tag:blogger.com,1999:blog-90258863850811419712024-03-12T23:15:03.547-07:00Graham Ryder LawBill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-9025886385081141971.post-81469825968353832952011-09-08T08:06:00.000-07:002011-09-08T13:42:24.895-07:00The Liver is In In In!!!After a short postponement from September 2, Graham's surgery on September 6 to repair his omphalocele was a resounding success, well beyond our greatest expectations. Dr. West was able to place his liver ENTIRELY into the abdominal cavity. She was also able to close the abdominal wall (actually his oblique muscles) to within in a scant two inches, an area that required an artificial mesh (alloderm) to connect the gap.<br /><br />The regimen of tissue expansion Graham endured over the last eight weeks paid off. There was easily enough skin to cover the area. The bonus: with everything neatly tucked inside and a relatively flat tummy, the plastic surgeon (Dr. Havlik) was able to fashion a bellybutton for Graham. At some point in the future, the alloderm will be removed and his own muscles joined to form a natural closure. <br /><br />The surgery lasted a grueling six hours, so it is no surprise that Graham's recovery has been rough. He was fitful and unable to sleep the night of surgery and the following day. But finally, the right combination of drugs was found to control pain and sedate him, but not repress respiration.<br /><br />Graham is now resting easier and sleeping more comfortably. We expect him to leave the Pediatric Intensive Care Unit within the next twenty-four hours and transfer to the surgerical floor of the hospital. Needless to say, Mom and Dad are a bit sleep-deprived, but relieved that Graham is beginning to emerge from the fog of drugs. We are all euphoric over the success of the surgery and looking forward to seeing the old Mr. Personality with his new slim look.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com2tag:blogger.com,1999:blog-9025886385081141971.post-66234023910637855002011-08-24T10:48:00.000-07:002011-08-24T18:05:59.846-07:00WednesdaysToday, Graham had his 7th and final skin/tissue expansion. We did it!!! It feels like yesterday we were walking out of his first one not knowing how we would get through the next six. Well, there is one reason and one reason only that we all made it through...Graham. The first few Wednesdays were kinda brutal. Especially the first couple days after the expansion, with pain, discomfort and probably an element of "What the heck are these things coming out of my sides?!?" Being an outpatient procedure, we would find ourselves at home with a very cranky, sleepy baby. So Wednesday afternoons in July were spent taking turns holding Graham while he slept for the remainder of the day. He would start to perk up and start eating again the next day and we got our silly, smiley little boy back. Here's Nana and Papa doing their part (Dad's sleeping on the job, but that's okay.)
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFvyCzKcxUsC06t64iV7J86RgtwtfCJqk7B8vwAYm4XRXyvPQeyNwj6MyImMv9AFPaDjNlIaNeD0gEceAZQ04gJ3OGSaV8LPBqcxu3Z5StjOeIpOzJN4EiTKLS25IiZtq0FwK0S1c6tjw/s1600/STA_1528.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFvyCzKcxUsC06t64iV7J86RgtwtfCJqk7B8vwAYm4XRXyvPQeyNwj6MyImMv9AFPaDjNlIaNeD0gEceAZQ04gJ3OGSaV8LPBqcxu3Z5StjOeIpOzJN4EiTKLS25IiZtq0FwK0S1c6tjw/s320/STA_1528.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5644485315399716498" /></a>
<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikn2HO_PYD4CZUmVs7e_rKfMdtdFPsCs56dgXpxjVbQeChYT6m7mfvZMiGlYdbSsPUH0nopfS_LBJvwhjEq1rINEOksQCOPpxA4M8qzRepghXxVQ04rBZjU6-92EtT329pnAKDKNnVvok/s1600/STA_1527.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikn2HO_PYD4CZUmVs7e_rKfMdtdFPsCs56dgXpxjVbQeChYT6m7mfvZMiGlYdbSsPUH0nopfS_LBJvwhjEq1rINEOksQCOPpxA4M8qzRepghXxVQ04rBZjU6-92EtT329pnAKDKNnVvok/s320/STA_1527.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5644485137533391586" /></a>
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<br />These last four weekly trips down to Riley though, we've seen such a change in the way Graham comes through each week. I think it helped that after we had a few under our belt, it wasn't our first Wednesday rodeo. Walking into Day Surgery on the 2nd floor, Graham gets a "Noooorm" greeting like on Cheers from all the nurses. Flirt.
<br /> On the emotional side, we come more prepared for the pre-surgery waits. Keeping a hungry 20-month-old occupied in a very small space for an hour and half can be a little exhausting, but with vidoes, toys and books, we got through. I was able to suit up and take Graham back to the operating room each week, which made the "good-bye" transition much easier and less dreaded. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIe7DqVQjV9UbZetdSPIwNkyfJxIHGz0YYvxtyHNvZ5H_iUmlRzct4IAXGRGfG6HeFcqxpuHbe0_5Jg4rxNswf0-1KBGNCcw_rsOwi6Evu1NUXj_jJe6vpmMlJCwHWlFFzIZnrV6gf-j8/s1600/IMAG0068.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIe7DqVQjV9UbZetdSPIwNkyfJxIHGz0YYvxtyHNvZ5H_iUmlRzct4IAXGRGfG6HeFcqxpuHbe0_5Jg4rxNswf0-1KBGNCcw_rsOwi6Evu1NUXj_jJe6vpmMlJCwHWlFFzIZnrV6gf-j8/s320/IMAG0068.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5644513489209163010" /></a>
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<br />And although seeing Graham in the Recovery Room immediately after surgery is probably the toughest part of each week, we figured out the best "cocktail" of pain management that worked best and helped Graham get through the first few hours post-op. I don't know why, but when we sing to Graham, that seems to bring him comfort as well. People who have heard Bill and I sing are scoffing right now, but today, my medley of Twinkle Twinkle/ABC's/Up on the Rooftop/Baby Beluga (don't ask me how a Christmas carol got in there) actually put him to sleep. It's so hard to see your baby confused and in pain and just have to wait it out and have him sleep it off. Daddy's big arms and warm chest help too.
