Thursday, April 30, 2009
First thing I want to get out there.... I guess when I got the initial news about the MRI, I was really hoping to get great news or at the very least something definitive. That didn't quite happen, but in my disappointment, I managed to skip over one very positive thing. The MRI did Not show any additional damage. That in itself is a great result that we are Very thankful for.
Yesterday was a big day of changes for Blake. Dr. Su decided to move him to full nipple feeds! This is the main requirement that they need to make in order to graduate from the NICU. With the move to full feeds, Blake no longer needs the feeding tube he had in his nose. Whoo Hooo It's simply wonderful to see that beautiful face without something obstructing our view. So now, Blake just has to do good on his feeding and maintain his breathing.
Another big change is that they took both Jenna & Blake off caffeine. The caffeine gives them a little boost of energy, which helps with breathing and feeding. Although they can go home on caffeine, it would be nice if they were able to handle things without it. They can always pick up that habit later ;). The possible side effect to coming off caffeine is that they could have some apnea while sleeping hard, they could have some labored breathing, and they could have a reduction in feeding. It takes 5-7 days for the caffeine to work it's way out of their lil systems, so we'll see how they react to that over the next few days. IF one or both of the twins don't handle being off caffeine, they can still come home, we'll just have to give them a daily dose of Tha Good Stuff, & they'll have to be on heart & respiratory monitors. The big problem with that is the monitor is not overly sensitive and is prone to frequent false alarms. As you can imagine, this can cause a LOT of stress and anxiety. One option is to bring them home on nasal canula with 100% oxygen. This will offset the need for caffeine to help them breath & maintain their O2 saturation. The downside to this option is that we'll have to have a medical rental company come over to the house and set up large oxygen bottles and they'll have to be on canula, so they'll be tethered to the bottles and have tubes on their face once again. With either option there are trade offs.
Dr. Su doesn't want to do their final evaluation until they've both had enough time for the caffeine to work its way out. So, the earliest they will go home is next Thursday.
One of the many things they have been keeping a close eye on has been their blood pressure.
Jenna's was a tad high for a while, but has recently gone down to normal levels. Blake's is still a bit higher than they would like. Dr. Su said this is a symptom of the lung issues that Blake faced early on. One of the things complicating the readings is that caffeine often raises a preemies blood pressure. Sooooo we are hopeful that as the caffeine wears off, his blood pressure will fall into the normal category. If for whatever reason it does not, he can still go home but he'll need to be seen by a heart specialist that will prescribe him some meds to help keep his blood pressure in the normal range. Besides having to be on medication, the other downside is that he'll have to stay in the hospital for a while longer as they have to gradually adjust the dosage of the medication so they can find the correct dosage to keep his blood pressure at the right level. This process could take up to a week, and he could be on the medication for 6mo to a year. Not the best thing in the world, but if that's one of his only problems, then we can handle that & be grateful that's all he has to deal with.
I don't think we mentioned it, but a couple days ago the twins moved from the high calorie (32 cal) formula to the kind of formula (22 cal) that they would go home on (and is available in stores). Since then we've noticed that they haven't been gaining weight quite as quickly as they had been. In fact, the past two nights they've either dropped a few grams or stayed the same. We have to keep in mind that they are getting less calories, and they are working harder by being on full nipple feeds, they are awake Much more than they ever have been, & off caffeine. So, it's not really too surprising considering all the work their lil bodies are doing.
As a result, here are the current weights.
Jenna: 6lb 12oz
Blake: He's trying to be a good sport and let his big sister catch up. He lost 25g & is now 6lb 15.5oz.
Tuesday, April 28, 2009
As Jason stated, the news we received about Jenna's MRI was really in some ways inconclusive. I am grateful that there was no growth in the areas in question. She is certainly behaving appropriately for her age. In fact one of the doctors told me that Jenna's attitude is a lot older than her neurological development-HA! Yes, she is quite the lil' firecracker.
Well.... the long and short is that it was pretty much inconclusive.
The MRI showed the residual blood within the ventricles. This was expected and normal considering her situation. The residual blood will take quite a while to dissipate. So, nothing really new there.
The MRI also identified the "cystic areas" in her brain. If you recall some of the early posts, the cystic areas were simply dead brain cells that never really go away. The developing brain is amazingly versatile and usually just grows around it with no lasting effect. They did monitor those areas via frequent head ultrasounds and ultimately this MRI. They wanted to make sure those areas did not grow larger as that would have indicated a problem. In her case, they have not gotten any larger.
The only real new information was that the MRI showed that Jenna's brain hasn't grown quite as much as they'd like to see in a preemie. But.... to offset that info, the other way they measure brain grown is by head size, & Jenna has always been well within the normal range and is very similar to Blake which did not have any Ventricular Hemorrhaging.
The other positive signs have been her behavior. Thus far, she has behaved normally, muscular grown and coordination are normal, feeding & suckling responses are normal, and her general movement have been normal as well.
Sooooo all in all, we are pretty much where we were before the MRI. It's just one of those things that will play out over the next couple years. We'll ensure that she gets Occupational & Speech therapy to help with her early development.
Now that I understood that they were more or less doing the MRI to ensure there was not damage that they could not see through the ultrasound, I asked about the side effects to the sedative she had to get in order to stay still for the procedure.
Dr. Lynn said they were increased Apnea, and reduced feeding. Jenna didn't experience either of those.... But my real motivation for asking was for Blake. He didn't have a ventricular hemorrhage, and his growth & behaviour has been completely normal. So, given that we wouldn't really get any new or beneficial information, I told her that we didn't want Blake to undergo an MRI. If we aren't going to learn anything important, then there is no reason to subject him to the procedure or risk hampering his progress with feeding and breathing. Right now he's working on catching up to Jenna with his feeding so he can go home with her. I don't want to risk that if at all possible. Dr. Lynn agreed that there probably wouldn't be any benefit for Blake.
Soooooo... Lil bit better news.
Jenna rang in at 6lb 12oz! She's ready for the 7lb mark.
Blake hit 7lb 2oz.
They are gettin big, thats fo sho!
Take care everyone...
Monday, April 27, 2009
Jenna measured 18 1/2 inches long.
