Open Crib, here I come!

We were so excited to find out this afternoon that JD was moved out of his isolete into an open crib today!!! It is the same as the regular bassinets that full term babies go into when they are born - very exciting day for us all! JD has been working on keeping his body temperature up for a few days and he did well with it so they have moved him out of "the box". It's so awesome to be able to look at him up close and personal when I walk in and not have to look through the glass. We hope that Cole will be a week or so behind him; he has a bit more weight to gain before he'll be able to move out of his little house. They usually like the babies to be about 1500 grams before they can move - he's at about 1110 right now so within a week to 10 days, he should be there. Maybe a bit sooner if he's feeling really ambitious!

The sleep study results came back this weekend. I don't know why they called it a sleep study because it had nothing to do with monitoring their sleep; but anyway, JD has severe reflux, which we already knew. Luckily it doesn't appear that he has acid reflux though, so that is a plus. It just means that he is not having acid sitting in his esophagus as he reflux's. He has an appointment with an ENT doc tomorrow so it will be interesting to see what he has to say. They are going to take a look at his throat and belly from the inside (apparently not too painful and very quick as they just put a tiny scope down to look around). Cole's results were actually a bit better than JD's - they said that he does not have reflux too bad and many of his apnea episodes are due to prematurity. In other words, he will grow out of it and get better as he gets bigger. We were very happy to hear this, especially because we thought he was worse off with the reflux than JD was. Their apnea and brady episodes have gotten a lot better over the last few days so I think with their growth and the meds, they are doing MUCH better.

Both C. and I got to hold the boys for a while today - they were doing great. They stay awake so much longer now when we are there and definitely recognize our voices. Both are really doing well with their pacifiers so we're hopeful that bottle feeds are not too far off at this point. But until the reflux is under control, they will stay on the continuous feeds through the feeding tube.

Not much else to report tonight ~ all in all, they had a very good weekend. We are so thankful for every day that goes by that they are doing so well. We couldn't ask for anything more. Here are a few photos from tonights visit. It's nice to be able to take pictures of JD without having to look through the glass! We took a few with Daddy's hand in the photo so you can get some perspective on how small they still are. JD is weighing in at about 3lb, 3 oz and Cole is about 2lb, 7.5 oz. They are really starting to pork up!

JD





COLE

A few updated pics...

Thought I would post a few updated pictures; not much to report. Lots of feeding, growing and pooping. Headed back to the hospital for our night visit so short on time. I'll post a detailed update tomorrow!

The first two are of JD and the last one is of Cole. Excuse the tape on his face and his nasal tube - underneath, he's cute as a button!

Another day down...

We'll chalk this day up as another uneventful day so far (not a bad thing). The boys were resting very peacefully today while I was there - they were in the midst of their sleep study which is being done from 12pm to 12am tonight. When I arrived, they were all hooked up with a rats nest of wires in their isoletes from all of the probes and monitoring devices. They were not in any discomfort, which is great. In fact, they probably didn't even know that anything was different. Sadly, I didn't get to hold them at all today which is a first in MANY weeks. I've been so spoiled. That makes it all the more fun tomorrow when I get to have them out!!!

Cole gained another 50 grams last night (almost 2 whole ounces) so I think he's got the hang of this "growing" thing. Both boys are so happy and content most of the time - and today they got a lot of good rest so that should do them both right.

I'm off to my NICU parents support group tonight - I'm not a big support group gal but the NICU social worker has worked hard to put this together so I'm going to give it a try. Can't hurt. Until tomorrow - thanks for the continued prayers. You guys are getting us through this!!!

To my IF sisters...

I just wanted to give a quick shout out to my IF sisters - you guys know who you are. I was thinking about ALL of you today and hoping that you are all still full of hope and positive energy - wherever you might be in your journey's. I know that we had a good run in early spring with some pregnancies - and understanding how nerve wracking pregnancy can be for those who have had losses or struggled, hats of to you guys for hanging in there. All reports sound good thus far so keep the faith!