<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMT4kBEMsM4qpXGIxVZ1a4EEiznBDSFk21_yz7ZTM1AKS59t269YMAkQq5VnxIBaWIEzA1rcdTLb3nNmwnghtNgEa4DugrZidTdLIAUFRSKj4niOPPAfTfkwaO4flAlDod1UT75Zx1j4/s1600/STA_1550.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMT4kBEMsM4qpXGIxVZ1a4EEiznBDSFk21_yz7ZTM1AKS59t269YMAkQq5VnxIBaWIEzA1rcdTLb3nNmwnghtNgEa4DugrZidTdLIAUFRSKj4niOPPAfTfkwaO4flAlDod1UT75Zx1j4/s320/STA_1550.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5644488683677885170" /></a>
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<br />Graham sleeps a lot of the way of the two-hour ride home and then most of the afternoon once we get here. The anesthesia and meds make him a little out of it. We've made him a little "nest" in our bed. Yes, we're doing the co-sleeping thing, because it's vital we all get rest and the crib just wasn't cuttin' it comfort-wise for the huge balloons protruding out of Graham's sides. We're all pretty exhausted Wednesdays, but Nana or my girlfriends makes sure we have dinner for Wednesday night.
<br />Graham's resilience astounds me. I can only describe it through something that we see him do every week. Thursday mornings, or even sometimes Wednesday nights, Graham feels well enough to start to play. He starts to stand up to walk, wobbles, and sits back down. He tries again...stands up, takes a step or two and falls. He then tries again...stands up, takes more wobbly steps, finds his new balance and is off chasing the dogs, one of his favorite activites. NOTHING keeps this kid down!
<br /> I wanted to give a little glimpse into the last two months of our lives, a chapter we can now close and focus on the next. But not before a few shout outs to the moral support we've received along the way. First of all, my work. They've been super understanding of all the time I've taken off. Lindsay, my morning counterpart of my job share, but more importantly my friend, has picked up the extra work. Granny, who makes sure the kennel runs smoothly so Bill doesn't have to worry about his business while tending to his family.
<br />The Carnahan's, who have let us invade their home every Tuesday night so we're only making a 20 min. drive to the hospital in the mornings, saving us from getting up at 430am. Graham loves Tuesday nights because he gets to play with his buddy, Drake (below,only 6 days younger and just had his drink stolen). And Mommy likes Tuesday nights becuase Heidi always has a glass of wine waiting along with an amazing meal.
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<br />And, of course, to our amazing support system of family and friends whose love for Graham makes me tear up just thinking about it. The outpouring of prayers and concern is something I will hold in my heart forever and gets us through the rough moments. Love love love!!!
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<br />So, here we are facing the "Big" surgery in a week and a half. His surgery is scheduled for September 2nd, a date that seemed so far off and is now becoming a reality. We will keep you informed with pictures and updates. Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com1tag:blogger.com,1999:blog-9025886385081141971.post-86828743272315099282011-07-09T11:40:00.000-07:002011-07-09T14:52:06.497-07:00Long Night, Better DayKatie is busy, so Grandpa is doing the blog and Grandma is making dinner for everyone.<br /><br /> Graham's night after surgery was rough. He experienced a great deal of discomfort and was wakeful throughout the night, no doubt due to the effects of the anesthesia and the implanted tissue expanders on either side of his omphalocele. Looking at the tissue expanders, you can understand why he has so much soreness. Almost the size of an adult hand (they are already partially filled), the areas are made obvious by extensive bruising. The G's night was marked by short fitful periods of sleep. He was given more potent pain killers at prescribed intervals that eventually proved successful. Needless to say, Mom and Dad greeted the morning sun very sleep-deprived. <br /> Graham began to rest easier in the morning, which allowed Grandma and Grandpa a chance to pinch-hit and allowed Bill and Katie to grab a few hours of sleep. As the day progressed, Graham began to take liquids, sit up and generally feel better. To everyone's relief, it was decided by the docs in the late afternoon that he could go home. <br /> Last night, in his own bed, was much better. Graham had long sessions of sleep, which means the pain medication is doing its job. Today he is up and about and getting back to his eating schedule. He is reluctant to crawl, however, because of the discomfort caused by the expanders. But he stands and walks with the aid of his push toys or Mom's hand. The best news is that we are seeing the old Graham personality beginning to break through...silly faces and all.<br /> This Wednesday, we make the trip back to Riley for the first of six weekly saline injections into the expanders, a procedure that will necessitate a mild anesthetic and result in tenderness for a day or two. <br /> Although there is still much ahead for the G-Man, We feel the first big step on this final phase of his recovery is behind him.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com1tag:blogger.com,1999:blog-9025886385081141971.post-34309086966496925822011-07-07T19:18:00.000-07:002011-07-07T20:06:32.653-07:00Brave Little BoyOkay. Long day. We had a wonderful pre-op experience. Graham did fine with just clear liquids for the morning and was his normal cheery self when we got here and as we were checking in. He had the surgery nurses wrapped around his little finger within 5 minutes...Flirt. They gave him something (by Mommy's request) to make him a little loopy for when the time came to say good-bye and send him back to surgery around 2pm. That part went great...no tears.