Sunday Mornings

( Pictures taken last night )

Sunday mornings are probably my favorite time of the week. Tracey and I get up slowly, enjoy coffee together and watch the Sunday Morning News. we're rested from Saturday. We're looking forward to a relatively slow Sunday and think of what my upcoming week may bring.

I now wonder how things will change once Colby comes home. Will our Sunday mornings be a thing of the past? I think they'll change, but we'll still enjoy them just the same. I guess in the beginning it will be much like anyone with a newborn. Dirty diapers and feedings will fill our days. He will most likely have some residual support that will follow him home from the NICU. I'm not exactly sure what that may be but I've read about other preemies who come home with certain monitors.

Then, as the years pass, much will depend on his development. As many children hit milestones and gain independences, Colby may or may not achieve some of these. It all depends on what the brain bleed has done. I used to wonder how early Colby and Avery would walk or talk. Funny how things change so quickly. I now wonder IF Colby will walk or talk. My last posting about having definitive answers....this is exactly what I mean. Nobody can tell us for sure what will come. At time that bothers me. Then I feel better inside because I know with 100% certainty that no matter what happens, we will be fine. I believe that if Colby does end up with some limitations, but deep down inside I feel very strongly that he'll be OK. I know that he will have the best opportunities to do as much as his body allows. Not only from medicine and therapy have to offer, but because of how Tracey and I intend to raise, support and empower him. I firmly believe that although at times you cannot change the environment or situation you find yourself in, you can always choose how you react and that alone enables you to control certain aspects of your life, even with others are out of your hands.

Hopefully by year's end I will be sitting on the couch one Sunday morning, enjoying coffee with Tracey, watching the Sunday news and feeling rested while looking ahead to the week to come. There will be something different through. Next to me will be Tracey holding Colby, giving him his morning bottle while. I'll be smiling ear to ear while I update this blog about how wonderful it is to have our boy home!

Black and White

(B&W picture of Tracey and I having coffee during our overnight stay in Stockbridge last week)

Sorry for not posting in a couple days. It was a long week with work and all and yesterday was a tough day for Colby.

The doctors were a bit worried yesterday because he had a list of things going on. His alveoli in part of one of his lungs had collapsed. He had stopped urinating. Milk was backing up in his stomach and it looked like his digestive track wasn't working properly. There were some other things with his blood levels that I honestly can't recall right now. The doctors said they stopped his feedings and were going to do both a full blood test as well as a spinal tap to ensure that if he had an infection, that it wasn't meningitis.

We had been enjoying the last couple days as they have been going relatively well for him. But his was a taste of reality for us. He has a long way to go yet and we need to keep things in perspective.

Today he's doing better. The blood showed a very high level of white blood cells, so they started him on antibiotics and he's reacting well to that. Nothing has grown out of the cultures they've done. They aren't feeding him yet. That will be a couple days away. While they were doing the spinal tap, they drained a little extra fluid out to relieve the pressure in his head. As a result, his head circumference went down a touch this morning. His lungs also look like they're back to normal for him.

All in all, he did wonderful with this latest hurdle. He'll be on antibiotics for a while again now. They'll need to watch him to ensure that an infection isn't setting in somewhere. The cultures may show what/where the infection is, but if now they'll need to treat him as best they can.

As maybe you can tell, I'm tired tonight. I don't feel very animated and I'm still getting used to working a long day then going to the hospital at night. I don't know if that's anything you really get used to or not. Add the emotional ups and downs and you've got a recipe for pure tiredness.

We'll see what tomorrow brings. I snapped some pictures tonight while at the hospital and will post a couple tomorrow.

If you ask Tracey, she'll quickly tell you that I prefer things black and white. I want to know what the situation is so that I can understand and prepare. Colby has been a wonderful influence on me because there isn't anything black and white about his situation. Just goes to show you that you are always able to change and adapt in order to best get through things. All in all, I think we're coping well and riding the ups and downs as best we can. Tracey and I continue to get through this journey together. I'm the left foot, she's the right and together we keep walking along.

Colby the Fighter

"And in this incubator, weighing in at a whopping 2 lbs, 4 ounces, wearing....well....the white diaper and crazy little hat.....Colbyyyyyyyyyyy Reeeeeeeeeeeeeeeeeeeeeed!!!" Yup, he's our little fighter. He's doing well again today.

I'm on appointments all day but often look at his pictures that I have saved on the computer. I love this picture. It was taken with the other recent ones last Monday night. You see the CPAP on him. He's back on the ventilator. If you were to look at him today, you'd see that tube taped to his mouth like in the older pictures. The picture cracks me up because it looks like he was trying to figure out what his hand was up to. Actually, if I think he was trying to mess with the CPAP. He's always pulling on his tubes and monitors. I still think he's trying to get the nurses attention by making his monitors beep. Sorry his feet are blurry. He loves to squirm around when he's on his back.

These past couple days have been wonderful for him. Relatively little news, which in his case is good. Are we in the clear then? Unfortunately not. He has a lot ahead of him. He needs to breath on his own. He will have to have surgery again to reconnect his intestines together. His oxygen level continues to bounce around and that needs to stabilize. He needs to gain weight. Thus far he's fed by a small tube that goes in his nose of all places, and meanders it's way down into his belly. So he'll need to get to the point where he can swallow and all. His head continues to worry us and ongoing ultrasounds will monitor the progress there. Things like vision impairments, any mental limitations or issues and muscular or neurological complications will all present themselves down the road. So.....we're having a couple good days and we'll take them with a smile !!! Everything else, we'll just have to tackle as they come along.

