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!

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.

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!

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).

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.

Pictures of Colby

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!

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

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!

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

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.

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

A long, hard night

Last night Steve and I did what has to be one of the hardest things in life. We said good-bye to our little boy. Our family was here to support us, and our new little family of four spent a good deal of quiet time together during the night. Gavin went very peacefully, and we know he is now a guardian angel for Colby.

Thank you so much for all of your thoughts and prayers, but the little guy needed a little more help from his body.

We are heartbroken about Gavin, but look over to the next incubator and are thrilled to see Colby. I'm sure the next few hours, days, weeks and months will be a roller coaster of emotions (as if the last few months had not been). After the successful surgery in May we really were expecting the birth of healthy twin babies so it makes it that much harder to accept this outcome for Gavin.

Thanks for all the offers of help, but we are just sort of getting by minute by minute. Our families are here, and I get to stay in the hospital a bit longer. I'm not sure how much more updating we will do to this blog since I will probably start a new one for Colby sometime soon.

Again, thank you for all of your prayers and thoughts. I know Gavin felt them all, and he knew he was loved.

Three days old already!

It's Friday morning, and it's hard to believe three days have already passed since the arrival of our boys.

Colby continues to do well, and is even lifting and turning his head! We are all quite impressed - we even got it on video. He's such a strong baby, and we hope his brother Gavin has just as much fight, and stubbornness in him. Colby is a bit jaundiced, so is now working on his tan with his cool shades. He continues to get IV nutrition, but is also getting breast milk through a tube. We will work on nursing over the next couple of weeks as he is a bit young to be able to nurse really well. Steve spent some kangaroo time with him on Wednesday, and I took my turn yesterday. He is not supposed to be away from the bilirubin light for very long so we "hold" him in the incubator more than anything. We are very pleased with how well he is doing, and look forward to taking him home in a few weeks.

Gavin's status is a bit more complicated. His first 24 hours were very scary for us, so scary that we had him baptized early in the morning on the 13th. There is a very dramatic difference between the health of the two babies, and it really baffles the doctors. He started out with a hole in his lung that required a chest tube, but that was resolved yesterday. He has also had fluid in his lungs, but that has been treated too. His liver function was questionable in the beginning, but he is not jaundiced so that indicates that his liver is working. He is not urinating so that indicates a problem with his kidneys. His heart, brain, and bowels seem to all be working, at least as best as they can tell. He is on a ventilator, but can breathe some on his own. He also has trouble maintaining his blood pressure and was on three medications to help him keep it up. This is important so that all of his tissues can receive the proper amount of oxygen. Last night he was weaned off of one of the medications, and he is still stable this morning - good news! Basically, the doctors can not figure out what is wrong with him. At first they thought he was suffering from the infection that sent me into labor, then they looked at metabolic disorders, genetic disorders, viral infections and the list goes on. The best news is that he is still with us, and is fighting hard to stay here. He is on a lot of medication, receives lots of red blood cells, and is very closely monitored. We have lots of hope for him, but at the same time are very worried about his condition. We know the doctors are doing all they can, and they keep us up to date concerning his treatments, but it's hard for them too since they can not pin-point what the exact problem is. He is such a little trooper, and we feel that he will continue to fight to stay here with us, and his brother.

We have had all of our family members here with us over the last couple of days, and we know that has helped Gavin too. I will be discharged tomorrow, but hope to stay an extra two nights if they have the room.

Please continue to keep Colby and Gavin in your thoughts and prayers, and their doctors and nurses too. They are doing such a good job, but we feel their frustration at not knowing exactly how to treat Gavin. We are worried, but hopeful, and every 24 hours that Gavin is stable is huge!

We appreciate all the calls, emails, and offers of help! Right now we are taking things hour by hour and trying to spend a lot of time in the nursery with the boys. Visitation with the boys is very restricted so unfortunately Colby and Gavin may not be able to meet very many people until they come home.

Please, please, please continue to pray for Gavin (Colby too, but he's just doing so well right now!). I think they both know how much they are loved, but every little bit helps, and we want Gavin to know how much we want him to stay here with us!

Pictures of Gavin & Colby

Hot off the press, here are our boys! Gavin(top) and Colby

They are here!

IT'S BOYS!

Gavin Woodfield Guy (Baby B), 3lbs, 9oz, born 4:11am this morning.
Colebank "Colby" Miller Guy (Baby A), 4lbs, 3oz, born 4:10am

Jennifer had a fever show up shortly after midnight (a sign of infection, which was a major risk with the early membrane ruptures). She went into labor shortly thereafter. A C Section was ordered and things moved fast after that. Dr Harden (one of our favorites) delivered.