<br />The surgery took longer than we had expected...about 3 hours. Graham did NOT come out of recovery well. He was very agitated and in obvious discomfort. Anyone who has had surgery knows awful it is waking up and those first few hours thereafter. Bill and I held him during that time, but laid him down when we got to our room thinking that might be a little more comfortable. After some more pain meds, some songs and getting him all snuggled in, Graham dozed off around 830p and has been asleep since. Poor little guy.<br />We caught a little look at the expanders...not what I expected. They are bigger than I had envisioned. They also look painful. During Graham's surgery, the surgeon put some pressure on the omphalocele to see how his body would react and the pressure on his lungs made his respirations go way up. This will be an issue come September. <br />Bill and I are staying in Graham's room tonight and going to get some sleep as soon as I tie up here. We're hoping for a pain free night. <br />Graham was such a brave boy today. I'm so proud of him. In a moment with my mom tonight, through my tears I exclaimed, "I can't believe we are doing this to him!" Her response, "We are doing this FOR him." I will try not to lose sight of that in the hard moments of seeing him in pain that I can't take away. <br />I'm hoping after sleeping off some of the yucky anethesia and staying on top of the discomfort, we'll get a Graham smile tomorrow. We'll see.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com0tag:blogger.com,1999:blog-9025886385081141971.post-74017004286066866672011-07-06T18:34:00.000-07:002011-07-06T20:38:37.378-07:00We're Baaaaaaack!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLPJrjiK2JtTOyv_2grYPjrPEqrX-2wBXl6wRlkCr4N9rbzyAZSjAyuRf9-D0FHfHNjwidbSM0_P_Kov9PuFtUqercXlZ4xYR-BwmrrVMQjSuKVnPgrU1psHDHFDc8iWIwqcPixQjzAE/s1600/IMG_1439.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLPJrjiK2JtTOyv_2grYPjrPEqrX-2wBXl6wRlkCr4N9rbzyAZSjAyuRf9-D0FHfHNjwidbSM0_P_Kov9PuFtUqercXlZ4xYR-BwmrrVMQjSuKVnPgrU1psHDHFDc8iWIwqcPixQjzAE/s320/IMG_1439.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5626444016690397218" /></a><br />Back where?!? You ask? Well, obviously I'm back in the blog world. I took a six month hiatus. Journaling Graham's journey the first year of his life was such a helpful way to inform everyone of how Graham was doing. The overwhelming response we received mixed with being able to get some thoughts out, turned out to be extremely therapeutic. So yes, I am back with you. As we continue onto what has been laid out for us, whether it be a medical update or a vent session, I know it falls on the concerned eyes and minds of the people that love Graham and our family the most. Thank you. <br /><br />Lately, medically, there hasn't too much to update on. The past 6 months have held many many joys for our family watching Graham grow and learn on a daily basis. Our lives stopped revolving around The Omphalocele. Graham started hitting milestones, having weekly playdates and has formed into such a sweet, silly little boy. I've started to heal from the events that took place his first few months. My obsessive worrying dwindled when we finally got to take his feeding tube out last September. I have been moving on with our life, it's been nice. The haunting memories still make random visits, but I know I'll carry those with me forever.<br />Looking back over the past six months especially, I must admit there has been a bit of denial on my part. I liked to think I was raising a normal, healthy baby and went about my days accordingly. I didn't want to face the fact that at some point the large bump on Graham's stomach would have to be repaired. That I'd be taking that walk down the 2nd floor hallway and experiencing the dreadful moment of when they take him away from me. Those worries flooding back.<br />The omphalocele stares us in the face everyday, but it's always just been a part of him. As his mother, I love every inch of him to pieces and see him as nothing but perfect. But physically, it's time. It has grown to the size of a softball and with Graham walking now and just being an all around little monkey, it's time to put that liver back in!!! So tomorrow we start the process of fixing Graham's omphalocele. <br />It will be 8-9 procedures/surgeries to repair "the bump". <br />First, tissue expanders (a port attached to a sophisticated balloon) will be placed on the sides of Graham's abdomen. One on each side underneath his skin. Starting next Wednesday, Dr. Havlik (plastic surgeon) will fill the balloons slightly with a saline resulting in stretching the skin. This outpatient procedure will take place every Wednesday through July and August with Graham under general anesthetic. The first 24 hours after this procedure are painful so Graham will be on pain meds. But after 48 hours, the discomfort will subside. September 2nd will be the "Big" surgery when they put everything that is out, back in...using the new stretched skin to cover.<br />So this is what we are embarking on. Yes, we are back at Riley. Yes, Graham is back in surgery. As much as those statements make me shiver, I have to realize that we are back with a strong, resilient child. THE G-MAN IS BACK!!!!!Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com1tag:blogger.com,1999:blog-9025886385081141971.post-16815735579386831442010-12-13T18:28:00.000-08:002010-12-14T20:10:52.605-08:00Graham Slam-1 Year Old!!!December 8th, 2009. One year ago, I met the most beautiful little boy. Graham Ryder Law. To be honest, it is difficult thinking back to the day he was born. I was so scared, and sometimes all I remember is being scared. I try not to let that overshadow some of the amazing moments I shared with my son that day. I got to hold him, which I had been told would not happen. But I also came to the harsh reality that day if anything were to happen to this baby, my life would be over. I know most new parents experience this, but oh it hit me like a ton of bricks. It was pure fear. I was terrified and I am still learning how to manage that fear. <br />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. <br />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.