A very bittersweet day for the Guy family. The toughest week of our lives began one year ago today when we were blessed with the birth of our two miracle babies. We just needed one more miracle for Gavin...
Please remember Gavin and all of the TTTS victims and TTTS survivors as well. Both Jennifer and I are wearing our TTTS awareness ribbons today in remembrance of Gavin, in celebration of Colby and for TTTS awareness.
Colby is doing excellent. Check out the family blog link for his updates.
SG
Wednesday, August 12, 2009
Tuesday, May 5, 2009
May 5, 2008
One year ago today, we received the official diagnosis that our identical twins were suffering from a severe case of TTTS, and within hours of that diagnosis, we were planning our trip to Cincinnati for their life saving laser surgery.
Thursday, February 12, 2009
Wakemed conference- Gavin
We had a final review of Gavin's medical file(s) with Dr Parsons and Dr Bastek at Wake Med a few weeks ago (January 26). There was really no new news, except some expanded theories. The Dr's still think a virus was the cause, but this was never proven (no positive cultures), and never will be. Infections and viruses in premature infants are very dangerous, since their immune symptoms are very immature, and viruses/infections are one of the leading causes in all infant deaths (even in full term babies). Most of the symptoms that Gavin presented closely resembled a virus or infection, and one virus specifically called an Echo virus may have been the culprit per the Dr's research and opinions. Sepsis-like illness (blood infection) and liver failure is a dominate feature of echo viruses (and Gavin had liver and then kidney failure), and the infection is active in the summer and fall. This virus can also be somewhat challenging to culture. The Wake Med Dr's are still perplexed and genuinely bothered and hurt by Gavin's decline and passage. They have discussed his case at many of their neonatal conferences and seminars, since it is definitely somewhat rare, especially combined with the good health of his identical twin brother Colby. Colby is 6 months old as of today's posting, and is thankfully, a very happy and healthy 15.5 pound baby boy.
Tuesday, November 4, 2008
Twin pictures & site sign off
We wanted to share some pictures of our two boys together (the last photographs taken of Gavin). These shots were taken by Aimee (Pure Expressions Photography), who was the Now I Lay Me Down To Sleep volunteer photographer (as mentioned in an earlier post).
Gavin will always be a special part of our family and he will always live in our hearts and many hearts everywhere, as his brief life touched hundreds and had such a powerful impact on family, friends, medical staff, and even strangers. Even though we will not be updating this twin blog any longer, please continue to check in with us at the new site (see post below & link to the left), and please continue to visit this site as well, as it will stay up for quite some time.
We never did find out exactly what happened to Gavin, and probably will never know for sure. We are expecting a conference with the Wake Med Dr's sometime in the near future for a final review of Gavin's file. However, we did have a long chat with Dr. Harden (Jen's OB-GYN), who has been in close contact with Wake Med during this whole ordeal. He suggested the possibility that Gavin may have been critically impacted by the TTTS, as opposed to a late stage infection as we had initially thought. Gavin was the donor twin (the smaller twin, who had compromised body growth before the corrective surgery), and may not have developed some internal connections correctly, even though he grew and appeared to progress nicely after the laser surgery (as evidenced by dozens of check ups and level II ultrasounds). The more we think about it, the more that this theory makes some sense. All of his virus/bacteria cultures were negative, he never responded to medication, and Colby was in perfect health. It makes the whole situation just a tad bit easier to accept (with emphasis on "tad"), since Gavin's compromised health may have been in the making since the TTTS first presented itself at mid pregnancy. If this were the case, it makes Colby's healthy arrival even more special than it already is (in addition to the life saving surgery they both underwent). Had Gavin passed away in utero, it most likely would have had grave consequences on Colby (the passing of a multiple in the womb can cause death or present major complications for the other baby). As hard and unfair as it was losing Gavin, it was a miracle that Gavin progressed while in the womb and was then born, giving Colby a chance for a normal life, and essentially becoming Colby's guardian angel even before his death. Again, this is a theory, but a solid one. In addition, Jennifer's dedicated bed rest and the simple fact that she was taking great care of herself and the twins during this complicated pregnancy most definitely played a crucial part in both of the boy's progression, and ultimatly in the birth of our miracle twins.
With love-
Steve
Monday, November 3, 2008
New family blog
Things continue to go well with Colby at home. He is growing out of his newborn clothes, and is starting to wear 0 to 3 months - more outfit changes for mommy! He is starting to smile a little bit, and is much more alert now. He is such a cutie! Unfortunately, my return to work is approaching very quickly - probably before Thanksgiving. The good thing is we have a great nanny lined up, and we have no worries at all about leaving him at home.
This blog has been great for us in so many ways. It's been a great way to communicate with many people, and very therapeutic for us during a very hard time. We appreciate everyone who has kept up with us, and followed us on our journey. We have a new blog now, and hope all of you continue to keep up with us and watch Colby, and hopefully, one day, our family grow. The new blog is:
www.whatsupwiththeguys.blogspot.com
please bookmark it and check it out for Halloween pictures!
