Tuesday, March 31, 2009

New Pictures Posted

Just posted-The latest pics.


A new start

Well well well. It seems like soooooo much has happened in the past couple weeks. I don't even know where to begin.
Last night was what has become my favorite time. Bath night.....
Up until now, "bath" has meant whipping them down with wet, soapy gauze patches, so I can't say that I was ever really excited about it; unlike Kim. So last Friday was bath night; I wasn't really interested in doing the bath thing until Janice told us that she'd be doing a tub bath. "Hmmmmm this might be fun" I thought. Little did I know.... For our first real bath, Kim bathed Jenna, & I gave Blake a bath. I have to admit that it was way way more than I would have imagined. Not only was it fun, but it was the first time I really really felt like a dad, doing dad things. Sure, I've changed some diapers, but that's not really all that fun or interesting. To make things easier and more enjoyable for us, the kids behaved wonderfully. They hardly made a peep and cooperated the entire time. Dare I say, they may have even enjoyed it. :)
Sooooo as you can imagine, both of us really looked forward to last nights bath time. This time we switched off and I gave Jenna her bath while Kim cleaned Blake up. Again, both of them were wonderful and quite peaceful.

After the bath, we got them dried off and dressed in their lil outfits. Then swaddled and settled in for the evening. After Jenna got snuggled in and settled, she let out this loud cry. Her passie had fallen out and she was NOT happy. She did that the other day too. As soon as we put it back in her mouth, she was happy and off to sleep.
Several of the nurses have commented on how laid back & chill they are. They hardly even make any fuss and in general are very easy to care for. We've only heard them cry a few times. Hopefully that will be a personality trait that sticks with them. How awesome would that be?
I've always assumed that I would have collickie babies as punishment for my past transgressions. ;)

When we got home and sat down for our nightly relax and talk time, Kim informed me that Janice had called and told her that we were moving to the feed & grow section and into bay 7. WOW, that really caught me off guard. It seemed like just last week we were worried about Blake keeping his vision, and now they are in the "feed & grow" stage. When we first took the NICU orientation (while Kim was on bed rest), it was explained to us that Bay 1-3 were for the "sicker" babies and that is where we'd be if we delivered way early. Bay 5-7 were for the ones that were pretty healthy and were close to going home. Going off that description, I figured we'd be in Bay 2 for a while longer. Although we knew we'd move eventually. In reality, it was somewhat surprising that we hadn't moved earlier. We've seen soooo many kids come and go through Bay 2 in our 10 weeks there.
My initial reaction was kinda sad. Besides getting used to Bay 2, we were going to miss our nurses as well as the other nurses that are often in Bay 2; most of all, we'd miss our neighbors Trinity & Kinsley. Even though I don't really get to spend any time with them, and only catch a peek occasionaly, I've really grown fond of them. I imagine it's got a lot to do with the fact that when I gaze at them, I see Jenna & Blake perfectly clear. They look identical at that age & size, and they have embarked on a similar journey. Hopefully their path will be a little less difficult and have less setbacks. We are certainly hopeful and send prayers and thoughts their way.
But..... you can't stop our lil guys, and they are growing no matter what life throws at them. So, on to a new phase of the NICU experience. Here we come!

Monday, March 30, 2009

First Double Kangaroo Hold/Moving Day

Today I could hardly wait to get to the hospital. I was at home until about 3 trying to get this house in some kind of order. With Jason and I spending all of our time at the hospital, the dishes and laundry pile up real quick. And we all know that once you get behind it takes several hours to catch back up or days in our case. That and I am trying to knock one thing off of the "to do before babies come home" list each day. That and trying to find time to fit a work out in-I am sad to say that Jason and I have GAINED weight since right after I had the babies! UGGH!! NOT GOOD!!!All those quick fast food meals between hospital visits. Anyway...blah blah...on to the fun stuff.

I got to kangaroo hold both babies today. We had such a GREAT relaxing time. Jenna got settled in real quick and started high satting right away. She sat there looking at me, it was so cute! Then it was Blake's turn to join us. He settled in real quick too and seemed quite content. It was interesting finding enough area on my chest to hold them both but we got all snuggled in real close and enjoyed ourselves immensely. Then to top it off, Jason had made it in and joined us. We had a great time just looking at the little guys.

We then went to dinner and then home. We managed to get a little work out in as well. We went back to the hospital after a couple hours for our night visit. That and it was bath night so we definitely didn't want to miss it. Tonight, I bathed Blake and Jason bathed Jenna. When I turned Blake over to unwrap him and undress him for his bath, he continued to sleep. He didn't wake up until he was actually in the tub-haha. He did very well and seemed to like it again tonight. After we dried him and bundled him back up in bed, he was very alert. Relaxed but very curious. Jenna was good during her bath as well. She was pretty relaxed for most of it. We dressed her in her paisley preemie gown and hat. We put a little t-shirt under it to make sure she stays warm. She is quickly out growing it! Her hat is even a bit snug. Looks like I'll be retiring that one before too long. We had a great night with the kids tonight. Really wishing we could have them home with us!!!

On the way home, Janice called me to give me some news. The "twinkies" are moving bays. We will no longer be in bay 2. Thankfully, the twins are transitioning into the "feed and grow" part of their stay. While they are still needing to be watched closely, they are bigger and stronger now. This move means great things BUT we are in no means "in the clear" as far as possible set backs are concerned. We are still praying for continued strength and growth. That and that Blake's eye condition proves to need no additional surgeries. So.....with this move comes mixed emotions. As our nurses know, we have grown quite fond of bay 2. However, this does mean that we are one big step closer to being all together at home!! Our new home away from home is bay 7. It will be a strange and happy feeling not having to walk that long hallway down to bay 2 anymore. We always teased saying that we were the permanent fixture in bay 2 because we have seen many many babies come to bay two and leave for home or for the "feed and grow" bay but we were always the constant. Wow, to think we are actually the ones moving this time!!!!!

We had a good weekend

While we didn't spend as much time with the kids as we normally do, we still had a great weekend with them.
This is such a crazy situation. We usually spend the majority of our time at the hospital, so we don't really get much done around the house. Kim has made some great progress on the baby's room, but it's still not fully finished and ready for babies. Sooooo we end up feeling like we're slackin a bit and not really getting things done around the house. However, if we aren't at the hospital, then we feel like we're neglecting the kids. After 2 & 1/2 months, you'd think we'd have this down by now. Not so much..... In general, both of us understand and accept that the most important thing we can do is spend time with the kids, but it doesn't keep us from feeling like we should be getting more done. So, not only did we not spend a lot of time with them, we didn't really get much done either. Kim got the grocery shopping done as well as got some more material for some new bedding. She's really getting into the sewing thing and has been making some really cool stuff for the kids. We are going to keep some of it, but the bulk will be donated to the NICU when the kids finally graduate. :)

All in all, the babies had a good weekend. They both only had one A&B a piece this weekend. This weekend my father in law asked what A&B's are. So, here is an explanation in case you were wondering. Apnea= when they stop breathing for a period. This often happens when they are spending energy elsewhere (feeding, infection, etc) or just sleeping way way hard. , & Bradycardia= when their heart rate drops, which is often caused by similar things.