<br />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.<br />Pics to come...Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com1tag:blogger.com,1999:blog-9025886385081141971.post-27583160410211509692010-11-25T12:21:00.000-08:002010-12-06T19:05:18.278-08:00Graham is CrawlingGraham is on the move!<br /><OBJECT id=BLOG_video-d4affffc6ce601bf class=BLOG_video_class width=320 height=266 contentId="d4affffc6ce601bf"></OBJECT>Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com2tag:blogger.com,1999:blog-9025886385081141971.post-25593082518210615242010-08-22T07:51:00.000-07:002010-08-29T14:41:34.497-07:00The Summer of FirstsThe Law's have had a busy and HOT summer to share with you. It's about time, right?!? We have travelled a bit, seen some long distance family and hit some major milestones that Graham is going to show off for you. It has definitely been The Summer of Firsts. Everyday it seems Graham is doing something new. Of course, we thought the first time he stuck his finger in his ear was just as amazing as him sitting up. So at this point G-Man thinks he's pretty hot stuff. I've compiled some pictures and videos to try and chronicle some of what we've done. Enjoy. <br /><br /><A href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Srdw9ZkLiU7cKQP5wCrfnWbbnZag2nULsdqXZXg4OdE5FuY9PSqb8dY2cE7fime8nF736daJ_wzCQn2QcJilkhO4rUgm7tMUptaakTOlgoGrICOJiLqGwJTEIUxyH_zdO5qBqIF6nDY/s1600/IMG_0946.JPG"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5510918445853114258 border=0 alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Srdw9ZkLiU7cKQP5wCrfnWbbnZag2nULsdqXZXg4OdE5FuY9PSqb8dY2cE7fime8nF736daJ_wzCQn2QcJilkhO4rUgm7tMUptaakTOlgoGrICOJiLqGwJTEIUxyH_zdO5qBqIF6nDY/s320/IMG_0946.JPG"></A> <br />Loved the sand on my toes, but the Lake Michigan water was just too cold! <br /><br /><A href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxhjuHK9gADA7j05oNjXFt1Uhyphenhyphensjj-WVqCNX1nkJ7id22mSmHj5wFhdkxsUHLHPH-1GIpwpRfm5C8xFBZrYEUFcpnEp0JwwptGcC07A4Qm0VJ9CYwZ9_5iBTjXC83OPyczcHEBM6Jx-Jo/s1600/IMG_1005.JPG"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5510921551836343058 border=0 alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxhjuHK9gADA7j05oNjXFt1Uhyphenhyphensjj-WVqCNX1nkJ7id22mSmHj5wFhdkxsUHLHPH-1GIpwpRfm5C8xFBZrYEUFcpnEp0JwwptGcC07A4Qm0VJ9CYwZ9_5iBTjXC83OPyczcHEBM6Jx-Jo/s320/IMG_1005.JPG"></A> <br />Hanging with Mom on a pontoon ride. <br /><br /><A href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcoeoK032iFXk8hfAOD_ixmyO669j8113MPQ8bsZrN81mamGnOCv4F79GqGyXQRlGmVD152wQVBaz4K254gxxgV1Q2Z9Go2lcCfRU94-FWSCwR64D9SVNQt-UR_a3fafJgXvu-w1WSZbM/s1600/IMG_1039.JPG"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5510919504409172722 border=0 alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcoeoK032iFXk8hfAOD_ixmyO669j8113MPQ8bsZrN81mamGnOCv4F79GqGyXQRlGmVD152wQVBaz4K254gxxgV1Q2Z9Go2lcCfRU94-FWSCwR64D9SVNQt-UR_a3fafJgXvu-w1WSZbM/s320/IMG_1039.JPG"></A> <br />Had a blast with Daddy swimming in the pool. <br /><br />And drum roll please..... <br /><A href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdILL7RZnyUBFvNey3C4XHpUvazbMA_KnUMCyK3XaCkbAAVZMkutOebNtln9Lx3_ZTsTOyad0KHnzXpcCOdi2zwY_ZKVGisYpScnW6j_qqZVelRAe4kKpxo-6No3j9-GC_v5S7gJN5b84/s1600/IMG_1026.JPG"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5510919957979723362 border=0 alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdILL7RZnyUBFvNey3C4XHpUvazbMA_KnUMCyK3XaCkbAAVZMkutOebNtln9Lx3_ZTsTOyad0KHnzXpcCOdi2zwY_ZKVGisYpScnW6j_qqZVelRAe4kKpxo-6No3j9-GC_v5S7gJN5b84/s320/IMG_1026.JPG"></A> <br />I'm sitting up like a pro! <br />He's been gabbing up a storm.<br /><OBJECT id=BLOG_video-b82e761a2bf784a5 class=BLOG_video_class width=320 height=266 contentId="b82e761a2bf784a5"></OBJECT> <br />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.<br />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.<br /><br />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.<br /><br />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.<br /><br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com6tag:blogger.com,1999:blog-9025886385081141971.post-62636786837526666682010-07-01T11:16:00.000-07:002010-07-03T07:07:22.256-07:00Graham's First Trip to the ZooAs Graham is getting older and stronger, we are feeling more and more comfortable taking him out and about. So, since the weather couldn't be more perfect this week and my friend Michelle was visiting with her two little ones from out of town, I thought it was the perfect opportunity to see Fort Wayne's famous children's zoo. The day was a blast. Graham was nothing but happy the entire day. <br />We went on an African Safari...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf16hZqm0YXDLTtrivrPnz5y4WtupuDi-7T6QYwwWU446_lHF_FRxdIR9FnkRd5DBz4k92EYdPQFb_Jqf3cQtCx8YhFCiZwSQROTBBaEPhsxbz-l4M-8r7ksvixvzxhxuL1I2uZbzVWAs/s1600/IMG_0895.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf16hZqm0YXDLTtrivrPnz5y4WtupuDi-7T6QYwwWU446_lHF_FRxdIR9FnkRd5DBz4k92EYdPQFb_Jqf3cQtCx8YhFCiZwSQROTBBaEPhsxbz-l4M-8r7ksvixvzxhxuL1I2uZbzVWAs/s320/IMG_0895.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5489681110450331954" /></a><br />He slept through the giraffes, <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhchSzl35HwwlvMwsT4myJdY74BNZL9rYf6gFX2aW2OpaeXfPdhN-1V6-LiZ1e8YrvKfLX_nsKFyQMCbqXqWRLtaVq3MSHGnru_lNkySTPCxGW-M4R4Jsp_IdZJAa4OmlRRhuehkqLuTD0/s1600/100_7840.