Colby is doing great. No supplemental oxygen, looks wonderful, and is just getting some IV nutrition for now. Gavin is struggling a bit, but thankfully, has improved some this afternoon, and yes, looks wonderful as well. There are some serious (but treatable) issues with him, and I will go into further detail as we get more information and as he continues to respond, but basically his lungs and heart are not quite up to par in their combined function, effecting oxygen level (saturation) and blood pressure. Again, very serious, but treatable (curable). Keep him especially in your thoughts and prayers.

Jennifer is resting and is doing well. Emails may be the best method of communication for us right now. Needless to say, there is a lot going on, and rest/quiet time is hard to get here.

THANKS TO ALL OF OUR FAMILY AND FRIENDS! IT WOULD BE MUCH MORE OF A CHALLENGE WITHOUT YOUR LOVE AND SUPPORT!
SG, JG, GG, & CG (and our three pups at home)

3 weeks down...? to go...

We thought the babies might be joining us Thursday night, but it was another false alarm. I was having contractions again, and lost most of the fluid around both babies (this water break was more like the kind you see on TV). I was moved to another room (so email one of us if you'd like the new phone number), and monitored over night, but the contractions stopped after about 4 hours. At this point I'm starting to wish the contractions would just continue into labor so we can be done with all of this!!

After losing so much of the fluid, the ultrasound scheduled for Monday was moved to Friday. It confirmed the loss of fluid around both babies, and estimates their weights at 4 lb 5 oz for baby A and 4 lb 1 oz for baby B. The weights are much closer than we thought they would be, but still nothing to worry about. The docs think Baby A must have had a growth spurt just before the last ultrasound since he/she has only put on 5 oz since then.

Even with the loss of fluid, the plan is still to try to get to 34 weeks. So we should have babies to hold in less than 2 weeks! It's nice to see the end of the road (at least this section of the road) in sight. I know the hard part is yet to come, but we'll be happy to be there after all of this!

For now, I will continue to nap, watch obscure Olympic sports like badminton, try to do some more knitting, and convince Steve to play more Scrabble with me.

New link

Check out the ABC news link we just added to the blog (look left for the link). Click on the picture in the article for the actual newscast. It is a recent story of a couple that went through the laser procedure at the Texas Children's Fetal Center. Their timing is similiar to ours (their pregnancy and TTTS surgery both a few weeks earlier than us) and their overall situation closely mirrors what we experienced and are experiencing still. One major difference might be the size of our twins (verses theirs being smaller, especially their "donor" twin). Ultrasound estimates two weeks ago showed Guy Baby A at 4lbs, and Guy Baby B (donor) at around 3lbs, and they should have possibly added another pound each since then.
sg

THIRTY TWO!

32 weeks gestation as of today!! This marks our ultimate gestation goal after we had the laser procedure (28 weeks was the first critical goal, but 32+ was our real hope)! Big milestone needless to say. Most literature and research shows great outcomes for babies who hang in there for at least 32 weeks. The twins may need some time in the NICU (Neonatal Intensive Care Unit) if they come before 36 weeks or so, but that is somewhat expected with these two. Also, if you recall, the average delivery date after the TTTS laser surgery is 10 weeks, and that is when Jennifer's water broke (exactly 10 weeks after the procedure), so we thought the babies were on the way then (7/19). From our perspective, we have essentially bought 2.5 weeks so far since the water broke, which is great since the babies grow so much each day "in."

Jennifer has pretty much been contraction free since late July 20, but has had some minor contractions today (Tuesday). The contractions are not very strong and are not regular. What does this mean? Not sure, the babies could come in a day or two, or in a week or two or more. She is less concerned than I am about these minor contractions, which is pretty much par for the course. "Contractions are normal and will happen from time to time" per mommy (and the Dr's and nurses concur).

Jennifer and the babies are still impressing all of the Dr's and nurses. Baby heart rates and mommy vitals are perfect, and are checked every few hours. Jennifer is a bit uncomfortable due to her belly expansion and the related displacement and scrunching of her core organs and back. Jennifer thinks they are kicking through her skin at times (think "Alien"). It reminds me of that movie when I see her skin pulsating with the baby pokes, but in a good way of course (thinking healthy, active babies). We are now worrying about the delivery (when? C section?, etc), the challenge of feeding twins, sleeping (or lack thereof), ...all the normal baby stuff. That is kinda nice I must admit after what we have all been through.