Colby is officially one month old today. To think of all he's been through is amazing. He's a strong little fighter!!!

Just one month ago

Not too much to report on our little Colby tonight. He's doing well, no real changes. His head was bigger again this morning. I remember when we first entered the NICU that someone gave good advise. "Don't micromanage the details in the NICU." I can see the value in that statement now. We will drive ourselves crazy watching every little detail and things will vary from day to day. Good advise, but hard to adhere to given our situation.

It's amazing to think that just one month ago, we were living in the hospital and still very pregnant. The picture above was taken at exactly 25 weeks gestation, five days before Colby and Avery were born. For those of you who don't know the beginning of this story, twin A (which was Avery) had a ruptured membrane at 22 weeks 5 days gestation. That put Tracey into the hospital on many different drugs trying to keep her contractions at bay. The nurses would come in every 3 to 4 hours, day AND night to check the twins heart rates, their movement, etc. Not a good schedule if you want to get some good rest. Some of the medications she was put on were absolutely horrible. If you've ever heard someone tell stories of being put on magnesium to keep contractions away, you know how terrible the experience is. Her belly was already quite big at this point. I can't image how large she would have gotten if she went full term!

Tracey and I are officially minivan owners. We went to sign all the papers tonight and they'll deliver it tomorrow. It has a little mirror that drops down from the ceiling to give the driver a view of the back seats. Tracey and I had some fun when we were test driving it. I popped the mirror down and talked as if Colby was back there "Colby, pick up those french fries off the floor! Ooops, he just puked on the seat!" Ahhh, yes. Looking forward to good times.

Quick update

I got to hold Colby AGAIN last night !!!! Good, good stuff I tell you. The doctor sat with us for a bit and gave us the latest on his head, his belly, etc. He reiterated that we will still have a long road ahead of us. His head will probably go back and forth and growth alone is important. So to see his head get larger isn't necessarily a bad thing. They aim to have him off his colostomy bag around the time he comes home, which we hope to be around the end of the year. I asked about his eyes. One concern with preemies is the development of their eyes. He said that they will check his eyes in the months to come to see if his retina has formed properly. If there are issues, they can do laser surgery to allow him to at least have central vision. His peripheral vision could be impaired. All in all, a good outlook for now. Things like cerebral palsy wouldn't be diagnosed until later in his development, probably in the first couple years of life.

I think Tracey and I had been harboring a lot of stress and the last couple days have allowed us to relax a bit. Both of us have feel so tired and exhausted. So last night she fell asleep on the couch around 7:30 and we both went to bed around 8. Slept like babies and feel much better this morning.

I'm off to a full day today. Some of you have sent e-mails asking what I do. I'm a financial advisor. This has been wonderful during our journey because it has allowed me to make my own schedule and be with Tracey or the twins when they needed me most. Tonight Tracey and I head up to Mass to sign the paperwork on the minivan and then if we have enough energy left, we'll swing by the hospital.

As always, thank you all for your continued support, e-mails and comments. I'm amazed at how far reaching this blog has become. People must have shared it with others as I get e-mails from people all over the US! It makes me feel good that their story is read by so many.

YIPPIEEEEE!!!!!!!!

(Picture taken last night. The tube you see was his CPAP. That's now been taken off again and he's back on the ventilator) I just got off the phone with the NICU and for the first time in 4 days, Colby's head hasn't gotten any larger !! That's WONDERFUL !!!! I feel so relieved. The doctor said that this could be a roller coaster and his head could start to grow again. But hell, every day that it isn't getting larger means a day that he's more comfortable and less of a chance of complications. Ideally, his little head would go down a tad, but maybe he's waiting until tomorrow to give us some good news then too.

He is back on the ventilator. That's what we expected. I'm sure he's not happy about that but it's in his best interest for now. They've upped his feedings even more now. He's up to 2 cc's per hour. This is a huge step for him as just a week or so ago he wasn't even getting any feedings. With his issues breathing, I don't know if he'll got to a bottle anytime soon as that would mean he'd need to coordinate his swallowing and breathing. I just don't think he's up for that yet.

I'm looking forward to going to see him today. Tracey and I will head over there mid afternoon or so.

Priceless

Parking for my first appointments today.....$3.00

Gas used while drive all over the state today....$9.00

Meals, coffee and water while on the road today....$12.00

Wrapping up a long day at the hospital where I got to hold my son.....PRICELESS

Good things do come to those who wait. As you can see, I got to hold Colby for the first time tonight. I wasn't expecting to be able to do so and was coming from a client appointment, so I had a dress shirt on with a T shirt underneath. To keep Colby warm, they had to tuck him under the t shirt. Sorry for not being able to see much of him. You've gotta love his crazy little hat they have on him, huh?

He was doing well. His ultrasound came back with no change to his brain bleed. That's good news. Yeah, to see it go down would be better but maybe we'll see that next ultrasound. A little more hydrocephalus, but we knew that from his head measurements. They even had him off his ventilator. He had what they call a CPAP which blows constant air into his nose. He seemed very happy to have the breathing tube out of his mouth. When he has that he can't move his head much and he looks very uncomfortable. He was doing OK with the frequency and depth of his breathing, but his lungs aren't mature enough and he's wasn't getting enough oxygen from the air. He'll go back on the ventilator tonight. Hopefully he'll be able to try to get off the vent again soon.