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhchSzl35HwwlvMwsT4myJdY74BNZL9rYf6gFX2aW2OpaeXfPdhN-1V6-LiZ1e8YrvKfLX_nsKFyQMCbqXqWRLtaVq3MSHGnru_lNkySTPCxGW-M4R4Jsp_IdZJAa4OmlRRhuehkqLuTD0/s320/100_7840.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5489678373722568914" /></a><br />Daddy showed him the monkeys,<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEF83j62Z0eLINOIoio5fppsEx-nk8pB07fIBz2rNvp9eeC0gX4G5dWKl7FohBGv71kNjAj6xSACQgbR4tiUfjFefb7j5ywJq4pAp7OUaCMS2x5uzqQnQ4406KANqCqB8FrvTq6XvX8Lg/s1600/IMG_0910.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEF83j62Z0eLINOIoio5fppsEx-nk8pB07fIBz2rNvp9eeC0gX4G5dWKl7FohBGv71kNjAj6xSACQgbR4tiUfjFefb7j5ywJq4pAp7OUaCMS2x5uzqQnQ4406KANqCqB8FrvTq6XvX8Lg/s320/IMG_0910.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5489678761307889394" /></a><br /> and he had fun watching his friends on the carousel. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2MGaYpJpGTTB4qJlZTWPCCjFa_dpx9Q3Nn4yvYOf-DsYOwDpcKNYPUAuSA6fjEOvdpBp8AcCEuRR-gFPmQqhBQMWNprSnm9XReyCxr7S_X_NQb1xEuqXHx6TZoRSQMWgofjeWJg1L9eI/s1600/IMG_0909.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2MGaYpJpGTTB4qJlZTWPCCjFa_dpx9Q3Nn4yvYOf-DsYOwDpcKNYPUAuSA6fjEOvdpBp8AcCEuRR-gFPmQqhBQMWNprSnm9XReyCxr7S_X_NQb1xEuqXHx6TZoRSQMWgofjeWJg1L9eI/s320/IMG_0909.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5489679030017987554" /></a><br />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. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC0SbI-rBu2C0DF7XPWIkN7LV7v-imAh9YgqHtvzR0lmMGSk694F0OpKouWsp-rM0k_3EHgc9a-BNchSEMLAkJbWaW7BbF8pGfkc5YfNDoIL1lfWe7CWloHaJIaa2rEUh_HxoAHa3btA4/s1600/100_7895.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC0SbI-rBu2C0DF7XPWIkN7LV7v-imAh9YgqHtvzR0lmMGSk694F0OpKouWsp-rM0k_3EHgc9a-BNchSEMLAkJbWaW7BbF8pGfkc5YfNDoIL1lfWe7CWloHaJIaa2rEUh_HxoAHa3btA4/s320/100_7895.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5489680209688730770" /></a><br />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.<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com3tag:blogger.com,1999:blog-9025886385081141971.post-75729842988049825072010-06-07T18:00:00.000-07:002010-06-07T19:02:59.101-07:00Good NewsWe were greeted with some good news Sunday morning. The results from the CAT scan taken the night before indicated that there was no bowel blockage causing Graham's problem. Because the G-Man's alimentary track is a bit different and the fact he has had a major abdominal surgery, a blockage was a worry. But the only things to show up were some indications of distention and swelling in his intestines, probably caused by a viral infection.<br /> 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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com4tag:blogger.com,1999:blog-9025886385081141971.post-13051444385110087892010-06-06T07:17:00.000-07:002010-06-06T07:50:15.601-07:00Sick in Fort Wayne<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirwBd9VrYnBAiGoednEkTQmexfPpTHZyw7Yo8S8R0rc1cbGzgCPfSPh9PDggburzwpiPy2Hh2MYquGPjcTPepmxhMC4OAzSJlsP7NEjwXhFwyr_QOxJhdcYw1x_kAuQTX5X2uCi0Lxixo/s1600/IMG_0840.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirwBd9VrYnBAiGoednEkTQmexfPpTHZyw7Yo8S8R0rc1cbGzgCPfSPh9PDggburzwpiPy2Hh2MYquGPjcTPepmxhMC4OAzSJlsP7NEjwXhFwyr_QOxJhdcYw1x_kAuQTX5X2uCi0Lxixo/s320/IMG_0840.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5479670492393443122" /></a><br />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...Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com3tag:blogger.com,1999:blog-9025886385081141971.post-56773856453823325202010-05-19T19:35:00.000-07:002010-05-19T20:18:52.802-07:00Grow G-Man Grow!Yesterday was a long day. We had three appointments at Riley starting with Developmental Pediatrics in the morning. I was really looking forward to this appointment, I knew we would learn a lot about where Graham is right now, where he needs to be and how to get him there. In all honesty, I thought this appointment would point out the obvious of things we already knew as far as his muscle tone development because of the omphalocele and so on. He also had another swallow test, which I thought would be a slam dunk since he had been exclusively nursing for over a week. (This was of my doing after conducting an experiment one day to see what he would do without the feeding tube for a day and he nursed like a champ. I had called Riley and talked to the swallow test nurse and she thought that sounded okay as long as he seemed happy and had plenty of wet diapers. Graham loved being tube free for that week and was his same old cheerful, smily self.)<br />He also had a heart echo which we do not know the results of yet.<br />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?<br />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. <br />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. <br />It was hard putting the tube back down his poor little nose last night after he had the week off. <br />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.<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com3tag:blogger.com,1999:blog-9025886385081141971.post-33975260298772315972010-05-05T12:31:00.000-07:002010-05-05T12:51:43.097-07:00Still moving in the right directionGraham had a couple appointments last week down at Riley. Dr. West was very happy with the progress he's made. We saw a wound care nurse about how his omphalocele has been healing (or not). I was a little concerned that we really hadn't seen too much of a change in his wound since we left the hospital in March! We are now doing a new sort of dressing on it that gives it a little more air and it's made all the difference. Right now there is just a nickel-sized scab on the front of his little hump, so I feel relieved about that.