Merry Christmas from Greyson, Brooke & Michael

Greetings, Hope this letter finds you all well this Holiday Season. I can't believe it has been almost two months since we checked in with everyone about Greyson but since he hasn't had any doctors appointments we didn't have anything major to share. "Buddy" has continued to shrink a little more in the front and under his arm from the sclero-therapy. The spots in his hand and arm seem to be a tiny bit bigger but it hasn't seemed to slow him down any.

Greyson continues to get physical therapy and visits from a special instructor to make sure he is staying on track developmentally. He is still scheduled to have surgery at Children's Mercy on January 27. We expect he'll stay in the hospital a few days but we aren't sure. We hope he will get to stay in a regular room so we can stay with him. I will keep everyone posted with his progress through this page during surgery and recovery.

Greyson is doing just perfect and keeping Michael and I hopping. We have gotten into a great routine and Greyson is developing faster than ever. He grows and changes daily. To catch you up, he is almost 8 months old (on the 7th of January), he weighs a bit over 18 pounds, and is more than 27 inches long. He is smiling all the time and laughs with and at Michael the most. He loves to stand up with one of us holding him and is just now beginning to sit on his own and play with toys tipping over occasionally. He rolls onto his belly a lot from his back and can pivot around. He is now figuring out how to roll over "buddy" and is working on getting back to his back. He is a great eater - eating lots of vegetables and fruits but not really enjoying meat yet. He has started to learn to eat finger foods with a little more texture and is trying to drink from a cup but we have a long way to go.

On this Christmas Day we are reminded about all the family and friends that have kept Greyson in their thoughts and prayers and we wanted to thank you all and wish you the Merriest of Christmases and the Happiest of New Years. We appreciate you all and count ourselves very lucky to have you on Greyson's support team. We look forward to seeing and hearing from you soon.

We love you,
Brooke, Michael, and Greyson

1st Halloween

Greyson's first Halloween was a busy one with friends visiting (thanks Hicklin's) and making some Trick or Treating stops around town and through our neighborhood(not as many as we would have liked). We finished off the day with Gramps and Grandma B coming over for dinner. The skunk costume was a great find at Old Navy the weekend before Halloween. The last one and it was actually his size (which is now 6-9 months).

The most exciting thing of the day was finding that Greyson has a little tooth coming in (see picture). Not sure how long it will take to make its way out but how exciting it was to see that little tooth pushing through. It was so exciting in fact that Michael even stopped playing his video game to check it out. Greyson doesn't seem to mind it much for now; he just continues to chew and drool on everything.
I uploaded some pictures to the Photo Gallery and although they didn't load in the correct order I am sure you can figure it out. Hope you are all enjoying this beautiful Fall.
Brooke (Michael & Greyson)

Surgery Date Set

After much coordination one of the great nurses (Michelle) at Children's Mercy has found a date for Greyson's big surgery. She worked very hard to get the 2 plastic surgeons and one general surgeon together on a date that would work for all of them and Greyson and it looks like surgery will be in the afternoon on January 27. They expect it to last a few hours.

Greyson has 3 more months to get even bigger and stronger (which shouldn't be hard since he loving eating solid foods). It seems so far away but in the grand scheme of things it is just around the corner. With the holiday's just around the corner it will most likely fly by.

To our knowledge, he will not have to go back to KC until the day before surgery (for blood work) and we expect that he might have to stay in the hospital for a handful of nights and will then be back home to finish recovery.

Thanks again for all the thoughts and prayers. We talk about you all with Greyson so that he knows how many people love him :)Happy Halloween to you all - come back and visit Greyson's site next week to see his Halloween pictures....he is going to be a skunk.

5 Months & Dr. Appointments

Today was Greyson's appointment with the doctors at Children's Mercy to begin planning his upcoming surgery. We visited with the radiologist, dermatologist and plastic surgeon along with all of their nurses. They checked in and were all very pleased with the shrinkage in Greyson's growth and the way his skin has changed. Dr. Jiang, one of the plastic surgeons that will do the surgery says that they are ready to plan and see what they can do for Greyson. Their staff is working now to try and get this scheduled and we will let everyone know as soon as there is a date. There are a lot of individuals and resources to coordinate so this could take a little time.

One of the biggest thing discussed was what to expect after surgery. The doctors want to make sure we understand that even after surgery, the chance of the growth reoccurring is possible and it is likely that he will have to have future surgeries as things progress. It seems to be the nature of this kind of "beast" and we will have to see what happens. We also talked about what to do with the spots in Greyson's right arm. For now we are going to wait and see how taking off the larger growth will affect his arm.

Greyson turns 5 months old tomorrow...he now weighs 16 pounds 2 ounces and is 26 inches long. He has gotten so strong and holds himself up well when we carry him. He is still working with the Special Instructor and Physical Therapist. They are trying to teach him how to roll over and how to sit up and he is getting so close on each but the weight of "buddy" presents some challenges.