They've also upped his feedings and he's doing great with that. He's now up to 1.5 cc's per hour.

He's just adorable. He will watch me when I peer in. When I put my hand into his incubator, he'll watch my hand to see what I'm up to. He watches his stuffed doggie that you see in some of his pictures. We're glad to see that number one he can see and secondly that he can follow with his eyes. Also he can hear us. When we talk he'll sometimes open his eyes. Things you probably don't think much of but given our situation, we're quite happy to see. He'll grab onto my finger and hold onto it. That's my boy !!!

After a rough couple days, things are better for now. The doctor will do another ultrasound on Thursday. We'll just have to watch to see what that brings.

Tough Times

Everybody has tough times. Depending on how you look at things, some things are tougher than others.

These last almost 2 months now have been extremely difficult on Tracey and I, on our family, on our friends and on little Colby and Avery. In sharing our story my eyes have been opened to a couple things. Number one, we're not alone. I can't tell you how many e-mails I get from other people going through hard times. A couple just lost their twins this past week. Another woman has been trying to get pregnant, is now pregnant and just had a miscarriage this weekend. Another friend has been trying to get pregnant, is finally pregnant but just learned she needs to have surgery to have her gal bladder out which could jeopardize the pregnancy. So what to make of all of this? I don't know really. Sometimes there doesn't seem to be any rationale as to why things happen to people. So don't bother trying to figure it out. Just deal with it as best you can and move on.

Secondly, you can deal with bad situations in many different ways. Alone our story is just a sad one. Tracey and I do our best to keep our chins up and make something good of our situation. I wonder sometimes if I take things too lightly. When I see people I'm relatively upbeat. I see other babies and am so happy. I love to hear about how our friends who are pregnant are doing. I see pregnant people and talk their ear off about pregnancy, babies, etc. In general, I'm dong OK. Shouldn't I be sad? Well....I cried on the way to an appointment this morning. I cried again on the way back. I cried when I got off the phone today and learned that my son's head has grown again. So I'm as upset as the next person. It's all in how you look at things I guess.

I hope that anyone following Colby and Avery's story takes away an appreciation of life and the hope that if they find themselves in a tough time, that they know tomorrow will be a brighter day. Take time to notice the good things, the things you DO have, not just what you don't. In the worst of times finding something to smile about is the best medicine. All this doesn't make things easier, but sometimes it makes it easier to get through them.

As you may have caught from up above, Colby's head is again a bit larger today. That's three days in a row now. Tracey talked with the doctor and found hope that this is probably not a result of a worsening brain bleed. So that's what we hold on to for today until the Ultrasounds come back. That will confirm that his brain bleed is still ok. He is off the ventilator today and hopefully will stay off this time. He's also continueing his feeds and hopefully the doctors will up that again.

I need to head off and give a presentation at 3:30. So I'm going to make the best of the trip, open the sunroof and listen to some Dave (those who know me see that this is an obvious reference to Dave Matthews). I'm heading to the hospital after the presentation and I'll do my best to take some pictures of our little boy. You should see them posted this evening.

Happy 4 Week Birthday Colby !

He's 4 weeks old today. You've come a long way my boy!!!!

Sunday Evening

( Picture of Colby from a week or so ago)I took a day off from the hospital today. There was only one other day when I didn't got and that was because I was sick. I just needed a break today. But now I miss him dearly. It's about a 35 minute drive to the hospital, so it's not like it's down the road. Tracey went and spent some good time with Colby. She said he's looking good today. The doctors will do another ultrasound tomorrow to see what's happening. They usually take a while to get the results back so hopefully be tomorrow night we'll have a better feel for what's going on with his hydrocephalus.

I found some groups and websites online regarding hydrocephalus. It's a survivable condition, just creates some problems. Obviously I wish he didn't have any issues, but if he does, we'll just deal it. As long as his Brain Bleed doesn't progress, he should be ok.

Tracey and I went and got the paperwork going for a minivan yesterday. She should be in her new wheels by the end of this week.

I've got a busy week in the office this week. That's a mixed blessing. It's good for our finances. It keeps my mind occupied. But it makes for a long day.

Anyway, sorry for venting earlier today. We have our ups and downs but after I vent I take a look at all that we have going for us and there's plenty to be thankful for.

I'll update tomorrow evening on what we find about Colby.

