There was a reason I was thinking about limbo though, because that's where we are. In a state of nothing, waiting for an undefined event that we can't control or predict. So, its very frustrating. We go up there every day and interact with him and fuss all over him, after all he is the cutest baby in the world. We are in this weird state where we spend too much time and not near enough time with him. It takes forever, but it goes by in an instant. So I know we're waiting for him to take a bottle on a consistent basis, but its just really hard to tell when that will be. He seems to be making progress, but its slow, some days are better than others. I'm tired of saying "maybe a week or so". I think people are starting to doubt my knowledge of the situation.
Rebecca is obviously more than ready for Thomas to come home. I try to tell her that its no big deal, that he will be coming home soon, but I know she doubts my knowledge of the situation. Her patience is wearing thin, and as much as I fear how we will handle taking care of Thomas on our own, I'm ready to move forward to the next step. I know its soon, but not knowing exactly when is really wearing on both of us.
We did have something happen today that gave us a little perspective again and will probably help us through the rest of the time. Rebecca got an email from a friend who's family member just gave birth to a preemie. His name is Gavin and he was born this week at 29 weeks and weighed 1 pound. From what I understand, his parents read this blog and have been rooting for Thomas as they've led up to their own miracle event, so I hope they don't mind if I paste their story into this blog so that you can add Gavin to your prayers. Rebecca and I both read this today and we each found it somewhat hard to get through, because Gavin is walking a similar path to Thomas. We are very happy Gavin is doing so well and hopefully will find his journey as easy and successful as Thomas has. The trip down memory lane was a little tough, but worthwhile. I apologize to his parents if they are blogging this, I don't mean to steal their thunder (I'm just using you to make it appear that I've written alot in my blog). So without further ado, the story of Gavin:
Hello Friends & Family,
First and foremost, we’re pleased to announce that on May 22nd at 10:51am, Gavin Michael Baldwin proclaimed himself to the world…well, the best he could weighing in at whopping 1 pound (which is 460grams or 16ounces) and 10.5inches long! He was 29weeks and 1 day into the gestation period; other words, he was 7months into the pregnancy….so 2.5months early. He’s redefined the term, “lil oompa loompa”…and referred to as a “micro-preemie.”
Gavin staked claim to a corner spot in the neonatal unit (NICU) of St. Vincent Hospital and will likely remain there for two to three months. He’s in stable condition, which is a “relative” term for a dude his size…his condition could turn for the better or worse in a matter of minutes, but he’s a very determined little boy so we’re confident his resilience and determination will trump his obstacles. In terms of his immediate prognosis:
· The doctors are merely working to stabilize his respiratory and digestive systems before they get too aggressive with fattening him up.
o Respiratory: Miraculously, he’s breathing 86-94% room oxygen without the assistance of a respirator! As a back-up, in case he gets too tired to breathe or forgets, there is oxygen running through tiny prongs in his nose.
o Digestive: This is Gavin’s biggest obstacle. Admittedly, if our little tyke could just muster out a good “poop”, then we’d all take a long sigh of relief. J His stomach is tolerating the small amounts of milk he’s receiving (about 1 teaspoon every 4 hours via drip system); however, his bowels aren’t “working it through”…so he’s starting to back-up in his intestines. L Unfortunately, the doctors can’t increase his (much needed) milk supply until his bowels comply. For those throwing out prayers, please ask the good Lord for a solid poop deposit in the coming days!
· Gavin was born with three layers of skin vs. the seven layers of a “mature” infant, so his skin dries out and bruises EXTREMELY quickly….to combat that; he’s greased up with an industrial strength lotion J and wrapped in commercial-grade plastic wrap…much like you’d wrap up a burrito! It’s counter-intuitive and scary to see an infant wrapped in plastic (try being Danielle and me), but seriously folks, it’s helping to save his life by protecting and nourishing his skin (the body’s biggest organ.) Anyhow, don’t be alarmed by the pictures.
· To combat jaundice, he’s “fake-baking” under ultra-violet light 24hours a day and wears little glasses to protect his eyes. The nurses are diggin’ his couture “preemie-Prada’s” – see attached pic.
· Like all severely growth restricted babies, another concern is blood pooling on Gavin’s brain. Once again, he overcame an obstacle as yesterday’s brain scans showed zero signs of blood! He will likely have 2 or 3 more of these scans as he progresses along….
Bottom line, Danielle and I are praying for solid, boring days as they relate to Gavin. We’re living and surviving by the pseudo-mantra, “No news is good news.” Gavin just needs to breathe, sleep, eat and poop……that’s his only mission. Thank you to all those that have reached out and embraced us and our little boy! Many of you are already aware of the “back-story” that took place last Thursday/Friday, which ultimately led to Gavin’s birth; however, for those that aren’t fully looped in….I plan to send out a follow-up email detailing it.
Thanks again for the love and support…and keep those prayers coming!