Greyson jabbers a lot, smiles, and sometimes giggles. He is very friendly and especially loves his TV friends. He still likes to go on runs with me and will be able to continue this into the fall as soon as we get the weather shield for the stroller. This weekend Greyson is having a sleep over with my Dad and Beck when Michael and I go out of town for the night. He is also going to get to try rice cereal for the first time and get to go to his first race to see me run. Next weekend will bring on his first Maple Leaf Parade and trail ride at Gramps and Grandma B's. And he will have his first Halloween at the end of the month.

We look forward to seeing or hearing from you all. Happy Fall!
Brooke (Michael & Greyson)

4 Months Old

Greyson turned 4 months old on September 7. Wow, how time fly's. Things have gone really well since the last sclero-therapy treatment although we haven't seen much shrinkage he is doing great. Greyson continues to receive care from his Physical Therapist, Suzy and Special Instructor, Sharon. He really wants to roll but just can't get over. He loves to suck on his hands and uses his hands to grasp toys (his left more than his right). We are working on getting him to prop himself up on his arms when laying on his belly and hold on to toys with both hands. He likes to lift his legs up and kick them all around and has even found his feet a few times.

Greyson had his 4 month check-up today with the pediatrician in Joplin and is growing as he should be. He did have to get shots today which he doesn't like (obviously) but he didn't cry much and didn't seem to feel bad after like last time. He weighs 15 lb 8 oz and is 25 3/4 inches long. That puts him in the 40th percentile for weight and 60th percentile for length.

We have had a chance to visit the lake a few more times and Greyson has enjoyed riding on the pontoon boat now that there have been some cooler days. He traveled with me to Columbia one last time for a week and spent lots of quality time with Grandma Diane. We even took him for his first swim in a pool (he acted like it was nothing - a bath seems to be more fun). Last weekend we went to Wichita to watch his cousins play football and soccer and visited lots of family. One thing we have figured out is that he gets really tired of the car bed and hot as well....and when he's done he let's us know loud and clear. We don't see any long trips in the near future and are working with the car seat lady from Children's Mercy to find an alternative.

Greyson's next appointment is scheduled for October 6 with the plastic surgeons to plan his surgery in January. We are looking forward to an uneventful and quiet fall.

Finally, I figured out how to get the video clips we have been taking of Greyson online for you all to see. Just visit this link and you should be able to see both our mobile uploaded pictures and videos. http://gallery.me.com/higginsb#100150

2nd Sclerosis Procedure

At the end of another full day here in KC at Children's Mercy. Lucky for all three of us, we are ending it at Ronald McDonald House instead of a room at the hospital. They sent us on our way after 4pm this afternoon to be in charge of the drain tubes and to hang out until Friday when they take them out.
The day started off with blood work taken at the Children's Mercy lab that all turned out good. Man, those ladies that draw blood there are good. One stick, some tears, and 3 tubes later and we were out of there. This was very un-like his experience at St. John's this week - ahhhhh. Greyson's hemoglobin has finally decided to even out and it was a non-issue today and hopefully we won't have blood work again until before the January surgery.
Then up to radiology we went and the waiting started...30 minutes in the radiology main waiting room before the sedation nurse came to get G. Then 2 hours in the sedation room (think small hospital room) where all the doctors came to check out Greyson and have us sign consent forms. The MRI was supposed to start at 11am but they didn't even make us hand him over until 11:30am. What was scheduled for an hour MRI was really a 2 hour MRI since they were scanning both the buddy and G's right arm. After that they took him on to the room where they do the sclero-therapy for a 45 minute procedure all while we waited in the MRI waiting room (much nicer and quieter than the main waiting room). Greyson was completely out and intibated (sp?) for both procedures which seemed to add a bit of anxiety to all the waiting. The good thing was anesthesia gave him some gas to fall asleep before putting in the IV so he skipped out on that pain.
Even though we were without him for so long it was worth it. Dr. Rivard said that this will most definitely be his last sclero-therapy treatment since he has now taken care of all of the large cysts. This type of treatment isn't for the 100's of small cysts that remain. The surgery will take care of those. Dr. Rivard also read the MRI of Greyson's arm and let us know that the lumps and bumps that we can see, and some that we can't, are more cysts much like the ones in his chest. So the plan is to wait until after the large growth is taken off to see how the ones in his are react and then decide what to do about them.
Again, we had excellent nurses and doctors taking care of our little one. We are so lucky to have these experts to help Greyson through this detour in his journey.
We must thank our friends Don and Jackie for having us over for dinner tonight. They made quite a spread and entertained us for the evening keeping Michael and I from going stir crazy in our RMH room all night. The fajitas and fixen's were great but the time hanging out, relaxing, and visiting with good friends was even better. And thanks Jacks for putting the little guy to sleep even after the drain bulb incident ;) you handled it all like a pro!!! Your a natural.
Greyson went through a lot today but started with smiles and ended the day the same way. What a great little guy we have....all the nurses today agreed.
Thank you all,
The Higgins