This blog has been great for us in so many ways. It's been a great way to communicate with many people, and very therapeutic for us during a very hard time. We appreciate everyone who has kept up with us, and followed us on our journey. We have a new blog now, and hope all of you continue to keep up with us and watch Colby, and hopefully, one day, our family grow. The new blog is:
www.whatsupwiththeguys.blogspot.com
please bookmark it and check it out for Halloween pictures!
Monday, October 20, 2008
Over 2 months already!
Time really does fly! We can not believe Colby is more than two months old. It seems like just yesterday that we were anxious to get him home from the hospital.
Things at home continue to go well, at least typical for life with a newborn. He is eating well, and sleeps 3 to 4 hours (sometimes up to 5). He is alert more now, and is moving his arms and legs a lot. He had his two month well baby check last week and weighed in at 8 lb 5 oz - right on track. Unfortunately, at the same appointment he had to get 5 shots - poor thing didn't even see it coming! One of the shots was to provide antibodies against RSV, a virus that is easily spread among children and can be really tough for little babies. We were very happy that Blue Cross approved the series of shots for Colby!
I guess it's a good thing we don't have much information for the blog - things are finally pretty normal!
Things at home continue to go well, at least typical for life with a newborn. He is eating well, and sleeps 3 to 4 hours (sometimes up to 5). He is alert more now, and is moving his arms and legs a lot. He had his two month well baby check last week and weighed in at 8 lb 5 oz - right on track. Unfortunately, at the same appointment he had to get 5 shots - poor thing didn't even see it coming! One of the shots was to provide antibodies against RSV, a virus that is easily spread among children and can be really tough for little babies. We were very happy that Blue Cross approved the series of shots for Colby!
I guess it's a good thing we don't have much information for the blog - things are finally pretty normal!
Thursday, October 2, 2008
Family Update/Photography Exhibition
UPDATE
Colby hit the seven pound mark this week! The twins actual date date was this week (Sept 30, which was a full term 40 week due date), so he is an average size baby taking that into consideration (had he been born this week, and not on Aug 12). He is still doing great. Sometimes, he will even sleep for 5 hours at a time (this can happen during the day or night). The Dr's tell us to wake him every 3 or 4 hours to feed him, but that is easier said than done, especially in the middle of the night. We are not real motivated to wake a sleeping baby at 4am, but instead follow his cues (when he is hungry enough, he will let us know, believe me). We are somewhat on a schedule, but more or less are "feeding on demand" at this early stage.
He does however typically eat every 3 to 4 hours.
GUY'S NIGHT
We are getting him out on occasion for Dr appointments and for an errand every now and then. Jennifer had dinner out with some friends on Monday (she rode her bike up to North Hills, kinda neat), so it was a "guy's night" for Colby and myself. I needed to get some items from Home Depot and do a few minor yard chores, so I decided we would "bond" and hit the home improvement store and spend some time "outside" together in the yard. I strapped him into his car seat, bundled him up, and we were off. Our first guy's night together went smoothly. I had a bottle on stand by, diapers packed, and a pacifier close at hand. The only issue, Colby slept through it. He totally missed the Home Depot experience, as well as the yard chores. Oh well, we will have many more opportunities for more wakeful bonding.
PHOTOGRAPHY EXHIBITION
Yesterday, we got a nice letter (we get many nice letters by the way). It was from Pure Expressions Photography, a local photographer who volunteers for an organization called "Now I Lay Me Down To Sleep" or "NILMDTS," an infant bereavement non profit that takes professional photographs of infants that have passed away, in a very compassionate and respectful manner.
We were made aware of this group while in the hospital as Gavin's health was declining, and were open to the possibility of using their service. After Gavin passed away, we decided to allow the photographer to come to the hospital (on rather short notice needless to say). Aimee (of Pure Expressions...) came in and spent an hour or so with the four of us and took many pictures. She mailed us a CD with all of the pictures a couple of weeks ago, but we have not found the time (or been in the mood quite yet) to sit down and view them together. Well, the letter yesterday from Aimee was quite a surprise for us. It had a beautiful black & white post card picture of our two boys closely together, and Colby is actually holding Gavin's arm and is looking his way. The picture hit us quite hard, but in a nice way. The purpose of Aimee's letter was to ask our permission to display this photograph (a piece of art) in a photography exhibition this winter, and possibly in other exhibitions in the future. We were honored to do so. This particular exhibition will be at the Halle Cultural Arts Center in Apex, from March 6 through March 31, 2009. It will be a NILMDTS exhibition. If you are interested in learning more about this wonderful non profit service, check out http://www.nowilaymedowntosleep.org/start.php (there are some powerful and emotional pictures on this website, but very artfully and compassionately done). I am not sure if we have even thanked Aimee for her time and efforts (all free by the way), so I will do so now and also gladly recommend NILMDTS for future donations as well.
sg
Colby hit the seven pound mark this week! The twins actual date date was this week (Sept 30, which was a full term 40 week due date), so he is an average size baby taking that into consideration (had he been born this week, and not on Aug 12). He is still doing great. Sometimes, he will even sleep for 5 hours at a time (this can happen during the day or night). The Dr's tell us to wake him every 3 or 4 hours to feed him, but that is easier said than done, especially in the middle of the night. We are not real motivated to wake a sleeping baby at 4am, but instead follow his cues (when he is hungry enough, he will let us know, believe me). We are somewhat on a schedule, but more or less are "feeding on demand" at this early stage.