Blake was 19 1/8 inches.
It's amazing the transformation they've undergone.
From a 1lb 3oz 12" long scary lil thing, to a heavy 7lb 19" baby.
They were just wheeling Jenna out of the bay to go get her MRI done. They have to give her a sedative prior to the MRI so she can be perfectly still. When they get her to the MRI machine they have to secure her all snugg, so she doesn't move at all. Any movement and they'll have to redo the scan. I can only imagine what she must look like, and it's probably a good thing we can't see. Even though she won't be in any pain and will be sleeping through the whole thing, it's got to look pretty scary with her all strapped down.
We are just keeping our fingers crossed, hopin and prayin that they scan shows a healthy un-damaged brain. That would just make our day and remove a TON of worry. Cmon Jenna!!!!!
Many many thanks to all the people who came out for Kim's shower. When I got home, she was soooooo sooo happy. She said the shower went perfectly, and had a great time visiting with everyone. Very thankful for all the generous gifts as well.
A special thanks to Christine and my mom for organizing and running the shower. It was perfect.
Thanks to Adam, Wooly, & Mom for all the help getting the house in order and ready for company. We couldn't have done it without all the help.
We are truly fortunate to have the wonderful family and friends that we do.
Jenna weighed in at 6 pounds 10.5 ounces. Yay Jenna! She slept so peacefully lastnight while we were visiting. I can't get over how chuby her cheeks are. Her skin looks so pretty, it has a good color. Her hair is starting to come back more now. She has dark "peach fuzz"' hair and of course still has the line of long dark hair in the back that she has held on to since the very beginning. That is what she kept from having a full head of hair when she was born.
They both look really good. Blake's cheeks are really filling out. Both seem to have double chins. The baby fat is so wonderful to see. I did not get their length yet, I was just so excited about their weight gain. We are rather surprised at Blake's gain because he had a massive diaper change lastnight before getting weighed. We thought for sure he had lost a pound with that one-haha.
Blake is now on four nipple feeds a day. Jenna is still doing well with full nipple feeds. She will be getting an MRI today. We knew she would be getting one close to the end of her NICU stay. It should give us somewhat of an idea of where we stand with things as a result of her ventricular bilateral brain bleed. We pray it will bring good news.
I had a wonderful baby shower yesterday hosted my Christine (sister-in-law) and my mother-in-law. The house was very nicely decorated and the food was very tasty. We had a little over thirty people show up. Needless to say, our house was packed. It was great to see everyone. We received so many beautiful gifts. The cake was made my Kathy, a good friend and former coworker. It was delicious. We had many friends and family members attend. My mother, sister and niece came in from Bryan. I also was happy to see a former kindergarten student, her sister and mother come as well. Taylor is now seven years old and still just as precious as before. It was a great shower. Next Sunday I will be in Bryan for a shower that the Patranella side is throwing for me. I am looking forward to visiting with some family members I have not seen in a while.
Well, it looks like we are pretty ready for Blake and Jenna's homecoming. We are more than ready to trade in our daily visits to St. David's NICU for the daily routine of taking care of them at home. It will be so surreal when we walk out of the NICU unit as NICU graduates, I can't imagine the overwhelming feeling we will experience. We are hoping and praying that we will get to leave the NICU as a family, all four of us. We dread the thought of having to leave one in the NICU and bringing one home before the other. There have DEFINITELY been harder things to cope with during this terrifying yet amazing experience but we would love to find closure together, all four of us, on one single joyous day. Keep your fingers crossed!
Sunday, April 26, 2009
Blake and Jenna have been doing great! They are now 38 weeks! Sometimes, it is hard to believe how far we have come in 14 weeks. It is amazing the development and growth they have experienced. We think back at times from their first hours and very vividly recall what our babies looked like. When we look at the first pictures, the emotions still run high. to look at them now, you wouldn't believe they were the same babies. Now over 6 1/2 pounds each and bottle and breastfeeding. Now when I look at them, they resemble full term babies. Truly miracle babies.
They are doing well with the feeds. Jenna is still plugging away. She is taking in just the amount they hope for, but is doing so well in pacing herself. She is on full nipple (bottle or breastfeed) feeds. Blake is slowly doing better. He is now on 2 nipple feeds, one gavage (sp? tube). It's been a lot of fun going to see them and spending time with them. They make the cutest facial expressions. Blake is such a grunter. he spends a lot of time stretching out and "telling" us all about it. Jenna has been looking so peaceful while she sleeps, you just can't take your eyes off of them while visiting. I am looking forward to not having to report on VISITING my babies...rather, walking into their nursery and just experiencing these things at home. It is just about time for a much awaited homecoming. Jenna is real close to that point. Blake is getting closer. We are really hoping and praying that they get to come home on the same day. We want our whole family together and not to have to leave one behind for a bit.
Blake is at 6lbs 14oz. Jenna is at 6lbs 9oz. Well, my Austin baby shower is today so I better go for now and get a bit more rest before the fun begins.
Wednesday, April 22, 2009
I've been working at the house to get things ready for the kids arrival and the baby shower, so I haven't been to the hospital nearly as much as I'd like. I've even skipped several days worth of visits. I hope someone appreciates all this stuff! ;)
Well, Jenna had her eye exam and Dr. Lockhart said that her eyes were regressing nicely and that he doesn't anticipate her having any eye trouble at all!!!! Talk about great news!
Both of them had their hearing checked and that was looking good too. Kim asked how they could possibly test a babies ears, and it's quite ingenious. They hook up leads to their heads to monitor brain wave activity, then place lil ear muffs over their ears. The babies have to be asleep so they can get a good baseline. Then they play different sounds and measure the reactionary brain wave activity. Pretty neat stuff.
Both Jenna & Blake came off the Theoflin meds. This is very similar to caffeine and helps give them a lil extra energy to keep up with breathing and all the other things they do as babies.
So far, Blake hasn't had any problems, but yesterday evening Jenna had one Apnea, then around 4am she started breathing a little heavier, so Janice decided to put her back on the canula airway to give her a rest. Today the Dr.'s will be deciding if they should put her back on Canula, or back on Theoflin or Caffeine. All in all it's not a big setback and was not too surprising. Babies can go home while on canula or caffeine, so that will not slow down her progress toward home.