Mixed news this morning

I called the NICU this morning as we usually do to check on Colby. There was a lot of good news. They continue to up his feedings. Now he's getting 1 cc of breast milk every hour (up from 1/2 cc). They continue to ween him from his ventilator by lowering the oxygen levels and the pressure of the breaths the machine gives him. However, his head has gotten larger for two days now. Yesterday, it grew 1/2 a centimeter and today yet another 1/4 centimeter larger. Those number sound so small but Colby is tiny to begin with.
Tracey and I are somewhat numb. We want so badly to keep hoping that this is nothing to worry about. Or that this is something that may subside. But we're very scared because this is the route Avery took. And even if things level out for Colby, it could mean shunts and long term issues.
We want to speak with the doctor (when we call we get a nurse and they can't do much but recite data. They can't offer any opinion or outlook of what may come). Hopefully when we're in the hospital today the doctor will be able to offer us some hope. Colby will get another ultrasound tomorrow or Tuesday and that should shed some light onto what is going on inside him.
I'm finding Colby's situation a little more difficult to deal with. Maybe it's because the recent loss of Avery. Maybe it's because he's my little boy and I want so badly to teach him all the "fatherly things". Maybe it's because he looks so well and the thought of him deteriorating just kills me. I'm not sure.
We've come a far way. Four years of trying to get pregnant. Surgeries for both Tracey and I. Countless doctor visits and attempts to get pregnant. Then Ovarian Hyper Stimulation Syndrome once Tracey got pregnant which made her belly swell in a matter of a week as if she was 6 months pregnant. Next being hospitalized at 22 weeks pregnant and going through all kinds of treatments to keep labor a bay. Colby and Avery came and it was a daily roller coaster ride. Then we loose Avery. A good couple days from Colby and now this. You have to think that our luck needs to change for the better at some point.
Just as the e-mails used to serve as my outlet, so now does the blog. And after stating all of this, there is still much to be positive about. There's still hope that Colby will get better. Tracey and I are relatively young and no matter what our outcome, we've talked about expanding our family in the years to come. I have a wonderful stepson. A fantastic family. We've worked very hard to get many things in our life to where they are today and we are extremely thankful for all of them. Most of all we have each other. Together Tracey and I can get through anything. It's just this one detail of having a healthy baby that for some reason just gives us quite a bit of trouble.

A couple good days

(Picture from last Tuesday, Sept 18th)

The last couple days have been great for Colby. He's been moving in the right direction in a many ways....his tolerating the feedings well, his head size has been staying the same which would indicate that the hydrocephalus isn't getting worse. We talked with the doctor yesterday and he said that the ultrasounds came back and looked as if his brain bleeds were actually getting a little better !!! That's HUGE !!!! Although we get very excited to hear about the good news, we know that he has a long way to go until he's in the clear. So we do our best to be happy, while understanding that things can change quickly.

This morning is a good example. I called just now to check on how he did last night and things were generally OK. His head is a little bigger this morning. We don't want to be alarmed because it could simply be the way the nurse measured it, or it could be a brief swelling that will be gone tomorrow. This is the kind of thing we loose sleep over. He's also getting another blood transfusion this morning. I'm not too sure what to think of that. He's gotten them in the past and I guess if that's what he needs, then that's fine. I just don't understand if that's something to be concerned about or not. Because he's so small, he has his own bag of blood that they use while he's in the NICU. So it's not like he's getting all different people's blood. They said he's been doing so well with his feedings that they are going to a continuous drip into his belly now. That's a big step. He's never gotten that far before!

Tracey's car is on it's last leg. We're now searching around for a minivan. There are a lot of beautiful ones our there...but we just can't afford them. So we've found a couple that are 07 models with under 10,000 miles on them and are heading out today to test drive a couple.

Also, Tracey got the OK to go back to work in the beginning of October. That will help her regain another aspect of a "normal" life again.

Can you believe we have just over $2,000 raised in Colby & Avery's name for the March of Dimes !!!! That's all because of all of you. We see your names when you donate and Tracey and I can't thank you enough. Hopefully some day years down the road I will be able to tell Colby about how the story of him and his sister raised thousands of dollars which went to help other preemies and their families. It's so important to Tracey and I to do our best and use our situation to help educate people about premature birth and for Colby and Avery's story to leave a positive impact on people. Thank you all for your support.

Scott & Tracey

Colby's Doing Well

Colby has had a couple of wonderful days ! We stopped by the hospital yesterday on our way to Stockbridge. The doctors had good news and reported that the swelling of his head had gone down and that his Brain Bleed had not gotten any worse. I was flying high after I heard this !! I could have made it up to Mass. without a car after hearing that great news !!! Yes, we totally understand that things could change at any time, but as Tracey put it so well "If we can't enjoy the good news, then we can we enjoy right now?" Both yesterday and today, Colby was alert, squirming all about and seemed relatively happy. He hates the tube he has that goes into his lungs. He's always pulling on that. Poor guy.

His heart rate keeps going up and his blood pressure keeps dropping. The doctors said this could be a sign of a couple things. First...it could be just his situation and nothing to worry about. Secondly, it could be a sign of an infection brewing. Or, it could be another part of his intestine that's died. Lastly, it could be that the hole in his heart has reopened. If it's an infection, it should show itself in the next couple days. They don't think it's his heart, but will keen an eye on it. And blood work would show anything with his intestine.

They have started him on breast milk again and thus far he's doing well with it. It's not to give him much nutrition at this point as it's a couple drops that are fed down a tube into his belly. But if he tolerates this OK, they will gradually increase the amounts and frequency to the point were he would get a nutritional benefit. He's gained a little weight and has broken the 2 pound mark! Amazing to think that our little guys only weights 2 pounds !

So you've got to be wondering why I put a picture of someone's feet up above.... Tracey and I needed to take an escape from everything so we went to the Red Lion Inn yesterday up in Stockbridge, Ma. For those of you who have never been there, it's an old inn within a quaint New England town. We like it's charm and the surrounding area. So we're sitting out on the front porch yesterday afternoon enjoying a glass of wine and trying to relax and get our heads together a little. They don't have a dress code but many people on the porch that day seemed like they sleep in dress clothes and iron their underwear. We were both wearing jeans, she had a sweater over her shoulders, I had a fleece vest on. Anyway....so there we are, looking around when I look down and see my lovebug's socks. She has these mountain biking socks that say "Girls Love Dirt" on them !!! It made us laugh. That's why I love her so much !!!