He does however typically eat every 3 to 4 hours.
GUY'S NIGHT
We are getting him out on occasion for Dr appointments and for an errand every now and then. Jennifer had dinner out with some friends on Monday (she rode her bike up to North Hills, kinda neat), so it was a "guy's night" for Colby and myself. I needed to get some items from Home Depot and do a few minor yard chores, so I decided we would "bond" and hit the home improvement store and spend some time "outside" together in the yard. I strapped him into his car seat, bundled him up, and we were off. Our first guy's night together went smoothly. I had a bottle on stand by, diapers packed, and a pacifier close at hand. The only issue, Colby slept through it. He totally missed the Home Depot experience, as well as the yard chores. Oh well, we will have many more opportunities for more wakeful bonding.
PHOTOGRAPHY EXHIBITION
Yesterday, we got a nice letter (we get many nice letters by the way). It was from Pure Expressions Photography, a local photographer who volunteers for an organization called "Now I Lay Me Down To Sleep" or "NILMDTS," an infant bereavement non profit that takes professional photographs of infants that have passed away, in a very compassionate and respectful manner.
We were made aware of this group while in the hospital as Gavin's health was declining, and were open to the possibility of using their service. After Gavin passed away, we decided to allow the photographer to come to the hospital (on rather short notice needless to say). Aimee (of Pure Expressions...) came in and spent an hour or so with the four of us and took many pictures. She mailed us a CD with all of the pictures a couple of weeks ago, but we have not found the time (or been in the mood quite yet) to sit down and view them together. Well, the letter yesterday from Aimee was quite a surprise for us. It had a beautiful black & white post card picture of our two boys closely together, and Colby is actually holding Gavin's arm and is looking his way. The picture hit us quite hard, but in a nice way. The purpose of Aimee's letter was to ask our permission to display this photograph (a piece of art) in a photography exhibition this winter, and possibly in other exhibitions in the future. We were honored to do so. This particular exhibition will be at the Halle Cultural Arts Center in Apex, from March 6 through March 31, 2009. It will be a NILMDTS exhibition. If you are interested in learning more about this wonderful non profit service, check out http://www.nowilaymedowntosleep.org/start.php (there are some powerful and emotional pictures on this website, but very artfully and compassionately done). I am not sure if we have even thanked Aimee for her time and efforts (all free by the way), so I will do so now and also gladly recommend NILMDTS for future donations as well.
sg
Tuesday, September 23, 2008
One week down
It has been a fast week with Colby at home. Things are going really well with all of us, including the dogs (they are adjusting nicely to the new addition, see below). Colby is eating well, sleeping well (*for the most part), pooping and peeing well, and is "awake" a couple of hours each day (at various times). *He is continuing a somewhat nocturnal routine from his hospital days where he seems to be a bit more active after midnight and really likes to be held during the early a.m. hours in order to stay asleep (he did his best bottle feedings and "lung exercises" in the middle of the night while in the hospital, according to the nurses, so we kinda saw this coming). Jennifer and I are currently doing a modified "tag team" approach at night so we can both get some periods of uninterrupted sleep/rest. Since he is breastfeeding and bottle feeding, we have some flexibility. My shift is the early shift, from 10pm or so to around 2am, and she takes over that (and her shift lasts most of the day obviously). We will be expecting some changes as Colby gets bigger and his sleep and wakefulness cycles fluctuate.
I am making stronger coffee in the mornings and am actually getting to work at a decent time. We are both suffering a bit from "baby brain" (forgetfulness due to sleep deprivation), her a little more than me I must say, but we both love our new job as parents, and enjoy every minute of it, even at 3am.
The dogs all have a different opinion of Colby. Annie is very curious and somewhat "attentive." Sometimes when he cries, her ears perk up and she comes over to help sooth him (some good sniffs and an occasional gentle lick). Shelby seems curious and attentive too at times (acts like she wants to help sometimes when he cries), but she exhibits more jealously when I hold Colby, not in an aggressive manner, but more in a sad way. Hershey, as expected, doesn't really care one way or the other as long as her food supply is not disrupted. In theory, the dogs should be happier, since we are always home, and they are getting daily walks and still plenty of attention from us.
We have a new family blog in the works and will soon begin postings on that. We do plan to link this twin blog to it and keep it open as long as we can (we will also print out a hard copy of all of our blog entries for Jennifer's scrap booking later).
'Til next time-
S
I am making stronger coffee in the mornings and am actually getting to work at a decent time. We are both suffering a bit from "baby brain" (forgetfulness due to sleep deprivation), her a little more than me I must say, but we both love our new job as parents, and enjoy every minute of it, even at 3am.