Yesterday they gave orders for all Jenna's feeds to be by nipple, whether that be bottle or mom. That in itself is a HUGE milestone as that was one of the requirements that she needed to meet in order to go home.
Blake is on 3 nipple feeds a day, two of those can be mom feeds.
Last night, Jenna weighed in at 6lb 6oz.
Blake is rapidly working toward 7lb and hit 6lb 10oz.
It's crazy how things are moving soooo quickly now. It's hard to comprehend that in a matter of days now, we'll have two bundles of joy in our arms and everything will be up to us. Joyous and terrifying all at the same time.
Tuesday, April 21, 2009
Blake weighed in at 6pounds, 8 ounces.....6 1/2 pounds-wow! Jenna weighed in at 6 pounds 3 ounces. Jason and I are predicting we will be bringing home 7 pound (plus) babies. I can hardly remember 4 pounds. It seems we went from finally making it to three straight to five pounds. Sunday, Jenna measured 18 inches while Blake measured 18 1/4 inches.
Jenna is now on two nipple feeds (bottle or breast), gavage, two nipple feeds, gavage feeding schedule while Blake is on one nipple, one gavage rotating schedule. They are both doing well. Jenna has learned to pace herself nicely and rarely needs to be helped with pacing, especially while nursing. Blake is doing well. The doctors do not feel he is nippling well enough to bump up to two nursing feeds yet. However, I feel he does much better with breast feeding than bottle feeding. I understand though that they need to be able to keep track of the volume he is taking in. He is definitely a stronger "nurser" than bottle feeder. With the bottle, he does well but takes a bit more time as he is pretty cautious while feeding from the bottle.
Lastnight was bath night. Jenna seemed to enjoy it part of the time and tolerate it the other part. She has new peach fuzz....dark peach fuzz. I am glad to see her pretty black hair start to grow back. It was so shinny, full and soft when she was born. Although, she has to be one of the prettiest lil bald baby girls there is out there-haha. Blake's hair is getting fuller and longer. His is still light like his daddy's was when he was little. Blake enjoyed his bath and just lounged for most of it.
Jason and I keep trying to predict when they will be coming home. We aren't getting any real clues yet other than they need to be receiving all feeds via nipple (bottle and/or breast). We really hope and pray that they will be coming home together. to us, it seems they are almost equal in the feedings but am waiting for Blake to be bumped up. It would be so difficult to have one at the hospital and one at home. Visiting would prove to be very difficult. One of us would have to stay home while the other visits. With my breastfeeding them, I can imagine how much of a task managing that would become. However, I want them both 100% ready before making the move to their home.
I can't get over the fact that I am posting about our latest prediction....when they will be coming home. Wow, I am once again overwhelmed with a realm of emotions. Mostly of the excited and happy kind....a little nervous, but mostly happy. What a change! I pray that they continue to do well and that we are not faced with any unexpected bumps in the road. I can't wait to have them in my arms at home.
Sunday, April 19, 2009
Friday night Janice called while we were working on the babies' room to tell us that Blake had "found" his thumb. She got some great pics and video of him sucking on it. While his "big" sis slept, he was up and was very active. She put him in the bouncy chair so he could "play". She went for the camera that we left up there for the nurses to use so that she could video him but the batteries went dead. So she went yet another extra mile and took video with her phone. We are so thankful because we hate to miss seeing things that they do while we aren't there. Blake also went for his first "stroll". Janice took him around the unit to visit all of his (honorary) "aunties"(nurses that have card for him) . They couln't get over how big he has gotten and it was decided that he looks just like daddy. Jenna slept and was being watched by another nurse while Blake was on his outing. As soon as she gets off of cannula, she will get to take a stroll too.
They are doing well with their feeds and with nursing. Jenna is up to two breast feeds a day and Blake will soon be there too. They are taking ~58cc s every three hours with the bottle.
Jenna weighted in at 5lbs 2 ounces and Blake was 5lbs 4ounces.
CORRECTION (please see comments): I think the paint fumes are getting to me. Blake is
6lbs 4 oz and Jenna is 6lbs 2oz. Whew....growing like crazy.
Saturday, April 18, 2009
The bigger they get and the more they behave like full term babies, the bigger the warm fuzzies get. I think it is because I am realizing that we really have two babies who we get to take home. Finally. We have waited for so so long....years. And then when we did deliver, we had to wait even longer. Worth the wait...without a doubt....well worth the wait.
Well, there are a few more things that have happened that are really cute that I will share tomrrow. It is late, need to sleep.
Thursday, April 16, 2009
The things we are currently working toward:
Working toward getting off cannula all together. She's dropped down to 1/2liter, which is almost nothing, but can give her just a lil more O2 if she needs it. That's usually around feeding. The Dr.'s debated removing the cannula all together & strappin the cannula on Only at feeding time if she needed it. She still tends to get overzealous at feeding and forgets to breath, so that was likely. In the end, the Dr's decided to bump her bottle feeds up to 3x per day, so they didn't want to make too many changes at one time. Feeding burns quite a bit of calories, and takes a lot of their energy. She will most likely be off cannula within a week or so.
The other thing she's working on it getting more and more bottle feeds in per day.
He's working on maintaining his O2 saturation levels while breathing on his own. So far he's been doing great, even during feeding sessions. That in itself is an amazing development. Dr. Su and I were talking about that last night. Given his Pulmonary Hemorrhage (bleeding in lungs), he's been amazed at his breathing progress and is very very pleased. Kim and I think that one of the reasons he's done so well is that he approaches things cautiously, which has helped during feeding. He's not over eager, so he feeds, swallows, & breathes. Because of this, he's a little slower than the therapists and Dr's would like to see, but as a result, he maintains his O2 much better. So it's a bit of a trade off. One that I'm more than happy to take. ;)
The other thing he's working on is increasing his feeds per day.
Those are pretty much the big things in their lives. Breathing, feeding, and growing stronger. In some ways it can seem somewhat boring as all they do is sleep, & feed, but that's pretty much what babies do (don't forget poop... fun). But..... seeing them improve their feeding skills, increase their feeding, and do better breathing on their own is Very Very exciting. We can see them growing stronger by the day, and that in itself is an amazing thing to witness & be a part of.