Officially 3 Months Old

Today is August 7, 2010 - which officially marks the day when Greyson turns 3 months old and he is doing GREAT. Michael and I, along with a lot of family and friends, have been enjoying every day with him.
As most of you know, babies change all the time and Greyson is no different. He is getting bigger and bigger, almost 14 pounds, and of course likes milk but LOVES apple juice. Seems that he has a sweet tooth like his mom ;) During a visit from Michael's mom this month, she verified that G does look a lot like Michael when he was a baby except for that nose and chubby cheeks, those seem to be mine.
G is getting so strong, holding his head up on his own with only a little head bobbing ;) He gets some tummy time every day and likes riding around in the baby wrap and Bjorn pack. The physical therapist thinks he might be ready for a Bumbo seat soon so we are on the look out for one. We're hoping some time sitting up will help with the bald ring that has formed around the back of his head where he rubs his head back and forth in his bed. Hope it grows back soon. He is going down for naps pretty well these days and is sleeping for 5-6 hours at a time during the night.
He has really started to get animated with lots of smiles and more jabbering all the time. G loves to stick out his tongue and chewing/sucking on his hands, occasionally gagging himself. He even started to laugh a bit when Grandma B was playing with him on a recent trip to Columbia.
We will be heading back up to Children's Mercy in 2 weeks for his second sclero-therapy treatment and an MRI (Aug 18-20). His buddy has continued to shrink some on the top and we hope the next round works as well. We will add updates when we get to KC so that everyone knows how things are going.
Enjoy the rest of your summer. Stay cool ;)

July Check-Up

Greyson had a GREAT check-up with the doctors at the Vascular Anomalies Clinic this afternoon. He was the center of attention and they are all pleased with his progress and how big he is getting (24 in long, 13 pounds 6 ounces). We had a couple of shifts of doctors come in and out; thinking 7 doctors, 2 nurses, 1 nurse practitioner, and 1 medical social worker. It was a full room for sure.
They are very happy that we are seeing some shrinkage with the growth and still plan on doing another sclerosing procedure as scheduled in the middle of August. Dr. Rivard, the radiologist, thinks that he will have taken care of the majority of the large cysts then and this treatment doesn’t work on the small ones so he will be finished. The plastic surgeons, Dr. Jiang and Dr. Rast, want to see Greyson back around the beginning of October to begin planning the surgery to remove “Buddy”. Dr. Jiang wanted us to know that he will probably not be able to remove all of it but will get the majority and Greyson may have to have other surgeries in the future. We are planning his surgery to be in mid-January but don’t have any dates set in stone as of yet.
We have noticed that Greyson’s right arm is swelling a bit and there are some lumps and bumps that have been their all along and some that have shown up along the way. The doctors agree that it might be time to look into those and Dr. Rivard will do an MRI to see what is going on when they have Greyson knocked out for the sclerosis. We like the idea of killing two birds with one stone only having to put him under once for multiple tests/procedures.
The doctors at Children’s Mercy are so great and supportive. We are very lucky that Greyson found his way here into their care.

Almost 3 Months

We can’t believe it is already July 25 and Greyson is almost 3 months old. No longer will we have to count weeks to figure it out how old he is, now it’s months. You all won’t believe how much he is changing on a daily basis growing and getting more of a personality. He has made his first trip to the library, gone out on the boat, and is going for a sleep over tonight to Gramps and Grandma B’s (with us).
Greyson’s legs, arms, and neck are getting much stronger and he can hold his head up on his own pretty well for short periods of time. We can now carry him facing forward in the baby carrier which he loves because he can see everything. He spends some time each day in his play yard looking at himself in the mirror and smiling a lot and he “talks” to the fabric on the quilt in his bed and above the changing table every chance he gets. He has discovered his tongue and sometimes he and Michael make faces at each other and stick their tongues out. We have found a couple of ways to get him some “tummy time” and this seems to be helping with muscle control although he does have a hard time getting his right arm out in front of him, but he will get it soon enough.
Friday brought Greyson’s first visit from a Special Instructor (Special Ed Teacher) from First Steps, a developmental intervention program. We are lucky that he qualified for services from the Special Instructor, Sharon, 2 times a month and from a Physical Therapist, Suzy, 1 time a week and the cool thing is that they are sisters and can work together to help Greyson out. We know that his “Buddy” is going to slow him down a bit but with their help maybe we can find ways to work around it and keep him moving.
Over the past few weeks we have continued to have his blood work done and while it is not as high as we would like it is not as low as it was when he was in KC for the last procedure. We hope the doctors agree that it is ok and will call off the weekly heel sticks. If he could tell us I am sure he would vote for no more visits to the lab although the ladies are very sweet to him.
Tomorrow he visits Children’s Mercy for a check up with the Vasucular Anomolies Clinic doctors. We will get to see what they think about the changes in his growth and decide if it is working well enough to do another round of sclerosing in the middle of August. I think “Buddy” has changed (seems like it is sinking in a little) a bit more since the last visit but will be interested in seeing the pictures they took to really see the difference. We hope that they will be able to give us a better idea of when his surgery might take place and how long to expect his recovery to be. We will post an update tomorrow evening to let you all know what the doctors have to say.
We hope you are enjoying your summer and thank you for all of your well wishes, messages, and visits. We look forward to more.

