Monday, December 13, 2010
Graham and our entire family were in the loving hands of Riley's Hospital for Children and Ronald McDonald House, two places that would become "home" for the next 94 days except for a brief stint between Christmas and New Year's. Day in and day out, our entire worlds hung on whether or not this child pooped or not, when the green stuff coming out of his stomach tube would run clear so he could eat, or if a certain cry meant hunger or pain. We waited as doctors made decisions, we expanded our vocabulary to include words like tachyphnea and omphalocele, and learned how to put in a feeding tube and change a sterile central line dressing. Our days lit up when Graham would open his eyes and focus in on his Daddy, when he started to smile amid all the tubes, and we'll all remember "the sneeze". Our days were dark when I witnessed my baby not being able to breathe, saw doctors shaking their heads and nurses cry. I dreaded taking him to the 2nd floor and kissing him good-bye as they took him surgery. We survived because someone would come visit and bring homecooked food. We'd receive an encouraging message from someone we loved, or I'd get a phone call from a friend when I really needed to hear her voice.
Grandpa coined the name "G-Man" in his blogs and it has stuck. Today we have a smiley, animated, curious little boy on our hands. He fought the good fight, I am so proud of my Graham. I think he inspired us all. He will certainly have a story to tell one day.
I know day after day, you all read as our lives were turned upside down. You rejoiced with us on our good days and wept with us on the bad. You are all much much more than our blog followers. You were a main source of support for our family throughout the turmoil of Graham's ordeal and for that, we celebrate with you as we mark his 1st year.
Pics to come...
Thursday, November 25, 2010
Sunday, August 22, 2010
Loved the sand on my toes, but the Lake Michigan water was just too cold!
Hanging with Mom on a pontoon ride.
Had a blast with Daddy swimming in the pool.
And drum roll please.....
I'm sitting up like a pro!
He's been gabbing up a storm.
Graham has also gotten his two bottom teeth. Those are a little harder to capture on camera since we only catch glimpses with his big smiles. All in all, we are blessed with a very happy baby. It seems like he's having as much fun discovering all this new stuff as we are watching it. It just keeps getting better and better.
I often wonder at times if these moments are heightened because of what we witnessed Graham go through the first few months of his life. With each passing day, I feel our time at Riley becomes a distant memory as we make new ones. With that being said, there isn't a day that goes by that I don't look at my son and still have a little piece of my heart break for the babies and families robbed of getting to experience these firsts with their little angels. As much as I would like to forget some of the horrible things we saw Graham go through, I know it brings an appreciation for the miracle that our family was so fortunately granted.
There is much to report as well when it comes to Graham's medical issues. First off, he has been off his feeding tube for almost 4 weeks now. Good news is he never lost weight when we took that away. We are working with a nutritionist through the First Steps orgaization that Graham receives his therapies through. She has been so useful helping us supplement the calories Graham is not getting through the tube. It's been trying because our stubborn little G-Man refuses to take milk from a bottle. That can be common with nursing babies, but would've been so much easier transtioning off the tube. We didn't see a weight gain the first couple weeks, but we are now seeing one slowly but surely. We add calories to the solids that he eats with a product called Duocal and monitor his weight pretty closely. So...we are officially tube free.
A visit to see Dr. West last week is forcing us to start to look toward Graham's upcoming surgery now set for next summer. During this visit we also met with a plastic surgeon who will be involved in placing tissue expanders in G's stomach muscles surrounding the omphalocele (which has grown to the size of a softball). This will be quite a process, one in which I'm glad we have 7 months to mentally and emotionally prepare for. Starting two months before the "Big Surgery" they will place a port and the expanders in Graham. For 6-8 weeks, EVERY week, we will take Graham in to have more saline added to the expanders. It will cause him discomfort and a general anethetic will be used for each of these procedures. The reason we are doing all this is so when they put Graham's liver back into his abdomen, the muscles will be big enough to cover and attach together in front. It also eliminates them having to use any artificial material instead of his own muscle. He will have plenty of skin to cover it with the new skin he has formed covering the omphalocele right now.
Hope you've enjoyed a little glimpse into our wonderful world of Graham. This little guy turned our worlds upside down and still continues to do so by bringing so much joy into our lives.
Thursday, July 1, 2010
We went on an African Safari...
He slept through the giraffes,
Daddy showed him the monkeys,
and he had fun watching his friends on the carousel.
I'm sure there are many trips to the zoo in store for us as Graham gets older, but this was a special day because getting to take my son to the zoo was something I've dreamed about doing long before we even met him.
On a side note, Graham also had what will be his last swallow test Thursday morning. He passed with flying colors. As much as this is wonderful news, it doesn't change a whole lot with the feeding tube. Yes, the feeding tube is in because he was having difficulties swallowing, but Graham is also having some gaining weight issues. We are using the tube to supplement him with the extra calories he needs. He still won't take a bottle.