Haha Janice and Anna were not really happy with them moving back to their issolette's, so they made a concerted effort to remedy that situation. Fri night Janice worked on getting them all nice and warm, then when Anna tool over the next morning, she worked on stopping the vent above their crib from blowing on them. Must have been a funny sight as she enlisted the help of 3 other nurses to help her cover the vent with blankets. She said she was standing on one of the rolling chairs while 3 other nurses held it still. She was a little too short, so she had Kay help fix things. In the end, they were successful and it was quite a bit warmer in their little section of the world. She was then able to get them back into their crib all nice and happy. She said that both Jenna & Blake seemed happier next to each other. You nurses Rock!

Sun. Kim finished making them pink & blue cammo swaddle wraps & froggie covers. April is a big fan of the cammo, so we brought them up there while she was watching Blake. We knew she'd get a kick out of it, and since they've been paired up, April hasn't been able to watch her "lil Blakers".

And here are the stats:

Blake weighed in at 4lb 10oz, measured 16.5" long. He's now on bolus feeds (2hr on, 1hr off) & getting 42 cc's at each feeding.
Jenna weighed in at 4lb 8oz, measured 17.1" long. She's been on bolus feeds for several days (same 2 on, 1 off schedule) and getting 41cc's with each feed.
Both of them have been tolerating the bolus feeds well and haven't had much residual.

Wyanna just told me that both of them were rooting like crazy this morning and really really wanted some food or their paci. That's a great sign and hopefully that'll translate to easy bottle feeding. We are keeping our fingers crossed.

Time to get some work done. Jason has a project due this Friday, so I need to buckle down and get some work knocked out.

Sunday, March 29, 2009

Sunday, March 29th

Short report today.....

Blake and Jenna are sporting some new "duds". I sewed some pink camo and blue camo snuggle blankets for them. They look adorable! I will post the newest pics tomorrow. Jason and I had a great time rocking them and spending time together this afternoon. Jenna was so cute looking back and forth from one direction to the other while i was holding her. Blake was looking at daddy with a perplexed look on his face, as if he is trying to figure out what this big world is all about. They both had a good day. Apparently, Blake has been making sure that the nurses know he is still there. He has been heard, not crying, but giving out a little squeek or grunt here and there.

I'll post their new measurements and weights when I get them in the morning.

Saturday, March 28, 2009

Back Together Again

Jason and I were pleasantly surprised when we got to the hospital today. Jenna and Blake have played "musical beds" and are in the same crib again. Janice took some extra measures lastnight and bundled the kiddos up real well to help keep them warm and prepare them for a 2nd try at "co-cribbing". With the help of some of the other great nurses that were on today, Anna made some adjustments and moved Blake and Jenna into the crib again. She bundled them all up under a few layers of blankets and "fixed" a drafty air vent that is near their crib. Keep your fingers crossed....we are hoping they get to stay together for the rest of their NICU stay. We can't wait to see them interact with one another! It is so wonderful seeing them together.

MeMaw and PawPaw visited them today, This is the first time that they have seen them without CPAP. Blake and Jenna were both sleeping for the first half of our visit. PawPaw started talking to Jenna and she started looking around and smiled. Blake had to peek and see what was going on too. They said it was a lot of fun to watch.

Lastnight's visit was a lot of fun!! As we mentioned, it was bath night and Janice had offered to wait til we got there so that we could bathe them. They both had their first tub bath!! I bathed Jenna. I don't think she quite knew what to think about being halfway submerged in water. She seemed to be pretty relaxed for the most part though except for at one point she gave a little cry. Then once she was all clean, she decided it was time to go "potty". Good thing we had plenty of soap and warm water. She looked so cute sitting in the tub!

Then it was time for Blake's bath. Daddy almost passed on doing the honors but decided to go for it anyway. Turns out, he had a great time and was so glad he did. Blake had a pondering-like look on his face for most of his bath. He didn't cry and seemed to be enjoying it just fine. In fact there was one point where he was arching his back just enough to be laid back as if he were hanging out in a hot tub.

Having the privilege to do things while in the NICU that moms and dads do at home with their babies really really helps us. Jason and I know that one day, once we are at home, there will be a time that it seems like all we ever do is change diapers and give bath after bath but I can tell you that for now, it is the highlight of the week. (Ok, maybe not the changing of diapers as much as the bathing and holding).

Can't wait to see the cuties again!

Friday, March 27, 2009

"In Time Out"

Well, the little ones have been "misbehaving" lately......they have been sent back to their rooms.

Blake and Jenna have needed to be bundled up with lots of blankets to keep warm. They aren't quite maintaining their temperature like the doctors and nurses would like to see so they have been placed back into incubators. Once they start maintaining their temperature again and can do so consistently, they will be back in a crib together again. Maybe with the changes in feeding and with all the excitement lately, they just aren't able to quite get there and stay there at a good temp yet. Bottom line, we certainly don't want them to catch a cold or worse! So, back to "their rooms" for now. '

I forgot to add their weights....
Jenna 4lbs 6oz
Blake 4lbs 9 oz
Such chubby little ones-haha!

Just Like Daddy

Well, my suspicions were confirmed yesterday. Blake is a spitting image of Jason.

When Anna called yesterday to tell me Blake was being taken off of CPAP, it was such a wonderful surprise. What a range if emotions we've experienced in the last week! Like Jason mentioned, we weren't expecting it to happen for a few more days. Seems like Blake feels much better now that he has had a few days recovery after surgery and proved that he continued to be ready for the big switch over. He is doing VERY well. he seems to be very comfortable and quite vocal too. Not crying, just a little "eeh" here and there mixed with a little groan from time to time.

I couldn't wait to get to the hospital to see my little boy's precious face for the first time in it's entirety. When I walked into the hospital, I found myself walking pretty quickly as I thought about how exciting it was. I caught myself and slowed down thinking how much of a crazy woman I would appear if I began sprinting into the NICU. I didn't even take time to put my bag down once I got to the bay but went straight over to their crib. Overwhelmed, once again, except this time it was with great joy rather than great fear. I couldn't get over how much he looks like Jason. He has the cutest button nose and most curious little looks when he looks around. His cheeks are more than ready for some baby fat, haha. It is so wonderful to be able to look at my babies and not wish I could really see them due to tape and tubes. I can see their precious faces clearly now and I am head over heals all over again.

We had a great visit with them lastnight and couldn't keep our eyes off of them. Blake got his infamous hiccups again so that was pretty entertaining. He seems to get ticked off after a while and held his breath. Funny thing, they stopped after that. Jenna was very alert when I started holding her lastnight. She spent some time looking around and sucking on my pinky.

Tonight is bath night. Janice told us lastnight that she would hold off til we get there for baths. We are so lucky to have such great nurses that help to keep us involved. They all know that we are really enjoying as much parental duty time as possible. Janice called to tell us that she videoed Blake lastnight with our camera. She was changing Jenna when she heard this loud "smacking" sound. She looked over and Blake was smacking and sucking on his tubes, so she dropped his passie in. Quote: "He was Going To Town on that passie". So loud that one of the nurses working next to them could hear it. Soooo she had to get us some video. Can't wait to see it.

We are going out to dinner with some friends tonight so will visit the babies late. Guess they'll be getting a midnight bath. All the better to sleep well afterwards though!

Thursday, March 26, 2009

Pleasant Surprise for Blake

haha Right after I get done saying how awesome Anna is, she gives me a call with more good news. This time she let Dr. Su take some of the glory and put him on the phone to fill me in.

Blake has been doing sooooo good with all the changes, that he decided to try him on canula today!!!!! This came as quite a surprise as we were expecting that to happen some time this weekend or maybe even next week. But Dr. Su felt that he was doing really good and that he was ready for the change.