8 Week "Birthday"

Greyson is 8 weeks old today and doing GREAT. Michael and I (along with lots of family and friends) have been enjoying every minute with him and have had a chance to see him grow.... and my, he has grown. Not sure how big he is now but he is starting to grow out of clothes (getting longer and putting on the ounces ;) As you can see from the pictures in the gallery, his cheeks are filling out.

We have seen a tiny bit of shrinking in the growth but not really that much. The full results of the procedure are often not seen until 8 to 10 weeks out. He has had blood work done the past two weeks and we have seen a steady increase in his red blood cells so that is promising. Only 3 more weeks until we go back to Children's Mercy for a check up which means 3 more blood draws, but the ladies that take his blood in Joplin are getting pretty quick at it and they love him to death when he comes in.

We hope you all enjoy the holiday weekend. Take some time to relax and spend time with those you love.

Going Home Today

Greyson got through his appointments this morning and is ready to go home. We are cleaning up our room at RMH while he sleeps the morning away. He had a GREAT night last night, at least by the time he fell asleep at midnight. He slept through until 6AM - boy he was tired for sure and we were quite surprised and pleased to get that much sleep.
The lab visit wasn't too bad since he only had to have a heal stick and didn't cry too much. His blood work came back pretty well although he is going to have to have blood drawn each week in Joplin to keep an eye on his anemia (hemoglobin) until we come back up for his next Vascular Anomalies clinic visit at the end of July.
Greyson then visited Dr. Rivard, the radiologist that did the procedure on Wednesday, and got the drain tubes taken out with no pain. It was a little gross for me to watch but not too bad. He only has two little incisions that should close up in a day or so and we can take the dressings off tomorrow. Dr. Rivard seems to think the results (shrinking) will be coming soon but full results from the first sclero-therapy session won't be seen until 8-10 weeks. We scheduled the next procedure for August 18 (Dr. Rivard's Birthday - Greyson will have to remember that:). Hopefully Greyson won't be anemic and need to stay in the hospital then.
Hoping you are all well and that we see you sometime soon. Greyson sends his love to you. Thanks so much for keeping him in your thoughts. We made it through this first part of the journey and are looking forward to the next steps.
Brooke, Michael, & Greyson

Getting Discharged

Finally...I think we have seen every doctor or nurse possible
today but they are finally saying we can get out of here. Greyson
has had blood work done (very traumatic) and has hung out all day
long. We have an appointment in the morning to get drain tubes out
and have more blood work and then hopefully we can head back to
Carthage. Thanks again for all the support and wonderful
messages.

Brooke

Some Stats From the Day

Having a hard time sleeping so thought I might share some stats from the day....
12 pounds
23 inches
Hemaglobin 8
198 Heart Rate - highest it got when he got mad
100% O2 level most of the day
4 - # of people it took to finally find a vein for his IV
4 - how many cysts they were able to inject today (2 large, 2 small)
18 - # of doctors and nurses that Greyson came in contact with today
10 - # of things attached to him now
Heart Rate lead (chest)
Respiration lead (chest)
another lead (chest) *not sure what it is for
Blood O2 (big toe)
IV taped to splint(left foot)
IV taped to splint (left upper arm)
2 Drains with 12 in. of tubing and bulb at end (buddy)
hospital bracelet (right ankle)
blood type and cross bracelet (left ankle)

As I sit here watching Greyson try to sleep I am amazed at how many things are attached to him, all to keep an eye on everything during his 24 hours of "observation". No wonder he is annoyed and keeps waking himself up. I think he might be most mad about not being able to suck on his fingers, his newest finding.

Going to try and sleep now.
Brooke

Recovering Now

Greyson did great this morning. Michael and I thought he would be very fussy due to not being able to eat from 4am on, but he didn't fuss that much at all, even when they poked him 4 times trying to put in an IV. I will tell you though, he did love his pacifier and sugar water for sure.