Thanks for the continued support, visits, calls, emails, prayers and postive thoughts from family and friends. We need all of it to continue.
We will keep you posted, and no news is good news (when something "major" happens, I plan to update our blog very quickly).
Until next time,
Steve

ps: We were expecting an ultrasound yesterday, but found out the next one is not scheduled until Aug 11. Also, I am 0-2 verses Jennifer in scrabble (getting close I must say), and 0-1 in rummy. Feel free to challenge her during visits.

31 weeks!

Still no progress - which is a good thing. Three more weeks!

Still here...

No changes over the last week. Still hanging out in the hospital waiting for the babies. I did get wheelchair privileges on Saturday so Steve took me around the hospital, and I even got to sit outside for a little while. The fresh air was nice! The doctors are still pleased with the babies' heart rates, and will not take any action until I am at least 34 weeks along. That could make for a long hospital stay!

No news is good news

Things here in the hospital are status quo. I'm just hanging out getting my temperature taken every four hours, and being given medicine every six hours - not exactly restful. I have not had any more contractions, and the babies are doing really well. Their heart rates are great and are not showing any signs of stress.

In the last couple of days we've met with a neonatologist and gotten a tour of the intensive care nursery. The neonatologist gave us a lot of information, and gave us an idea of what to expect when the babies come. Like we've known all along, every day the babies stay in is a huge benefit to them - they are gaining about an ounce each day right now!

The intensive care nursery here is very nice - not at all cold or sterile. We will be able to come and go as we please, and they are very supportive of what they call kangaroo care. Kangaroo care is where the baby and parent have skin to skin contact for long periods of time. This helps the baby maintain his/her body temperature, and of course is good for bonding with mommy and daddy.

We are pretty relaxed about everything, and are just taking things one day at a time. Thanks for all of your thoughts, prayers, and communications - we really appreciate it! This is the easy part! I think things will get much harder once we have to leave the babies here in the nursery and can't take them home with us.

A change in bed rest location

We had a little development late Friday night - my water broke. So at 1:30 in the morning we were on our way to the hospital! The doctor confirmed that my water had broken and checked out the babies. The babies were, and still are, in good shape. They are estimated to now weigh 3 lb 12 oz, and 3 lb 5 oz - good sizes!

After getting checked out they moved me to a room to monitor the babies' heart rates and any contractions I might be having, started the steroid treatment to help develop the babies' lungs, and put me on IV antibiotics to prevent any infections. Late Saturday morning I started having mild contractions, but nothing to indicate I was in labor. The babies were not in distress so I was given extra IV fluids to try to calm the contractions. It worked. Once the contractions stopped I was moved to another room where things will be monitored a couple of times a day.

When we got here early Saturday morning we weren't sure what was going to happen, but we think we may have bought some more time for the babies. We're not sure how long I will be here, but I might be here until the babies come (hopefully a couple more weeks).

Things here are still good, and the doctors and nurses are all fantastic! Saturday was hard with so little rest, but today has been much better. Steve got to sleep at home, and came in today very refreshed : )

I have access to email, and I have my cell phone so keep in touch! We'll keep the blog updated with any updates.

Getting bigger!

Friday, July 19th

My belly is growing! This is a good thing since it means the babies are getting bigger too!

Discovery Health show on twin to twin transfusion

The Discovery Health channel (channel 35 in the Raleigh area) has a show on twin-to-twin transfusion syndrome called "Twins in Peril." It tells the story of four sets of twins who have different levels of twin-to-twin from diagnosis through delivery. It's pretty good, and informative too. The show aired while we were in Cincinnati, but we didn't know it until we got home. Since then I've been checking discoveryhealth.com, but had not seen when it would air again. Tonight, as I was flipping through the channels, I came across the show and of course we watched it! It is a few years old, and Steve's sister-in-law now works at the hospital in Tampa where the surgical part of the show was filmed - what a coincidence! The twin-to-twin surgery is no longer performed at that hospital, and that doctor, Dr. Quintero, has moved to another hospital in the area. Watching the show was interesting too because many of the articles we read, when our babies were diagnosed with twin-to-twin, were written by Dr. Quintero.

Steve and I could completely relate to the couples on the show and watching it brought back a lot of strong emotions. We are thrilled that our babies were candidates for the surgery and things continue to go so well. If you watch the show you'll see that some of the ladies watch the surgery - I did not do that! I wanted to be completely oblivious to what was going on during the procedure!!

The show will air a few more times in the next month. You can see the schedule on discoveryhealth.com, or make a note of these dates and times:
July 19th, 12 pm
August 21st, 8 pm
August 21st, 11pm

Today's Doctor visit

Profile of baby B!