So.... I order to graduate from the NICU, they need to take all their feeds via bottle, and do a good job of breathing on their own. Being off cannula is not in itself a hindrance to going home, as they do send kids home while on cannula, but it would be ideal. Dr. Su said that the babies will usually slowly increase their bottle feeds, then when they are on 4 or 5 per day, they usually make a breakthrough and quickly jump too all feeds via bottle. So we've got something to look out for. Once they get to the point where the Dr's feel they have met all the criteria to go home, they will usually hold onto them for another couple days just to make sure everything goes ok. Then they are home bound!!!
While we remain on guard for unexpected complications, it's also time to start really getting ready for them to come home. They've only got 3 more weeks until their original due date, and it's looking like that's about when they will be ready to Graduate!
Then the real adventure begins!
We pretty much live in a bubble as we spend just about every free minute at the hospital with the kids, or at the house getting things ready (never ending task).
Not having any free time, we haven't been able to keep in touch with our close friends, and family for that matter, soooooo your comments are greatly appreciated and give us an insight into your thoughts.
So please feel free to post a comment every once in a while. They are greatly appreciated and welcomed.
I've set it up to where you can comment anonymously, just add your name at the end of the comment if you wish. Completely anonymous comments are great too.
Many thanks to all our family and friends that have been sending prayers and positive thoughts our way. They have helped the twins and us get through this very difficult time in our lives.
Wednesday, April 15, 2009
When I called this morning to check on Blake and Jenna, Trisha asked if they had been breast fed yet. When I told her they had not, she said she would check with Dr. Su for an ok. I was so excited to find that we may be at the strength and development to start nursing. We got the ok and attempted at their 1:30 scheduled feed. Blake took to nursing quite well. The lactation specialist and nurses were impressed with how he handled this new situation. I was happy to see it, as I was quite surprised to see that he took to it so very well and quickly. Then it was Jenna's turn. She, too, did well. She seemed to breath better and pace herself better with nursing. Wow, we all couldn't get over how well and quickly they took to it. I was made to understand that a successful session of nursing greatly depends on their level of alertness at time of the feed. I was advised not to get discouraged if they do well one day and not so well the next at this point. However, the nurses, specialist and doctor were all very pleasantly surprised and happy with their performance today. There they go again, surprising us all with their progress. I am a very proud momma today. They have been approved for one breast feed per day. Jenna is on three bottle feeds a day and Blake is on two a day. The other feeds will be "cabage" (sp?).
They are now sleeping on flat surfaces, no more egg crate. This is to mimic more of how things will be when they come home. They will soon no longer be using "froggies" (a horseshoe pillow placed near their heads to provide boundaries). Jenna's cannula has been lowered to 1/2liter, another step in weaning her completely.
Last but certainly not least to report....weights. Jenna is 5 pounds 14.8 oz!! Blake is 5pounds 15.8 ounces!! Can you believe we are that close to reaching 6lbs!?!?!?!
I spent a lot of time today holding the lil ones. We got a lot of great quality bonding time in. I even got to hold them together for quite a while. It was quite the treat b/c they were both awake ans looking around for a while. I kept looking from Jenna to Blake back to Jenna then to Blake. Haha, it is all about dividing my attention. Truly amazing to be fortunate enough to have two wonderful babies to give love, time and attention to. I wouldn't have it any other way.
We took some new pics today. Trisha helped me take more Easter Bunny pics. I've posted them in the Easter folder.
Jenna 5lbs 11.7 oz
Blake 5lbs 14.4 oz
Blake is doing well without cannula so far,we are so proud of him. Their egg crates have been removed and they are now sleeping on flat surfaces in praparation for the mattress they will be sleeping on at home. Jenna is at three bottle feeds a day. And the two big events are that Blake's eyes will be rechecked. PLEASE SEND OUT A LITTLE PRAYER that he gets a good bill of vision health. And last but not least, we are in the process of getting the okay to start nursing. Over three months after birth and we may finally get to start nursing. After all that....(I am not going to be modest here).....ANNOYING TEDIOUS EVERY TWO HOUR pumping, it looks like it will start to pay off even more.
K, time to go see my babies.
Tuesday, April 14, 2009
While I was there today, Jenna slept the entire time. Blake was awake all the way until just before I left. I fed him and rocked him until he finally seemed to get tired enough to nap. I placed him in bed and watched as he drifted to sleep. I just couldn't leave while he was still looking around.
We are getting pretty ansy about having them come home. The stronger and more prepared they get, the more anxious we are to have them home. We are working on getting things ready each day. Jason and I used to be such pack rats that it is taking some time to clear things out.
I forgot to mention...the other day one of the doctors came by to assess Blake and Jenna. He said that Jenna has an "older" attitude and that her attitude surpasses her neurological development/age-haha. He also said that Blake is pretty calm. So interesting seeing their personalites show.
We haven't gotten their weights tonight. Their length from Sunday is;
Jenna 15.5 inches
Blake 17 7/8 inches
Wow, really do look like newborns now (although they are over 3 months old!).
Monday, April 13, 2009
I brought in a stuffed animal rabbit in a basket and we got some good pics with it and the kids. It was pretty cute to see them sitting there together and with the "Easter Bunny". It made me think about the Easters to come and getting them Easter baskets for the Easter Bunny to fill and about coloring eggs, Easter Egg hunts and family get togethers. Wow, Easter will bring about a whole new realm of experiences for the Reid family. Jason and I usually help the cousins partake in the hunt, aiding them in finding the "prize eggs". Well, we love you cousins but it looks like we have a couple more kiddos to direct in the right direction next Easter too.
The pictures came out pretty cute. We put Blake and Jenna face to face yesterday for some pics. It seemed they knew each other so very well and it appeared to be first nature to them to be side by side. They are always together now that they have been in the same crib but to be hand to hand, it is pretty neat to see. At one time their hands were all intertwined and it was just too cute. We put on their new summer outfits from Aunt Donna and Uncle Scott. Their first pair of shorts proved to be a hit.