The procedure took around an hour. The radiologist was happy with the outcome. He was able to inject 2 large cysts and 2 small cysts after draining them. The antibiotic they injected will shrink the cysts by "attacking" the tissue. At the end they inserted drain tubes in the larger cysts and hopefully those will come out on Friday as long as things go well.

Unfortunately Greyson did have to get another blood transfusion. His blood work before the procedure showed that his hemoglobin was low (like when he was born they thing due to the growth). This along with a high heart-rate after the procedure made the doctors decided it would be best to give him some blood to off-set it. Because of the transfusion/low hemoglobin, they also thought it would be best if he stayed overnight in the hospital for observation and another check of blood in the morning. This will give us some help taking care of his drain tubes and pain management as well.

We are still staying at the Ronald McDonald House (Longfellow Building) in room 41 until Friday and will be here at CM in the Henson tower on floor 3 - Room 3 until sometime tomorrow. If you would like to call we can be reached on our cell phones or here a the hospital at (816) 460-1044+3403.

Thanks to all for the wonderful messages. I hope to post more later and maybe some pictures as well.
Brooke (Michael & Greyson)

1st Procedure Tomorrow

We are back in KC staying at the Ronald McDonald House again but with Greyson this time. Tomorrow is the first Sclerosis procedure for Greyson. He has been doing great (almost up to 12 pounds we think) and we hope that this doesn't slow him down a bit.
The doctors have told us they don't think this will cause him much pain since he will be out when they do the treatment but we really won't know until it is all over. Michael, Greyson, and I will stay here at RMH until Friday we hope when the doctors will give us the go-ahead to go home. I plan to post an update sometime tomorrow afternoon when we get back to our room. Hoping for the best for our little guy.

A Week of Firsts

Michael and I can't believe that we have been parents for 4 whole weeks. Wow, it has been an experience for sure and we keep learning more every day. Greyson is such a great baby and we are having lots of fun getting to know him. This week has brought about more 1sts that we thought you might be entertained to hear about....
1st Month Down - Greyson is exactly one month old today!
1st Night in His Own Room - Sunday night Greyson started sleeping in his own room!
1st Real Smile - really, I promise...Allison even saw it - check out the gallery pic ;)
1st Laugh - not a real one but while he was sleeping. We wonder what a month old really has to laugh about???
1st Night Alone w/Mom - and we did great.
1st Spit Up/Poop Combo - all within 2 minutes I was covered (exaggeration of course) in both.
I'm sure there are more 1sts but who can remember them all with so little brain cells awake. I better get to bed. ;)
We are counting down the days until our trip back to KC and will fill you in more then.
Brooke

A Procedure Date Already

We have an official date for the first of a couple of radiology procedures.
Looks like we will be heading back to KC to Children's Mercy for a sclerosis procedure on June 16. We will stay 3 nights again at Ronald McDonald House and hopefully Greyson will not have to be admitted and will stay with us. He will have to be put out for the procedure to make sure he doesn't move and it will take a bit more than an hour. They will insert drain tubes for a couple of days and as soon as those are removed we will get to go home.
The doctor does not think that this will cause him pain since he won't be awake but the drain tubes and dressings will provide some challenges for a couple of days.
We hope that we will see results (shrinking a section under his arm) within a few weeks of the procedure but it could be as long as 10-12 weeks. The doctor thinks that he will wait to do the second round until 10 weeks after the first but that can all change depending on the results. Look for more updates that week.
We are going out for a walk now to enjoy the beautiful weather.
Brooke

CMH - Vascular Anomalies Clinic Visit

Yesterday we headed up to Kansas City to meet with the Vascular Anomalies doctors (Dermatology, Hematology, Plastics, and Radiology + a nurse practitioner, nurse, and social worker). After having labs run we took Greyson up to the appointment and after we waited for almost 2 hours, the whole group of doctors all squeezed into the tiny exam room to talk about their findings and treatment plan for Greyson.
As far as Greyson is concerned, he is doing great - expect for the mass. After looking at pictures, we realized that the growth has shrunk a little. The doctors had thought it would since they felt it was a bit swollen due to "trauma" during delivery; it has gotten a little smaller, has lightened up a little in color (bruising has gone away), and is a bit softer. The really good thing is that he still doesn't seem to be bothered by it at all. In fact, we have been referring to it as he "buddy" or "friend" since he holds on to it and sometimes rests his head on it.
The team of doctors came up with the plan to use a couple of different treatments to take care of the growth. The radiologist will be sclerosing, which is injecting with a chemical that will shrink some of the cysts, targeting some of the larger cysts under his arm first to help his mobility of his arm and shoulder. Then in 6-12 months the plastic surgeons will remove what is left of the mass.
So it looks like we will be back up in KC in a month or so for the first of a few sclerosis procedures (working on scheduling now). We think we will be there for a few days and will stay at the Ronald McDonald House again. Greyson may or may not have to stay overnight in the hospital. The second sclerosis procedure will be done in about a month after the first as long as it works.
With planning for all of these procedures we now have to think about child care. The doctors talked a lot about keeping him well and suggested that we not take him to a sitter with lots of other kids for a while to keep him healthy. Please let us know if any of you know someone that would be willing to watch one child either at their home or our home.
Right now we are just learning how to be parents - today happens to be my first day home alone with him and he has slept through most of it. We have had a few visitors (bringing meals) and I am trying to get things organized (pictures, bills, paperwork, and normal home stuff). I will probably not put up any updates unless we learn more about Greyson's treatments or if things change.
Thanks to all of you that have been providing meals for us which has allowed us to focus on parenting and not cooking (thanks to Allison Rogers for coordinating this). We have enjoyed all of the visitors. If you would like to come see Greyson, just give us a call and we will set something up.

