find it a little frustrating that "all we can do is wait". I am just getting antsy. We both are. We want our babies home with us. We want them well and strong but, we want to fast forward to "going home day!" It is so close we can taste it and so far away that it sucks! I just feel as though I am losing momentum and am starting to get more aggravated with small things that are happening with the boys. Like this cold of Logans, I am absolutely livid that he is still sick. I am not sick, Jeremy is not sick, no one in our home is sick. Our dog isn't even sick! You mean to tell me that a baby in the same nursery as him gets sick, he catches it and is stuck in isolation. This baby that started the sickness....he got to go home two days after the sickness was discovered! Where is the fairness in that?! Why is that baby allowed to give Logan his germs (I know this thought process is not entirely rational but, I am allowed to be irrational every now and then!) and make him sick and not be able to be held by his Mommy and Daddy and then HE gets to go home with his family?! UNFAIR! I have voiced my frustration (to no avail) over and over with Logan's primary nurses. I am just over the NICU experience. Not that it has been bad. We have acutally been very lucky that they have done so well. I think because of how well they have done thus far is actually why we were getting so antsy and frustrated that they are still there.

The boys are 33 weeks as of yesterday and will be 8 weeks this Saturday! I can hardly believe it has been nearly 2 months since giving birth and welcoming them into this crazy beautiful life! With this age comes BOTTLE FEEDING! We have been working on introducing a pacifier to the boys. Using the pacifier during a feed is supposed to help the baby associate a full tummy with sucking. The more you suck the fuller the tummy-sorta. Preemies typically start nippling anywhere between 32-34 weeks. Hopefully this week we can give it a shot. Im just ready for something new. Something to wake me up and get me out of this funk I seem to have slipped into! I just want to actively see the boys advancing towards coming home. The waiting game is not my cup of tea!

Here is a picture of Nolan during a feed trying to get him to take his paci. He actually did a very good job with it. I think he will catch on faster than Logan with this.

Mommy gets a Gold Medal in Slacking!

Yes, I have fallen way behind. Tomorrow will be one month since I have posted a blog on the boys. They have, overall, been doing very well. The holidays were very hectic for us. It was nice to have something to help take away some of the stress of the babes though. It seemed like every day was go go go here at our house. I grew up in NC and we had some of our old NC friends come up to visit. It was nice to see them and to be able to spend some time in between hospital trips with them. We baked all of our Christmas candies and cookies and I bought Christmas Cards. I had every intention of taking the time to write out these Christmas Cards and send them to our dear friends however, I failed miserably! The cards are still sitting on the credenza in the dinning room waiting to even be removed from their shopping bag. Maybe next year! :)

Enough about us....now for what you have ALL been waiting for!

Nolan and Logan are both growing like weeds! While Jeremy and I both wish that they would have stayed inside and cooked a little while longer, it is very neat to be able to see them reach developmental milestones that we otherwise would have taken for granted had I still been pregnant.

Nolan is currently up to 2lbs 15.8oz (he was weighed most recently on Jan 2nd). I was really hoping that he would break three pounds. I am still proud of how much he is gaining. He is currently receiving 10mL of formula every 3 hours. His feeds have been increased at a significantly slower rate than his brothers. I am not quite sure why but, he is tollerating them well so, I do not push the issue. Even with the vast difference between the boys' feeds Nolan has been keeping right up with Logan's weight gain. Nolan was EXTABATED (taken off of the ventilator) and put on a CPap machine. That was a wonderful Christmas present. He has since moved from the CPap and onto a Nasal Cannula! He is getting 30% oxygen to the cannula and 30% oxygen to his isolette. He is getting the oxygen to the isolette so that if the cannula slips out of a nostril, he has "back up o2". I think the worst thing that has happened with Nolan since my last post was that they had to replace his picc line (IV). The site was just starting to get red from having the line in for so long that they needed to move it. The night they pulled the original picc, the docs got called for an emergency and the nurses just had to put a normal IV in until the docs could get a chance to redo the picc line. Eventually they ended up having to put the picc line in the scalp because they were unable to locate an ideal vein aside from the one in his scalp. It doesn't appear to be the most pleasant thing but, I guess the docs really prefer to have the picc line in the head. This way it is out of the way and clear of tiny hands picking and pulling at the picc.