We got great news at the doctor this morning. The babies are growing really well! Last time we had an ultrasound Baby B was in the 10th percentile for growth - today he/she was in the 28th, and is estimated to weigh 2 lb 3 oz! We were very surprised to see so much growth, but obviously very pleased. Baby A is also doing well and has jumped up to the 70th percentile and is estimated to weigh 2 lb 10 oz. We couldn't have asked for better news! We feel like we now have a normal twin pregnancy, but the doctors will continue to watch things very closely.

The babies move and kick a lot these days. I think they are positioned in an X, one sort of under the other. Baby A is head down and kicks pretty hard on the top of my belly. They aren't keeping me up at night yet, but I'm sure that will come soon!

Tomorrow is what I consider to be our biggest milestone (until the birth) 28 weeks! I'm feeling very confident now that we will have two healthy babies when they decide to come out. I'm also very glad to be confined to the house now : ) I never thought I would say that, but as the babies get bigger, I get bigger, and more uncomfortable! I'm suffering from many of the common pregnancy complaints - nothing new for those of you who have gone through this, but I'm lucky to be able to take it easy in the air conditioning and have Steve take care of me. Not every woman is that lucky when she is pregnant!

Please vote!

We've had 18 votes so far, and 72% of the voters think the babies are girls!
Let us know what you think the babies are - the link to vote is in the top left corner of the blog.

Baby Shower

Mom, Me, Laura, and Aunt Lisa

The hostesses (and Lindsay)


Mom-in-law, Laurie, Carson, and Me

What a cute cake!

My girlfriends put together a wonderful baby shower! We got so many wonderful things, and it helped get us excited about the arrival of our twins. I was especially excited to go to the shower because when we found out about the twin-to-twin transfusion I wasn't sure we would even have a shower. I had asked that the shower be put on hold until we knew that the babies were doing OK. Everyone was so patient, and once we reached about 25 weeks I finally felt confident enough to schedule the party. It was so nice to go to someone else's (Jennifer Taylor's) house for a little while, and visit with everyone! Thank you to everyone - I had a great time!

From Steve's perspective

Another week and half has flown by since Jennifer’s last post. Time is moving fast these days (well, for the most part), much faster than we had initially anticipated after first hearing the words back in early May, “modified bed rest for the remainder of the pregnancy.” That is a good thing I suppose. We are both quite busy, me a little busier than her obviously, but she is being quite productive for someone tied to the couch, with all the knitting (3 baby caps so far?), reading, web surfing, napping, and TV watching (mostly educational programming, i.e., “What Not To Wear,” various home improvement shows, and of course “Law and Order”). The visits and meal drop offs help her pass the time as well, and of course, are much appreciated!

We had two doctor visits this week, and just to sum it up, both appointments were short and sweet, with things pretty much nice and stable with our twins and mom. With all the doctor chats and good ultrasound test results to date, I (we) are finally getting somewhat relaxed about these appointments. I had compared the anxiety level of going to our doctor appointments to showing up for a test unprepared (think college or high school pop quiz) or having to give a public speech without any knowledge of the topic! So much is out of your hands and your control (and if you are a worrier and like to be well prepared,, that can be a nightmarish scenario!). The only thing we can control, and have done so very well, is keeping Jennifer rested and well fed. That seems to be paying dividends, and lets hope that continues to be the case. Again, our goal is to keep these babies in until 32 weeks or later (early August or beyond!), and currently she is at 26.5 weeks.

We continue to feel good baby “kicks” from both babies, which is encouraging to feel these little ones pack such a punch. The only minor set back for Jennifer is a mild case of carpal tunnel syndrome in both wrists. The doctors said this is normal, and we plan to get some wrist braces or wraps to maybe help alleviate some of her discomfort (usually worse in the morning or after naps). I am beginning to make some progress on my “honey do list.” I have made a lot of progress with some yard projects and am now focusing more on the inside (per Jennifer’s request, and per some common sense I suppose). Just this weekend, the nursery has taken shape with the assembly and set up of a crib and the organization of the gifted and acquired baby supplies, as well as getting all the non-baby related boxes and items out of the nursery. Jennifer has also picked out some fabric for the nursery window treatment and crib(s), and our friend Edward Walker is going to assist with the sewing and related set up. I have even spent some time alone in Raleigh area fabric stores chasing down fabric swatches and such (just one example of my dedication to my wife and twins!).
Until next time.

25 weeks and counting...

Tomorrow will be 25 weeks, and we are entering the stage of viability. This is a big deal with twins since so many come early, and we feel better with every day that passes. I'm sure the Ensure Steve makes me drink, and my time at home, on the couch, helps keep the babies in, and provides them much needed nutrients.