We have a much anticiptated appointment down in Indy with Dr. West on July 8th. Hopefully, we'll have a better idea of future plans for Graham's surgery when we see her.
Monday, June 7, 2010
Once the blockage was off the table and the doctor pronounced his bowel sounds good, we just had to wait for Graham to poop. (Haven't we been here before???) His stomach contents also finally began to run clear, so suctioning was stopped. We immediately broke out the old poop dance choreographed at Riley many months ago, and it worked ... with a little help from a glycerin chip. Katie was allowed to resume nursing this evening, and all is going well so far. If Graham's night is uneventful, he'll be discharged tomorrow morning.
Sunday, June 6, 2010
Friday morning, Bill and I rushed Graham to the ER when he started to throw up green stomach bile, his temperature dropped to 95.4 and he became very lathargic. Since Lutheran Children's Hospital is 5 minutes from our house and it was a seemingly urgent situation, we took him there. Graham's pediatrician also works out of that hospital. It's been a weekend of the roller coaster ride we all were really not ready to hop back on. They started an IV (only took 2 tries), gave G some nausea medicine and took some xrays to make sure he hadn't aspirated when throwing up. This xray showed mainly that Graham was extremely backed up and constipated. He hadn't pooped in a day, which with babies can be normal. But the throwing up was an obvious concern so Graham was admitted to the hospital for further observation and was assigned a consult with THE pediatric surgegeon of Fort Wayne, Dr. Smith. They started suction through his NG tube to relieve his stomach of the bile so he would stop throwing up. Later that day, Dr. Smith ordered an upper GI test, which pretty much came back inconclusive because Graham couldn't keep down the dye they gave him for the test. Graham slept pretty well Friday night, but started to become pretty agitated Saturday. He got some Tylenol and received an enema which worked a little bit, but not much. As the day wore on, we could tell he was much more irritable and in obvious discomfort. Docs decided to do a CT scan yesterday evening in hopes to get a clearer picture of his abdomen. It's hard to read his xrays because of the omphalocele. He also got a couple doses of morphine which made him relax and get a good night sleep. Today, he woke up happy, even gave some smiles and sat up a little bit (pictured above). He has that sad sick look though that just breaks my heart. He hasn't been able to eat, but I've been doing non-nutritive which I think comforts Graham (and Mommy). We are waiting to talk to Dr. Smith about the results of the CT and go from there. If any further surgery is needed (Dr. Smith was speculating a possible obstructed bowel), we'll be heading back down to Graham's old stompin' ground in Indy. So, to be continued...
Wednesday, May 19, 2010
He also had a heart echo which we do not know the results of yet.
Well, as we learned so well just a few short months ago, it's not really the best idea to set sights so high. We are on Graham time, remember?
Graham has "fallen off the chart". He was in the 3rd percentile of height and weight because he was so sick for so long and now is even lower. He is the size of a three-month-old baby. This news was quite a slap in the face, as he was nursing every two hours and had even started solids.
His swallow test did not produce the results we had hoped for as well. There is still penetration of liquid getting past the vocal cords toward his airway. He is not aspirating, but close. We have had issues giving Graham a bottle, he usually just refuses it which can be common with nursing babies, but is vital for supplemention if he was going to get off the feeding tube. We had to come up with a plan to get more calories into Graham and to get him gaining weight. So, it was back on the NG tube for Graham. Good news is, I will still nurse during the day. We will give him feeds of high calorie fortified breastmilk through the feeding tube during the night while he is asleep.
It was hard putting the tube back down his poor little nose last night after he had the week off.
As much as this seems like a step back, I have to keep reminding myself of how far he has come. As much as I hate the feeding tube, it will help make him stronger. And at the end of the day, it is my own personal issues with wanting him off the tube that I need to deal with. I look at him through my teary eyes and he is just smiling back at me like "Relax, Mom...I'm cool with this". He handles things so much better than his Mommy.
So that's where we are. We've had his First Steps Occupational Therapist come see us twice now and she shows me exercises and stretches to do with him everyday. We'll be going in for weekly weight checks to make sure he is gaining again and then hopefully we'll be back on track.
Wednesday, May 5, 2010
G also saw pulminology and he is off oxygen during the day. One less tube...kinda. He is still on oxygen at night, but I am totally fine with that, it can only help.
Today, we went to the pediatrician and Graham weighed in at a whopping 12 lbs. 8oz. Everyone couldn't be more pleased.
Our next goal is to come up with a plan to be able to get off the feeding tube. We will be starting therapy right here in our home with an organization called First Steps. They are sending an occupational therapist to help with Graham's muscle tone to help with things like pushing himself off the floor while on tummy time (made much more difficult since he doesn't get true tummy time). He'll also eventually need help with sitting up, crawling, etc. since his core muscles are not where a normal baby's are. We will also be working with a speech therapist who specializes in feedings and swallowing. Graham has decided he wants nothing to do with a bottle, which can be normal with nursing babies, but it is vital to getting him off the feeding tube so we can supplement feeds and make sure he continues to gain weight.
