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! :)