We went back to the perinatologist this afternoon for another ultrasound to check the babies for growth. Overall, things were really good! The fluid around each baby was good, and the membrane between the babies is still intact. Also, pre-term labor is still not a big concern right now - yea! They also took measurements of the babies. Baby A is estimated to weigh 1 lb 9 oz, which is the 50th percentile for twin babies at this stage - pretty good! Baby B is estimated to weigh 1 lb 4 oz, which is in the 10th percentile for twin babies at this stage. The growth discordance between the two babies is 19%. We were pretty pleased with all of this information, and we expect Baby B to stay small for the duration of my pregnancy as a result of the twin to twin syndrome.

However, Baby B being in the 10th percentile and the growth discordance of 19% puts us on the edge of concern. The doctors get concerned when babies fall below the 10th percentile, and growth discordance is above 20%. So, we are not quite out of the woods yet. There is a small chance that the twin to twin syndrome was not 100% corrected which could cause growth restrictions of Baby B. On the other hand, Baby B might just not have had enough time to catch up yet. So, the doctor wants to take another look next week.

On a fun note - Steve got an early Father's Day present. Baby B was pretty active Friday night, and Steve got to feel some pretty strong kicks for the first time. We've been waiting a long time to feel significant movement so it was a lot of fun to feel such strong kicks. It also gave us encouragement that the babies are growing bigger and getting stronger!

My bed rest continues to go well. I retract what I said about TV being pretty good. I found out, after my first week on the couch, that episodes are repeated within a very short time! But I have improved my knitting skills, and we continue to be well fed by our friends and family (thank you!). We've had lots of visitors which really helps to pass the time. With any luck, the next 2 months will pass so quickly that I won't get everything done that I want to get done. I feel like I've become quite the procrastinator; always thinking that I have plenty of time before the babies come : ) I've also gotten pretty good at taking naps - me and the dogs snoozing in the living room!

Yahoo group link

Several folks have asked for the link to the yahoo group.

here it is:

http://groups.yahoo.com/group/jenniferandsteveguy/

Once there you have to sign in with a yahoo ID to view the calendar.

We really appreciate all of the dinners - they are yummy, and help us out so much!!

23 weeks!

Time flies when you're laying on the couch all the time! I was so happy to get out of the house for a doctor's appointment that we decided to take some pictures. I even put on real clothes and a little bit of make-up!

We've had good news this week from both the perinatologist, and the OB! The fluid levels around both babies look good, and the blood flow to each baby looks good too. The docs also think I am not in danger of pre-term labor any time soon. Hearing that was a huge relief to us! The perinatologist will look at the growth of the babies in two more weeks, and we hope Baby B shows some improvements. We also found out that I should be able to deliver them at the hospital of our choice - Wake Med. just a few minutes away (instead of Duke).

I will continue the modified bed rest and keep the babies in as long as possible. I've been filling my days with visits from family and friends, emails, reading, and knitting (I'm getting better and faster!).

One week down!

It's amazing how tiring laying around all day is! The first week is over, and it went pretty well. We have had a lot of visitors, and some great meals! The calendar that Gaines and Miranda set up is working really well, and we really appreciate the help, and the visits! I'm surprised by how much good stuff there is on TV; I can still find new things to watch everyday. I've also started knitting, so please don't laugh at our children when you see them in really ugly sweaters in a few months! Steve is doing a great job taking care of me, the house, and the yard, and the dogs protect me from the crazy neighborhood squirrels.

Yes, they are still Baby A and Baby B!

I promise we do not know what gender the babies are - sorry for any disappointment that causes : )

Through all of this we kept telling everyone that we did not know what the babies are, and no one slipped up - amazing! We had to turn our heads a few times (not that we could tell what was on the screen), but we never saw anything! After going through all of this, most people do know what the babies are, but I still want the surprise at the end. Steve almost caved in a few times, but he held out for me, and now I think we can make it until the B-day.

May 19th

Another visit to the perinatologist today for another ultrasound. Things still look good, but Baby B has less fluid than last week. The Dr. did not seem too concerned, and wants to see us again in two weeks. We did not have our favorite tech, Latrell, so we didn't get any new pictures : (

The babies are both small (as compared to where they should be at this point), so we are still hoping to keep them in as long as possible, and get them as big as can be.

Back in Raleigh.

It was so great to get home! We were happy to see the girls, and be done with all the stress in Cincinnati. Steve was anxious to get back to work, and I had hopes of working from home while on bed rest.