After they removed the CPAP and get him all settled in with canula, Anna sent us a couple pics. The best one is displayed here, & the other two are in the album Kim posted yesterday.

The news that he was moving to canula and the pics to prove it have really made both of our days. We are on cloud 9 at this moment. Amazing how the emotions have turned around in such a short time. Ahhhhhh life in the NICU.


Yay 34 weeks today!

Well, today marks 34weeks (gestation) for our twin miracles.....

Man, the past week has been so absolutely insane for us. It feels like it's been a year, and flown by in a minute, all at the same time.
Kim and I really really took the whole Rush disease, it's consequences, and the corrective surgery pretty hard. We've been talking about it and have identified a few reasons why this has hit us harder than some of the life threatening things in the past has. When I have time, I'll put up a post describing it.
But.... all that aside, yesterday brought some really great news. The eye exam went well for Blake & Jenna, they were both seen by the Speech & Occupational therapist and both said that Jenna & Blake were responding well and within normal. Then came the 2nd big event of the day. They got to move in together for the first time in 10 weeks!

That was certainly a joyous occasion.
Anna and April got talked into working again (4th 12hr shift in a row), so Anna is watching both, and April is taking care of one of their neighbors. We are kinda bummed that our twins have been paired up and we now only have one nurse instead of two, but we could not be happier that she is taking care of Trinity. We have really grown attached to those twins and we've also become pretty good friends with their parents. With April watching over them, we know they are in the best care possible.
So, anyways, my point is that I called and got an update from Anna this morning. Both did fantastic through the night. Jenna had one lil Brady, but it was briefe & she recovered on her own. Blake didn't have any A&B's, and has been sleeping comfortably.
Jenna gained an oz and is now at 4lb 5oz, while Blake lost 20g's and is at 4lb 8oz. Blakes weight loss isn't surprising after all that he's been through. That and he was retaining fluids and was a bit puffy after his surgery.
Both are doing great on their O's & are around 22-24% O2.

Anna told me the cutest lil thing... She said that this morning both of them were awake and she had them facing each other. She said that Jenna was making the lil "Ehhhhhh" sound that they tend to make, and that Blake was answering her back with his own lil "Ehhhh" she said they kept this up for a few min and really seemed to be talking back and forth. TOO CUTE!
About 45min later she called me. Blake had his normal bout of the hiccups and she wanted me to hear it. So she put the phone next to him and I got to hear his lil squeeky hiccup. Warmed my heart. That also goes to show how awesome those nurses are. They really go out of their way to make us a part of their care and every day life. Awesome nurses, y'all rock!

Today has started off pretty darn good. :)

Wednesday, March 25, 2009

Reunion pics

Mommy and daddy are tickled pink!!

I can't tell you how excited we are to have our babies together again. One thing we've wanted for them for so long, was for them to be side by side, like they were suppossed to be for 4 more months. I know that sometimes the NICU has been very scary for them, being away from mommy and daddy and most of all missing one another. Today we dressed them in their "formal" party attire-Jenna in her "little black dress" and matching hat, and Blake in his "tux", all for the special occasion.

Blake slept through much of the production, although he did try to crack open an eye from time to time. I know he senses her next to him though, he was very comfortable and satting well. Jenna was awake and looking around a lot. Anna faced them looking at one another and I swear Jenna couldn't keep her eyes off of her brother, she was so happy. ;o)

Daddy took video the whole time while I stood in disbelief that the day has finally come for them to be together again.

I've posted some pics. Here they are....

Together Again!!!!!!

The much anticipated moment finally arrived! This morning Dr. Su said that if they get a good report card from the eye Dr. Then they could move in together. Today; Jenna & Blake were reunited after being seperated for the past 10 weeks. Moving them was quite the production, but it was well worth the effort. Smiles all around.

Relieved; Cautiously Optomistic

Today's eye exam brought a couple emotions. It has brought much relief and carries some cautious optimism. With Blake's right eye, we received the desired report, "Good Laser". Those two words carry with it a huge cause for celebration. The report on Blake's left eye, while good, brings much caution to let our guard down quite yet. He does have some retraction that could be reason for another surgery. Another week of recovery will help indicate if another surgery will be needed. We hope to see retraction at his next exam. Unfortunately, if scar tissue develops, preventing the traction to regress, another surgery will likely take place. This surgery, "Buckle", would be done to help prevent the pupil from detatchment. We are VERY grateful for the report today. Words seem meaningless when attempting to describe the feelings of relief we are experiencing. Along with that, we are very anxious and nervous about the traction in his left eye. However, we have great faith in the continued prayers and positive thoughts. We are very hopeful that Blake's left eye will heal as needed.

Great news for Jenna, her exam showed no progression of her Stage1. The doctor said he is not concerned at this point and that it is highly unlikely for it to change. We will continue to pray for good reports for her as well, as we know how the unexpected can very well show it's ugly face. The surgeon is going to continue to follow both her and Blake until he feels they are in the "clear". We were also told that both babies would need glasses. Glasses?! Ha! Such a MINOR MINOR thing. whew!

We are so so proud of our babies. They are teaching us oh so much about being resilient and strong. They are truly two tiny heroes!

Dr. Su told her that they were going to be rewarded today and will be rejoined! We are at home taking care of some things and then will head back up to video their reunion. Can't wait!!

Thank you all for your continued prayers. We love you guys!

Tuesday, March 24, 2009

Jenna's BIG move-no more incubator!!

Jenna has been doing very well maintaining her temperature so was allowed to make the big move from her incubator to a crib. The crib is big enough for both her and Blake. Blake is still in the open air bed that he has been since his eye surgery on Friday. As soon as Blake gets the "ok", they will be reunited and he will join his sis in the crib. That will be great!

Anna was nice enough to hold out on moving Jenna til I Jason and I got there this afternoon. We got pictures and video of this momentous event. I know it may not seem like it, but this really is a big milestone for Jenna. She has needed to be in her isolette until today, 69 days after birth. this is a great accomplishment because it means she is healthy enough and does not need a temperature controlled bed any longer. She did very well during her big move and looked pretty darn cute when she decided to open up her eyes to see what was going on. It was fun to "celebrate" this milestone with our baby girl.

Blake seems to feel somewhat better and more comfortable today. His eyes are still swollen and he seems a bit tired. Poor guy, just as he is starting to feel a little better, he gets a follow up exam tomorrow. We will be praying hard tonight for a good report. The doctor did report that it was a difficult surgery. He thought he got it all but won't know til his f/u tomorrow. Jason took off of work to be there with us during this visit. We are also meeting with the OT and Speech Therapist tomorrow.

While I was sitting by Blake, I talked to him and told him how proud we are of him and that he really is mommy and daddy's little hero (him and his sister). HE responded to my voice by trying to open his eyes. It is so heartbreaking seeing him struggle. He tried to open one time a little too wide i guess and it must have hurt b/c he gave a out a very different cry. One that made me feel so helpless. This has got to be the hardest thing I have gone through......not being able to fix this for him. Waiting to find out if our attempts to save his vision and prevent blindness was successful. This by far has torn me apart the most so far.

Please keep Blake in your prayers and that he gets a good report tomorrow. Jenna is going to be rechecked too. She could use some prayers for a good report as well.