And for those of you who are still in the midst of cycling or dealing with failed cycles or losses, you are never far from my thoughts. Stay strong, courageous and hopeful. It's a tough road and in some ways, it doesn't get easier; but the reward at the end is worth every second. People always told me that and when you are in the midst of struggle, hardship, frustration and sadness, it's hard to imagine. Keep your chins up and keep fighting the good fight. Dig deep - you've got it in you!

Sending hugs and HOPE out to all of you - you're always in my prayers!

My Very Wanted Child

Someone sent this to me a long time ago and I saved it, hoping to be able to read it one day and pass it along to my own child(ren). Here we are - and although they are not quite home yet, they have arrived on earth. I wanted to post it for all of you other Mom's. It's a keeper!

My Very Wanted Child
A Parents Poem

My Hearts all a-flutter
My thoughts are running wild

For with you I now have
My very wanted child.

Someday you will ask me if I wanted you true,
And I’ll smile and I’ll think, “If you only knew!”

In so many ways, I’ve wanted you here,
Long before you came to me I held you so dear.

There was a place in my heart just waiting for you,
I kept it wide open just waiting for you.

And now you are here, home with me at last,
My waiting for you is a thing of the past.

Together we will laugh, together we will play,
Together we will cherish each and every day.

Some days may seem long, some nights even longer,
But with each day I spend with you my love will grow stronger.

Although waiting for you dear, did not make me love you more,
It also did not stop me, my dreams of you endured.

I need not ask for anything, my world is now complete,
My life is full, my hearts content, since you and I did meet.

My hearts all a-flutter,
My thoughts are running wild.

For with you I now have
My very wanted Child.

- Ginny Lapporte

Look guys, I've got new duds!

What a day!



You can imagine our surprise when we walked into NICU this afternoon and found JD with clothes on!!! You can barely see his outfit in the picture above but he's really dressed! They are working on getting him to keep up his own body temperature now so he can get out of the isolete into an open crib. It will take a week or so but he's getting close. His latest weight was 2lb, 15.8 oz last night so he's probably going to break THREE pounds tonight. Cole gained a good amount of weight last night too and he's up to about 2lb, 3.5 oz! They are weaning Cole off of his oxygen slowly now, which is wonderful. And they upped both of their feedings today about 1cc per feed. It's all good!

The eye exams went great today - brave Daddy pulled through again and stayed with the boys during their exams. Mommy wimped out and waited in the hall. They did well though (aside from showing how great thier crying lungs are) and everything looked normal for them both. They will have a follow up exam in 3 weeks but they were right on track for their age.

Sometime tomorrow they are starting a sleep study on the boys since they are still having a fair amount of A's & B's; they want to find out if the cause is reflux, prematurity or a combo of both. This will make it easier for them to know what to treat more aggressively. They aren't sure whether to up their caffeine or to up their reflux meds. I love that they are being so proactive so that they know exactly what to treat! The study entails putting a probe down their throat, adjacent to the feeding tube, which will monitor what is going on inside their little bodies. It's a 12 hour study so after the 12 hours are up, they pick up the probes, along with the nurses notes and data on thier chartable episodes of apnea and Brady's and then make an analysis and make recommendations. I think it's a wonderful idea and it's not too uncomfortable for them while it's going on. We're anxious to get the results back, of course.

That's about it for today; all in all, a GREAT day so far for the boys. Cole and I had a long kangaroo session today (over 2 hours) so it gave me plenty of time to chat with him and keep rooting him on. He's so alert now - he's really making progress. Here are a few new pictures of the little guys from today;

COLE


JD

Cole ate his wheaties!

Morning report was that Cole gained 40 grams last night! That is over an ounce. Hopefully things are starting to click for him and he's on the right track. I can't wait to see him this morning, an ounce makes a big difference these days!

More updates later; wish us luck on the eye exam later today. I'll post more tonight.