But again, nothing is easy. While we were gone, Raleigh got a lot of much needed rain. Evidently lighting from one of the storms hit our house and fried our internet router, blew out our freezer downstairs which had several Dream Dinners in it, and found a problem with our brand new roof (it found its way all the way to our living room ceiling). So, poor Steve spent 3 days getting our internet working again (we thought wireless would be really important for me to work from home), and had to get the roof taken care of, in addition to taking care of me.

Thankfully, our friends Gaines and Miranda set up a yahoo group to bring us dinner twice a week. What a great help that will be! We look forward to visiting with everyone who comes over, and appreciate all of the thoughtfulness!

It's quite an adjustment to be forced to stay at home with very limited activity, especially now that I am feeling better and have a little bit more energy. I guess the closets will just stay messy, and the garage full of junk until next year when I get some more PTO! It looks like I won't even be able to work from home, which we were both hoping would be a big distraction for me. Not working is probably for the best, and will allow me to rest more. 12 weeks or so is a very short period of time in the whole scheme of things, but it does take a couple of days to get used to the idea. Another positive is that I get to spend a lot of quality time with our four legged children before the two legged children get here. Although their napping schedule does not seem to be impacted by me being at home : )

Four days after surgery.

Another round of ultrasounds. I can just about sleep through them now.

All of the information was sent to Dr. Crombleholme (in the picture with me), and he said things looked as good as they could look. yea!! what a huge relief for us! The blood flow looked good, and the fluid levels looked good too. Now it was just up to me to rest and incubate the babies for as long as possible. Another risk of the surgery is the babies coming too early. We were told that, on average, when this procedure is performed, the babies come 10 weeks later. For us, that would be around 29 or 30 weeks, which is not ideal, but would be OK. We are really hoping they decide to stay in a lot longer!

After getting the good news, we hit the road to head home. We got a little bit east of Knoxville, and celebrated our good news by staying at a Best Western for $40, and getting a good meal at the Sagebrush with a panoramic view of Interstate 40 : )

The day (and days) after.

Dr. Livingston took a look at the babies on Saturday morning, and they both had heartbeats! yea!! He also said the blood flow looked much better, but we would know a lot more when we came back on Tuesday. This procedure is so amazing that they see incredible improvements in just a few days. Dr. Lim and Dr. Crombleholme also came in and talked to us, and checked to make sure the babies and I were all doing OK. I got discharged after breakfast, but we took our time, and chatted with the nurses for quite a while. The only place we had to go was to the hotel, and I was the only patient there so the nurses had time to chat!

Saturday afternoon was spent napping, and adjusting to being on bed rest for the remainder of my pregnancy. I was a bit sore, but felt pretty good overall, and the hotel bed was so much more comfortable than the hospital bed!

Steve took great care of me, and made sure I had plenty to eat, and fresh icy water all the time. He's a great nurse! We even got a visit from our friend Miranda Weaver who was in town on business. Her visit was a nice distraction, and a good reason for me to get dressed!

Surgery day

May 9th
Another early start. We were at the hospital at 6:00 am to check in and surgery was scheduled for 7:30. I was scared to death (I think Steve was too). It seemed like there was a team of nurses to take care of me, and they were all wonderful. They did another ultrasound to get another look at the babies, and got me prepped.

The nurses rolled me downstairs to the pre-op area, with Steve beside me the whole time. Dr. Crombleholme and Dr. Lim came to check on us to see if we had any more questions, and to get the final OKs. The anesthesiologist came and prepped me for the epidural, and the chaplain from the Fetal Care Program said a prayer with us. I took something to make me groggy and off we were. I was hoping to be very groggy for the surgery so I would not hear the doctors talking, but again, things did not go according to my plan! I was in and out during the procedure and did hear a lot of talking, but what I heard were all good things. I did ask for more "groggy" drugs, and she said she gave them to me, but I must have been immune! The best thing I heard them say was that the placental share was 70/30. This meant, as best as they could tell, Baby A had 70% of the placenta and Baby B had 30% of the placenta -enough to live. This was one of our biggest concerns going into the surgery. Before getting inside they could not tell how much of the placenta Baby B had, and if it was not enough, the baby would not be able to live on its own. The point of concern is 80/20, so we felt really good with a share of 70/30.

The surgery went really well. They did not have to do the c-section procedure, in fact the incision is only about 1/2 an inch on my left side. They use a long, hollow, metal shaft to go through everything and then put a camera and a laser through this to look at the placenta. Using the camera, they found 11 vessels being shared by the babies, and used the laser to cut them. An echocardiogram in a couple of days will indicate whether or not all the vessels were found and cut. They also used the laser to put 5 holes in the sacs between the babies so the fluid would even out more quickly, and provide more instant relief for both babies. The third part of the procedure was the amniotic reduction. They removed a gallon (yes, a gallon - think about carrying around a milk jug in your belly, in addition to everything else!) of fluid from around Baby A. The procedure took about an hour, which was another unknown going in. It could have lasted anywhere from 45 minutes to 3 or 4 hours. The doctors were pleased, and we were thrilled.