So very tired.....

As you can imagine, today was a bit of a tough day. Both Tracey and I get waves of emotion. Sometimes all is well, then the next minute we just want to cry. That's normal I guess.

The NICU people are absolutely wonderful. The arranged a small box filled with Avery's things. They had already taken an imprint of her hands and feet in clay (like a childs christmas tree ornament) and were going to give that to us anyway. It made us cry.

There is another couple in the NICU, about our age, who just had twins too. I saw them today, talked with the mom and dad for a bit and was happy for them. Both Tracey and I are heartbroken about our situation, but none the less are happy for others. We've found that by sharing our story it at times inspires others to be thankful for what they have. It's just our way of making a good situation out of a not so good one.

Colby is doing well. This picture was taken this afternoon. He's very alert. Squirming all over the place. You can see the little monitors that are stuck to his little body. He pulls and kicks them off quite a bit. I think he just likes the attention from the pretty nurses.

We got a little digital voice recorder and Tracey has taped herself reading stories. I put that in with Colby when I left tonight.

Tracey and I are getting away tomorrow. We're going to an Inn up in Mass. for the night. Just one night. We couldn't stand to be away for any longer. We'll visit Colby in the morning on our way and then on the way back on Thursday. But the day away will do us some good.

Tracey and I haven't slept well for a couple days as you can imagine. I'm so very tired. Just when I think I can't feel any more drained or worn thing, things seem to change and become more challenging. Things are bound to change for the better for us soon.

The ongoing support from everyone is simply amazing. It honestly helps. And thank all of you who have donated to our walk. We had to enter a "goal" amount so we entered $1,000 not knowing what to expect. As you can see we've surpassed that goal which is amazing !! I'm glad we entered that walk. Just the idea that whatever we raise can help families avoid being in our shoes is a good feeling.

It's gong on 12:30 am so going to call the NICU to check on Colby and then I'm going to crash for the night.

Scott

In Honor Of Avery

Already I've gotten countless e-mails from people wanting to help us, send flowers, etc. That's thoughtful and kind of everyone.

Honestly, we would prefer that if anyone would like to do something, that they donate to the walk we're doing for Colby and now in honor of Avery. We understand your donation is for all of us and it would go a long way in their name and would help prevent other babies and their families from having to endure what we've gone through..

Thank you to everyone who has already donated !!!!

www.walkamerica.org/s_team_page.asp?si=1909A703-1872-4378-B955-BC7EF343E311&SeId=415152

Scott & Tracey

Our Dear Avery

After three longs weeks of fighting so hard to stay with us, Avery passed on last night.

Tracey and I were with her and ensured that she was showered with warmth and love.

In the three weeks that our daughter was with us, she showed us that strength is measured in many ways. Avery, never weighing more than 1 lb 13 ozs, is the strongest person we had ever met.

Avery was my first child. And even given her very difficult situation, she brings me such joy and happiness. I believe she's impacted other people as well and this is something that will stay with all of us.

Tracey and I are doing fine. As you can imagine we're going to keep to ourselves a little over the next couple days. Feel free to be in touch via e-mail and I will continue to update the blog on how we're doing and on Colby's progress as often as possible.

Thank all of you for your love, support and compassion during Avery's journey.

Scott & Tracey

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The last couple days have been rough. We had been holding on to the hope that Colby would do well and stay at a level 1 or two brain bleed. Last night we got the news that he had progressed to a level three. We're at a bit of a loss or words...of feelings.......

Avery too is continuing to show signs of a worsening situation with her brain. Her hydrocephalus continues and her head is getting larger. She cries a lot now. You can't hear her because she has tubes into her lungs, but she tries to cry.

Colby gets another ultrasound tomorrow. Thus far we've had a couple tough things happen and we're due for some good news.

Good day yesterday

Colby and Avery both had good days yesterday. Colby was more active. Looking about a lot. He is still medicated, but they're trying to ween him off the pain meds little by little. Avery was doing better as well. Her new breathing tube seems to be doing the trick as her oxygen saturation has been much better.

The doctors will now be monitoring Avery's head circumference to watch her hydrocephalus.

But this is all part of the experience. Many of my clients have been up to speed with Tracey's and I's pregnancy. I tell them that although we didn't want to be in this situation and we didn't ask to be here....we're here none the less and we just need to make the best of it. That's all we can do. Everything the babies are going through are "normal" preemie issues. We have two so we have twice the chance of experiencing things. I've read stories of preemies who by this time (2 1/2 weeks old) aren't doing well or have had very serious problems. All in all, Colby and Avery are doing awesome !!!

I'm hoping to snap a couple pictures today. Here's one of Tracey and Avery from the day she held her.

Avery's Brain Bleed the Same, Now Signs of Hydrocephalus

I didn't get to the hospital until about 8:30 last night. Tracey and Evan were still there. Colby looked great. It's kinda funny because even with his little features, he still "looked" just like an adult would if they were heavily medicated. He would open his eyes, but stare off into nowhere. His movements were sluggish and he would respond to your touch, but it would be delayed. At this point, he's letting his respirator do all the breathing for him. They're trying to clear some liquid from his lungs, probably from all the liquid they put in him during his surgery. He was more responsive last night than the day before and I'm looking forward to going to see him today when he's all the better.