<br />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.<br />Today, we went to the pediatrician and Graham weighed in at a whopping 12 lbs. 8oz. Everyone couldn't be more pleased.<br />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.<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com3tag:blogger.com,1999:blog-9025886385081141971.post-42066344841431121052010-04-20T10:41:00.000-07:002010-04-20T11:32:58.625-07:00Thumb Sucker<OBJECT id=BLOG_video-92e076f17348b296 class=BLOG_video_class width=320 height=266 contentId="92e076f17348b296"></OBJECT><br /><br />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. <br />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!<br />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. <br />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.<br />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.<br />Our little guy needs to continue to gain weight and I think we'll have a pretty healthy baby on our hands.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com4tag:blogger.com,1999:blog-9025886385081141971.post-63297354350651611842010-04-07T17:58:00.000-07:002010-04-07T18:20:16.088-07:00Swallow TestAs you all know, Graham has been on a feeding tube since he started back on food again a month and half ago. He failed the swallow test a month ago when we were still in the hospital because he was aspirating the liquid when he drank.<br />We were all anxiously awaiting the test today since Graham has grown a bit and is much stronger than he was.<br />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.<br />The part Graham did the best on was the baby food. Since it's a little thicker he did better with it.<br />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.<br />We'll slowly increase the amount he's getting through the bottle based on what Graham tolerates. Another swallow test in 6 weeks!<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com6tag:blogger.com,1999:blog-9025886385081141971.post-14498658471327670452010-04-05T11:35:00.000-07:002010-04-05T16:54:02.799-07:00Central Line is Out and EasterLast Thursday, we went for our first check-up at Riley post discharge. It was a little strange going back, but we were in a different part of the building. My main goal for the check-up was to take out the central line that Dr. West was keeping in "just in case." Sure enough, she took it out, they were very pleased with Graham's weight gain and progress at home. We're back to Riley this Wednesday, April 7th, for the swallow test. It would be nice if we could continue this tradition of removing a tube per visit back. We'll see...<br /><br />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!!!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNFQnayDdgH5ivuYfDAc3xvnx7aKqaypOaOkrU9xJhS56Ao0wcaOKHagzvtZRB2ov9V81GBIYB4hN84OXwqRgvKb0crgNGY4YIgFN61n2rreLAJ3DGOaDYdDLlB9ylJgkJOR14mmdgSCc/s1600/IMG_0647.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNFQnayDdgH5ivuYfDAc3xvnx7aKqaypOaOkrU9xJhS56Ao0wcaOKHagzvtZRB2ov9V81GBIYB4hN84OXwqRgvKb0crgNGY4YIgFN61n2rreLAJ3DGOaDYdDLlB9ylJgkJOR14mmdgSCc/s320/IMG_0647.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5456727097751501922" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJhUUoqrgwGyPxv85qFvVNA0PRo3rMTK2Z2iOuArjW_DjgeGNdFhcMBL_IRwoqkBy3-exetAH6TpAtx5pK8qwojjQKl57iDwNkz9FYDDDTteyDlPIQbYiSt9rXZeZXPwu5oAV6uUP31iI/s1600/IMG_0655.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJhUUoqrgwGyPxv85qFvVNA0PRo3rMTK2Z2iOuArjW_DjgeGNdFhcMBL_IRwoqkBy3-exetAH6TpAtx5pK8qwojjQKl57iDwNkz9FYDDDTteyDlPIQbYiSt9rXZeZXPwu5oAV6uUP31iI/s320/IMG_0655.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5456726738047682306" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXbKsSEqfdjN8iYis_eeRkal16W1ht5BCLG9FGD_B-OTiQueLA9BRsDk-ZiEldu2u0InmopFfwSDaztFtyi7yNSnaN7hoHdtIo9dP_Sc959G90ueLyzVliCBlnmfg9L5h-Hd_BmkKI2zk/s1600/IMG_0652.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXbKsSEqfdjN8iYis_eeRkal16W1ht5BCLG9FGD_B-OTiQueLA9BRsDk-ZiEldu2u0InmopFfwSDaztFtyi7yNSnaN7hoHdtIo9dP_Sc959G90ueLyzVliCBlnmfg9L5h-Hd_BmkKI2zk/s320/IMG_0652.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5456726726189366178" /></a>Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com2tag:blogger.com,1999:blog-9025886385081141971.post-91663630860108775202010-03-29T09:08:00.000-07:002010-03-30T19:40:05.280-07:00Bathtime and Naptime<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdbz2PtpXTO02T3D4brmqFGECou6KYTpT5riql4ccU6dNXjyzHaD2Zg4hayNDDaRq-bIB_QMHS-ROwwYQ-WFcFFyj2UuQKoejiU43poxfWHVuF-N3v7Bmjadod7iuo1nnCUvAB42ricUk/s1600/IMG_0644.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdbz2PtpXTO02T3D4brmqFGECou6KYTpT5riql4ccU6dNXjyzHaD2Zg4hayNDDaRq-bIB_QMHS-ROwwYQ-WFcFFyj2UuQKoejiU43poxfWHVuF-N3v7Bmjadod7iuo1nnCUvAB42ricUk/s320/IMG_0644.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5454088577674224850" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3clYBpylPMkIR6R01hlSOS5LpPMZVsFRgYq7b-rt7QMLSFg5MkAEWMhY73_hX4o3lZ20UukaUMeQr_dkdfZwHvD9T3uy_9FKu_UHmjVgowL1ybjHu2bBycxNtlILJ4Cux439Igse3jp8/s1600/IMG_0641.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3clYBpylPMkIR6R01hlSOS5LpPMZVsFRgYq7b-rt7QMLSFg5MkAEWMhY73_hX4o3lZ20UukaUMeQr_dkdfZwHvD9T3uy_9FKu_UHmjVgowL1ybjHu2bBycxNtlILJ4Cux439Igse3jp8/s320/IMG_0641.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5454088572794392306" /></a><br />I was able to sneak a picture of a precious moment with Bill and Graham. This is what it's all about here folks.<br /><br />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.<br /><br /><br />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. <br />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.<br />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.<br />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.