P.S. Debbie K, if you read this, will you resend me your phone number? Thought I had it and can't find it! Can't wait to chat in person and catch up on some of this stuff. Hope Sophie and Sally are doing well!

Confessions and Thanks

It's high time that I get out of this funk and start rallying again. This day has dragged on for what seems like forever, as I was in a quandary all day long. The last few days have taken a toll on me and as I cried periodically throughout the day, I was suddenly yanked back into reality and quickly remembered how much we have to be thankful for. C has been in a funk the last few days too (he adamantly denies it), so it must be in the air here. Afterall, this is the 4 week birthday of my precious little angels! What more could I ask for?

As I sit and reflect on what has got my goat, I come up with nothing that really warrants being so irritable. In recounting the day, I remember my morning drive to the hospital today when the sun was coming up in the cool brisk fall air. I was smiling as I drove out because I was excited to see the boys on their 4 week birthday. I was also trying to appreciate my independence and freedom that has returned since being sent home from the hospital almost 4 weeks ago. What I would have given back in July to wake up in the morning and drive my car out on a nice sunny morning.

I got to the hospital and something snapped - maybe it's the monotony? Maybe it's the fact that my patience are running thin and I want my babies to come home? Maybe it's the realization that I've made over 90 trips to the hospital since the day I was released? Maybe it's the fact that we have several weeks to go before they get to come home with us? And maybe, just maybe, it's those hormones wreaking havoc on my well being? Who knows. But I'm back on track now. Enough of that PO'd attitude. That won't get me anywhere, will it?

Shame on me. We are so lucky. I was reminded by a dear friend of where we were a year ago. I had just lost my 3rd pregnancy. I was pretty hopeless. And now look at us - we're parents. Although the babies aren't home yet, we're a family. We spend time together and look forward to family times. We are advocates for our kids and our priorities are different. My heart overflows with love for these boys - all day long. I can't get enough of them.

Our visit tonight was quick - both boys were doing well and resting peacefully. They had a good day today; I'm starting to think that some of the recent changes that have been made are taking effect. The new meds are hopefully making their lives a little bit easier. I had quite a pep talk with Cole today so hopefully he's going to gain some "grams" tonight. Ounces would be better - but we'll take what we can get. He's so feisty - it's amazing. He's just not gaining weight like we would like to see. It kind of makes me laugh because he's so feisty that he's burning all of his calories being so "busy". He turned himself over today - from his back to his belly. I watched him work on it for about 10 minutes and he did it. Who would have thought that a little 2 pounder could flip himself over? He's completely amazing!

So we press on and continue to dig deep for those patience. Thanksgiving is our goal for homecoming for the boys - I cannot imagine a better Thanksgiving gift; to spend Thanksgiving 2006 with our new little family would be the best gift we could ever have...it would be the most memorable Turkey Day ever. Come on boys, "I think you can!".

They are acting very "Twinny"

That was today's quote by the head nurse; "Twinny" is not always a bad thing ~ but I think we're in trouble when they get older! It's amazing how much these two boys act alike. What one does, the other does - maybe not at the same time, but they have the same ailments, issues and habits already!

Mommy was a bit stressed today during the visits - we had a lot going on today for both of them. Cole's crit levels were low this morning so they gave him another blood transfusion. Part I at 8am and then part II at 2pm. He looks great after getting the blood and much more pink and healthy than before he was transfused. It will make him feel much better and more energetic for sure.

As for JD, they cultured his nasal secretions that they have been suctioning due to his reflux and found some bacteria that they are going to treat immediately. The treatment for this is a nebulizer done in the form of a breathing treatment. The moist air is blown near their face and the antibiotic and medicated air clears out their nasal cavity. Both boys are being treated with this now, every 8 hours, to help clear out their sinuses. With the reflux taking their digestive stuff into their respiratory system, they were bound to start an infection if they weren't treated.