The kids made us a special Easter surprise, thanks to Janice for her help. They made us an adorable card with their foot prints in it. Wow, how they have grown! This card will definitely go into the baby book.
I brought them some Easter goodies. They got some new hats, socks and a pair of sheep slippers that they will share. That and a tiny Easter bunny....maybe you can see in some of the pics. Haha, yes.....needless to say mom really got into the Easter Bunny festivities. I can't let my babies miss out even if they are in the hospital.
I've posted new pics in the Easter folder. More will go up tonight. We haven't gotten their weights and measurements from lastnight yet so when I do I'll post them.
Saturday, April 11, 2009
We are looking forward to Easter with then tomorrow. We plan to spend some time with the family but will be with our new family of four for much of the day. We are planning to take more Easter Bunny Pics. I'm enjoying the first round of Easter pics so much and look forward to getting more tomorrow. I heard from the Easter Bunny that he is going to stop by and leave some things for the kids that we can take to them. ;)
They are doing well with feeding. Our lil gal is really starting to get the hang of the multitasking involved with bottle feeding. Her coordination is improving. Blake is still doing well and carefully takes his bottle. We are so proud of them!
Well, we are going to grab some lunch and then go visit the cuties. When we get home it's back to preparing their room. Hopefully, it won't be long now before they get to see their new home.
Friday, April 10, 2009
Lastnight's visit went real well. I must say, I will be so happy when I can retire that phrase......"lastnight's VISIT". As the kids get bigger and behave more like newborns each day, the idea of VISITING my babies is one I'd like to exhaust. I can't wait to be with them all day and all night, just like parents should. Although St. David's is a wonderful home away from home for Blake and Jenna, I am getting real anxious to introduce them to their REAL home. While feeding them and holding them, all I can do is wish we were at home. I do realize this is a symptom of "NICUisitis" that Jason mentioned in an earlier post. I also realize that while they are close, they are not quite ready to be home yet. Many thoughts dance around in my mind when I think having them at home with us. Excited, curious, happy, with a touch of hesitation and fear. The latter only because it is a GREAT comfort knowing your little ones are being watched by medical professionals 24/7 and once you are at home you can not longer rely on anyone but yourselves. THAT is a bit scary. While the dinging and ringing of the monitors(although much quieter than the previous months) can get real old listening to after a bit, the fact that they are helping monitor their breathing, heart rate and oxygen is really a comfort. The thought of sleeping once the babies are at home, is something that I wonder if I'll do much of. Not because there will be round the clock feedings, diaper changing and snuggling, but because I will be always wanting to make sure things are ok and that the bouts of apnea and bradies are a thing of the past. Those monitors are kinda like that one friend that you have that has an annoying quality or two but is a really good friend nevertheless-haha. I realize I have quite a bit of anxiety that comes with their homecoming that I am attempting to work through. I know that there will still be a bit of fear associated with having them at home no matter how prepared I become. I've had the comfort of knowing my babies are in great hands medically since the day they were born. They have been watched, monitored, cared for in such a way that we are so grateful for. But before I get too far ahead of myself.....they aren't home YET and I need to focus on further getting them (and me) prepared for such a great day.
Lastnight, Jenna did real well with her bottle feeding. Jason fed her and proudly reports that while still needing to be paced, she is improving. Wow, she really likes feeding time. Again, I can't help but to think she is taking after me in how much she likes to eat-HA! I fed Blake lastnight. He also did well. He had times of focus and vigor and others where he teetered between eating and sleeping. All and all he remained awake and pretty alert. Jason got some good video of him eating tonight. He is just so darn cute when he looks around and pauses.....I think he really thinks about what he is doing. We also got some video of Jenna having the hiccups. She is so precious with her smooth soft skin and puffy little cheeks.
Neither had been weighed while we where there. I will be calling after shift change this AM for the usual AM check in. Mom is on her way to help me do some cleaning and preparing the house for their homecoming. Since they've moved to Bay 7, I have had a reality check....no more, "two more months" to prepare! YIKES!!! How wonderful though!!!
Thursday, April 9, 2009
Blake weighed in at 5lbs 4oz.
Jenna made a big gain and tipped the scales at 5lb 3oz. She's really catching up to her lil brother.
He had better get it in gear if he wants to stay the big, lil bro! ;)
Wednesday, April 8, 2009
Now that things have settled down a bit, we are often asked if we have "NICU itus" (itchin to get out of the NICU), if the time has flown by, if we could imagine where we are today (holding, feeding, bathing our lil babies), any many other similar questions.
NICU Itus: Kim has a little bit of it, but not too bad. She's a little tired of having to drive 15min, make the trek up to the 3rd floor, and then the long walk down the corridor to the NICU to visit our babies. She's really ready to have them home with us, all snuggled and safe in our bed.
I dealt with the long wait by setting my sights on the most likely "release" date (probably around May 15th), and haven't really considered anything earlier. Sometimes it seems that day may never arrive, sometimes it seems like it's a long ways away, but every day brings us one day closer to that time. In the early stages of our "NICU Experience", we were too worried about what tomorrow may bring, or what challenge the twins would face, to even consider what things would be like 3months in the future.
Has the time flown by?: HECK NO..... It seems like it's been FOREVER. We must have walked those halls several hundred times by now, and we've got another hundred or so more before we can make The Big Trip home. So, looking back on the whole experience, it really does feel like it's been a long long time. However; there have been several times where a week or so has felt like it's gone by in a matter of hours. Perhaps those times were blessings in disguise as those there the times that we were under extreme stress & dealing with serious health issues.
Although there are some weird cases where if I try to recall a specific incident, it does feel like time has moved swiftly. I think it feels that way because when I think about one incident, I can't help but think about ALL the other things that have happened in between that specific moment and present day.
In the beginning; could we imagine where we are today?: No way.... In the first month or so, things were sooo crazy. At that time, we hoped and prayed for each and every "good day". We were often living hour by hour, visit to visit. We didn't dare consider or dream of these days for fear of jinxing our babies or somehow setting ourselves up for extreme pain if things took a turn for the worse. In those days, the only other babies we ever saw were either full term, or 35wks and older, so it was pretty hard to imagine our fragile little angels looking like real babies.