<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com2tag:blogger.com,1999:blog-9025886385081141971.post-78014206833588938682010-03-17T14:10:00.000-07:002010-03-17T14:43:34.945-07:00Fun at Home<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3t1PKYXcCqDA-ksO4QwUAeRcB5Xjkw39NNz-_P5hX3aWt4hbB_Sjxr1XQPZu01fc7cIvLjEk8wSDPpFFBbvg0RZYbi_sOfP_N6O4zaGlezbvkypk4bCGHq86quYAz9owA_QV0pnF1RXE/s1600-h/IMG_0629.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3t1PKYXcCqDA-ksO4QwUAeRcB5Xjkw39NNz-_P5hX3aWt4hbB_Sjxr1XQPZu01fc7cIvLjEk8wSDPpFFBbvg0RZYbi_sOfP_N6O4zaGlezbvkypk4bCGHq86quYAz9owA_QV0pnF1RXE/s320/IMG_0629.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5449721060712450194" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOzfAWanYWcTTLeGi9hxnn4p3LknIEr-G88eIVWokKichyphenhyphenIMCMcFBJmhertOuYNGSyHN818xBeGrwZp4AUb3uW-fLAdVSP-3mrITr7femuKG-YrLh9gmGAco7YB7z0ZVGHw9bvszakkF4/s1600-h/IMG_0626.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOzfAWanYWcTTLeGi9hxnn4p3LknIEr-G88eIVWokKichyphenhyphenIMCMcFBJmhertOuYNGSyHN818xBeGrwZp4AUb3uW-fLAdVSP-3mrITr7femuKG-YrLh9gmGAco7YB7z0ZVGHw9bvszakkF4/s320/IMG_0626.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5449721053171981826" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSVyTmSTypvuBmhytMn1hxmIb2ty7aeJX3B_5uX6P708NPYIrQi-gc2BEMGLGgs4dukgssGtsIddHW5wZfEwkgS6ER_xeV7DuGMrCvxSkBtKoB8ku_tqcWhrG0rMJmW0f4YqFD0BejjsY/s1600-h/IMG_0622.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSVyTmSTypvuBmhytMn1hxmIb2ty7aeJX3B_5uX6P708NPYIrQi-gc2BEMGLGgs4dukgssGtsIddHW5wZfEwkgS6ER_xeV7DuGMrCvxSkBtKoB8ku_tqcWhrG0rMJmW0f4YqFD0BejjsY/s320/IMG_0622.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5449721040886049938" /></a><br />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. <br />Emma and Riley each welcomed him with a little sniff. They aren't acting at all jealous and like to be wherever he is.<br />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.<br />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.<br />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.<br />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.<br />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. <br />Thanks for following our journey thus far. The blog doesn't end here...we're just getting started!!!Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com5tag:blogger.com,1999:blog-9025886385081141971.post-79512863965652930542010-03-15T01:32:00.000-07:002010-03-16T12:06:53.529-07:00Headed Home<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT11PezeVbbDJnOu1uyLSPO0nVYhV9heRQdBFvU16R0VKqqrbTucXO0rhVN_MGhhlPf3O_CqvxPzyyg_ow8IwgDmdG-RBID2LXv-ZWd98L3TDsmIvEIhCFR2kYn11_71DZR9Bqcl_G-Uw/s1600-h/IMG_0613.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT11PezeVbbDJnOu1uyLSPO0nVYhV9heRQdBFvU16R0VKqqrbTucXO0rhVN_MGhhlPf3O_CqvxPzyyg_ow8IwgDmdG-RBID2LXv-ZWd98L3TDsmIvEIhCFR2kYn11_71DZR9Bqcl_G-Uw/s320/IMG_0613.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5448776139342032274" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZARo9GZG9h-9WyvmdmJCOExYqWdZncFdyTXHyyJeoJvoglwtc-0LM6ok6p8orUKgIxuUIks6uy5I-E1v2drFDHm-nNw0sTYOcb1xrKUDR6OJHwiX9BTelOZdRHvlsZ4BpXh7em40TMys/s1600-h/IMG_0609.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZARo9GZG9h-9WyvmdmJCOExYqWdZncFdyTXHyyJeoJvoglwtc-0LM6ok6p8orUKgIxuUIks6uy5I-E1v2drFDHm-nNw0sTYOcb1xrKUDR6OJHwiX9BTelOZdRHvlsZ4BpXh7em40TMys/s320/IMG_0609.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5448776131507522690" /></a><br />Here we are leaving Riley! A wonderful emotional moment. Post to follow with pics from HOME!Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com3tag:blogger.com,1999:blog-9025886385081141971.post-74511785105448261572010-03-11T09:32:00.000-08:002010-03-11T17:53:46.678-08:00Training, Tests and HOME!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1NfpgcrC_KyXrD4aIp1iyoZQlBOm0Cv0pEiRPQyN7DZbDZZinu8tFc4VtlCgowkoMY_1IKLwOTORkQiESbg594sAMmGOiuvV-5-3EHvF_LRu0uW5qqAskivv93j46caEHdGthF8-iiis/s1600-h/24932_1228345957856_1505288371_30523967_6584415_s.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 130px; height: 86px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1NfpgcrC_KyXrD4aIp1iyoZQlBOm0Cv0pEiRPQyN7DZbDZZinu8tFc4VtlCgowkoMY_1IKLwOTORkQiESbg594sAMmGOiuvV-5-3EHvF_LRu0uW5qqAskivv93j46caEHdGthF8-iiis/s320/24932_1228345957856_1505288371_30523967_6584415_s.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5447559595958997234" /></a><br />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! <br />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. <br />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. <br />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.<br />G's care will be challenging, but we are confident and looking forward to being at home with our precious baby boy.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com11tag:blogger.com,1999:blog-9025886385081141971.post-73384602262013556852010-03-06T06:13:00.000-08:002010-03-06T07:16:13.777-08:00The H-WordWe have learned over the past three months that nothing about Graham is predictable. He is a man on his own schedule. But given that, we hope to make the trip home sometime this coming week. The perfect scenario, however, is not going to happen. Graham's swallow test yesterday did not go as well as anticipated. The fluoroscope showed that when Mr. G swallows breast milk, he aspirates a bit. This means that he must continue to get his nutrition through the NG (nasogastric)tube. We will continue this feeding process when we go home and will reevaluated in about four weeks. G is up to 70ml of fortified breast milk every four hours and is gaining weigh every day. The docs will continue to increase his intake, in 5ml increments, to the desired 90ml. Because of this increase in breast milk, Graham is almost completely weaned off his TPN, which means his central line can be removed soon.