Avery was doing well too. As I mentioned, they put a thicker breathing tube into her and that seems to have helped her feel less agitated. They got the results from her ultrasound back and her brain bleed (IVH) is still the same. But now there's signs of hydrocephalus. You may have seen dwarfs with enlarged heads or pictures from years ago where the facial features are normal, the be forehead or skull overall are very large. This is from hyrdrocephalus. It's a build up of water between the brain and the skull. No a days, it doesn't pose too much of a risk as long as the doctors can keep on top of it. Avery has a very mild case at this point. If it doesn't progress, it will probably have absolutely no impact. If it does, they intervene early now a days and would drain the fluid before it pushing too hard on her head or brain. So that's a new thing to monitor for her.

But apart from that they're doing well. They're 2 weeks and 4 days old now. : ) YIPPIEEEE!! It feels like they've been in the NICU for months. I can see the changes in them already. They're opening their eyes much more. Moving about more. They respond to our voices more. Life is good !!

Colby's doing well after surgery

I'm writing this entry BEFORE I go to the hospital today. I find that writing them late at night is hard. My mind is shot. I'm in the office now just trying to wrap up my day and will head to the hospital from here.

We talked with the nurses today and they said Colby is doing well. Still sleeping from the anesthesia and all, but he's comfortable. Thus far no signs of infection or bleeding which is very good.

Avery is also doing better. They replaced the tube that goes from the ventilator into her lungs. It had been making a wheezing sound which made the Dr's think it might have been too small and it was allowing air to escape. This larger tube seems to be doing the trick as her blood oxygen levels were better this afternoon. We haven't heard the results from her ultrasound. Here is a link which talks about IVH or Brain Bleeds.

http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/ivh.cfm

Tracey is doing well. She's really tired today. I think yesterday was tough on her.

We knew we would need to get a minivan once we found out we were having twins. Even with just one baby, we would have Evan, the baby, Tracey and I and on just about all of our trips we bring our dog, Hamilton. He's a good 100 lbs of drool and fur. I threw an old picture of him on today's posting. So even with just one extra child a minivan was in order. Tracey's had her car for at least 5 years now and it's starting to limp a long. We were hoping to wait a couple more months until we needed to buy a van but it's looking like it will be sooner than later. It will be nice for Tracey though to be driving a shiny new minivan. I'll just need to get a Dave Matthews sticker for the back window to make it a stylin' minivan.

I'm going to wrap up here in the office so I can get off to the hospital. I'm glad to see that many of you have figured out how to post comments. Clare is right....no poopy diapers for Colby for a while. : )

Rough day

The doctors warned us that the one thing that will always be constant will be the uncertainty and the forever changing of the babies situation. Well...today was a great example.

Yesterday was great. I held Avery. Colby was lethargic, but content.

Today started with our normal call to the NICU in the morning. Things looked good. Avery was a bit agitated, but doing OK. Colby was his usual for past couple days. Big belly, somewhat lethargic, but stable. So I started my day and went to the office. Tracey was going to stay home as her car was in the shop being worked on and we were going to see them later today. About 9:30 this morning I got a call in the office. It was Tracey. "Avery's still doing OK, but something's wrong with Colby. His intestines or stomach or something is all wrapped up and he's going to have to have surgery." The doctors have been watching his belly since day one. It's always been distended and bloated. Whenever they'd try to put milk into his belly, he'd swell up. So in a way this made sense. Something was wrong with his digestive track.

It's a busy time of year for me and Tracey isn't working, so I need to keep my days full of appointments. The next thing I knew Tracey had found a ride to the hospital. She kept post there while I made my appointments, keeping me informed with regular calls as Colby went into the OR, came out and recovered. The doctors found that a part of his intestine has ruptured. There's a very serious condition called N.E.C. where the intestine gets infected, ruptures and sends all kinds of nasty stuff into the babies blood stream. The nurses reassured us that they think they caught it early enough that this isn't the case. Poor Colby now has a colostomy bag. They took the piece of his intestine out that ruptured and essentially have both ends now exiting his body. They will keep it like this until he heals and they can tell that there aren't any further issues going on. Then, they'll put the two ends together, put things back where they should and close him up. The doctors suspect this could be a good couple weeks.

Avery on the other hand had been doing great. I held her last night, she had good color, all was well. However, when Tracey was there today she would call me to say that her heart rate has been dropping. Then her oxygen levels were dropping and she just seemed extremely agitated. She didn't seem comfortable, crying and squirming about. Nothing seems to sooth her. The doctors are running blood test to see if they can detect what is going on. An X-ray of her lung looked as if one lung was partially collapsed. The doctors put her on her other side and are hoping it opens on it's own.

Tracey stayed with Colby and Avery through the day. I ran my appointments and then went directly to the hospital. Colby was still well medicated from his surgery when I arrived. The nurse said that because his little body won't be able to filter out the anesthesia quickly, he will most likely be sleeping for a good day or so. He looks OK. Very "plump" again because they put all kinds of fluids in him during the surgery and he's had another blood transfusion. But other than that, he looks peaceful and comfortable.

Avery is another story. She continued to squirm and look poorly. I tried to sooth her by reaching in and holding her hand, placing my and on her back, etc. But she wanted nothing of that. I decided the best thing would be to let her be. It's nights like these when you feel helpless. You can talk to them, tell them you love them and are here for them. But that's about it.