We thank you.
Kim and I got to spend lots of time with the kids yesterday.
We both held when we got there at 4:30 yesterday. My folks just got back in town from a week vacation, so they stopped by to see them as well. Unfortunately things were busy over at the neighbors, so April mentioned that the Dr's may ask them to leave pretty soon because it was getting crowded. NICU rules are that they only allow two visitors per family at any given time. There are times that that rule can be bent a bit, but that is generally when it's really quiet and not much is going on. Yesterday was not one of those days. But, they were glad to see the twins, even if it was only for a few min. They both said that they grew quite a bit while they were gone.

Jenna has been doing great. She's just been truckin along with her feeding & growing. She's at 4lb 3oz, 16.1 inches long. She's been comfortable and happy on 22-24% O2. She's on 13.5cc per hour feeds.
She's ready to move from her incubator to a real crib. Anna said that she'd wait until Kim goes up there so Kim can help and witness her lil girl moving into her new digs. They are going to wait until after Blake gets his next eye exam (sometime tomorrow) before they put them together. They figure they may as well leave Blake where he is, just incase the eye exam shows that he needs a follow up surgery. We are certainly hoping that he doesn't need another one.

Blake has been doing much better. Now that he's been getting close to his normal amount of milk, he's calmed down quite a bit. His eye's are still irritated by the drops they have to put in, but it's a necessary evil that we'll all just have to deal with. Anything to make his eyes better.
He weighed in at 4lb 7oz and measured 16.3 inches long.
The other day (Sun) he was having a few more A's & B's than they wanted to see, so they put him back on a rate of 20. This was a bit of a set back, but hopefully it'll give him the time and rest he needs to come back even stronger than before. He's been on 21% O2 the whole time. He's currently on 25cc's of bolus feed. He had a couple brady's after his 4am feed, so Anna decided to do his bolus feeds over a 30min period vs. all at once. Since then he hasn't had any brady's and he hasn't had any residual from his feeds.
Anna said that he's been much less fussy today. The nurses were most likely correct in that the bulk of his fussiness was caused by hunger. Now that he's up on his feeding, he seems to sleep longer and better, and isn't quite as irritable.

Tomorrow should be a pretty big day. The speech & occupational therapists are scheduled to come by and asses the kids. Not sure what time, but the eye surgeon is also going to come back and check both of their eyes. We really want to be there while the ST & OT's see them so we can learn what exercises the twins need to assist with their development. Obviously we are way way anxious to find out how Blake's eye surgery went, as well as to ensure that Jenna's grade 1, did not progress. We'd hate to have Jenna go through a similar ordeal with her eyes.

We'll it's back to work time.
Have a good day.

Monday, March 23, 2009

A new week begins

Well, here we are.... another Monday; another day at work. I would really really rather be at the hospital with Kim and the kids. But.... gotta keep things going.

Anna & April are back at work and watching the kids.
Normally, when babies are this age and pretty stable, they would combine them with one nurse. Apparently their nurses weren't having any of that and wanted to stay with their babies, sooooo they combined our kids with their neighbors Trinity and Kinsley. Kim and I had talked about that over the weekend. Last night Rhonda told us that a lot of parents want their kids paired to one nurse, however we Love our regular nurses and would really like to keep them around. That and we want Trinity and Kinsley to get the best possible care, so I was elated when Anna told me that they would be watching them as well as Blake and Jenna.

This weekend was pretty tough for the Reid family. Blake faced a big challenge and was set back a little bit on moving to canula. But.... he's a trooper and pulled through pretty good. He was pretty fussy yesterday and just wanted to sleep. He got Really angry when anyone would mess with him at all. It appeared that he was sleeping soooo hard that he would start to brady (A&B's), and require a little stimulation. He was sleeping so hard that he often would notice light stimulation, so we really had to shake him a bit to get his heart rate back up. Other than being wore out, he seemed to be doing pretty good. As the day went on, he seemed to settle down quite a bit, and when I held him at 10pm last night he slept peacefully the entire time. He was back on cpap and breathing room air (21% O2). Hopefully he'll be able to make the move to canula in a few days. We really can't wait to be able to see the beautiful face that has been hidden beneath all that tape (holding CPAP in his nose).
Good news is that since they couldn't make the move to canula, and they needed to start his feeds up again, so they figured they may as well try bolus feeds. They started him up at 12pm yesterday on 10cc's and he's been doing great so far. He's had hardly any residual from his feeding, which is a great thing. Hopefully he'll be back up to full feeds, get the IV out of his arm, and start working toward canula very soon.
Last night his weight stayed the same. Considering all the stress he's been under & burned extra calories, that's a good thing. He measured a little over 16 1/4 inches.

Jenna has been doing great. She's also been on room air and has taken to canula quite well. The Dr's wanted her a little heavier & therefore maintain her body heat a little better before they moved her to a crib. Last night she weighed in at 4lb 2oz, so she should be there. Last week when they measured her, they may have made a mistake because when Rhonda measured her she measured 16 1/8 inches, which was a huge jump from last week. Soooo she measured her another 3 times just to make sure. She's almost as long as her "lil brother" now!
Now that she's been on canula for a while and doing good, the Dr's will most likely want to try her on bolus feeds pretty soon. Soooo more big changes in store for the lil tykes this week.

Last bit of info before I get back to work. Blake has a follow up exam with the laser eye surgeon on Wed. Since he'll be in the area, he's also going to check Jenna's eyes again. We are really hoping and praying that he was able to get all the damaged blood vessels in his eye, and that Blake won't have to undergo another surgery. Keeping fingers crossed.

Hope everyone has a great day.

Sunday March 22

Quick update, as we are home late again tonight and it's time to get some rest.

Blake seems to be recovering from his eye surgery fairly well. He was pretty irritable and fussy today when tocuhed or moved around. I imagine he is feeling a bit tired and sore. His eyelids are not as swollen but his eyes are a bit red still. Gosh, seeing it breaks my heart. He settled in very well while being held by daddy tonight. Dr. Cho started him on bolus feeds (1o CCs/hour). He maintained his weight of 4lbs 4ounces. Jenna is doing well and had a great day. Her feeds were increased. She weighed in tonight at 4lbs 1 ounce.

Sunday, March 22, 2009

Early Morning Report

Since we didn't update yesterday, let me back track a bit.

When we returned to the hospital yesterday, we were both really hoping to see Blake move around and be awake. We were happy to see that when we started talking to him he tried his best to open his swollen eyelids. We were told before arriving that he had woken up and was pretty active. Jason was on one side of his bed and I was on the other. We both held his hands and he gripped them tightly as he looked from his daddy to his mommy. We sat and assured him that we were there and to take it easy, he didn't need to try and look at us right now but needed to rest. He continued to look back ad forth for a bit and then got sleepy and began to fight sleep.

It was so nice to see him extabated and back on the CPAP. Even better, he was on 21% and doing well. These settings were better than what they were prior to surgery. What an amazing little boy! He and Jenna are our little heroes no doubt. They are teaching us what strength is all about. We stayed for a few hours. While we were there, he remained pretty active for some time. He moved his arms and legs and would give out a little grunt from time to time. I held Jenna kangaroo for a while. It was real nice. She really did well and slept very deeply, so much so she drooled on me-haha. One of many times to come I'm sure. I got to dress her in a really cute outfit that her "aunt" Bethany sent us. I'll try and get the pics up later today. It fit her perfectly!