The dogs all have a different opinion of Colby. Annie is very curious and somewhat "attentive." Sometimes when he cries, her ears perk up and she comes over to help sooth him (some good sniffs and an occasional gentle lick). Shelby seems curious and attentive too at times (acts like she wants to help sometimes when he cries), but she exhibits more jealously when I hold Colby, not in an aggressive manner, but more in a sad way. Hershey, as expected, doesn't really care one way or the other as long as her food supply is not disrupted. In theory, the dogs should be happier, since we are always home, and they are getting daily walks and still plenty of attention from us.
We have a new family blog in the works and will soon begin postings on that. We do plan to link this twin blog to it and keep it open as long as we can (we will also print out a hard copy of all of our blog entries for Jennifer's scrap booking later).
'Til next time-
S
Wednesday, September 17, 2008
Tuesday, September 16, 2008
He's home! (revised 9/18)
Colby is finally home! We walked through our door around 5:30 this afternoon. YIPPEE!! He has been drinking his milk like a champ (since last Thursday night) and was holding and gaining weight just fine (they take a three day average after the feeding tube is removed, and he did well, only losing just a tad of weight during one of those nights, and gaining solidly on average).
As strange as it might sound to some of you, it was sad for Jennifer and I to leave Wake Med after all of these months (since July 19 when her water first broke). However, we are very happy to have our boy home after our long, tough journey. Just about everything we do these days is both happy and sad, as well documented, and leaving the hospital and all of the wonderful staff there was emotional. Gavin's short four days were all in the intensive care nursery and he was cared for by many of the nurses and Dr's that we have been seeing on a daily basis while visiting Colby, so letting go of that routine hurts. The hospital staff was very understanding and compassionate to our situation and we also had alot of interaction with some of Colby's nursery neighbors that had also lost a twin (a triplet in one situation), so being there on a daily/nightly basis was very therapeutic for us no doubt. With that being said, we are looking forward to our new routine with the Colbster at home (check out the smiles in the above pictures), and to a very bright future.
Two of our favorite nurses were on shift today and got to discharge Colby (& us), which made it a little more special. We took our time today and did alot of last minute socializing with Colby's "neighbors" in the nursery and with as much staff as we could, and we then had a thorough discussion with one of Colby's Dr's about his discharge, his health, and some great advice and tips on what do in the days, weeks and months to come. One of the biggest issues is keeping Colby healthy and away from viruses and infection during the upcoming cold and flu season (Octoberish through March), as Jennifer mentioned in the previous post (and he being a preemie adds to the concern). We do want Colby to meet his family and friends, and we will work to find a balance that works for everyone.
Love to all,
s & j
ps- For those who contributed to Colby's college fund in memory of Gavin, Sean said the checks will be cashed this week, and apologized for the delay. THANK YOU for your kindness and generosity, it will never be forgotten.
As strange as it might sound to some of you, it was sad for Jennifer and I to leave Wake Med after all of these months (since July 19 when her water first broke). However, we are very happy to have our boy home after our long, tough journey. Just about everything we do these days is both happy and sad, as well documented, and leaving the hospital and all of the wonderful staff there was emotional. Gavin's short four days were all in the intensive care nursery and he was cared for by many of the nurses and Dr's that we have been seeing on a daily basis while visiting Colby, so letting go of that routine hurts. The hospital staff was very understanding and compassionate to our situation and we also had alot of interaction with some of Colby's nursery neighbors that had also lost a twin (a triplet in one situation), so being there on a daily/nightly basis was very therapeutic for us no doubt. With that being said, we are looking forward to our new routine with the Colbster at home (check out the smiles in the above pictures), and to a very bright future.
Two of our favorite nurses were on shift today and got to discharge Colby (& us), which made it a little more special. We took our time today and did alot of last minute socializing with Colby's "neighbors" in the nursery and with as much staff as we could, and we then had a thorough discussion with one of Colby's Dr's about his discharge, his health, and some great advice and tips on what do in the days, weeks and months to come. One of the biggest issues is keeping Colby healthy and away from viruses and infection during the upcoming cold and flu season (Octoberish through March), as Jennifer mentioned in the previous post (and he being a preemie adds to the concern). We do want Colby to meet his family and friends, and we will work to find a balance that works for everyone.
Love to all,
s & j
ps- For those who contributed to Colby's college fund in memory of Gavin, Sean said the checks will be cashed this week, and apologized for the delay. THANK YOU for your kindness and generosity, it will never be forgotten.
Monday, September 15, 2008
The light at the end of the tunnel!
We can finally see the light! Colby had his feeding tube removed Friday evening after 24 hours of oral feedings. We thought this was the big step to going home, but, once again, nothing is easy. Saturday afternoon (after almost three whole days of oral feedings) the neonatologist finally changed Colby's orders. His orders had been to take 56 mL every three hours whether he wanted that much or not. The new orders are for him to take as much as he wants every 3 to 4 hours which is a lot more like how a baby at home acts and gets fed. Saturday night and Sunday went really well, and he took as much as 72 mL at one feeding! We are hoping the doctor will give us discharge orders very soon, but we are a bit concerned because Colby lost a little bit of weight last night. He is a whopping 6 lb 7 oz now, and we hope the slight drop in weight does not hold him at the hospital too much longer. We thing he has definitely proven that he can, will, and wants to eat!