Mike, Danielle & Gavin
From: Baldwin, Danielle
Sent: Friday, May 08, 2009 3:52 PM
Subject: Gavin Update
Hello Friends & Family,
It’s now been 8 weeks since Black Friday, the day we learned Gavin was not progressing at a “normal” rate and was in serious jeopardy. Two months later…two months longer than the doctors thought feasible. You can’t help but rejoice and find solace in that statement. J We remain seated, firmly buckled, with our hands tightly entwined and bearing determination on our faces as the next roller coaster ride departs; Gavin’s journey is far from over.
Today we had our bi-monthly ultrasound appointment, followed by a routine doctor visit. The ultrasound and appointment went pretty much as predicted. Not a lot of change, aside from Gavin growing another +100 grams. His weight is now roughly 380grams or 13ounces (500grams = 1 pound.) He should be roughly 900grams (or 1 and 2/3 pounds.) He’s consistently grown 100grams the last two ultrasounds (so every 3.5 weeks he pads on another hundred.) Not good, but then again, not terrible. At this rate, he’ll be 1 pound at 30 weeks (most babies would weigh 3 pounds.) They also measured the amount of amniotic fluid, which remains sufficient and adequate. To review, the presence of ample fluid validates that it’s properly running through Gavin’s digestive tract (it’s also vital in developing his respiratory system.) They checked his heart, which was strongly beating at 156bpm; they checked his brain growth, which appeared normal…and lastly, the fun part: they checked him using a 3-D ultrasound scanner, which allowed us to really see him close up in color! Very cool. He was sleeping and tucked up comfortably….appearing very angelic and handsome!
Our plan is to revisit the doctor in 3 more weeks (that’ll be 30 weeks) and get another ultrasound and weight measurement. If he’s at the 1 pound mark or better, then they’ll start moving us to a delivery schedule (if that’s the best course of action.) They can better pump him up outside the womb…and obviously he can be monitored better. There’s not much we can do, but remain hopeful and positive. It’s completely out of our hands….and admittedly, there’s even comfort in knowing that.
Thank you again for all your warm, encouraging thoughts and prayers. The outreach has been phenomenal; and honestly folks, we couldn’t do this journey without your support…so thank you for jumping into our roller coaster and following along with us!
Hugs to each of you.
Mike and Dani
--------------------------------------------------------------------------------
From: Baldwin, Danielle
Sent: Thursday, April 23, 2009 5:39 PM
Subject: FW: Gavin Update
Hello family and friends,
Well, it’s been 6 weeks (March 13th) since we learned that Gavin was not developing correctly...and that we had a long road ahead of us. We've had more ups & downs on our emotional roller coaster than we signed up for; and unfortunately, we won’t be getting off any time soon. (Ha, I heard once why roller coasters only last 60 seconds: Most folks can only go up and down so many times, then they want off.) Alas, we will continue to stay seated and ride out our journey since our little Gavin has once again proven to be a fighter!
We had our 2 week ultrasound today, which validated our hopes & wishes that Gavin is a hearty fighter and defies the medical journals. He's floating around in sufficient amounts of amniotic fluid, which means it's circulating through his system correctly. His heart rate continues to be strong and the inner-workings of his heart look good. He even had the hiccups during the ultrasound! The hiccups are a good sign as it shows he is practicing his breathing and his digestive system is developing correctly. At one point during the ultrasound, Gavin even stuck his tongue out at us – you gotta love that defiant attitude! Gavin continues to make us smile through all this grief and hardship.
For those that have encountered regular (and extended) visits in the medical world, know that relationships with office staff, technicians and nurses can develop pretty quickly. We have found comfort in one particular ultrasound technician; she provides us solace during our appointments, telling us exactly what she is looking at...and explains what it all means. There is a reason for this story: Today was not a day that Gavin was to be measured, but since she knew our situation, she did a measurement (w/o the doctor knowing) - he has indeed grown and packed on some grams since his last visit (two weeks ago.) He continues to fight given his environment...and we love him for it!
During today’s visit, we also met with a neonatologist about the second half of our journey. He gave us an overview of what to expect given how small Gavin will be when he enters the world. (To put Gavin's size into perspective: he’s currently just over 300 grams; there are 500 grams in 1 pound...and he should be slightly over 1 pound by now.) Our goal is to get Gavin to +500 grams and pass 28 weeks....at that point, he could (in theory) sustain life outside the womb and reside in neonatal care. At this time, we do not have definitive dates on when the doctors could deliver him, since it's so dependent upon his weight gain. We need to get Gavin to at least 1 pound and the doctors will go from there. He will be 25 weeks on Sunday.
We have a long journey ahead of us...and need all your prayers. Please pray for Gavin to continue to fight and grow! Thank you! We know there is only One person that knows Gavin's future and that is our heavenly Father; and without that comfort, I don’t know how Mike and I could continue through this journey. Our lives are truly in His hands. My best childhood friend (thanks Amy) sent me a verse that I'd like to share:
“You made all the delicate, inner parts of my body and knit me together in my mother’s womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.’
Psalm 139: 13 & 16
Thank you ALL again for your love, prayers and support through this tenuous journey; it has truly touched us in so many ways!
Hugs to each of you.