Given Colby's busy day, they weren't able to ultrasound his head tonight to check on his brain bleed. They were able to do Avery's but the results won't come back until tomorrow.

Tracey is wiped from the long day. I'm bringing her to get her car first thing tomorrow morning so she'll be independently mobile. Then I have a full day. I think the norm will be that Tracey will visit them during the day while I'm on appointments. Then I'll go see them in the evenings when I wrap up my day. She'll head home and make sure Evan's taken care of.

We've booked a night away, just the two of us one weekday night next week. We both need it. We originally were thinking of two nights, but neither of us want to be away from things for that long. That gives us a light to keep heading towards.

Tomorrow will be better. Hopefully Colby's digestive issue is now resolved. Avery could simply be irritate from her breathing tube. Or is there is something more serious brewing, hopefully the blood tests will shed some light and the doctors can work to get her back on track.

Again, the clock is reaching for 11:30. So I've got to crash for the night. Many of you have been e-mailing asking for more pictures. I'll do what I can but honestly, then they look so sick, I don't feel it's right to post them on their off days. When they're feeling better, I'll snap a couple and have them up. For now, here's one of my lovebug and I up at camp. She was tuckered out. I was doing what I could to sooth her itchy, growing tummy.

I got to hold my daugter tonight !!

Need I say anything more??!!

...well..I will. It was GREAT !!! Sorry, no pics. I went alone. I'll get some pics of me with them soon.

Avery is doing great the last couple days !! Yesterday she was a little off, but that's to be expected. She has been getting breast milk, albeit very small amounts since Sunday now and has been doing wonderful with that. Today I had a full work day. Out of he house around 8am, on appointments all day and back home around 5. Quick bite to eat and then off to the hospital. I think that will be my "norm" for a while. I didn't get back home until about 10pm. But hell, I got to hold my little girl! I would have stayed there all night if I had to !!

Colby is doing well too. Yesterday, he was having a hard day. He was back on the oscillating respirator for a couple days and I think that was getting to him. He was agitated and didn't want to be touched or anything. His lungs are cooperating so they've taken him off that for now. He was zonked out. Completely wiped. I put my hands in and held him as best I could within incubator, but tried to let him be.

It's kind of funny because when you talk to him, his forehead raises up. Almost like he doesn't know how to work his eyelids yet, so he tries to pull his eyes open with his forehead.

Sorry I haven't been as diligent with the updates but life is getting a bit busier now. Tracey is home and doing MUCH better. She's able to drive herself to the NICU. I'm falling back into more of a normal work routine. I'll continue to post updates every couple days and certainly when we hit milestones.

One important thing is happening tomorrow.....they're doing their weekly ultrasound to see how the babies brain bleeds are doing. Last week was the same as the week prior. I'm STILL hoping that this week will show signs of improvement.

I hope this blog is working well for everyone. You can click on the pictures to make them larger. You can also comment on posts by clicking on the comment icon. You don't need to register to post comments. You can click on the "Anonymous" icon and simply sign your comment (if you wish to) within the verbiage that you type. Or...you can always e-mail me as you did before. : )

I've got another full day tomorrow and it's getting close to 11:30, so I'm going to sign off for tonight.

Scott

Tracey got to hold Avery for first time tonight

We called the NICU this morning as we usually do to see how the twins made it through the night. Avery was doing OK, but Colby was having a tough time. He has been put back on the osolating (spelling?) resperator which makes his little belly bounce up and down like a panting dog. It sends very shallow, but frequent puffs of air into his lungs. To the tune of about 130 per minute. Hopefully he won't be on that for long. He was doing OK. No very responsive. I don't think he likes being on that much but until he can get his apnea under control, he'll need to go on it every once in a while. Other than that, his belly was still large and he hasn't been fed milk in a couple days now. They're treating him again for a heart murmer. Hopefully tomorrow he'll be doing a little better.

Avery on the other hand was doing great tonight. She had her eyes open and was moving about pretty good. Tracey got to hold Avery for the first time. It made both of us sooooooo happy to hit this milestone !!! Tracey was nervous, but did great. Little Avery still had many of her tubes in her. I didn't hold her because I think I'm coming off of a cold and I don't want to risk gettin either of them sick. As long as her health holds, we'll be able to hold her each day. Hopefully Colby will get stronger so we can hold him as well.

Avery held my finger tonight stronger than she ever has. It was neat because if I tried to move my finger away, she'd squeeze tight and pull my finger back to her. Just an awesome thing to experience !!!!

She's still on her ventaltor too, though not the aggressive one like Colby's on. They're also going to try to feed her breast mild again tonight. They will start with 1/2 c.c. Just a drop. It's not intended for real nutrition at this point but rather to get her digestive track used to digesting something.

So all in all, today was a GREAT day. I hope Colby has a better day tomorrow. Like all of our other days...tomorrow will probably be different than today.

Scott

Colby & Avery in the NICU

Colby & Avery have now been in the NICU for 1 week and 6 days. We've been told that their stay there will be a roller coaster of emotion. Thus far, our experience has lived up to that. Each baby has been on and then off of resperators. Colby has had spells of apnea and has been on the oscelating resperator. Both babies have IVH's also known as Brain Bleeds. Avery has a level 3/4, Colby a little less with level 1/2. Both babies have had PDA's, where a whole in their heart which usually closes for full term babies stays open. They've both been treated and both seem to show signs of that being rectified. Both have had their first trail of breast milk by way of a tube into their bellies. Both had their bellies swell as a result and are now not being fed. I could go on and on about their conditions, but the one thing we've found to be very true, whatever's happening today will probably be different tomorrow.