We are looking forward to everyone meeting Colby once he comes home, but the nurses and doctors have told us to be very cautious with him since he is a preemie. We are not supposed to take him to crowded places, he is not to be around cigarette smoke, or smokers, and he should not be touched or handled very much. This is to protect his fragile immune system from common viruses and bacteria that are not so harmful to us, but can make him very sick especially as we enter cold, flu and RSV season. So please understand if we seem to be ultra protective parents through the winter - especially since we think we lost Gavin due to some bacterial or viral infection. We really do not want Colby to go back in the hospital!
We are looking forward to everyone meeting Colby once he comes home, but the nurses and doctors have told us to be very cautious with him since he is a preemie. We are not supposed to take him to crowded places, he is not to be around cigarette smoke, or smokers, and he should not be touched or handled very much. This is to protect his fragile immune system from common viruses and bacteria that are not so harmful to us, but can make him very sick especially as we enter cold, flu and RSV season. So please understand if we seem to be ultra protective parents through the winter - especially since we think we lost Gavin due to some bacterial or viral infection. We really do not want Colby to go back in the hospital!
Thursday, September 11, 2008
When is Colby coming home?
Colby has to meet one major goal before he gets to make his journey home, he has to eat more for himself. He is doing great when he is awake, and, for the first time, took a whole bottle from me this week, which was a big thrill for me and the nurse working that shift. He takes about half of what he needs from Jennifer, which is really good, since breastfeeding is more challenging than bottle feeding (he usually falls asleep or gets tired while feeding). He is supposedly ahead of schedule according to some of the nurses, so all is still very good. We are however getting a little impatient, since he was born a month ago and we want him home, but we also keep reminding ourselves (as do the nurses), that his due date is September 30, and he was 2 months early!
Only Colby knows when he will be ready (more awake during feeding times), and unfortunately, even though he seems to be pretty smart for a one month old, he is not yet talking, so we don't quite know when that time may be.
As of Wednesday pm, he weighs in at a solid 6lbs, 4oz's, and is appx 19 inches long.
Not bad for a "37 weeker." He is about to outgrow his "preemie" outfits needless to say, and is comfortably wearing "newborn" sizes now. Besides taking his first full bottle from me this week, I also got "christened" (for the first time) by him during a diaper change. Anybody with boys knows what that means. I will eventually learn "to cover" at all times (especially at bath and diaper change time). Jennifer got squirted last week.
On a more somber note here on 9/11, it is very bittersweet to be with Colby at times. With the fullness of his face (all of his recent weight gain), he is currently about the same size Gavin was in his last day or two with us. Gavin had swelled a little due to his kidney failure, among other things, and Colby's facial features/size are a painful reminder of that challenging and very sad time just a few weeks ago. We miss our boy beyond description, but are still joyful with having a healthy, beautiful Colby who will be home with us soon. The roller coaster ride continues.
sg
ps- To end on a happier note, I asked Jennifer to marry me 4 years ago today while hiking in the Grand Teton National Park (WY).
Only Colby knows when he will be ready (more awake during feeding times), and unfortunately, even though he seems to be pretty smart for a one month old, he is not yet talking, so we don't quite know when that time may be.
As of Wednesday pm, he weighs in at a solid 6lbs, 4oz's, and is appx 19 inches long.
Not bad for a "37 weeker." He is about to outgrow his "preemie" outfits needless to say, and is comfortably wearing "newborn" sizes now. Besides taking his first full bottle from me this week, I also got "christened" (for the first time) by him during a diaper change. Anybody with boys knows what that means. I will eventually learn "to cover" at all times (especially at bath and diaper change time). Jennifer got squirted last week.
On a more somber note here on 9/11, it is very bittersweet to be with Colby at times. With the fullness of his face (all of his recent weight gain), he is currently about the same size Gavin was in his last day or two with us. Gavin had swelled a little due to his kidney failure, among other things, and Colby's facial features/size are a painful reminder of that challenging and very sad time just a few weeks ago. We miss our boy beyond description, but are still joyful with having a healthy, beautiful Colby who will be home with us soon. The roller coaster ride continues.
sg
ps- To end on a happier note, I asked Jennifer to marry me 4 years ago today while hiking in the Grand Teton National Park (WY).
Saturday, September 6, 2008
Saturday night with Colby
Bath time
Passed out after eating
Colby's first bottle
I'm awake now!
Colby is now a gigantic 5 lb 14 oz - almost 6 lb! The little guy will put on 2 whole pounds before he is one month old! You can really see the weight in his cheeks : )
Another milestone was achieved Thursday night - Colby got his first bottle from his Daddy. He took about 14 of the 52 mL, but did well for his first time. Colby got his second bottle Friday night at 2 am (from nurse Josie) and drank the whole thing! We'll have to work a little bit more on the bottles so he can come home soon.