Developmentally, Graham is just about right on track. Every week, he is doing new things. He really focuses in on faces and toys. He is reaching out and grabbing objects and attempting to put them in his mouth. I think since he has grown and can see so much more of the world around him, he is that much happier. And as we've all discovered...when Graham's happy, we're happy.
Tuesday, April 20, 2010
Sunday was the day to change all of Graham's tubes. It's so strange to see him with all of them off his face. He seemed to really enjoy not having them all stuck on him so we went without for a short while.
He has a new favorite pasttime of sucking his thumb and of course we all watch on oohing and ahhing like we're watching a fireworks spectacle. It's just too darn cute!
We continue to let this little being take over our lives. He wakes up with that smile and it's still planted on his face when he goes to bed.
A couple of days after Graham's last swallow test, I decided to see if he would breastfeed. Sure enough, he did! I can't believe after 3 months of not doing it, he remembered. He's been improving by nursing more frequently and for longer periods of time. We still have the majority of his food coming from the feeding tube, but we're starting to transition away from it.
The next step toward getting our baby tube-free will be on April 27th when we go back to Riley. The pulminologist will hopefully take Graham off the small amount of oxygen he's receiving.
Our little guy needs to continue to gain weight and I think we'll have a pretty healthy baby on our hands.
Wednesday, April 7, 2010
We were all anxiously awaiting the test today since Graham has grown a bit and is much stronger than he was.
Well, the G-Man has proven that he is now a good test taker! No more aspirating! He is still having some difficulty swallowing, the milk pools and sometimes will start to penetrate the vocal cords (beginnings of aspiration) but will correct itself and go down the right tube.
The part Graham did the best on was the baby food. Since it's a little thicker he did better with it.
We have gotten the go ahead to start Graham on a bottle. 10ml twice a day. Now 10ml isn't that much, but it's a start and will get G aquainted with eating a new way. The rest of his feeding will be through his feeding tube. We were also given the go ahead to give him some nibbles of babyfood throughout the day as well.
We'll slowly increase the amount he's getting through the bottle based on what Graham tolerates. Another swallow test in 6 weeks!
With Graham turning 4 months tomorrow, Bill and I couldn't help but reminise on those months on the way to Riley today. We just shake our heads at what our little guy had to go through and it still brings tears to our eyes. One thing we both agree on is that we couldn't have gotten through what we did without the love and support of our friends and families. We survived because of you and I know we say it all the time, but Thank You.
Monday, April 5, 2010
This weekend was a lot of fun! We had Bill's side of the family here for Easter. Graham ate up all the attention and captured everyone's hearts with his smiles. It was nice to see Grandpa up from Flordia. AND Uncle Andy and Aunt Kirsten from Cinncinati will be giving Graham a cousin in October!!!
Monday, March 29, 2010
I was able to sneak a picture of a precious moment with Bill and Graham. This is what it's all about here folks.
We're enjoying bathtime more and more each bath. At first, Graham was a little unsure about the water, but now he seems to like the warm water and doesn't cry. Before too long, he'll be splashing around.
Friday marked two weeks home. We're finding somewhat of a routine, as much as you can with a new baby. Grandma and Grandpa have been a huge help. They pop over and give us little breaks and also watch Graham a couple nights a week since I've gone back to work part-time.
Big news, looks like we'll be seeing Grandma and Grandpa Ryder permanantly in Fort Wayne. They bought a house last week just a few miles down the road. We are so excited and I know they are thrilled to be so close to their G-Man. They don't want to miss a thing and now they won't.
Granny (Bill's mom) has had fun catching up with Graham. He always gets a big grin when she tells him about the pony she is going to get him when he gets older. Grandpa Law will be back from Flordia this weekend for Easter to see Graham for the first time since Christmas along with Uncle Andy and Aunt Kirsten.
Graham has continued to grow. We've been going to the pediatrician for weekly weight checks and G was 10 lbs. 5 oz. last Wednesday. We'll see how much he's gained this week tomorrow.
Our next Riley visit this Thursday, April 1st. We see Dr. West and I'm really hoping she takes out the central line. Updates on the appointment will be posted that night.
Wednesday, March 17, 2010
A new season has begun and this also rings true for our family. We couldn't be more thrilled to be back to our lives at home. Graham is adjusting beautifully, a very content baby just taking in all the new sights and sounds around him.
Emma and Riley each welcomed him with a little sniff. They aren't acting at all jealous and like to be wherever he is.
The weather this week couldn't be more gorgegous. Great timing for a very anxious mommy needing to get back to her daily walks...now enhanced with a stroller. Graham loved his first walk and then a second one later the same day.
