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.

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

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!

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!

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

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

hospital discharge & coming home pictures!