A Day of 1sts - Photoshoot & Pediatrician Visit

Greyson had his first real "photo shoot" today. Allison, who did our maternity pictures, came by to visit and take some pictures. She has posted some on her blog if you would like to see. I think they turned out soooo good and can't wait to get some printed. Again, a wonderful friend, doing a very giving thing for us. http://mombesplace.blogspot.com/2010/05/12-days-old.html
We ventured out for the first time to go to meet Greyson's new Pediatrician, Dr. Wheeler, ini Joplin. He had been briefed by our Neonatologist from Children's Mercy so he was prepared for Greyson's visit. The checkup went well....he is back up to 10 pounds and everything else looked good. They checked his bilirubin and it has continued to drop which is also positive.
For those of you that would like to come and visit give us a call and we will figure out a good time. Also, I probably won't put up anything new until after our doctors visits with Children's Mercy on Monday. We hope you all have a wonderful weekend.
Brooke (Michael & Greyson)

All the Comforts of Home

So we made it home yesterday with no problems. Greyson slept the entire way and slept a lot hanging out here at the house. Check out the Gallery for going home pictures and hanging out at home pictures.
He entertained some guests yesterday and slept through most of the visits. His Aunt Bobbie came by for some loving and will be back today and the Carthage Running Club (CRC) also spent some time with him. We must say thanks to all of our Monday visitors - they all brought us YUMMY dinner(s) so we didn't have to worry about cooking anything.

The rest of the week will bring Grandma Shelia and then Grandma Diane, each for a few days to help out. We will have family and friends in and out all week and weekend getting the chance to enjoy some time with Greyson. He is even going to have a little photo shoot with my friend Allison. She is so talented and I can't wait to see what she does with Greyson. For those of you that didn't see - she took some beautiful photographs of Michael and I when we were expecting. If you would like check them out at: http://mombesplace.blogspot.com/2010/05/one-week-to-go.html

Besides hanging out here at home we go to the doctor tomorrow for check up and to check his bilirubin levels. He is looking a bit yellow but we are hopeful that it hasn't gone up.

We'll keep you posted.
Brooke

Sunday Packing

After a LONG night under the lights and a heal blood draw at 4am this morning, Greyson, Michael, and I are finally packing to go home.

Rounds were made a little after 10am and the fill in Attending tried to hold us for another day. Luckily the residents that have been working with Greyson since the day he was born filled him in on everything and let him know that we have a follow up appointment on Tuesday with a Pediatrician and there is already a plan to check levels then as well as the possibility of having a home health care person come to do additional draws if necessary. And along with a reminder that we will be back for more appointments a week from now....and a few of my tears, he changed his mind.
So home this afternoon....short term plan is a go ;) Now let's hope for a long term plan that will start soon.

Will update you on how our trip and first night home is tomorrow. We can't say enough how thankful we are to have you all as a support team. Thanks for all the visits to this site as well as all the supportive and loving comments. We hope that you will all get to meet Greyson in person and experience what a great kid he is.

Thanks again,
Brooke, Michael, & Greyson

A Long Saturday

We had a few visitors today around lunch time. Don came to say hey and brought me a much needed Starbuck's latte. Brandy and Kirk came by so she could love on Greyson now that he is out of the NICU and Gramps and Grandma B came all the way from Fort Scott for a short visit but they each had the chance to hold him before the nurse brought in the bili-lights and we had to put him down. The funniest thing was that I think he slept through all the visits and wasn't very entertaining. It's so funny, when he is out he's out, but when he is awake he is very alert.

The afternoon proved that Greyson HATES the bili-lights but mostly the mask he has to wear when he is under them. It is very hard to console him when he gets mad so I hope this fixes the problem and we can get rid of them and get to go home. They are going to check his levels first thing in the morning and then again in the afternoon before deciding if we can go home. Not going to jinks anything so no more updates before we find out for sure. While Greyson and I were fighting the lights Michael was fighting the dirty clothes. The Ronald McDonald house room here in the hospital had a washer and dryer there so he spent most of the day running laundry and he even got to have dinner provided by the volunteers.