At the pediatrician today, Graham has gone from 9.9lbs Friday leaving the hospital to 9.15lbs. We should be hitting that 10lb. mark soon, we are increasing his feeding volume twice a week.
Graham's care at home is going well. We have a nurse come in twice a week to help with dressing changes of his central line and whatever else we need. He is on oxygen and the NG feeding tube, but we don't let all that slow us down. He still loves being held, but he also loves his bouncy seat and crib.
He is sleeping through the night...12 hours! It's easy to do that when you have your food shot down a tube every 4 hours throughout the night. Swallow test on the 7th...then hopefully it'll come from Mommy or a bottle.
So...so far so good. It was a very smooth transition and we're just having fun being able to do all the things we fantasized about doing for the last 3 months.
Thanks for following our journey thus far. The blog doesn't end here...we're just getting started!!!
Monday, March 15, 2010
Thursday, March 11, 2010
It doesn't seem fair ... Mom and Dad are doing all the studying and training but poor Graham has to take the tests. The good news is that all of this testing and training is part of the preparation process for going HOME ... tomorrow!
Mom and Dad have been practicing putting in Graham's nasogastic tube that he will need for the next few weeks to get his fortified breast milk. The NG tube must be removed, cleaned, and replaced every week. They have also been practicing (on a dummy) changing the dressing on his central line that must be done once a week under sterile conditions. They will actually do the dressing change on Graham tomorrow before the trip home.
Graham's sleep test and car seat test indicated that his breathing difficulties will necessitate assistance because of something called mild obstructive apnea (different from sleep apnea). As a result, Mr. G will be on oxygen with a small flow of air (one-quarter liter/minute), and will be on an apnea alarm system during the night and when he is in his car seat. Respiration Therapy will educate us on using these devices this afternoon. An infant CPR class was taken earlier this week.
Changing the dressing on the G-Man's omphalocele was drastically simplified yesterday. The skin around it has almost completely healed, so now all that is required is a fairly large band-aid type covering.
G's care will be challenging, but we are confident and looking forward to being at home with our precious baby boy.
Saturday, March 6, 2010
Graham may also go home with a breathing assist. His fast breathing rate is still a problem and may necessitate oxygen through a cannula.
These interrelated breathing and swallowing problems are a reminder of how much our Graham has gone through. His lungs were seriously damaged and they simply need more time to recover. He was also on a ventilator for five weeks, which meant those muscles involved in swallowing did not have a chance to develop properly. Luckily, all should heal in time.
Happy Birthday, Katie!
Wednesday, March 3, 2010
Big things are happening here at Riley for Mr. Graham. First off, he has hit 9 pounds! He is tolerating his feeds (65ml/4hrs) very well. He is also latching on during non-nutritive breastfeeding! He'll have a swallow test hopefully this week to see if he remembers how to swallow. We would like to avoid going home on a feeding tube.
Yesterday, we made the move to the Infant Unit. It was an emotional move. Saying good-bye to all the nurses who got Graham and our family through so much for so long was a tearful experience. We're just down the hall from the NICU, but it's much different as far as restrictions. We were lucky to get a private room, and as you can see by the picture of Grandma and Graham, it's pretty cozy. I can spend the night, which is wonderful, but more wakeful, not because Graham is waking up, but because of nurses and doctors coming in at all hours. They take such good care of all of us here, but we're definitely ready to be home with no midnight visitors.
Hopefully, next week we'll have an idea of when we'll be heading back to Eagle Creek Drive. Perhaps just in time for some spring weather to be able to take Graham on much anticipated walks.
Sunday, February 28, 2010
Graham is now taking 55ml of breast milk every four hours through his NG tube. The goal is 80ml, a few steps away. The nutrition (TPN) he is receiving through his central line has been weaned down to 8ml/hr from the original 20. When he gets to zero the central line can be removed, which will lower the risk of infection.
The breathing assist that Mr. G is receiving is almost minimal...1 liter of air per minute. The plan is to go to one-half and then to zero this week. Almost there.
The new skin covering the omphalocele is nearly complete. The area still healing is about the size of a half dollar. The docs are guessing it should be completely healed in about a week.
The perfect scenario would find Graham with a completely healed omphalcele, no breathing assists, and getting all his nutrition through breast milk. All seem within reach now. In the meantime, he is a happy active baby who charms everyone in sight with his smiles and cooing. Stay tuned for a couple new pictures soon.
Tuesday, February 23, 2010
Continued progress perfectly describes Graham's past few days. His breast milk intake through the NG tube has moved (in 5ml increments) up to 45ml and his feeding schedule has changed from every six hours to every four hours. At the same time the amount of nutrition that he is getting through his central line is being reduced. The G-Man has come a long way. The goal is 60ml every three hours and getting off the central line completely. Then we can start thinking about breast feeding.