Our second visit yesterday was a very late one. During the visit, I held Jenna again. Rhonda was watching both her and Blake lastnight. She said that Jenna really enjoyed her bath. This was good to hear, in the past she did okay during her bath but would destat on occasion. Not this time. Guess before I know it, she'll be asking me for bubble baths! HA! Well, she did it! She hit the 4lb mark! Way to go Jenna! Still doing well on CPAP and is breathing at room air. She is also maintaining a good temperature so it looks like she will be moving to a crib soon. Hopefully into the crib with Blake whenever he is ready for his old roommate to join him. Rhonda said that he did very well during his bath as well. His neck is looking a lot better now. He was breathing at room air as well. He had had some bradies though and while we were there he had several more. Rhonda was keeping a good eye on him and felt that he was probably just tired, that he was not acting sick. When we left, we were a bit nervous about the bradies but felt better when Rhonda told us she would keep close tabs on the situation. Earlier, I asked her if she felt he was experiencing any discomfort and pain. She assured me that he was not acting as if he were in any pain but that he may be a little hungry. Although he is receiving nutrition, it isn't going to his tummy so he may notice a bit of the "munchies". That and he was not crying. Blake weighed in at 4lbs 4 ounces! When we got there lastnight, he was laying on his belly with his legs tucked in under him and his behind in the air. He looked so cute! He really is starting to look like a newborn now rather than a micropreemie or even a preemie. Jenna is looking really good too.

Jason called to check on them this AM. Carol reported that both had a good night. Blake had only one brady after we left. We are going up there in a bit. When Jason spoke to the doctor yesterday, she said that Blake really seems to be ready for cannula. Our guess is that he will be put on cannula today. I can't wait to see his precious face! Looking forward to spending time with my babies! Til then.....

Saturday, March 21, 2009

Unwanted Friday Surprise

Where do I start? Yesterday evening we experienced a turn of events that have me overwhelmed with anxiety and fear.

Yesterday things seemed to be trucking along nicely as they had been for several days now. Jason was missing his babies dearly so decided to head over to the hospital on his way home. We were talking, trying to make a plan for the evening while he was on his way there. I decided that I would meet up with him after a while so we could visit til 6 then grab something to eat and go back when the NICU shift change was over at 7:30. So, I finished doing what I was doing at home and casually packed and collected the diaper bag and made my way up to the hospital. While on my way, Jason text me informing me that Blake and Jenna were receiving their eye exam.

When I made it into the bay, I was asked if I had been called to come in. I replied with a questionable look on my face, "No". In the same breath I asked, "Why, is there something wrong?". I was then told, "Well, one of your babies is going to have eye surgery". I don't recall her exact words but when I replayed that statement in my head I thought I heard "boy" in there. I guess I was already preparing myself for an unfavorable update as soon as I was asked if I had been called in. I replied with, "My boy?" and "now?!" Just then, Jason walked through the doors into the lobby area of the NICU. He had the look of shock, fear, disbelief and dread all rolled into one very discernible expression. Much like what I remember seeing on his face the night we were faced with the shocking news that we would be delivering our babies mere hours into out 24th week. Immediately tears fell. Facing unfavorable news is done in an unusual way once you've become long term NICU parents. You are always on alert for the unexpected so when you do receive shocking news, in a way, you are prepared and are half way expecting the "usual ride". Yet the sting of the actual news itself is just as painful as the last news you received, no matter how prepared you are. It is very hard to explain this experience. One that can not be explained really, just experienced.

Jason proceeded to tell me that during Blake's exam, the ophthalmologist found stage three plus Retinopathy of Prematurity (ROP) and that it was severe enough to warrant immediate surgery. The surgeon and anesthesiologist had been called and were on their way. Keep in mind, I had just received the text from Jason 20 minutes prior, stating that they were doing the eye exam! While Jason and I sat in the waiting room and he gave me what information he understood, the anesthesiologist arrived. At this point we were still trying to piece together what little understanding we had while the doctors and nurses were back in the bay prepping our precious little boy for the second major surgery he has undergone in his 2 months of life. This is NOT normal!!!! sigh. Just saying that brings tears to my eyes. My gorgeous, strong little boy, born 4 months too early already has undergone 2 major surgeries. Truly truly painful for Jason and I to accept. We were able to go back for a brief moment to see Blake as he was prepped for surgery. He was quickly drifting into a deep paralyzing sleep. As he fell asleep, he chewed on his breathing tube. He appeared very peaceful. Jason and I watched him and gave him a kiss before returning to the waiting room.

The anesthesiologist came over a few minutes later and informed us of what anaesthesia would be administered and what to expect. We were told that once the surgeon arrived, he would call us back for further explanation. We sat there, once again, attempting to process a shocking report. A bit later we were called back. The situation is as follows. Blake has/had stage three plus retinopathy of prematurity. ROP is when the blood vessels in the eye are not properly attached in the eye. Being born prematurely, the blood vessels in the eye can sometimes intertwine and grow in an unorganized manner causing a collection of blood vessels rather than straight pathways. If gone undetected or untreated, the collection of blood vessels can cause the retina to detach resulting in loss of vision. Blake's condition is referred to as "RUSH".

Blake has RUSH in both eyes. We were told that the surgery had a 50/50 success rate. He needed surgery as soon as possible. Hours could potentially make the difference between losing his sight and hopefully saving his sight. We were and still remain terrified.

The surgeon arrived and we were called back to speak with him. He explained the procedure. It would be a laser surgery that would destroy the twisted blood vessels, in attempts to take away the risk of detachment of the retina. The best case scenario is that if successful, Blake would be extremely near sighted and his peripheral vision would be effected but he would still keep his vision. We would gladly accept this outcome and pray that we would be left with such, considering what could be.

We were then allowed to see Blake again before surgery. Back again on the ventilator that he worked so hard at getting off of just weeks ago. We were assured that once he came to after surgery and was strong enough, he would be extabated and would return to CPAP same as he had been on before surgery. We kissed him and very reluctantly left the bay. We sat in the waiting room from about 6 to 7:30. At 7:30, we were told that the surgery went well. The surgeon was pretty confident that he got it all but that Blake's eyes were a bit over dilated so he would need to do a recheck on Wednesday. More agonizing waiting and not knowing. A cruel combination.

Jenna's eye exam revealed that she has stage 1 ROP in her left eye. She will be closely monitored. With the nature of how quickly this can progress, we worry for her as well.

We went back and sat with Blake for some time. After quite a while, we felt a little jitter of movement from his hand when we placed our finger in his hands. Still mainly out of it, the respirator breathed for him. While we were there, he began to take a couple breaths on his own. When it was time for his eye drops, he lifted his arms and put them to his face. It was good to see the movement but heart wrenching knowing that he was moving his arms to his face due to fighting the placement of eye drops. He began getting his color back when we decided we needed a little break and some food. Jason and I drove home to drop off one of the cars and went for dinner. While sitting in the restaurant I felt a real detachment from the reality that everyone else around us was experiencing. We sat there and commented on the extraordinary lives we are currently living. The fact that what our "norm" right now is, is so far from the average person's "norm". We often times are so into reaching the next NICU milestone that we forget that what our average day events play out to be are quite different than everyone else we know. We ordered food but by the time it got to us, we had lost our appetites and just wanted to be back at the hospital. We reluctantly ate. It was a bit surreal sitting there watching the families next to us go about their Friday night causual dining. I know this sounds drastic but I almost felt I was an outsider in other's reality sitting there. I just can't successfully explain this strange coping process. Jason and I finished dinner with moments of no conversation mixed with a few comments that elicited the need to kick back tears. As I sat there, I thought, maybe we should have eaten PB&Js at home.