Hope you all are having a great weekend even with the weather. Hoping for sunnier days.
Brooke

Home Today???

Still thinking we will get to go home today. Greyson's Bilirubin (SP???) did go up a bit again but not sure if that would keep us here. We did have a bit of a rough start for the beginning of the night but by 1:30 he was settled in and slept pretty well.
The rest of the day was a whirl wind....lots of doctors in and out wanting to check in with us before we left. Both Dermatology and Plastics came in to make sure we understood how they would still be involved and how they have communicated with their colleagues that will be working with us when we come back on May 24.
I owe Rachel a huge thank you for helping us do some problem solving with figuring out what this little guy is going to wear. She brought over some different sized outfits of her boys and we did some measuring. Then she went shopping for us and picked out some really cute outfits. So far pants fit correctly but he is having to wear about 9 month sized shirts. Think she thought the payoff was pretty good. She did get to hold him for quite a bit and get her fill of him. So sad that lots of the super cute clothes in his closet are not going to fit now and with not knowing when we might be having any surgery who knows if he will ever get to wear them :(
Ok, hearing test lady is here while Greyson is asleep. Better get cleaned up before rounds. Keep your fingers crossed that he will get to go home today.
Brooke

Not Going Home Today

Doesn't look like we will be going home today...his bilirubin count has continued to go up. They are going to put him under the lights for today and check it a couple of times tomorrow. Disappointed but understand - just wish we had a more comfortable place to hang out. Would love to sit on our own couch, watch our own TV, and put him in his own bed. It will come soon enough I am sure.
Brooke

A Great Night

So our first night with Greyson in the hospital went well...he is such a great baby, hope it stays that way ;-) We got up 3 times for a feeding which wasn't too bad. I am sure this is all going to catch up with us soon.

We are lucky to have our awesome nurse, Emily back for the day. She loves Greyson so much and is very helpful. She is even going to watch me give him a bath all by myself today to make sure I know what I am doing.

Doctors came in for rounds this morning and are still checking his Bilirubin (sp?) in the morning so we will get one more night of needed practice before going home tomorrow. We had the "car bed lady" in this morning and she and Michael installed the car seat. It isn't as stable as I would want but it has been car crash tested. We have our baby appointments made for next week in Joplin and for a follow up here all set up. Lactation came in for a final meeting and things are looking good in that department. We have a Infant CPR class at one and he has a hearing test sometime this afternoon.

Its a busy day but we are excited to have him home soon.
Brooke

Our First Hump Day

Today was another day back at CM with Greyson. We got there before the first feeding of the day so he was able to breastfeed instead of bottle. He has enough milk stored up now that hopefully he won't have to have formula. He is not big on the flavor and he usually spits it up some any way.

At rounds this morning we found out that our insurance company is pushing the doctors to figure out something to do and do it or discharge us. We are waiting around on one service, Radiology, to figure their suggestions before the team meets to come up with a final plan for us to decide on. AHHH just what we need is insurance sticking their nose in....or maybe that will get Radiology to do what they are supposed to do.

I had my follow up appointment with the OB and got the staples out. No issues, they just told me to take it easy and take care of myself. Guess Michael will still have to push me around in the wheel chair down the LONG hallways to get to the NICU.

We had a few visitors this afternoon and it made the day fly -
Rachel came by with a poster for Greyson's "condo" with his name on it. I asked if she might make something since she has picked up a little scrap-booking as a hobby. It is VERY cute (Thanks Rach).
Jonas stopped in for a bit after the afternoon feeding. We shared stories about Greyson and he shared stories about Mia.

Brandy came by and we played around with him even more. She fixed his hair (fauxhalk) and had a bit of a photo-shoot (see Gallery). Can't wait for Hank and Greyson to meet.

Gramps (my dad) and Grandma B (Becki) also stopped in for a visit. We sat in "Diner" and had dinner during the 7-8pm shift change. They visited Greyson for a while and then headed home.
At the end of the day today we asked Emily (day nurse) if we might move to a "condo" with a view (an open slot by the windows). The area is a bit bigger and we will be more comfortable for sure. Hopefully the night nurse Kelly will get us settled there before morning.

Better get going - falling asleep as I type. Everyone have a wonderful day tomorrow. We will have lots of visitors again and hopefully Radiology will come by for their consult.

Better go, the storm has set in. Love you all,
Brooke (and Michael)

A Short-term Plan

Today was a big day for Greyson....he started out his day in the NICU in his new window unit which was MUCH bigger than the other unit we were in but by the end of the day he had his very own Private Room. Now he can have as many visitors as he wants and Michael and I get to stay the night. We won't be enjoying that perk for long though, it seems we might be going home on Saturday morning.