Graham is also making progress with his respiration. He is now down to 2 liters on the vapothrem through his cannula. The next step is removing the vapotherm completely. His respiration rate is still a bit high, but improving. We are anxious to see the day when he needs no breathing assist.
These pictures show a happy, smiling, and growing baby boy of eight and one-half pounds, who is, quite simply, lighting up our lives.
Thursday, February 18, 2010
Graham hit 8 lbs. on the scale this morning! This is great for so many reasons. He continues to grow a little everyday which means although his body is healing his lungs, omphalocele and gut, there's still some energy left over to put some meat on his bones.
His breathing continues to be on the high side, but we're all realizing this might just be how Graham is going to be.
Feeding volume went up today to 30ml every 6 hrs and I'm continuing the non-nutritive breastfeeding so G can relearn how to breastfeed.
We continue to be amazed at how the omphalocele is healing. Dr. West thinks in a week the new skin will completely cover it and we won't be dealing with an open wound any longer! I am still doing the dressing changes everyday. Check the post from January 7th (Still Healing) to compare today's picture of the omphalocele. Go Graham!
Graham is such a happy baby. He smiles all the time and we're on pins and needles waiting for that first little giggle to burst out. He is very content most of the time just taking in all the sights around him and he loves being held. He is sleeping great (mostly through the night) even amidst all the NICU noisiness. How are we going to recreate that when we get home?!?
Sunday, February 14, 2010
Graham is back to 4 liters/minute of air (from 3) through his cannula. This flow of air is called "vapotherm" because the air is warmed and moisturized. G's respiration rate dictates the liters he receives. His relatively high respiration rate necessities more liters, hence part of the strategy with with six hour feedings.
Friday, February 12, 2010
The G-Man still has his cannula, receiving no added oxygen, but 3 liters/minute of air. We hope he can begin to be weaned from this assist soon.
New skin continues to enclose G's omphalocele. The wound therapists are excited about his progress.
Graham continues to be his happy self, lighting up everyone who comes in contact with him.
Tuesday, February 9, 2010
The plan now is to begin feeding Graham 5ml of breast milk via a tube every six hours. He was given his first feeding at five o'clock this evening and he promptly threw it back up 30 minutes later. We are, of course, hoping Graham's system will gradually adjust and he can start getting the benefits of his mother's milk.
Dr. West decided today to replace the tube that went into G's stomach through his mouth with a much smaller tube through his nose. He is visibly more comfortable.
Graham is not on any type of medication, save for one to help digestion. He is pain free, symptom free, and taking no drugs. It is obvious why he is such a happy boy.
Dr. West shared this thought with me a few weeks ago...she said that pediatric care could be summed up with the 3P's...pee, poop, and puke. We have worked our way through number one and number two (sorry!), now the focus is no more puke!
Monday, February 8, 2010
Sunday, February 7, 2010
Thursday, February 4, 2010
Now the focus is to get food into Graham's stomach. Indications are that his digestive system will soon be ready for that magic breast milk.
Graham seems to be back to where he was before his last surgery, with the bonus of no kidney disease and no hypertension.
Hope to return with more good news later.
Tuesday, February 2, 2010
We hope the G-Man is extubated sometime tomorrow, so he can get back on track. Dr. West is going to take a more aggressive approach to getting his gut ready for breast milk. Huge step forward when it happens.
Graham's heart function is still not up to base line. He has a thickening in the wall of his left ventricle, which was perhaps caused by his hypertension. And now that his blood pressure is finally back to normal levels (hooray!) this heart problem should rectify itself.
Oh yeah...then there is the omphalocele. Remember that? It is healing wonderfully!
This is a surgery, so the ventilator goes back in. This will all happen at 3:30pm today. He was doing so great the past couple days, it seems like for every step forward, we take two steps back. Let's all hope this is just a minor setback and he can jump back on that road to recovery.
Sunday, January 31, 2010
We will keep you updated as we learn more.
Friday, January 29, 2010
The surgery yesterday to put in the tunnel line went well. Graham is getting his nutrition and meds through this line in the same manner he did with the central line.
G's blood pressure is still a bit high and the culprit is his weakened kidneys. As mentioned in the previous blog, this problem should solve itself as his kidneys naturally heal.
The next hurdle is to get real food into Graham's system. He is now off the pain medication necessitated by the ventilator. The morphine may have slowed the digestive process, so we are hoping the next few days will show positive signs and he can begin taking breast milk through a stomach tube.
Hour by hour. Day by day. We are cautiously letting ourselves think Graham is finally getting back his health.
Thursday, January 28, 2010
Wednesday, January 27, 2010
Graham gave us pause yesterday when he developed a fever of 100.4 degrees. This set off a flurry of activity that included blood tests, cultures, and x-rays. The immediate worry was another infection. This development came as we were starting the countdown for the ever-so-important removal of his ventilator. The fever was coupled with an unusually high heart rate, further indicating an infection.