After dinner we went back to the hospital. We stayed until about midnight. While we were there, Blake would occasionally move his arm or leg or fingers but for the most part remained still. We visited with our new friends and fellow "24 weeker" parents. It is amazing to have a couple to talk to who truly and most closely knows what we are experiencing. It is nice to talk with other NICU parents in deed, but having a couple live much of what we have and continue to live, in real time is a blessing we have found in this very trying time. When we left, Blake was still resting peacefully. We were told that he may not really come to until the morning. When we got home, we stayed up talking till until around 2, when exhaustion finally took over. We called again to check on the babies and attempted to fall asleep. It took some time as I was imagining what Blake's life (or Jenna's for that matter) would be like if he or she were to lose their sight. No parent wants their child to have to face such challenges. I forced myself to think positively and I fell asleep praying and thanking God that they were still with us.

I do not feel I am handling this situation very well. When I think about the possibility of my baby losing his sight, it truly tears me apart. I feel knots in my stomach and a real heaviness in my heart. We have been faced with many situations but this is one that is really causing me much fear. My babies have gotten much stronger now and the light at the end of the tunnel was becoming brighter. This is one of those unforeseen set backs that continue to make this "ride" true to it's nature. We have somehow always been able to find focus on identifying the next plan of action and milestone and putting our energies into positive thinking in order to help our little ones reach them. I will do the same this time. It just comes with much pain. I pray that I can quickly find the strength to overcome some of the anxiety and fear in order to be strong for Blake and Jenna. Very early in our NICU stay, we decided that this would be our plan; it's what HAS to be done, and no matter what it is the best thing we can do. I pray for strength.

I called this morning to check on Blake and Jenna. Blake had started to wake up and move a bit. He was beginning to breath on his own and is on about 21% o2 which is good. He tolerated his assessment well and although his eyes are puffy, he appears to be comfortable. Carol said she suspected he would be extabated later today. Jenna had a good night and is also on 21%.

Well, as I often times do, I've journaled rather than blogged. After re reading my post, it is clear to me that I am way stressed and am quite disorganized with so many different thoughts running around in my mind. But now that I am a bit more rested, I plan to refocus on the next milestone, continue to pray and just be there for my precious miracle babies.

I have always felt a little awkward asking for something on our blog but today I have to make an acception. Please include Blake and Jenna in your prayers. We truly believe that the positive thoughts and prayers that we have received thus far have made the difference in Blake and Jenna's recovery from their premature birth. We pray for Blake and Jenna to come out on the positive side of the odds when dealing with their recent vision challenges.

Friday, March 20, 2009

Another week gone by

Kim rolled up to the hospital this morning and gave me the daily report.

The kids have been doing good since we last saw them (8hrs ago).

Jenna weighed in at 3lb 15oz. One oz away from 4lb. Both of us wondered if perhaps she may have already cracked the 4lb mark, but that the new issolet's scale reads slightly less that her prev one. I don't remember if we mentioned it, but when she switched incubators, she lost 3oz, which is not really likely as she wasn't really undergoing any changes at the time. She only had one slight heart rate drop during the night, which is perfectly normal and not a cause for alarm.

Blake gained one oz and is now at 4lb 3oz. Yesterday, at shift change Dr. Su was himmin & hawin over whether he should just move Blake to canula, or drop his pressure to the lowest setting. Janice said he was going to make the move, then chickened out (Dr. Su's own words) and decided to drop his pressure to 7. Janice was Very disappointed because she's been missing all these great milestones he's been hitting. She missed him hitting 3 & 4lbs, and she wasn't there when he moved to the crib. Now that I'm thinking about it, she Has been there when he's had some difficulties. You may recall that Janice was watching him the night before he had his pulmonary hemorrhage & she could tell that something just wasn't right with him. At shift change she told the day nurse to keep a close eye on him because he "wasn't himself". Keep in mind that this was within the first 36hrs of life. That's how in tune some of their nurses are with them. Amazing! Then more recently, she was with him the night he had his odd blister pop up. Kinda a bummer that she hasn't been there to see some of the positive changes, but we are very thankful that she was the one to care for him while he was facing some challenges. We can't say enough about how our lil kids react positively to their favorite nurses.
He had one Brady during the night, so he's been handling the changes very well. Dr. Su said that he's sure one of the Dr's that are on this weekend will move him to canula. He also said that Blake has been handling the move to a crib Very well.

Dr. Su also mentioned how impressed he is with the twins considering the challenges they've faced. Coming from Dr. Su, that is a huge compliment. Now that the twins are getting much healthier & require much less attention, he doesn't get to see them & spend as much time with them as he'd like. We told him that we completely understand that there are other babies in the NICU that demand much more attention and we know that he gave them all the attention that they needed when they were younger and not as healthy.

During that conversation he told us that the Occupational Therapist had seen them the day before. The OT assessed their range of motion in their limbs, measured their reflexes, etc. He said that Blake was doing fantastic, and was on the high side of normal. Jenna was doing good too, however she was on the lower side of normal. To exaggerate things, Blake and Jenna are always compared to each other, so sometimes one aspect of their health may appear to be higher or lower in comparison to each other, especially when one is ahead of the curve. So, if they compared Jenna to a random 24weeker, Jenna would be slightly behind. They are not concerned at this point (this was the 1st assessment), however it is something they will keep an eye on. They are keeping an eye on this as this can be an indicator that her Ventricular Hemorrhage caused some damage to her brain.
Again, I want to stress that this initial evaluation does NOT indicate a disability as it's too early to tell; however they are going to keep an eye on her. On the bright side of that news, the OT said that Jenna was consistent across the board. Generally, if they are seeing a disability, they will see some areas noticeably stronger than others, while other areas of their testing will be weak.
Even though this doesn't indicate a problem, it's still bummed me out a bit. I guess we were riding sooo high after all the great progress they've made this week, that it was a farther fall (emotionally) when we got the so so news. But, we'll keep our chin up and drive toward the big changes that they've got comming up in the next couple weeks.

Sooo please keep our lil ones in your prayers. They are doing great, but they still have a long road ahead of them and can use all the prayers and thoughts they can get. They have helped tremendously up to this point. We truly believe that. While your at it, please include their new neighbors Trinity and Kensley, and their parents. They are two beautiful girls & we hope they grow big and healty as well.

Speaking of our new neighbors.... We've had the chance to meet and talk with Trina & Keith (parents of the new 24wk twins). They seem like a great couple and have their heads in the right place, considering all they've been through. We hope that perhaps we can give them some amount of comfort by helping in any way we can. If nothing else, we'll be able to go through this together.

Well, it's time to get some work done so I can scoot outa here and go see my wonderful babies.
Take care

Thursday, March 19, 2009

Good morning update 33 Weeks!!!

Well, Anna & April are watching the kids today. As always, they just seem to respond great to those two. Wonder if they are interested in being a nanny. I'm sure Jenna & Blake would love to have their nurses with them for a long time. ;)

Anyways.... I digress.

They hit 33 WEEKS TODAY!!!!!! We've been doing a lot of reflection lately and it always seems sooo hard to believe that we've made it this far. It's often times very difficult to see the light at the end of the tunnel. Even though we may not be able to see it, we keep telling ourselves that it's there and will see it soon. It's been an amazing journey so far, and we are only half way through our NICU experience. It's been filled with some pretty stressful times, but it's also brought us some amazing joys. We've been able to see & experience some things that most parents will never have the opportunity to experience with their children. Admittedly that is a good and bad thing. But.... the main thing is that it hasn't been all bad.