I think it was only a few minutes later when I saw Steve, and the first thing I told him was, "it's 70/30," with a big smile. He asked if I would remember saying this to him, I do. The doctors talked to him, and told him how well everything went, and that we would know a lot more in the next 24 hours or so - more waiting.

Back up to my room where I had the undivided attention of two nurses for my entire stay. Rock star treatment! I was very thirsty, but couldn't drink or eat until they were sure I wasn't going to go into labor. After the epidural wore off I did have some cramping, but nothing more than what they call irritation contractions. My uterus was not happy with being messed with so it was contracting pretty regularly, but minorly. About 7 pm I got the OK to eat! The contractions had subsided, and they felt I was out of danger. Another risk of this procedure is going into labor and losing both babies, but thankfully we got through that part with not too much trouble.

The only negative part of our stay was that Steve did not get to eat for free. He had to go to the cafeteria to get dinner because the "room service" person was not very nice, or cooperative. Steve spent the night with me in a very uncomfortable bed/chair - what a trooper. It was a good thing because Dr. Livingston came in at 7:30 to check on the babies.

The decision

May 8th
The program at the Fetal Care Center is designed to put the patient in charge. They do all the testing and present you with more information than anyone could possibly process, especially in such an emotional situation. Dr. Livingston recognized that we were in Cincinnati because we wanted to save our babies, but he still presented us with the option to do nothing invasive, and to let nature take its course. However, he told us that they were rearranging their schedules, and trying to get operating room space for Friday morning. After meeting with him on Wednesday afternoon we left the hospital and were to call back with our decision about the surgery. We called back a few hours later and confirmed we wanted the surgery to take place.

The testing told them a lot about our babies and things that were going on, but there were still a lot of unknowns. They did not know how many vessels the babies shared, or how much of the placenta was nourishing each baby. They did not know if they would be able to see the vessels in the placenta, or if they would need to do something along the lines of a c-section, but put everything back in me when they were done. We had to take all of this into consideration and hope that after it was all done we would have at least one healthy baby. It was so scary, and so emotional, but we knew surgery was the best option for saving our babies.

A minor concern for us was the cost of the surgery. We went to Cincinnati having no idea how much the surgery would cost, or whether or not insurance would cover it. Obviously we would do what ever we needed to do to make things work out for all of us. Luckily, on Thursday we found out that the folks at the Fetal Care Center had contacted our insurance provider and it looked like everything would be covered. It was a relief to find this out, but we would have proceeded regardless. The center is so wonderful that they do not turn away any patients, even those who can not pay. If you are looking for a place to make a charitable contribution, please consider Cincinnati Children's hospital, and the Fetal Care Center specifically; we are so lucky they are there, and that Dr. Crombleholme has the Fetal Care program.

http://www.cincinnatichildrens.org/give/ways/default.htm

On Thursday we went back to the hospital for pre-op testing. They took blood, and did an EKG on me. Seemed easy enough, but nothing had been easy up to this point so why should this be? The tech who did the EKG thought it looked funny, and the nurses helping us had a very hard time getting a cardiologist to look at the print-out to give an OK for me to have surgery. We waited around for about four hours before getting the OK. Evidently I have a "different" heartbeat, or something like that. Things worked out, but after all that we had been through, we were not going to let some funny reading on an EKG prevent me from the surgery on Friday!

After such a crazy day, I needed a pedicure (plus the sand in Grand Cayman did a number on my toe polish!). The nurses suggested a great place to go; I had a wonderful pedicure, and Steve got a mini-massage. Perfect for the day before surgery!

On to Cincinnati.

May 6th
We spent our 3rd wedding anniversary driving to Cincinnati, not exactly romantic, but for a good purpose. We were very worried, but hopeful our babies would be taken care of by the doctors recommended to us. It took us 9 hours, with lots of potty breaks : ) The drive through Virginia and West Virginia was very pretty, and the weather was great.