<br />Graham may also go home with a breathing assist. His fast breathing rate is still a problem and may necessitate oxygen through a cannula.<br />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.<br />Happy Birthday, Katie!Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com5tag:blogger.com,1999:blog-9025886385081141971.post-19579133702384659892010-03-03T09:13:00.001-08:002010-03-03T10:09:18.515-08:00Chubby Cheeks<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmUgrwzFFW-SF2S9oItUQ6ZlTps6nrgPHnW-35YddbcXPAVxghUFZykZm9JahDEGPz0Yo55QS6TONsIqK8Cm1tEKXhkJqS9N0ZO2N8nExlUc7eyj2En5hhX3ehfH_KPLshj8KH6TW6BL8/s1600-h/IMG_0582.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmUgrwzFFW-SF2S9oItUQ6ZlTps6nrgPHnW-35YddbcXPAVxghUFZykZm9JahDEGPz0Yo55QS6TONsIqK8Cm1tEKXhkJqS9N0ZO2N8nExlUc7eyj2En5hhX3ehfH_KPLshj8KH6TW6BL8/s320/IMG_0582.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5444457388734844802" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1RVKNVtBbrvwqljJdfF0lNJkIub_nRjlGQMujBGp8Juc86lMjyVvl3mkcZDviME96YrQRpYTsrN63i9vK8HBbwP0I8LtXwR14CKXuoQ-qX3uJrOyk7jsNkKeOumVnL6dgmXNSmglJXP8/s1600-h/IMG_0574.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1RVKNVtBbrvwqljJdfF0lNJkIub_nRjlGQMujBGp8Juc86lMjyVvl3mkcZDviME96YrQRpYTsrN63i9vK8HBbwP0I8LtXwR14CKXuoQ-qX3uJrOyk7jsNkKeOumVnL6dgmXNSmglJXP8/s320/IMG_0574.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5444457384835984898" /></a><br />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.<br />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.<br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com15tag:blogger.com,1999:blog-9025886385081141971.post-27363406154147636752010-02-28T17:46:00.000-08:002010-02-28T18:30:54.624-08:00GraduationGraham is set to graduate from the NICU to the Infant Care floor, possibly tomorrow. He is healthy enough to move on. There are some final hurdles to get past before we can start using the H-word (home), but this move is huge.<br />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. <br />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. <br />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. <br />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.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com9tag:blogger.com,1999:blog-9025886385081141971.post-88087630950452396252010-02-23T12:07:00.000-08:002010-02-23T13:28:49.621-08:00All Smiles<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-vw-oXZM4Uxv05WkfQV9iplqoC3Sf1qRM4vMuMbbnzds31CZbceiBw-M6-WIdZGrx3rcnEKLyZ3Ta2otq_TT8kZoS3PzNThsFUBUeFQzGSpCeqcnkl8u0fviFWrKHAVpsSJYxDyXEhpQ/s1600-h/IMG_0535.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-vw-oXZM4Uxv05WkfQV9iplqoC3Sf1qRM4vMuMbbnzds31CZbceiBw-M6-WIdZGrx3rcnEKLyZ3Ta2otq_TT8kZoS3PzNThsFUBUeFQzGSpCeqcnkl8u0fviFWrKHAVpsSJYxDyXEhpQ/s320/IMG_0535.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5441533673759425970" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdxX4nu4NsUk-K1FZOsddgw1oRtbh-2JrsoPcOtRPlPJPbEUktAIjxIot2onbpNu9sb1hwWfb7wsza2uxd30-3jzsIOrZ07IlNBOquFC-rr0Svza9HLcKhi4J7FgN-1r-7vIlvnh402J4/s1600-h/IMG_0545.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdxX4nu4NsUk-K1FZOsddgw1oRtbh-2JrsoPcOtRPlPJPbEUktAIjxIot2onbpNu9sb1hwWfb7wsza2uxd30-3jzsIOrZ07IlNBOquFC-rr0Svza9HLcKhi4J7FgN-1r-7vIlvnh402J4/s320/IMG_0545.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5441533667999370738" /></a><br /><br />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.<br />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.<br />These pictures show a happy, smiling, and growing baby boy of eight and one-half pounds, who is, quite simply, lighting up our lives.Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com10tag:blogger.com,1999:blog-9025886385081141971.post-17998314956659521992010-02-18T10:01:00.000-08:002010-02-18T13:47:00.806-08:008 Lbs. and Growing!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXj6j3d5wmeSNm8wRGv-WLSZklPQjFPbLRjNW5BvF4hSZ2mrR_WdLbL12xqZS95L3eaK5XyYl7f8eSB7cVS9BQfcoMKF2azd259EKYX-7XhUcAP-EXrXb8Kh4AT9yeFxrgsdcENMPD9Qk/s1600-h/IMG_0509.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXj6j3d5wmeSNm8wRGv-WLSZklPQjFPbLRjNW5BvF4hSZ2mrR_WdLbL12xqZS95L3eaK5XyYl7f8eSB7cVS9BQfcoMKF2azd259EKYX-7XhUcAP-EXrXb8Kh4AT9yeFxrgsdcENMPD9Qk/s320/IMG_0509.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5439697530009928194" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVU8LhFn3mcL5CA8dwd1XiPfvLnMZ5yxlE63h3xccUvTePptohsMPA-4X_dRPczXAC8dtiK-qMay2tWPgNuEH1e3JKUndaH1mTlklN7_KtOkNvvBLNXAYAW-pOfomU8s71vaNearANH-w/s1600-h/IMG_0510.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVU8LhFn3mcL5CA8dwd1XiPfvLnMZ5yxlE63h3xccUvTePptohsMPA-4X_dRPczXAC8dtiK-qMay2tWPgNuEH1e3JKUndaH1mTlklN7_KtOkNvvBLNXAYAW-pOfomU8s71vaNearANH-w/s320/IMG_0510.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5439697519917087970" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKhJRP9p5vZV_mRNS5KK4x8k1trIlB_rLoR0k6WFakQZ0znFzN8dAjGMpQR1sWjQXvhG4tUV2jUyU-gaDqr1rL__qKtZHaUpPky0EirRvQhxt2rCS0BUcpofQ9eBAqAt9q6cqTM8DqwKU/s1600-h/IMG_0512.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKhJRP9p5vZV_mRNS5KK4x8k1trIlB_rLoR0k6WFakQZ0znFzN8dAjGMpQR1sWjQXvhG4tUV2jUyU-gaDqr1rL__qKtZHaUpPky0EirRvQhxt2rCS0BUcpofQ9eBAqAt9q6cqTM8DqwKU/s320/IMG_0512.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5439697500350934770" /></a><br />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. <br />His breathing continues to be on the high side, but we're all realizing this might just be how Graham is going to be. <br />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. <br />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!<br />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?!?Bill, Katie and Graham Lawhttp://www.blogger.com/profile/11569425479127809919noreply@blogger.com12