Jenna did very good through the night. She had 3 A&B's last night, two of which where super short (10sec or less) and didn't require Dawn to stimulate her or anything. So, as long as they are very short and not too frequent, they aren't too worried and consider it normal after making a big change (canula).
Only down side is that they will most likely wait another day or so to move Jenna into Blake's crib as she's still a bit cool. They would like to see her slightly more warm before they move her to open air. If she's anything like her mamma, then she won't like the cold. That reminds me of something Kim told me when we first got together. She laid it out and said "I hate the cold, so we are never moving farther North than Dallas".... So there ya go.

Blake has been doing fantastic. He had one little heart rate drop during the night, but he recovered on his own. He's currently on room air (21% O2), which is awesome. They will most likely drop his CPAP pressure to 7 today. As you may remember; 7 is the lowest pressure setting an is the last stop before they make the jump to Canula. Cmon Blake..... You can do it!

Only neg thing with him right now is that he had a crazy blister on his neck Monday night.
We were up visiting the kids until about 10:30 that night, held them, weighed them and changed diapers and the blister was not present. Janice was just starting her midnight assessment when she noticed this rather large blister on Blake neck. This must have popped up within the hour as we were just there, and Janice had never seen anything like it. I don't think Dr. Su had seem something similar either. Dr. Su lanced it and they got it all cleaned up, then sent some blood samples off to get checked. He also ordered an IV and antibiotics for lil Blakers. He said he didn't want to take any chances with an infection and wanted to be proactive. We are all for that!
So, long story short, it was a weird occurrence, the blood cultures came back negative, and he's doing great and healin up quick like.
It's nothing short of amazing how strong and resilient these lil fire crackers are. They are setting the pace on strength and we are just trying to keep up.

Hope I wasn't too long winded. Seems like things just pour out when I go to update the blog.
Hope everyone is having a great day.

Another day in the books

The kids had another good day today.

Not much going on really.
Blake only gained a couple grams, and he's still at 4lb 2oz.
Jenna didn't gain any weight today, she's at 3lb 13 oz.
They've done this a couple times before. They'll stay the same weight for 2-3 days, then have a growth spurt and gain a few ounces in one day.
Then again, both of them had some pretty big changes this week (Canula, & moving into crib), and even the smallest things cause them to burn extra calories. Little do they know that later in life they'll be watching calories and trying to eliminate them. Life is crazy like that.

Both have been doing great with their breathing. Jenna has taken to canula quite well so far. She has had a couple A&B's a day, but that is expected with such a big change.
Blake is probably going to drop to the lowest CPAP setting tomorrow morning. If he does good on that setting for a few days, then he'll be moved to canula as well. Sooooo we may be able to see his beautiful face quite soon.

Tomorrow may bring one more big event......... Jenna may re-join her brother, and move into the same crib as him. That will be an amazing thing to see both of them sleeping next to each other. Reunited at last!

Blake & Jenna got some new neighbors this morning. Around 5am this morning, there were two more miracles on 32nd street (St. David hospital is on 32nd); two beautiful identical twin girls.
While we were visiting our twins, we met their father. His girls were born at 24 weeks, so we immediately had quite a bit in common. We got a chance to chat for about 30min and found out that mom and the baby's are doing good. Congrats to the new family.

As you know from reading our story, this is going to be a journey for this family. So please add twin baby girls O'Brian as well as mom & dad to your prayers (mom and dad have not aannounced their names yet so we thought we would keep that private until they do).
Kim and I firmly believe that all the prayers and thoughts the twins have received from our family and friends have helped tremendously and we'd like these little girls to have the same good fortune.

It's late and time to get some sleep. Hope everyone has a good evening.

Tuesday, March 17, 2009

Happy St. Patrick's Day In Deed!!!!

Today was one I will never forget!

When I walked into the bay this morning, I was a bit confused and wondered if my eyes were playing tricks on me. Walking towards "our part" of the bay from the door, I noticed that something looked different. From there, it appeared that another baby had been moved into Jenna's "post". The overhead light was on and as I was wondering if I had gone a little crazy or just hadn't gotten enough sleep, I thought, "why did they move Jenna?". I put my bag down near Jenna's isolette and looked at the chunky-cheeked little gal in her spot. "Oh my gosh!" It IS Jenna! She looked truly amazing. A perfect little doll. Chubby cheeks. Perfectly outlined lips that looked to be "painted on" like a doll. Healthy skin, so pretty against her green St. Patrick's Day outfit. THE cutest button nose. After a few seconds of realizing that I was actually looking at my little girl for the first time I immediately asked Ann where I could get ahold of some tissues. Tears. Shear joy. For two months, we have only seen their faces, cheeks and nose "in full" for a couple VERY brief moments (seconds really). The brief moments we did get a glimpse of their faces, their cheeks and eyes were swollen due to the needed tape to keep the tubes in place. So seeing Jenna today, in a lot of ways, was like seeing my baby girl for the first time. Beautiful! That moment gave me much joy. Now I think I have experienced a bit of what I was afraid I had missed out on. Due to the nature of the twins' birth, Jason and I missed out on the overwhelming happiness that parents feel when they lay their eyes on their babies for the first time after delivery. Today, I think I must have gotten a taste of what that is like. Looking at and meeting your newborn for the first time. I wish Jason could have been there with me. I took a picture right away and sent it to him. We could not be prouder.

Blake has had a very exciting day too. This morning, Lindsey said that Blake was moving into a crib TODAY! They were cleaning one for him first thing this AM. Blake's temp was a bit low (first time in a long time) so we had to wait til he warmed up. I made it a point to get to the hospital early today and was planning on staying for an hour or two. However, I couldn't imagine leaving before witnessing his big move. He was ready at about 11:30. There he was, all bundled up and facing the second biggest move of his life. I held him while his isolette was being traded in for a bigger and better model-a real baby bed! His "prince" blanket was sitting there waiting for him. Next to it was Jenna's "princess" blanket. I assured him that his lil' big sis would be arriving in a few days. That's a reunion we are VERY anxiously awaiting. Blake has done very well in his new bed. Jenna is doing pretty good on cannula so far. We pray that the lil darlings will continue to take to the new changes well.

I will definitely include a HUGE thank you in my prayers tonight. As Jason's post reported, we have been reflecting a lot on the events since the start of the new year. Since things have slowed down, some of the emotions that went with the challenges are being revisited and relived. So much fear, anticipation, anxiety, questions, concern of the unknown, sadness and helplessness. I could not thank God enough, nor my family and friends, for the support and love that has been shared with Blake and Jenna. I know that this paired with their amazingly strong personalities have helped them overcome the difficult times. Tears of gratitude.


Reflections: A flip of the coin

Now that the twins are not in imminent danger and life has calmed down a little bit, Kim and I have had a chance to look back at the road we've all been down and reflect on some of the events.

While Kim and I are very inquisitive and we feel that we ask for as much information as we can possibly get (& the Dr.'s give it to us), we may not always fully realize the magnitude of the situation.

Here are some of the things we've been reflecting on.....