The hospital helped us with hotel reservations at a discounted rate at a very nice place just a couple of blocks from the hospital. We checked in, got some dinner, and some rest before a very long day of testing.

http://www.fetalcarecenter.org/fetal-surgery/ttts/surgery-ttts.htm

May 7th
Our first appointment was at 6:45 Wednesday morning! I had an MRI on my belly which was not too bad. Next was an ultrasound to look at the anatomy of the babies, and take lots of measurements. It took two technicians 3 hours to get all the information they needed (several potty breaks were needed here too!). The last test was an Echocardiogram to look at the babies hearts, and the blood flow in the umbilical cords. This took another 2 1/2 hours - whew! I think it took so long because there are two babies, and because Baby A can move around so much it's hard to get readings, on the other hand, Baby B is so scrunched, they have a hard time getting a good look at everything.

We finally met with Dr. Livingston at 4:30 and he presented us with all of the test results from the day. He had a presentation with over 1500 images from the MRI and the ultrasounds - pretty amazing when you think how long you normally have to wait for "test results." He was very thorough in his discussion with us, and presented us with all possible scenarios. The meeting was very emotional, and the babies were in worse shape than we had realized. Baby A, the recipient, already had a thickened heart, and was struggling to handle the extra blood volume. Baby B, the donor, was 30% smaller than Baby A, and the growth of its body was being compromised so as not to impact brain development. Putting all of these things together, the doctor suggested that we proceed with the laser surgery. We agreed.

Not the news we were hoping for.

May 5th
We did not get the news we were hoping to get at the Perinatologist appointment. Baby A had about the same amount of fluid, but Baby B had much less. Not a good sign. The doctor was pretty sure that the babies were suffering from Twin to Twin Transfusion Syndrome, and he was referring us to specialists for treatment.

The specialists he recommended were in Philadelphia and Cincinnati. We thought we lived in a pretty medically progressive area with Duke and UNC nearby so we were very surprised to hear that we would have to travel for treatment.

The folks at the Fetal Care Center at Cincinnati Children's Hospital contacted me Monday afternoon, and said that we needed to be in Cincinnati for testing starting early Wednesday morning. Things were moving very quickly!

Vacation!

April 27th to May 4th
Grand Cayman! What a great place to relax and unwind after tax season, and before the arrival of twins! There were several other pregnant ladies on the beach so I didn't feel too out of place. Steve's biggest worry each day we were there was to get down to the beach early so we could get an umbrella and chairs on the front row. He took his job seriously, and we had front row seats all week!

We did worry about the babies, but tried not to dwell on the issue. We really hoped for good news upon our return.

We had a beautiful week at the Marriott, did some snorkeling, ate great food, got served drinks (lots of virgin pina coladas) on the beach, drove around the island a bit, took a submarine tour at night, and did a lot of reading - perfect!

Uh-Oh

April 24th - Level 2 Ultrasound
Things had been going so well up to this point. Even at this appointment the babies looked great, except for the amount of amniotic fluid around each of the babies. Steve and I could tell something was a little bit different about Baby B; it seemed more scrunched up, and the tech got much quieter while she was scanning Baby B. After she got all of her measurements, the doctor came in and told us it looked like our babies were showing signs of Twin to Twin Transfusion Syndrome. What??

Twin to Twin Transfusion Syndrome is a rare condition that only affects identical twins who share a placenta. What happens is that there are vessels in the placenta that are being directly shared by the babies, and this causes one baby to get too much blood, and the other to get too little. One baby ends up getting bigger, generating much more amniotic fluid, and having heart trouble due to the extra blood. The other baby suffers from lack of nutrients which results in too little amniotic fluid, and too little growth. The smaller baby can also suffer from heart trouble.

The first thing we read about the condition was that if left untreated, especially when diagnosed as early as our babies were, that the condition is just about 100% fatal. We were terrified. On the other hand, there was a way to correct the condition, through laser surgery, but we would have to travel to Cincinnati or Philadelphia for treatment. Wow - a lot to process. We told the doctor we had a vacation planned for the following week, and he said it was OK to go, but to come back Monday when we returned.

So, we left our appointment with a million questions, and nothing to do but wait until the following Monday to see if there were any changes with the babies. We had hope that the fluid levels would stabilize, and we would not have to go thorough surgery.

April 25th
We had a routine appointment scheduled with the OB, and tried to ask him some questions about the syndrome. He really didn't know too much, and put it in perspective for us. We go to a pretty big office that delivers about 1000 babies a year. Of those, maybe 2 women have identical twins, and of those maybe 1 every couple of years has this syndrome. So, there are not a lot of people who deal with our situation - great. He also measured my belly, and at 17 1/2 weeks, my belly was the size of a belly 7 months along with one baby. I was huge! I also had a lot of swelling, especially in my left foot and ankle. This Doc attributed the swelling to the twins, and being so big. To me it still seemed a bit early to have so much swelling.