We do not have the blood cultures back yet, but G is back on track today...normal temperature and heart rate. We hope this was just a hiccup in his road back to health.
Graham has been experiencing high blood pressure and has not been responding to normal blood pressure medication. We found out today that he has some kidney damage that is causing the high BP. The docs feel that as his kidneys heal the BP problem should solve itself. Time.
Tomorrow will be a big day for the G-Man. A less-invasive tunnel line will be put in, which will replace his central line that was removed today. This surgical procedure will take place around 1:00P tomorrow. The tunnel line is less prone to infection and will serve essentially the same purpose as his central line. The big bonus, we hope, is that if the procedure goes well, his ventilator can be removed afterwards. The respiratory therapy team says his numbers indicate he is ready.
The attempt to introduce breast milk through his stomach tube was a failure yesterday. Although small amounts were tried (5 ml every two hours), he vomited them back up. It was disappointing ... a reminder we are always on "Graham time". But Dr. West said some part of his digestive system is just not quite ready and they will simply try again in a couple days.
The rash is still a puzzle, thought somewhat less pronounced today. The use of steroids has been put on hold for now, for a number of reasons.
After making the flight from Turkey, Uncle Ward was able to see Graham for the first time late last night. The scene of Katie and Ward looking at and touching Graham warmed Grandma and Grandpa Ryder's hearts.
Monday, January 25, 2010
Today was another day of progress for our Graham, who can now open his eyes with relative ease. His weight is down to 8 pounds, and he continues to pee ample amounts. Now that he is close to his normal weight, the docs are planning to lower his diuretic dosages. And if G's respiratory numbers continue to improve, they also hope to remove his ventilator. The ventilator is causing him some discomfort and for other medical reasons the sooner it is removed the better.
Tomorrow morning Graham is taking a trip to the first floor for a "MAG 3" test. It is a scan that will evaluate his kidney function, and is being performed to help determine why his blood pressure remains high.
We are also anxious for Graham to begin getting breast milk through a feeding tube and hope to do so in the next few days. We keep setting goals, but we've learned it is the G-Man who decides when he is ready.
Sunday, January 24, 2010
Mom was able to hold him again today. It is quite a process given all his connections, which include his ventilation tube, and several lines leading into the central line. We hope that he can begin to take breast milk through a feeding tube to the stomach tomorrow.
Graham is still relying on a ventilator and his need for oxygen still hovers around 30%. His is beginning to "breath over" the ventilator, which is a positive.
Overall, we are seeing a more alert and active baby, who needs pain medication less often. To our great relief, Graham was taken off all antibiotics and anti fungals yesterday. We are looking forward to when the ventilator is removed and he can begin nursing again.
Uncle Ward is flying in from Istanbul and will be here late Tuesday night. His arrival will be a boost for all of us.
Good days! What a difference a week makes.
Friday, January 22, 2010
Bill and Katie
After marking time for three days, Graham has begun to show some positive signs. Quite simply, he is peeing! And I mean peeing! The renal team and surgical team agreed on a new strategy which was implemented last night, and it has worked wonders. The hope is that his urine output will continue to increase and that the edema will soon begin to abate, which should result in improvements in his heart and respiratory functions. The swelling has impacted Graham in so many ways.
Graham had the two chest tubes removed today, which meant Katie was allowed to hold him. She is one happy mommy. The proof is in the picture.
Graham is still on full ventilation, but his supplemental oxygen is now down to 27% and he is off the nitric oxide completely. He is doing fine with these changes as evidenced by his pulse oxygen level at or near 100%.
The G-Man is still not ready for breast milk. His stomach fluids are still green, rather than the clear liquid that will indicate his digestive system is ready for his mother's milk. He is continuing to receive his nutrition through his central line.
A rash continues to make appearances. It literally comes and goes and manifests itself on different places on his body. Dermatology doesn't have an answer, but preliminary results from the biopsy taken three days ago indicate a possibility of vasculitis (sp?). But Dr. West thinks it is just another symptom rather than a cause.
We have learned to keep an equilibrium through this whole drama, but positives are always welcome. We celebrate the small improvements, like we saw today, that will ultimately bring us back our healthy Graham. We are all ready to step off this roller-coaster ride of emotions. Thank you all for following us through this horrendous week. Your words of encouragement and prayers simply make everything easier.
Thursday, January 21, 2010
Tuesday, January 19, 2010
Graham is now fully dependent on the ventilator. Before, Graham was assisting the ventilator, doing much of his breathing on his own. Now, he is fully dependent on the ventilator. But his pulse ox level is 100%, which is a positive.
Before, Graham was actually ingesting breast milk through a tube to his stomach, and he was pooping. Now, his digestive system is no longer functioning at that level. He is back to getting his custom-made nutrition (TPN) through his central line.