The night that Kim was in labor, they had prepared the NICU that they may be getting a set of 24wk twins. The label 24wks is a bit misleading as they were only 2hrs into their 24th week and were really more like old 23 weekers. At that age, every minute counts, let alone days or weeks. Part of the whole preparation was for the NICU Dr. on call to come talk to us and basically explain the situation, the risks, and find out what level of care we wanted them to give our babies. During that consultation, he explained in detail what it meant for them to be so young and that they had about a 50/50 chance at survival (at best), and that IF they survived, they would face a 50/50 chance of severe disabilities. Despite those chances, he felt that they deserved a chance to prove their strength. We agreed whole heartedly, and felt that we should at least give them a chance at life.
As fate would have it, we delivered a few hours later. Jenna started breathing with a lil nudge, however Blake needed chest compressions and a little more push in the breathing direction. Despite the challenges, they were both breathing and doing pretty decent for their age/size.

At that point Dr. Su said that every hour they hang in there, they get a bit stronger. The next several hours to couple days would be critical. And so we visited them often and hoped and prayed that they would pull through this difficult time.

About 36hrs after birth, Blake had a major set back. We woke up that morning around 7:30 & called to check on them a short time later. We were told that they were working on Blake, he needed to be resuscitated and that they'd call us back when they had him stable. We told the nurse that we'd be waiting in the NICU waiting room. It was only about 200ft closer to where they were, but at that moment every inch counted.
After about an hour, Dr. Untalon came out to talk to us. We went into one of the consult rooms for some privacy, and he explained the situation. He basically explained that Blake had a pulmonary hemorrhage, and needed a jump start on the breathing and heart rate. This was a serious issue and the next few hours would tell if he was going to be able to pull through it or not. He was a strong boy and was able to stabilize after his ordeal. A couple days later Dr. Dekowski showed us the lung xray pics so we could better understand what was happening with our lil boy.

After recovering from that ordeal, about a week later we got the news that Jenna's head ultra sound came back with some troubling results. Jenna had a Grade 3 ventricular hemorrhage. They would be doing frequent ultra sounds to determine if the bleeding had stopped and to monitor for any damage it may have caused. If the bleeding stopped, then this would not be an immediate danger to her life, but could cause serious developmental issues. Again, one of those 50/50 chances type situation. I guess we were getting used to those odds.

So, those were some of the major issues these lil guys faced and overcame in their first few days of life. They have certainly bucked the odds and have come out pretty strong.
Now that we are no longer right in the middle of those situations, we are able to look back somewhat clearly and reflect. Also, now that we are out of the situation, we are getting some more details from the nurses and Dr.'s that really impress upon us the seriousness of the situation. A couple nurses have mentioned in conversation that the pulmonary hemorrhange is Very serious and that the greater number of lil premies do not make it through one. Often times all they can do is make them as comfortable as possible, give them some surfactant to help the lungs, and hope for the best. The nurses and Dr.'s try to give parents as much info as they can handle, but don't want to freak them out, so they sometimes temper the info they give.

We've also become more aware of the children that don't make it through birth or their first few days. Some even make it through the NICU, but aren't able to hold on. Having been sooo close to that same outcome ourselves, it completely breaks our heart as well as shows us how close we really came to only have one or neither of our lil ones. The flip of a coin. That is the chance they had that fateful night.

To look at them now, it's hard to believe they faced such dire challenges. They are getting soooo big and strong and making such good progress. We can't tell you how grateful we are for the amazing care they are receiving, all the prayers & thoughts from our family & friends, and to have our lil angels with us.

Now I know the pride a parent feels for his/her child. Glorious indeed!


Big day for the Twins!!!!!!!

This mornings report from mom came with great surprises.

When we were visiting last night, we had a chance to talk with Dr. Su about the upcomming changes.

He said that he thought Jenna was ready to make the move to canula, but he was being a lil chicken and was hesitant to make the move. Not really because he was afraid of her failing, but just cause he's very invested in these lil ones and he wants the absolute best for them. The other hinderance to that is that they are going to get their eyes checked today or tomorrow. Thats pretty tiring for them as it's a thurough exam and they have to have eyedrops for the exam.

As reported earlier, Blake is off his rate (breathes per min) and Dr. Su is ready to continue to wean him off the pressure. There are only two more settings before he's at the lowest that machine can do, then it's off to Canula.

Soooooo, this morning mom decided to make an early trip up to the hospital.

She told me that when she walked in the bay, the nurses had their hands in the issolette's and were performing their normal care on the twins. She said that Jenna's incubator just didn't look quite right and for a breife moment, she wondered if they had moved Jenna out of the bay (kids move around all the time, but they try to keep multiples together). As she got closer she gasped when she realized that Jenna was now on Canula!!!!!!!! She seemed to be doing great and looked beautiful (the St. Patty's day outfit didn't hurt either). She immediately emailed me a pic of Jenna. That was the perfect way to start my day off at work. I even got all misty.

The next big surprise is that Blake is moving from his isolette to a CRIB!!!!!

He's been maintaining his own body heat so well that his isolette has been on the lowest heat setting and he's still been hot. So they haven't been able to put clothes on him and have to keep him loosely swaddled to keep him from overheating.

Dr. Su said that they would like to get Jenna to share the crib with him in the next day or two!

I can't tell you how proud I am of them at this moment. We've been looking forward to and dreaming of thes moments for a long time.

I do have to temper my excitement a bit with the reality that Jenna may not take to canula perfectly and she may need to go back on CPAP. While that would be a bit of a bummer, it would not be unexpected at all. The fact that she was able to move to canula is an indicator that they are healthy and getting strong.

The stats:
Jenna weighed in at 3lb 13 oz last night; 14.2 inches long.
Blake weighed in at 4lb 2oz; 16.1 inches long.
Last night Janice noticed that Blake had a bit of a blister or soar on his neck. As a precaution they put an IV in him so they could give him some antibiotics.
Sigh..... Well, somehow I've got to muster up some motivation to do some work so I can roll outa here and go visit my growing babies!

Monday, March 16, 2009

Monday March 16th

Wow, another good strong steady day for Blake and Jenna. We can proudly report that today was just a day of growing and getting stronger. These are the days that we prayed for and we couldn't be happier that we are experiencing them now. Jenna will be put on cannula tomorrow or Wednesday. She has been doing well, Dr. Su just gave her a bit more time today to prepare. Blake has been doing well too on his rate of 0! He has only had one brady today. Dr. Su has put them on unrestricted holding time so Jason and I can hold them as long as we want as long as they are doing well during their time out. This is definitely good progress. They get their second eye exam sometime this week. last check showed everything going well. This check will be a good indicator for strength and health of their vision from here on out.

I held Blake tonight, it has been a few days since I had. I missed the little guy! I was really looking forward to swaddling him all day today. I didn't go up tot the hospital this morning because I have been working on clearing things our of what will be their room. Jason and I broke the bed down and put it in the computer room. So anyway.....Blake peeked a little off and on out of one eye tonight while I was holding him. It was pretty comical and pretty darn cute. I kept telling him that it is ok to open the other-haha. However, he was not convinced tonight and just looked out of his left. for the most part though, he just slept. Boy, does he ever look like his daddy! We found a picture of Jason when he was two and there is no mistaken that Blake is a "Lil' J". Janice and Heather (Blake and Jenna's night nurses) think the same and think that Jenna looks like me. Speaking of Jenna. She has a very interesting and "retro" hair style these days. Much of her hair has lightened up a bit and another big portion has fallen out. She just looks so cute with her wild and crazy hair these days. I can see her eyelashes a little now. She was a little wiggly worm while Jason was holding her. She was very content, just wiggling around. As always, we enjoyed our time with them and can't wait to see them tomorrow.

Blake weighs 4lbs 2 ounces tonight. Jenna hasn't been weighed yet today.