Monday, September 1, 2008
Colby hits 5 pounds!
He is growing like a weed! I think it was Friday night when he hit the 5 lb mark - yea! We are trying to spend a lot of time at the hospital, and trying to get in two practice feedings a day. The nursing is going slow, but Colby is getting stronger, little by little. We still don't have an estimated date of his homecoming, but hope it won't be too much longer. It will be nice to get into a routine at home instead of having to go back and forth to the hospital. I know having him at home will be hard too, but I'm looking forward to having him here. Right now, he is taking 44 mL of milk at each feeding (8 times a day) and the most he has taken from me is 14 mL so we have a ways to go, but maybe this week things will "click" with him.
We will add some new pictures soon!
We will add some new pictures soon!
Thursday, August 28, 2008
Thanks, updates, etc.
Thank you's part II;
I would like to personally thank my brother Allen, who after hearing the hurt in my voice as I described Gavin's situation on Wednesday morning (Aug 13), promptly packed and flew up from Tampa to be with us that same afternoon and then spent over a week by our sides assisting us in many ways. It allowed me to spend more time with Jennifer and our two boys as he handled many phone calls, kept our dogs and house in a somewhat normal state, and assisted in many planning issues. Allen missed the first day of school for his children, a stressful cheer leading audition (that turned out successful!), and on top of everything, had a hurricane threatening to hit the Tampa area as well.
As Jennifer stated, there are simply too many friends and family to mention in a thank you message, but we know who you are, from all the visits, meal drop offs, restaurant donation/set up and food, memorial donations, nursery work, emails, cards, flowers, and more. The hospital staff at Wake Med, the Sacred Heart Cathedral (Father Sal & Cindy Fitzgerald) and St. Joseph's Catholic Church (Father Williams, who baptized Gavin sometime after 2am on Aug 13) also deserve a special thank you, for their professionalism as well as their true compassion. And lets not forget about the Fetal Care Center of Cincinnati, who gave both our boys a chance after successful laser surgery.
Colebank Miller Guy;
Colby is inching ever so closely to 5lbs (his last weight was 4lbs 14oz). He is still feeding "some" on his own, and is doing a little better each day at it. He sleeps alot (which is good for his growth). We do get to hold him at times (other than just the feeding times). When awake, he looks around, tugs at his feeding tube with his little hands, likes to squirm, coo's and squeaks, will lift his head on occasion, and will literally "crawl" up our chest while "kangerooing." He can be a very active premie at times. He cries some, but thankfully not much (for now!).
Colby is a miracle baby for sure. He survived the TTTS laser surgery in May (and both boys were in critical condition at that time) and he then survived the "whatever it was" that got to Gavin (most likely an infection of some sort). With the twins so close and sharing amniotic fluid, he could have been (or should have been) exposed to the same bug. As tragic and unfair as losing Gavin was, it could have been much much worse, which is almost impossible to comprehend. Thank God for Colby.
Jennifer & Steve;
Jennifer is driving again and is still recovering well from the C Section. She is getting stronger every day (like Colby). She is very sad at times (and she should be sad). She is also very happy at times as well (especially when holding or feeding Colby). I have "my moments" for sure (and will have my moments for the rest of my life), but if Colby and Jennifer are doing well, I am doing well, simple as that.
With love,
Steve
I would like to personally thank my brother Allen, who after hearing the hurt in my voice as I described Gavin's situation on Wednesday morning (Aug 13), promptly packed and flew up from Tampa to be with us that same afternoon and then spent over a week by our sides assisting us in many ways. It allowed me to spend more time with Jennifer and our two boys as he handled many phone calls, kept our dogs and house in a somewhat normal state, and assisted in many planning issues. Allen missed the first day of school for his children, a stressful cheer leading audition (that turned out successful!), and on top of everything, had a hurricane threatening to hit the Tampa area as well.
As Jennifer stated, there are simply too many friends and family to mention in a thank you message, but we know who you are, from all the visits, meal drop offs, restaurant donation/set up and food, memorial donations, nursery work, emails, cards, flowers, and more. The hospital staff at Wake Med, the Sacred Heart Cathedral (Father Sal & Cindy Fitzgerald) and St. Joseph's Catholic Church (Father Williams, who baptized Gavin sometime after 2am on Aug 13) also deserve a special thank you, for their professionalism as well as their true compassion. And lets not forget about the Fetal Care Center of Cincinnati, who gave both our boys a chance after successful laser surgery.
Colebank Miller Guy;
Colby is inching ever so closely to 5lbs (his last weight was 4lbs 14oz). He is still feeding "some" on his own, and is doing a little better each day at it. He sleeps alot (which is good for his growth). We do get to hold him at times (other than just the feeding times). When awake, he looks around, tugs at his feeding tube with his little hands, likes to squirm, coo's and squeaks, will lift his head on occasion, and will literally "crawl" up our chest while "kangerooing." He can be a very active premie at times. He cries some, but thankfully not much (for now!).
