Sunday, July 26, 2009

Borrowed Time

This week was our the boys original due date. Its so hard to believe but really the last 12 weeks that they have been here with us have been borrowed time. We would have never in a million years wished for quite this kind of time but for whatever reasons that they needed to be born so early, we are so grateful for every moment we’ve gotten to look at them, get to know them, hold them, love them three months sooner than we would have otherwise.

Now that we are past this date, the boys are now being referred to by their adjusted age (how many days old they are since their original birth date). I guess that means that they are officially newborns!!! And as such, they are doing pretty typical newborn things this week.

I am overjoyed to say that BOTH boys have been practicing taking feedings from a bottle this week. They started out at 5cc’s each feeding and now are trying 10-15cc’s each time, while the tube feedings give them the rest of the nourishment they need. The boys are figuring out how to eat and breathe at the same time which I’ll tell you has been no easy feat but nonetheless they are forging ahead. I think part of the issue might be that they are just not feeling hungry since they are continuously being fed by the tube. They can’t associate the bottle yet with relieving hunger, because they don’t yet feel hunger but luckily they still play along.

I have to admit that for some reason doing this bottle thing has made me come a little unglued. I know we are closer than ever to getting home, yet still feels so far away. After three months, I am just sooo ready to be done with hospital life and just bring my babies home that I want to just hurry this part up in the worst way and sprint to the finish line. I don’t want to just walk this road anymore, I want to fly. I don’t want to hear that it will just take time, just be patient. Unfortunately my patience has up and left me some time ago and has left no forwarding address.

No one has dared mention how long this part “usually” takes since every baby is so different. The best we can guess is maybe another month before discharge but thats just an unofficial estimate suggested by a couple of nurses after I’ve begged for them to throw a possible rope out there for me to hang onto. I am reminded that it could be more or less time depending on many factors, that basically its just too early to guess right now.  I know, I know what you’re thinking: we’ve done three months time already, what is another month? I can’t explain it, it seems the closer we get, the more impatient I become.

The biggest factor ofcourse is getting them to take full feedings from bottles only and to come off the feeding tubes. Full feedings based on their current weight would be about 45-55 cc’s each feeding (this amount will increase as they keep growing). The other criteria as we get closer to any sort of discharge plan includes taking full feedings under 30 minutes, not losing weight, and not having any drops in heart rate or oxygen level that they can’t self correct for seven days. If they have any “events” than the seven day clock starts over again.  Right now the boys consistently need their oxygen levels turned up at almost every feeding while they learn to eat so we are quite a ways from here. They have also been dropping their heart rates which they haven’t done in quite awhile but I’m told this could be from reflux. I’m not quite sure yet if this is something that they will end up outgrowing or if we need to look at different medicines.

They also both need to either A.) be off the oxygen completely or B.) have their eyes be become fully matured. Right now they both have eye disease (retinopathy- stage one). This is very common with preemies and basically results from being out in the world and all their energy going towards breathing and fighting infection, etc. instead of being in the womb the last trimester where their retinas would have had a chance to mature. The problem with using extra oxygen is that it interferes with this very process and has to be monitored closely in the hospital until the retinas have finally matured.  Again, because the boys required so much oxygen for a long length of time, no one is certain when their eyes will be fully matured so we just need again, to be patient. The boys get eye exams every 1-2 weeks to assess but there haven’t been any changes in the last month.

I know I should just live in the moment and be thankful for how far they’ve come, stop looking too far ahead because it serves little benefit and usually causes much more stress, but its so hard to stop myself. I just want to bring my babies home already (did I mention that?) Somehow I have convinced myself that if I keep looking  two steps ahead, I can figure out what things might be around the corner so I can prepare myself and maybe even problem solve everything before its even happened. The logical part of my brain says that life doesn’t work this way and it will always be the thing you didn’t even think of and then you wasted all this time and energy for nothing. The bigger part of me is just desperate to have some control over my life again. I mention this to a dear friend of mine, and she just hugs me and says “welcome to motherhood Holl”.



First bottle, and this is what 5cc’s looks like. Pace yourselves boys.


Nurse feeding Alex first bottle


Daddy feeding Nicholas the first time. (we have to feed him on his side due to reflux).


One of our favorite nurses always goes the extra mile. Its a hassle to organize all the wires and monitors to stretch so we can hold both boys at once, but this weekend was a brighter one because of her!!!!!



This one needs no caption, just priceless!!!!!!!!!

Alex on left, Nicholas on right.



matt said...

Oh my, how I remember those days. I remember powering though those first 5 months of Annabelle's life with all the surgeries and whatnot. I finally felt like we were out of the woods and then the ortho doc told me she would probably have leg braces indefinitely. For some reason, I was unaware of this and I completely came unglued when I got home. It's so hard when you think you are at the finish line only to discover that the line has been moved another mile down the road. Hang in there you guys! You are doing great!

Anonymous said...

I am so touched by your blog, I was crying tears of sadness and of joy. Sadness because you will be tested beyond your limits, joy because you will come out triumphant in the end. I know it feels that those days will never end...but believe me they will. Your babies will give you so much joy. Your baby will make you laugh,smile,giggle - something that the medical community will forget to tell you... You are awesome for putting this blog!

Pam said...

Feeding is the most frustrating part! Our neo told us that early on, and I don't think I really believed her until we got to that point. Now Johnny's up to 75cc at 5 mos. (6 wks. adjusted); your little ones will be there before too long.

Hang in there!


P.S.~Eventually they may let you try to thicken the feedings w/ rice cereal to help w/ the reflux. We tried Enfamil A.R. first, but I don't think it worked as well. I just add 1 tbsp. of rice cereal to John's bottle, and his reflux is tons better. (We also have to feed him on his right side, b/c of his paralyzed vocal chord.) He's also taking a small amount (.5 mL) of Lansoprazole as an antacid, but we're weaning him off that little by little (down from 1.5 mL).