Both boys are now on continuous feeds to help with the reflux. I have seen an improvement actually so that is a good thing. It will be interesting to see how they go about weaning them off of the continuous feeds - hopefully by that time their little systems will be better developed and the reflux will be better (or gone!).

Cole started sucking on his pacifier today - which is GREAT news! He loves it! He's definitely got the hang of it. What a milestone for him right at 32 weeks! YAY for Cole! Although he hasn't gained too much weight yet, he's definitely looking different and filling out that skin of his. His cheeks are even starting to get a little plump. He's looking rather cute I might add; and I know I'm biased.

I got to hold JD for a little while today; and hope to hold Cole tonight. We're going to have to refrain from holding them at the same time for the next few days in case they are passing this bacteria back and forth. Usually when I kangaroo them both, they are face to face and sneezing and hacking on each other. Until they are cleared up, I'll have to kangaroo them separately. I don't mind, but really enjoy having them both together so that they can get reacquainted with each other. I guess we have plenty of time for that later right?

Their eye exams are scheduled for tomorrow or Thursday so wish us luck. Apparently it's a very quick procedure to check their eyes so I hope that they are cooperative and pass with flying colors!

Almost 32 Weeks Gestation - 4 weeks old!

Tomorrow marks the boys 32 week gestational age (they call that "corrected age"; and Tuesday marks their 4 week old birthday. They have had another good week overall; this week there will be some more milestones so we continue to keep our fingers crossed for another good week.

They started both kids on Iron today; and they went ahead with their reflux medicine change to Prevacid. There might be a day or two in between while the meds change that their reflux gets aggravated so we're hoping for an easy transition. Both will also start on EPO shots this week (3 x's per week) which helps to increase the red blood cells that are manufactured in their bone marrow. This is another routine treatment for preemies. Cole's feedings have been stretched a bit further to help his reflux so he is now on a continuous feed. He is fed over the course of 11 hours at a time, with one hour off before the next round. That means he's eating for 22 hours of the day! They were thinking that having a less full belly might help his digestive system adjust a bit better to keep the reflux under control.

JD is getting better and better with his pacifier so they were talking today about maybe giving him a try at the bottle in the next week or so. They will gradually introduce the bottle - they will only give him a little bit of food via bottle and the rest will be given through his OG tube until he gets the whole suck/swallow thing down. It will take some time for them both to adjust to bottle feeds where they can take a full feeding in a reasonable amount of time (without falling asleep or refluxing it all back up!). They keep the OG tubes in for a while, even while bottle feeding, just to be sure that they are getting adequate nutrition. Both boys will have their first eye exam this week which is something I don't really want to be present for. Apparently it is much like an adult eye exam so it is a bit uncomfortable for the babies. The nurses say that the eye doc that does the exams is very quick with the babies so that is a good thing. This is another routine thing for preemies - many times preemies can have eye/retina damage due to the oxygen levels that they experience when they are first intubated at birth. We're keeping our fingers crossed for a good eye exam for both of them.

Our routine is getting a little easier now - I'm usually at the hospital three times a day still; I can't seem to stay away. I go at 8am, then again at 11am or 2pm, and then C. and I go up at 8pm to say goodnight. My daytime visit is my favorite since that is when I get to hold them. Often times I am alone for that visit so it's great to spend time with the boys and read to them or just chit chat. It's pretty quiet around the NICU during the day so it's less chaotic than early am or evening;

We have a new roommate in our room - a 35 week old baby boy who also has a bit of reflux so we're now the "reflux boys". His family is awesome - and we are enjoying meeting some of the parents who frequent NICU like we do. There's a strange comfort in knowing that these parents are experiencing much of the same thing that we are. Everyone is so kind and caring that we have met.

Onward to another week; every day is a bit closer to their homecoming. I know I say this with every post but I can't help but thank everyone again for all of their thoughts, support, prayers and well wishes. Everyone has been amazing and we cannot thank you enough for being there for us. Many thanks and love to all.