Colby is a miracle baby for sure. He survived the TTTS laser surgery in May (and both boys were in critical condition at that time) and he then survived the "whatever it was" that got to Gavin (most likely an infection of some sort). With the twins so close and sharing amniotic fluid, he could have been (or should have been) exposed to the same bug. As tragic and unfair as losing Gavin was, it could have been much much worse, which is almost impossible to comprehend. Thank God for Colby.
Jennifer & Steve;
Jennifer is driving again and is still recovering well from the C Section. She is getting stronger every day (like Colby). She is very sad at times (and she should be sad). She is also very happy at times as well (especially when holding or feeding Colby). I have "my moments" for sure (and will have my moments for the rest of my life), but if Colby and Jennifer are doing well, I am doing well, simple as that.
With love,
Steve
Wednesday, August 27, 2008
Thank You!
We will never be able to personally thank everyone who has helped us over the last few months, so this is our attempt to thank all of you!
Thank you for all of your support last week during our loss of Gavin. We really appreciate everything that was done to help celebrate his short life, and the support you all showed Steve and I at his funeral service. Planning that day was very difficult, but it was beautiful, and we are so glad that so many chose to share that time with us. We do not know who did what, or who brought what for the event at The Pit, but we appreciate all of it! We are grateful to have so many people who care about us!
Thank you for all of the visits, flowers, candy, magazines, calls, emails, meals, etc. while I was at home and while I was in the hospital. The visits were especially nice, and I really appreciate the time you took to entertain me!
Thank you for all of the cards and flowers you have sent to the house. This continues to be a difficult time for us as we are torn between mourning for Gavin and celebrating for Colby. These feelings are reflected in the emails, calls, and cards we receive from all of you. Thank you for thinking of us!
Thank you for the donations you have made, and continue to make in Gavin's memory. We have been notified of donations to the March of Dimes, Wake Med Foundation, and The Twin to Twin Transfusion Syndrome Foundation. If you would still like to make a donation, and are looking for an organization we have a local suggestion - April's Angels. Steve and I worked with this organization last fall, and it meant a lot to us. April's Angels is an organization that redecorates the bedroom of chronically ill children. The bedrooms are re-done to create a fantasy room for the sick child. April's Angels was started and is run by a woman in Cary. Check them out at: www.aprilsangels.org
Thank you all again for everything!
Thank you for all of your support last week during our loss of Gavin. We really appreciate everything that was done to help celebrate his short life, and the support you all showed Steve and I at his funeral service. Planning that day was very difficult, but it was beautiful, and we are so glad that so many chose to share that time with us. We do not know who did what, or who brought what for the event at The Pit, but we appreciate all of it! We are grateful to have so many people who care about us!
Thank you for all of the visits, flowers, candy, magazines, calls, emails, meals, etc. while I was at home and while I was in the hospital. The visits were especially nice, and I really appreciate the time you took to entertain me!
Thank you for all of the cards and flowers you have sent to the house. This continues to be a difficult time for us as we are torn between mourning for Gavin and celebrating for Colby. These feelings are reflected in the emails, calls, and cards we receive from all of you. Thank you for thinking of us!
Thank you for the donations you have made, and continue to make in Gavin's memory. We have been notified of donations to the March of Dimes, Wake Med Foundation, and The Twin to Twin Transfusion Syndrome Foundation. If you would still like to make a donation, and are looking for an organization we have a local suggestion - April's Angels. Steve and I worked with this organization last fall, and it meant a lot to us. April's Angels is an organization that redecorates the bedroom of chronically ill children. The bedrooms are re-done to create a fantasy room for the sick child. April's Angels was started and is run by a woman in Cary. Check them out at: www.aprilsangels.org
Thank you all again for everything!
Sunday, August 24, 2008
Colby update
Just a quick update on Colby. He is doing great! He is up to 4lbs 9oz's, has advanced to the least level of care in the intensive care nursery, is maintaining his body temp and is in a modified open air crib (as of today). He is simply labeled a "grower and feeder," which means he just needs to grow some more and learn how to suckle stronger so he can eat on his own (he still has a feeding tube, which is supplying the vast majority of his nourishment). Being 2 mos premature, this is expected, as he is not quite big and strong enough to get all the food he needs.
There is no set time table for his release from the hospital, since no one knows when he will be be strong enough to eat "for himself." Best guess is two or three weeks if he continues on the track he is on.
Jennifer is doing pretty good, considering everything. Her recovery from the C section is going smoothly, and being able to do some "light tasks" is very good for her after 4 mos of modified and hospital bed rest. However, both of us are still devastated by the loss of little Gavin, and are still on a roller coaster of emotions and will be for quite some time. We are thankfully resting well and eating well, so we can be ready for Colby's arrival home. We are spending alot of time with Colby, which helps the both of us (actually, the three of us).
sg
There is no set time table for his release from the hospital, since no one knows when he will be be strong enough to eat "for himself." Best guess is two or three weeks if he continues on the track he is on.