More worrisome, new symptoms that occurred during his crisis have not gone away. Although improving from the dangerous low of 30%, his heart function is still not back to normal, as he is now battling blood pressure and heart rate problems. He continues to need fluid removed from his lungs, though thankfully there is no longer blood in this fluid.
A new and disturbing development in the form of a rash manifested itself yesterday. After the long fight to get rid of his previous rash, this is disappointing news. The big worry is staph. The Dermatology team will do a biopsy today to try to get some answers.
Some positives ... Over the last 24 hours, the docs have started to wean Graham off the nitric oxide, which he seems to be tolerating well. He has also been taken off dopamine, which was used to improve his kidney function. This has resulted in slower urinary output, but it is still at acceptable levels.
Graham has been knocked back a few steps, but if his brief history of comebacks tells us anything, he will soon begin to charge forward. As so many of you have said and thought, he is one tough little man.
Sunday, January 17, 2010
Will give you all the details of the ordeal soon. Still not out of the woods by any means, so keep those good thoughts coming.
I'm checking in after a few hours delay from posting the above paragraph to give some of the promised details.
We watched Graham's condition deteriorate throughout all of yesterday into this morning. It seemed whatever the docs tried to do to stop the respiratory and later heart failure, nothing worked. We soon ran out of options and the situation became acute. Graham's dependence on the ventilator was total. Unfortunately, the ventilator, even supplemented with 100% oxygen, failed to maintain normal oxygen levels. A high frequency oscillation ventilator (normally used with premature babies and newborns) was tried and did not work. For various reasons, this ventilation process necessitated heavy sedation. He then went back to his regular ventilator, but had to be bagged with ever increasing frequency. Even with the bagging, Graham's oxygen levels could not be maintained at normal levels. Comparing X-rays taken in the morning to ones taken in the evening showed a marked deterioration of his lungs. Blood started to appear in the fluid that was taken from his lungs. More invasive measures had to be attempted, the first of which was putting in chest tubes to relieve pressure on the lungs and hopefully allow Graham to breath easier. This surgery took place after midnight this morning. There was no appreciable effect. His oxygen levels were dangerously low and could not be raised. An electrocardiogram found that his heart function was about half of what it should be. It was the nadir of the day and a decision was made to go ahead with a procedure called ECMO (extra corporeal membrane oxygenation), which would connect Graham to a bypass machine that would take over his respiratory and heart functions. Given Graham's condition, the procedure was extremely high risk and would buy only a week or two for him to heal. It would be the final option. While Graham was being prepped for this surgery, the surgeons tried one last procedure. A real long shot, they introduced nitric oxide in to his ventilator. IT WORKED! And it has continued to work the past nine hours. His oxygen levels are normal; he is peeing copious (relative to the last two weeks) amounts; his blood gases are normal; and added oxygen has been cut back. We know his situation is still critical, but every hour he can hold his own and perhaps start to heal those wounded lungs is a decided plus. Even if he has to have the ECMO at a later date, he will go into it much stronger with a much improved chance of survival.
Katie and Bill are tired but strong. We have learned to keep an equilibrium. We are heartened by the events of the last few hours, but we also know the G-Man has miles to go and may hit more downticks. The love and concern from friends and family was the only thing keeping us sane last night. Please continue to keep us in your thoughts ... we truly can feel it, no matter what the distance. We might have to invent a new word, because "gratitude" just doesn't cover it!
Saturday, January 16, 2010
The docs are now focused on Graham's profound breathing problems. He is fully dependent on the respirator that is supplementing oxygen at 100%, a level that cannot be long maintained. Ultrasound shows edema surrounding his lungs, which directly affects their function. Unfortunately, the Catch 22 is that lung function is important to relieving the edema.
There are options open to us. Much depends on finding a cause of Graham's edema. So far, it is a mystery. Graham is not following the script...maybe a preview to what his personality will be like!
The lifting of the H1N1 restrictions have allowed Grandma and Grandpa to relieve Mom and Dad in the NICU.
Thank you again for your loving support.
We know you will keep special thoughts for Graham while we wait. The blog will be updated when we learn more or if there are any changes.
Friday, January 15, 2010
Wednesday, January 13, 2010
Today Graham surprised us all and opened his eye all on his own! No help from Dad this time. It was the best moment we've had in a week and a half, so we thought we'd share it with you. He was so alert today, moving around and getting some of his personality back.
He also started on breast milk this morning (through a tube). I think we'll start to see some of his strength come back over the next few days. Now if we could just get that swelling to go away. They say the edema is the last to go and it looks like we're following that trend.
Saturday will be two weeks that Graham has been back in the hospital and also two weeks he has been on antibiotics. They will reassess whether or not to continue antibiotics then, and we should have a better idea of how long our stay will be. The new goal is to be out by the time Uncle Ward comes back from Turkey at the end of January. If not, we've already devised a scheme on how to sneak him in to see his nephew.