As I sit here, reflecting over all the crazy, insane, terrifying, depressing, amazing, joyous, heartwarming moments of the past 12 weeks, it's hard to comprehend how short a period all these experiences have happened in. In many ways, it seems we've lived a lifetime in those 3 months. I then think about what the next 20years may hold for our family. Some things frighten me (the teen years), but some things make me all misty. I think about the life lessons and wisdom we can impart on our impressionable young ones, all the wonderfull experiences we can enjoy together. One thing I can count on, it's going to be a crazy ride for sure. Nothing in our lives has every really been "normal" or easy, and I don't see that changing any time soon.
Ok.... Enough of all that.
The kids have been doing great. They are adjusting to the reduction in canula flow (down to 1L) & the increase in bottle feeding (2x daily). They continue to bring joy to our hears with the briefest of looks, or the smallest sound, even a slight smile.
When I got to the hospital today, Kim was holding Blake. When I knelt down beside them and started talking to them, Blake cracked his eyes and looked over at me. As I continued to talk to him, and stroke his lil head, he would crack a little sly smile. Words can not explain the feelings I had at that moment. To have him react that way to my voice and touch is nothing short of amazing! Not wanting to neglect Jenna, I got her out of the crib for a little family bonding time with the parents.
As we were leaving the NICU for the nightly shift change, we debated our evening plans. Both of us have been running on fumes lately and both agreed that we needed a bit of a break. Sooooo, with much indecision & sadness, we decided that we would go get dinner, then try to relax at the house. We've called several times to check in, and Amanda has reassured us that the kids are doing great.
And now it is time to get some sleep so we can wake up and do it all over again. That we have this opportunity is a blessing in itself. Many thanks....
Both of them continue to do great with their breathing. They continue to progress and the doctors continue to challenge them. Sunday they moved from 2liter to 1liter on their flow (canula measures the air pressure in liters). Along with the obvious mechanics of breathing (breath rate, ventilator, CPAP, canula, etc) how they process that breath is also very important. You may recall us mentioning their O2 Saturation. That is how much oxygen is in the bloodstream and that is also an indicator to how well the lungs are processing the air they take in. As lil micro preemies, they wanted their o2 saturation to be between 80-90%, which closely mimics the situation they would have experienced within the womb. As they got bigger, the Doctors upped the parameters and their expectations to 84-94%.
Well.... Monday one of the Dr's decided to change the parameters to 94-98%. The reasoning behind this was to continue to challenge them, and to prepare them for what will be expected in order to leave the NICU. This is a pretty narrow window, so the monitors were constantly going off, indicating that they were either below, or above their set parameters. Another consequence to this change is that they needed higher amounts of o2 in order to keep them within those parameters. By this time, we have become pretty used to hearing monitors going off and making all kinds of racket. However, this whole time we've been working toward getting them on lower & amounts of o2 through their breathing assistance, so this had me a bit concerned. As part of that, I was also very concerned because high amounts of 02 is the cause of ROP & Rush disease (eye problem that Blake experienced). He had just pulled through that difficult time, & I didn't want to take any chances of putting him right back into it. The nurses and Dr's assured us that the amounts of 02 he was on, was no danger at all. That helped reassure us, but it kept nagging at me anyways. While I trust the Dr's immensely, ultimately our babies lives and health are our responsibilities, so this was still stressful. Adding to the stress was that Dr. Su has been off for the past few days and we haven't been able to talk through this change with him. All the Dr's are great, but we have developed great communication and rapore with some Dr's more than others.
To our relief, a separate Dr. was on shift today and decided to change the 02 saturation parameters to 90-98%. A rather small change, but it's easier for them to maintain those levels.
Now to the fun part.
Bottle feeding!!!! It's been nothing short of amazing to hold our little ones and feed them from the bottle. Bathing them and bottle feeding has really made me feel like a Dad, doing normal parent duties.
Jenna has been improving nicely with her bottle feeds. She's doing more breathing and gulping less of her milk. This was a pretty freaky situation when I first saw it. It's amazing that their brains are not developed enough to have the automatic breath response, so she could just swallow and swallow, without taking a breath to the point that she would turn blue, her monitors would start going crazy and her 02 saturation would get Very low. Its safe to say that I could go the rest of my life without seeing one of my children blue like that again. But....that is something that is not uncommon in premies, and is something that we can help her with. We just need to pay attention and follow the speech therapists instructions.
Blake has been doing wonderful. Due to his cautious nature, he hasn't had much of a problem. He takes a few swallows, pauses to take a few breaths and look around. The only down side is that when we hold him, he gets way comfortable, forgets that he's feeding & falls asleep. So we have to stimulate him a bit and he'll start feeding again. Tonight I made an effort to get him fully awake before I sat down to feed him. So, I unwrapped him (he was swaddled), checked his diaper, played with his lil hands and feed, and generally messed around with him. It may have worked as he finished his bottle in 30min, which is 15-30min faster than he's done in the past.
To round out a great day, Dr. Cho gave orders to increase their bottle feeds to twice daily, and to increase their canula flow rate to 2liters while they are feeding in order to make the work a little easier. It sounds funny, but the act of feeding really makes these little ones burn a bunch of valuable calories, & not having to work hard breathing will help quite a bit.
On the way out of the NICU we ran into our friends the O'Briens. We were able to do a little catching up on how our little angels have been doing. We really miss being neighbors, and seeing the girls. Please keep them in your thoughts and prayers as they are in ours.
It's way late and I fear I've been rambling, so I'll wrap things up.
Tuesday, April 7, 2009
Monday, April 6, 2009
It has been very nice to be able to feed them. We are really feeling like we are easing into more of the parental duties between the baths, feeding, rocking, taking their temp, and changing diapers.
We were do happy to see that Anna and April were working in Bay 7 today. I brought in some bunny hats that I found at Babie R Us that are really cute. That and I brought in some outfits that a ffellow NICU mom gave us as a gift. We dressed them p and had a photo shoot. It was GREAT!!!! We got some fantasic pictres! I promise to post them later or in the morning. You've got to see them! Wow, what great nurses we have!!!!!!!!