Jennifer is doing pretty good, considering everything. Her recovery from the C section is going smoothly, and being able to do some "light tasks" is very good for her after 4 mos of modified and hospital bed rest. However, both of us are still devastated by the loss of little Gavin, and are still on a roller coaster of emotions and will be for quite some time. We are thankfully resting well and eating well, so we can be ready for Colby's arrival home. We are spending alot of time with Colby, which helps the both of us (actually, the three of us).
sg
Thursday, August 21, 2008
Gavin's short life
Gavin was born at 4:11am on August 12, 2008 and was a very sick little boy from the start. The Dr's best guess at this point is that an infection or a virus got to him shortly before birth (could have been days or even hours before birth). This unfortunate occurrence was most likely not related to the TTTS at all (which actually makes all of this even harder to bear). No conclusive evidence has been found to support the infection/virus theory (negative cultures thus far), but the fact that Jennifer's temperature spiked to 101 and she was violently ill the hour or two before delivery strongly suggests it. The premature rupture of the membranes (water breaking) made the twins more susceptible to an infection as well (which we were well aware of). Also, his compromised body functions and subsequent organ failures resembled an infection/virus that was going haywire inside of his little body. Unfortunately, he did not respond to massive doses of antibiotics or antiviral medicine, and his liver and then his kidney's started to fail.
Even though Gavin was sick and struggling, he was full of fight and life for the four short days we had with him. We had a few fleeting moments of hope for him, as he made some slight improvements from time to time, but he truly never made much progress even though he was obviously fighting very hard (surprising all of the Dr's with his determination and his strength). He then sadly started declining as the end drew nearer. During his way too short life, Gavin opened his eyes some, he kicked and squirmed, he reacted to touch and to sounds, he would flinch/jump at a camera's flash, and he was able to squeeze and hold a finger with his little hands up until the moment that he drew his last little breath. Many family members and a few friends got to meet Gavin, hold his hand, speak to him and pray with him. Daddy even got to change his diaper. He was also baptized his second day here on earth.
He passed away laying peacefully holding his daddy's finger while being cradled in both of our arms. We sang lullabies to him and talked to him constantly and kissed him many times in the hours before (and while) he passed. He left us about the same time of the day as he arrived, around 4:15am. His twin brother Colby was just a few feet away. As amazingly difficult and heartbreaking his last hours and minutes with us were, thankfully, it was peaceful for all.
Even though Gavin was sick and struggling, he was full of fight and life for the four short days we had with him. We had a few fleeting moments of hope for him, as he made some slight improvements from time to time, but he truly never made much progress even though he was obviously fighting very hard (surprising all of the Dr's with his determination and his strength). He then sadly started declining as the end drew nearer. During his way too short life, Gavin opened his eyes some, he kicked and squirmed, he reacted to touch and to sounds, he would flinch/jump at a camera's flash, and he was able to squeeze and hold a finger with his little hands up until the moment that he drew his last little breath. Many family members and a few friends got to meet Gavin, hold his hand, speak to him and pray with him. Daddy even got to change his diaper. He was also baptized his second day here on earth.
He passed away laying peacefully holding his daddy's finger while being cradled in both of our arms. We sang lullabies to him and talked to him constantly and kissed him many times in the hours before (and while) he passed. He left us about the same time of the day as he arrived, around 4:15am. His twin brother Colby was just a few feet away. As amazingly difficult and heartbreaking his last hours and minutes with us were, thankfully, it was peaceful for all.
Saturday, August 16, 2008
Joy and Pain
I cannot begin to explain the joy and pain we are experiencing. It is the hardest time of our lives, as well as the most joyous. Literally, we cry as hard as anyone can cry about Gavin, and moments later, we can smile and feel wonderful about Colby.
Add in a bit of numbness at times, and then start the process all over again. Like Jennifer said, a roller coaster, maybe the world's largest roller coaster, and like Dickens (as Charles posted), it was the best of times, it was the worst of times.
We are also in a whirlwind, spending time with Colby, family, and friends, Jennifer recovering from a C section, little sleep, and trying to figure out memorial plans as well as a departure date from the hospital.
We have a few posts left for this blog, as I don't feel like letting go of this twins page quite yet. It has brought so much information to family and friends about our up and down journey (since May), with close to 2,500 hits to date.
Keep the prayers and thoughts coming as we recover and heal.
With love-
The Guys
Add in a bit of numbness at times, and then start the process all over again. Like Jennifer said, a roller coaster, maybe the world's largest roller coaster, and like Dickens (as Charles posted), it was the best of times, it was the worst of times.
We are also in a whirlwind, spending time with Colby, family, and friends, Jennifer recovering from a C section, little sleep, and trying to figure out memorial plans as well as a departure date from the hospital.
We have a few posts left for this blog, as I don't feel like letting go of this twins page quite yet. It has brought so much information to family and friends about our up and down journey (since May), with close to 2,500 hits to date.
Keep the prayers and thoughts coming as we recover and heal.
With love-
The Guys
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