Logan is currently up to 3lbs 1.4oz (as of Jan 2nd). He is getting 20mL of formula every 3 hours. Because he is getting so much formula through his ng (feeding) tube, they put the formula on a pump (just like they do medicine) and slowly release the feed over the course of 25-30 minutes. He has also been tollerating his feeds well. The only problem is about 30 min after a feed, he starts to drop his heart rate (bradycardiac or brady) and his o2 (this is also known as desaturation/desaturating/desating). The nurses are starting to think that he may be refluxing during these episodes however, it is still difficult to tell for sure if a baby has reflux  while on the ng (feeding) tube because the tube prohibits the baby from really spitting up. Refulx is common in premature infants as their asophagus is not completely formed. Two days ago when I went in to visit the boys, we discovered that Logan has extreme swelling of his scrotal area. His penis and scrotum are extremely swollen. This is caused by storing fluid in open spaces as opposed to peeing it out. Logan lays at an angle with his head up and feet down. This causes the fluids to pour into his feet and legs. His poor little feet look like fat pads. As Logan's feeds are increased he will get a type of protein (through the formula) that he was not getting enough of before (in his fluids) and this should help to decrease the amount of fluids that he is retaining. The doc also decided to put Logan on lasiks in addition to his normal dihretic. The lasiks will be given every other day. He will be monitored and the dose may be changed according to his body's response. Logan just tested positive today for the Rhino Virus (aka: The Common Cold in adults). He contracted RV  from another baby in their nursery. The baby that was first discovered to have RV was in a basinette setting and all babies in the room were unknowingly exposed to the sickness. Thirty-six hours after swabbing all of the babies in the nursery, everyone, including Logan, was cleared of RV. Now, several days later, I get a phone call telling me that Logan's results FINALLY came back and he has RV. They do not treat for RV with antibiotics or meds. The virus runs its course (7-10 days) and leaves the body. They will check in one week to see if the virus has cleared. I am under the impression that they will swab him once a week until the virus is dead. This frustrates me because Jeremy and I were under the impression that everyone in the room was clear of the virus. The sick baby was placed in an isolette in isolation. Last night the nurse gave us the OK to hold the boys. Jeremy was holding Logan and I had Nolan. About an hour into our time with the boys, we decided to switch. I held Logan and Jeremy held Nolan. Now finding out that Logan was/is sick, we exposed Nolan to RV. Nolan has to now be watched to make sure he does not develop any symptoms or the sickness. Something so simple as the CC is so scray with barely 3lb babes. I am frustrated because someone jumped the gun and prematurely cleared everyone of the virus. While discussing this with the doctor today, I learned that infact, Logan's results were still in "process" and were not determined until late last night. Had this situation been handled appropriately and Logan's resutls not been prematurely announced, he may not be sick now. I just feel as though, especially if Nolan gets RV, this is something that could have and should have been prevented.

It was determined a couple of days ago that both of the babies have hernias. Hernias are common in premature babies because their under developed pelvic muscles are so thin that the intestines can easily slip through them if they push too hard to poop or cry or just even stretch. Any intense straining they do can cause a hernia. The good news is that both of the boys have hernias that can gently be pushed back in to place (and just as easily pop back out). This is a sign that they will simply out grow the hernia. In the event that they do not out grow the hernia, surgery will be discussed. We are hopeful that they will out grow them and the discussion will not happen! :)

The boys continue to grow and thrive in the NICU. We have experienced little to no set backs and are hopeful that we continue to move forward and closer to home! :D We are now 46 days closer to having our little men home!! :D It has been pretty rough on both Daddy and Mommy especially with the holidays coming and going. We continue to hang in there and have high hopes!



I will leave you with some updated pictures of our handsome heart breakers!




Logan

Nolan

Logan

Nolan

Logan

Nolan



Daddy and Nolan with Mommy and Logan in our first family picture!!