Mike and Dani
From: Baldwin, Danielle
Sent: Monday, April 13, 2009 8:40 AM
Subject: Gavin Update
Hello to all our friends and family~
As most of you know, we had another ultrasound on Thursday to see how our little Gavin is developing. In a nut shell, he is doing OK given his prognosis. He still has lots of amniotic fluid (which is vital) and he was kicking and squirming around like any active little boy. They did an intense study on his heart; he has a nice strong heart beat and all his valves and chambers are normal. All his other major organs looked fine and healthy. They also measured Gavin for weight and size - he did grow 2wks in the 3.5wks from his last measurement. Yes, he grew…but not at the rate the doctors had hoped or where he ought to be on the “charts.” Bottom line, aside from being very small, he’s developing. The doctors are very concerned with his neurological development due to potential lack of oxygen (from low blood nourishment), which obviously really scares us.
After the ultrasound, we met with our doctor. She explained the tenuous, delicate bubble that Galvin’s walking on….and that she’s very pessimistic about his development and survival. On the flip side, she or any of her colleagues can’t explain what’s wrong with the pregnancy, what’s wrong with Gavin or why he’s defying “textbook” methodology….so their uncertainty is both frustrating and scary.
Our plan for Gavin is to follow the course that we have been on…for us, as long as he continues to fight so will we! At this point we are scheduled for ultrasounds every two weeks. If Gavin can continue to keep doing what he is doing…and get to 30-32 weeks (he was 23wks on Sunday) then at that point the doctors will monitor him very closely and likely take him by c-section. Some babies in this situation are better outside the womb then inside at this point in the pregnancy because they can do so much more for the baby (i.e. steroids and better nourishment.) Of course if he can make it to this point he will be in neonatal care for many weeks. From there, we’ll hopefully discover how ‘sick’ (handicapped) he may/may not be…
Mike and I are literally taking it day by day, as we do not know what tomorrow may bring. Yes, Gavin could leave us at any time, his situation is very critical but we pray that God has given us a fighter! We need prayers from each one of you…and believe me Mike and I have felt them. Thank you all so much for reaching out to us; we couldn’t ask for a better “safety net” that you’ve all provided to us over the last few weeks!
Hugs to each of you.
Mike and Dani
From: Baldwin, Danielle
Sent: Wednesday, March 25, 2009 10:56 AM
Subject: Gavin Update
Hello Everyone,
We wanted to send everyone an update on our little Gavin.
First, we want to thank you all for the prayers and comfort that you have all showered upon us. It has truly helped Mike and I get through the past 10 days of uncertainty.
We had an ultrasound yesterday afternoon; and afterwards, we met with the doctor about all the test results...and where we go from here. The ultrasound was positive news – Gavin has a good amount of amniotic fluid and was moving around like a good little boy – we even got to see him yawn! The test results from the amniocentesis were all normal or negative for infection and chromosome deficiencies. Our doctor said she was stumped and was not expecting these positive results. So what now? Well, unfortunately we still have a long road ahead of us. They did not measure Gavin’s growth as it was too soon to get an accurate reading. We go back in two weeks for another ultrasound. So once again we are in a ‘waiting’ period. If we can keep the amniotic fluid where it needs to be and he continues to grow and fight, then he's in the safe zone. It’s all about getting through every day and every week – we are only half way there.
We continue to need everyone’s prayers as we aren’t out of the woods by any means; and unfortunately, we may never be.
We will continue to give you all updates on Gavin as we continue through this journey.
Hugs to each of you
Mike and Dani
From: Baldwin, Danielle
Sent: Thursday, March 19, 2009 1:45 PM
Subject: Update
To our dearest friends and family
Mike and I wanted first and foremost thank you all for the prayers, cards, flowers, food that you have showered us with. We have truly felt the love and comfort from all of you these past few days. We are so thankful to each and every one of you.
As most of you know, our world came to a halt on Friday when we went in for our 18 week ultrasound. Our biggest concern was not finding out the sex of the baby - we didn’t care what we were having, we just wanted a healthy baby and a nice surprise at the end of all this. Like most nightmares, it all just started to unravel before our eyes. The only things I truly remember: the ultrasound tech questioning my weeks; the doctor telling us that something was wrong with the baby...that our baby was not going to survive. The next thing I know, I’m having an amniocentesis to help find out what is going on with the baby. Mike and I walked out of the doctor’s office Friday in complete shock not knowing which way was up. Now that some time has passed, we discovered our baby has IUGR – Intrauterine Growth Restriction. On Tuesday, we learned the first round of test results relating to chromosone deficiencies were normal. We took those results as a big positive. We still have a couple more tests to come back, but won’t learn those results until next week. We are currently in a "waiting" period...waiting for the complete amnio tests, and I guess to see if anything changes or develops with the baby; we're still in a very critical stage. We are scheduled for another ultrasound next week.
During the amniocentesis, I desperately wanted know the sex of our child...since the surprise was no longer going to happen. We learned that it was a boy; we named him Gavin.
Please continue to keep us in your prayers. We believe in the power of prayer and know (and appreciate) that GOD is ultimately in control of Gavin's well-being.
Thank you all again; we truly have the best friends and family and feel the love from all of you!
Mike and Dani
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