Sunday, April 5, 2009
Jenna did a bit better tonight with her bottle feeding. She seems to be getting the hang of it a bit better. She took the whole bottlw in about 23 minutes. Blake did very well and did not desat. He took his time again and foght sleep towards the end. He finishe dit all but 5cc. Not bad at all!
Well, it is late and I am wiped out. I will try and post new pics tomorrow.
Jenna did better a bit better tonight on the bottle. She still likes to gulp it but tended to breathe a bit better. She did take the whole bottle in 30 minutes which is good. Blake started off strong and alert. He does real well breathing while eating. He took a long time to eat, as he kept drifting off to sleep. Once he finally finished eating, he was alert and was looking around a lot.
Can't wait til next time.....
Saturday, April 4, 2009
So, the big change that occupies many of those thoughts is how great a feeling it is to feed my babies!!!! After more than two months of being a mommy, we are finally able to hold and feed them. Although it is one bottle a day so far, it is the highlight of my days no doubt!
While feeding them Thursday, I felt I got to know them even more. So much of how they handled the feeding taught me more about their personalities. Jenna's scheduled feed was first. I observed the Speech Therapist while she initiated her feed so that she could assess her stage of development. Boy! We thought she was a little spitfire before, there's a lot more where that came from. As soon as she realized that something was coming out if that "paci", she went to town!! She was so excited that she couldn't control herself from gulping. So, the trick with her is to help teach her the pattern. We will have to let her suck on the bottle 3-5 times and take it out in order to make her breath. Through time she will pick this up. But now, she will gulp gulp gulp until she turns blue if we let her. She would much rather eat then breathe-haha. Sounds like she loves food like her mommy. She even continued to make the sucking motions when I tok the bottle out of her mouth. She didn't quite realize that there wasn't anything there anymore, that or she didn't have enough control to stop the motion. That just shows that her development is a bit premature-understandably so. She has strong mouth muscle tone which is great and throughout the 30 minute session, she was NOT giving up. She knew she liked it and although it was taking a lot of her energy to practice this new skill-suck, swallow, breath,-she was not going to let something like being tired get in her way! Even after she was finished, when we layed her back down in bed, she rooted around for more. Luckily, she took the paci for a bit. Although when presented with the paci, it was almost like she could've swallowed the thing whole if we let her. Too cute. All in all, with some more practice and reminding her to breath, she will do just fine. She has lots of vigor! Way to go Jenna!
So, while I was feeding Jenna Blake was giving out his little warning calls to tell us he was hungry. April told us that they are quite different in that respect. When Blake gets hungry he gives out a few little warning "ehh"s until he gets angry and hungry and then he will let it all out. Jenna on the other hand, when she gets hungry, she is angry and hungry right from the start and utilizes those lungs to tell ya all about it. So, once it was Blake's turn Elizabeth (Speech Therapist) started him off and assessed his development. Well, many nurses predicted that Blake might be the gulper out of the two. Well, he surprised many. He began looking around and was very alert. It was as if he was trying to figure out why we were all four looking down at him while Elizabeth presented him with this "foreign" object. You could almost see the wheels turning in his head. "Hmm, this kinda feels like my paci". Then he decided to test it out. A look of confusion crossed his face and he fluttered his eyes and pulled back a bit. Apparently he had enough strength to get some milk from the nipple. We let him settle down a minute then offered it to him again. He kept looking from side to side and really put some thought into what his next move would be. It was so darn cute! Throughout the feeding, he didn't forget to breath at all! He was very cautious the whole time but with what seemed to be much thought put into what he was doing, he did fantastic. He may need a little stimulation from time to time since he does pause to, what I like to consider, think about it.
Sooooooo, I am wondering if Blake will be one to think about things before making decisions. Maybe be a little more cautious before jumping right into things while Jenna may be a bit over excited and jump right in. Hmmm, impulsive maybe? Oh boy! We are in for a real surprise with these two.
Well, time to work on the babies' room. I'll post more later.
Blake and Jenna are doing well today so far. They are both on 21-23% oxygen. Great job!
Friday, April 3, 2009
The speech therapist started a bit early, so I only caught the last few min of Blake feeding, but I'm glad I got to be there. He would suck suck suck, swallow, breathe, then look around as though he was trying to figure out exactly what he was doing. Then he would look up at mom as if asking for reassurance. It was an awesome sight to behold.
As Blake was finishing up, Anna & Kim began filling me in on the whole feeding situation. They were both quite giddy from all the days excitement. haha
Both of them did fantastic. Jenna was Soooo ready to hit the nipple, that she got a lil overzealous. She would just go crazy on the bottle and would forget to breathe. To help teach her the technique, Kim was told to withdraw the nipple and stimulate her by rubbing her chest. This should teach her to stop, swallow, take a breath, then she can continue again. Kim told me that when she'd remove the nipple, Jenna would continue to suck for a few seconds, then open her mouth wide and search for the nipple again. She REALLY enjoys feeding from nipple vs. a feeding tube down to her stomach. I can't really blame her. But, all things considered, she did great her first time.
Blake was completely different. He started off very cautiously. Kim said that when he first hit the nipple some milk came out, he swallowed, then got this puzzled look on his face. This nipple, wasn't behaving like the passie he's been practicing on. He gave it another try, got some more milk out, thought about things for a sec, looked around, then decided he was liking this new development and continued nursing from the bottle. He had the suck, swallow, breathe technique down on the first try.
Both of then did great keeping their O2 saturation up while they learned to nurse from a bottle. Neither of them had any Apnea's or Bradies. Soooo they passed this important test with flying colors.
Kim and Anna took tons of pics and video, which we'll be putting up very soon.
After feeding we just hung out and got some relax time with the kids.
At the NICU shift change we went home to eat dinner, then head back up after a short break. Tonight was also bath time!!!!
We got back to the hospital and Janice was just getting everything ready for us to give them a bath. She's awesome about saving neat things for us to experience.
When we got there, Blake had been working up a Big stinky. Mom said she was up for the challenge, so she changed a horrendous diaper. After he was all naked and more or less clean, we weighed him and dropped him in the tub for his bath. lol He rang up at 4lb 15.7 oz. I joked that if he had saved that massive diaper for a few more min, he certainly would have broke into 5lb territory. :) The bath went great. Blake didn't really seem to mind and didn't cry at all. Dried him all off, then let mom get him all dressed and snuggled in. I can't say I'm really a big fan of dressing and all that. Guess I didn't play with enough dolls as a lil boy (not a bad thing).