Bill and I and Mom and Dad would also like to take this opportunity to thank everyone who has come to visit us here at Riley. Uncle Andy and Aunt Kirsten brought us an amazing homemade dinner, Grater's ice cream, and lots of other goodies. Auntie Jen and Heidi took me out for a girls lunch in downtown Indy. Steve, Jodi, Aaron and Lisa were great friends and made the trip down from Fort Wayne. Derek, Joe and Sallie are right here in Indy and have popped in to see us. Our Hoopeston family has sent wonderful representation with Mrs. Anvick, Mrs. Foster, Mrs. Nelson and daughter Julie, the Shaffers and today we saw the Roots. It's hard to put into words how it feels to see you come into our world of worry and help deflate that stress. It really helps us to sit back and laugh and talk about other things. We just wish you could have met Graham while you were here. The visits, along with the many cards, phone calls, comments on our blog, texts, facebook messages, all make us feel surrounded by support and love.
Monday, January 11, 2010
As you can see in the picture, Graham's rash is completely gone, but the swelling is still there. My little 7 pounder weighs more than 10 lbs now with all the fluid that has settled in his body.
The top priorities now are getting rid of the swelling and getting his platelet levels up where they should be.
Today, G had an ultrasound of his spleen to make sure it was not enlarged. It was not. They also took a head ultrasound (I saw his brain!) to make sure blood was not present. It wasn't. Whew! They are looking for potential reasons why his platelet levels are so low, and docs were able to rule out both of those possibilities.
The Surgery Team, Dermatology, and Infectious Disease are all duking it out right now on what they think is the source of Graham's infection. Surgery is still thinking viral, and ID and Derm are thinking a staph infection affecting the skin, hence the rash and extreme peeling of the skin we're seeing now. We're still in wait-and-see mode, since some of the test results can take up to 2 weeks before showing anything.
I apologize to all of Graham's adoring fans for not posting these last couple days. I will definitely try not to let that happen again ... don't want to incur the wrath of Graham's fan base. : ) But don't worry if we miss a day or two ... sometimes there is little change from one day to the next. Please consider no news to be good news.
Thank you all for your concern for our little boy. Believe me, I understand how he just grabs onto your heart.
Saturday, January 9, 2010
Thursday, January 7, 2010
Wednesday, January 6, 2010
Throughout yesterday, lab results were coming back looking better and better.
Tonight he'll start receiving nutrition through his central line which will help him build back some of his strength.
Also, he is peeing! It hasn't helped with the swelling too much at this point, but we are happy it's finally happening.
He is still on the breathing machine, but they are starting to ween him because he is not needing as much help taking breaths.
They are still doing two dressing changes a day and keeping a close eye on how the omphalocele is healing. To our untrained eye, it looks pretty nasty, but the doctors say it is healing well.
No report back on the bacteria or viral cultures taken, so Graham still has us and his doctors a little puzzled as to what exactly he caught. We're hoping with time we'll know, but have been informed that sometimes it remains a mystery. As long as he gets better, that is what matters right now.
Time is what is needed now for our little guy to start to recover. We feel the worst is over, but we've been warned there could be some down ticks still in the future. It's such a relief though to start getting more and more good news.
You would all just be amazed at how much of a little fighter Graham is. Everyday, I just look at him and can't believe what he's been through and how he must be feeling, yet he's still kickin'.
On our end, we are anxiously waiting for those sweet little eyes to open up and look at us the way they used to. I also haven't held my baby since Saturday, so I'm itching to get him in my arms again.
Tuesday, January 5, 2010
Yesterday, Graham gave us a scare when he began to struggle to breath, so it was decided that the CPAP should be replaced by a ventilator. Since then, his ability to breath has improved immensely. This, combined with a little morphine and another blood transfusion, made him considerably more comfortable and less stressed, which will better enable him to fight the infection battle. Seeing him more relaxed has helped his anxious parents to also breath a little easier.
Another positive sign is that Graham's urine output has increased ... not drastically, but every little drop is golden, literally and figuratively. Dr. West said blood tests indicate that his kidney function has improved. Also, his swelling seems to have gone down a bit.
Today Graham will be given a echo cardiogram to determine if his heart function is normal. Specifically, Dr. West is interested in his ventricular efficiency. He is doing well in this department, but she wants to make sure all is okay.
Graham continues to get antibiotics. One has been changed to be more kidney-friendly and another was added to prevent a staph infection. There is still no word from the cultures on what, specifically, is the cause or causes of his infection, so they are covering all bases.
Even given these positives, we remain keenly aware that Graham is still at high risk and his situation is dangerous and unpredictable. But these hopeful events boost our spirits.
Your warm and supportive thoughts continue to carry us through yet another day.