I've been sending out e-mails to friends and family with more detail and a bit of a day by day update on their condition. Going forward, I will post these details on this blog.

Colby & Avery come at 25 weeks and 5 days gestation

Tracey had been having bouts of contractions all through our hospital stay. Each time, she'd get hooked up to monitors and sometimes given IV's to try to stop them. For a long time, that seemed to work. The doctors and nurses were wonderful. They would come in each day and tell us how the nurses would check the records at the beginning of each shift hoping to see that we were still there.
Then, on Sunday, August 26th, Tracey started having more persistent contractions. They continued through the night and finally, on Monday, August 27 we were sent back to ICU. By this point, we were worn down from weeks of living in the hospital. Very little sleep and a roller coaster or emotions had taken it's toll on us. The doctors checked Tracey to find that she was progressing into labor. They declared that we needed to hurry into the operating room for an emergency C-Section. Within 1/2 an hour we found ourselves in an operating room, Tracey was strapped to an operating table and I was donning the blue hospital outfit. Within minutes the doctors asked me to stand up and see my baby girl, Avery, for the first time. I sat back down to tell Tracey how good she looked. Then came Colby. It all happened so quickly that it's a blur now.
They were born at 25 weeks and 5 days gestation. Both babies had been able to get the benefit of staying in utero for 3 more weeks because of their mom's resiliency. During this time Tracey had gotten shots of a steroid to help the babies lung development. Colby weighed 1lb 15ozs. Avery was 1lb 13ozs. Both measuring 13 and 1/2 inches. Although it was much sooner than we hoped, our babies where now with us.

The Hospital

It was a Monday, I was at the office and my phone rang. It was Tracey. She sounded a bit nervous and said she was going to her OB because she was "leaking" a little. I had a couple appointments I needed to try to keep so I stayed in the office waiting for her call updating me on what was going on. That phone call came, but not with the news I wanted. She said I had to hurry and go to the hospital because it was in fact amniotic fluid that was leaking and she was dialated. I dropped everything and met her at the hospital. At this point, we were 22 weeks and 5 days along. The doctors said that twin A, which was Avery, had ruptured her membrane and that most women go into labor within 3 days when this happens. We were devastated. To make matters worse, the doctors said that babies weren't considered viable until 24 weeks gestation so if the babies came then, the doctors would "give them warmth, love and keep them comfortable" but that's all they could do. No medical intervention would take place.

To make a VERY long story shorter....we stayed at that hospital for 5 days until UCONN Health Center would take us. We were transported there and continued to defy the odds for 3 whole weeks. Tracey went through pure hell with all the different drugs the doctors used to keep the contractions away. For anyone who has been on Magnesium, you know what a nasty drug that is. She was on strict bedrest and had constant monitoring, day and night for 3 weeks. I cleared my schedule and stayed at her bedsite helping her as best I could. Once she hit 25 weeks or so,they allowed her more mobility to get up and take a shower and all. So I took advantage of this to snap a quick picture. : )

Tracey's Pregnancy

Because we went through infertility treatment and poor Tracey had to take shots of hormones to make her body produce multiple eggs, she had a side affect called ovarian hyper stimulation syndrome (OHSS). We knew we were pregnant and were at my parents for the weekend to tell them all our good news. Tracey had been feeling a bit off and her belly was swelling quickly. After almost passing out, I brought her to an emergency room near my parent's. The doctor did an ultrasound and said he saw a lot of liquid in her belly. Given what we had gone through, he thought it was blood, maybe a ruptured ovary or something. He said that they were going to have to go in and try to find out what was bleeding. This wouldn't have been good for our pregnancy. Tracey and I were at a loss. After years of trying to get pregnant, we finally were and now this !! The doctor asked for our infertility doctor's name. He gave him a call and came back in the room smiling. Turns out, it wasn't blood but extra liquid that the ovaries produce at times when people go through IUI. We were relieved to hear this. Tracey had a long couple weeks, her belly swelled to about 36 inches. She looked 5 months pregnant. We even had to go to the doctor and have some of the fluid drained out of her.
Apart from this, our pregnancy was non eventful. Almost no nausea. Just great given that she was carrying two babies !!!
I was soooooo excited to finally see my wife pregnant. I was dreaming of our little guys running around the house. I subscribed to about 5 baby/pregnancy/parenting magazines and would watch all the TV shows about babies and pregnancy. Things were going very well!!

Four Years of TTC

This is the first entry for Avery and Colby's blog and I thought it would be useful to provide just a bit of background. Tracey and I have been together 10 years now..married for 4. I have a wonderful stepson and have been in his life for as long as he can remember.

We knew we wanted to start a family and actually jumped the gun. We were pregnant for our wedding. Unfortunatly, we had a miscarriage at about 3 months. We thought it was so easy to get pregnant the first time, that we would just start again when we were ready. Almost four years later, both of us having gone through surgeries to address issues that different doctors said could be stopping us from getting pregnant, we finally got pregnant via IUI with twins !!! A boy and a girl!!!