Then it was Jenna's turn. Mom was going to give her a bath, but since she changed Blake's diaper, she said I could handle Jenna's. I got lucky and she had a pretty clean diaper. After getting her undressed and clean, I dropped her on the scale. She weighed in at 4lb 13.2 oz. After the weigh in, I just proceeded to bathe her, completely forgetting that it was Kim's turn. Once I realized (about 1/2 way through) I offered to let Kim take over, but she was happy to watch and take pics/video. Oops, sorry mom.
Got both of them cleaned up, dressed in fresh clothes, and snuggled down for some well deserved rest. After that we just hung out, talked to Janice, and gazed at two lil darlings sleeping peacefully.
A wonderful day indeed. One to remember for a long long time.
Thursday, April 2, 2009
Dr. Su called me yesterday evening to congratulate me on Blakes wonderful eye exam. He also told me that the twins were telling them that they were ready to try bottle feeding.
Arguably the biggest thing that has kept Kim and I grounded and focused on the positive has been our focus on the upcoming milestones. This whole time, we were told that they needed to be on canula with a flow rate of less that 2 liters (that just measured the amount of air going into their nose). Right now we are at 3L and it'll probably be a gradual reduction, so we were not expecting bottle feeding for another week or two.
Several of the nurses have been commenting that the twins have been rooting (sucking on the pacifier) so well that they doubt that they'd have any problems with bottle feeding. Sooooo Dr. Su and the rest of the Dr's decided to take the somewhat unorthodox move and let them try bottles while still on high flow canula. One of the other Dr.'s came from a NICU where they would bottle feed while kids were still on CPAP and they had great success (as long as the kiddo was ready), and our twins seem to be telling them that they are ready for some bottles.
Sooooooo.... today will be a BIG day as the speech therapist will attempt bottle feeds with Jenna at 1:30pm & Blake at 2:30pm. The speech therapist will also evaluate how well they take to the nipple and if there are any skills that they/we need to work with them on. I'm stuck at work, but mom will be on hand to witness this momentous occasion. She's also be armed with camera to take lots of pics and video. My work project was just postponed, so I'm seriously considering sneaking out of work to be with my lil bundles of joy. It's sooooo hard to be away from them for any length of time. :(
Another thing that is just too good to be true; now that they are on canula airway (which is MUCH less restrictive) we can pretty much handle and hold them as much as they can tolerate. So we can roll into the bay, say our greetings to the nurses, and just pluck them out of their crib and hold them. It seems like every day we are getting closer to being "normal" parents. It's a good feeling. :)
While we have had some really great news in the last few days, we have learned our lesson when it comes to being complacent and too comfortable in their progress. We really are enjoying all the great milestones they've reached, but remain aware that at any min things in the NICU can change drastically. With every good day, comes more health and more good days, however there are still some challenges that lie ahead. The first and biggest is taking to bottle feeding, then there is always the possibility of an infection, NEC, food digestion, breathing issues, etc. While the chances of complications goes down every day, they are still present and we can not forget that. But..... in the mean time we will bask in their success and enjoy every minute we get to spend with them.
Here are the stats.
Jenna: She's gaining on her lil brother. 4lb 13oz!!!
Blake: Still holding a lead, albeit a shrinking one. 4lb 15oz! He's ready to break into 5lb territory.
Earlier this week, Kim and I speculated on when they would break the 4lb barrier.
I said Fri, but probably Sat. Kim said Sat. Looks like he may surpass both our expectations (as usual).
I thought Jenna would hit 5lb Sun, probably Monday. Kim though Monday. Looks like she may prove us wrong as well.
I just got an update from Kim.
Dr. Su decided to begin weaning them off canula support a little bit. He's moving them from 3liters to 2liters. They normally drop by 1/2 liter increments, but he feels that they are doing great and that they can handle the change pretty easily. They made the change this morning at 9am and the kids have been doing fantastic.
Wednesday, April 1, 2009
I got to the hospital at 11:30 and started to rock Blake. Just when we got settled in Dr. Harper arrived. Up until then my anxiety was pretty much under wraps. I gave Blake a kiss and put him back in his bed so that he could get checked. Jason was on his way, he planned to be there for the exam. However, the surgeon got there a little quicker than we expected.
Jenna was examined first. Poor baby didn't like that her eyes had to be pried open, she cried a cry of "I don't like this!" which my interpretation was "mom, make it stop". However, she did not desat and she calmed down pretty quickly once it was over. Good news...no, great news....Jenna's eyes look good! She had been released from Dr. Harper and will get rechecked by the opthalmologist in two weeks. Then, it was Blake's turn. He too did not like the prying open of the eyes and gave out the same cry. I just wanted to console him so badly. I needed to stay out of the way though so just talked to him a bit while he was being examined. Left eye still looks good. Then off to the right eye to check on that traction we have been so so frightened about. I was already losing the battle of kicking back the tears when I heard the good news about Jenna, then Blake's right eye. Dr. Harper turned to me and said that his the traction has regressed!!!!!!!!! The flood gates were really starting to budge then! Relief......grateful.......and happy, such a great combination to feel. Much nicer than fear, dread and anxiety. There has been such a huge weight lifted. I can not express how very grateful we are. There are no words. Blake will also be followed up by the same ophthalomologist in two weeks. He did have a bit of bleeding in his eye but I was assured that it would go away. I text'd Jason to let him know; although he was trying to get there asap, the surgeon was very thorough but very fast as well. Jason showed up about five minutes after he had left. I was holding Blake and patting Jenna. As I was doing this, I kept envisioning managing care for both Blake and Jenna at home during the times I will be with them on my own. I know I am going to learning many tricks of the trade when caring for both. I can't wait! Anyways, Jason came is with such a hurried yet relieved look. I gave him the update and then we spent some time rocking the babies. It is pretty quiet in bay 7 so it was nice being able to sit and rock and relax all together. I look forward to more moments like those.