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

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!

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

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.

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

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.

Friday, August 15, 2008

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!

Tuesday, August 12, 2008

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)

Saturday, August 9, 2008

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.

Wednesday, August 6, 2008

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

Tuesday, August 5, 2008

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.