We finally heard from the Radiologist today about what he can do for Greyson, but all of the doctors involved think they need more time to hear back from other specialist across North America before they make a recommendation. This is not a run of the mill kind of newborn problem where they can just turn in a book and see the treatment. Many kids are either born with this or it develops over time but it seems that the size of Greyson's mass sets him apart. All the doctors involved want to make sure they have all the information possible before they come up with a plan.

So the short term plan is for us to use a car bed to transport him home, see his pediatrician next week sometime, maybe have a home health care visit to draw blood, and then come back for a clinic visit here at CMH on Monday the 24th when the group will come back together with a few more doctors and develop the long term plan.

We are very excited to get to stay the night with him tonight to practice being real parents. The nurses are only here if we need them and are pretty hands off. They helped with a bath tonight (which he loved and hated) and come in to check vitals a couple of times but not really anything else.

Again we love all the support from our family and friends and know that without all of you we would feel lost. Where I thought when we went home from here things would all be resolved I have learned that this is just the beginning of the journey. I will continue to update the page until we go home and then make updates as we learn more (which will not be every day).

Thanks again,
Brooke (Michael & Greyson)

P-Highlights

Trying to keep this site informative but still fun so tonight's update is brought to you by the letter P (remember Sesame Street???).
Physicians (rounds) - Michael and I showed up early enough to catch rounds this morning which was lots of fun. Dr. Khmour (Greyson's Dr.) came in first leading about 10 others. They not only had residents going over their cases but they also talked to the parents to share information or ask questions. This morning it was a large posse of YOUNG doctors that are all doing their pediatric rotations. I asked the nurse how many will become neonatologists and she said probably none that it takes a special kind of person to be that kind of doctor. They were very concerned about the consults that were coming in from different groups (still missing radiology consult), the EKG that was done this morning which came back clear, and the results from the brain scan and some blood work. They did ask a few questions about when the growth was found and so forth and complimented us on the breastfeeding progress. Dr. Khmour also decided that their is a bit of a concern with mobility of his neck and arm so they called for a PT consult before leaving. The dermatologists also made their own rounds later and measured the growth and determined that it hasn't changed recently (another good thing).

Pee - One of the interesting things in a NICU is that they keep track of everything including pee. Not just how often babies have wet diapers but also how heavy they are. Yes, there is a scale and they weigh them and then put them in the trash. Emily, Greyson's day nurse says that he is quite a pee-er putting out lots of it. The doctors have even lowered his intake of fluids through his central line since he is drinking so much breast milk.


Physical Therapy - The PT consult showed in the afternoon and found that Greyson has great range of motion in his neck and arm when positioned differently and when we make it move. She has some passive exercises for us to do with him and some extra wedges to put under his head so that he won't get a flat spot. We want to make sure when it is gone that he will be able to move around with no problems.

Projectile Poo - The funniest part of the day was when it was my turn to change a poopy diaper. So we (Michael, Emily, and I) were all standing around and Michael was taking pictures since it was going to be my first messy diaper. No sooner than I got to wiping Greyson down then he decided he wasn't quite done and proceeded to have some PP (see section title). Luckily I was quick and caught it all in the diaper but we all got to laughing and it hurts so bad to laugh due the the incision that I had to sit down and Emily had to finish up for me. No worries though...I will have many more to come I am sure.

All in all a wonderful day with the boy. He met our friend Bob at lunch time and said good-bye to Grandma Shelia and Papa Charlie for a few days. I have added some pictures from the day...enjoy.
Brooke

A Slow Start

Hoping today doesn't fly by as fast as yesterday but i think it already might be. Michaeel and I are still getting around to head up to see Greyson since we overslept :( Think we might b a little tired????
We are going to leave and be up to the hospital by 9am. I had called to leave a message with Emily, Greysons Nurse, so that she would know when I could feed and she called right back to let me know he has already had a couple of tests this morning and is hungry now. She just wanted to check to see if we could come earlier but not to worry if we needed more time :) She is great!

I plan to try and put up a post from the hospital from the family resource room if possible and maybe try to take an afternoon break in one of the napping rooms provided by Ronald McDonald House at the hospital. You all wouldn't believe all the support provided by these two facilities. For those of you that wonder who you could donate to or volunteer for - I think it would be hard not to put these two facilities at the top of my list. Michael says he agrees. Must go, time to clean up and get up there to see our guy.
Brooke

For those of you that know me best - you will get a kick out of this. I have figured out how to multitask and be more proficient by learning how to type an update with one hand while holding the pump bottles with the other. Gives me 15 more minutes ;-) (Sorry for those of you guys that talking about "breast stuff" gives you the willies)

LONG Monday

It was a mad dash to get discharged from St. Luke's this morning, then off to get prescriptions filled, stopped at the Longfellow Park Ronald McDonald House to check into (move into) our new home, and finally to get to Children's Mercy to see Greyson, feed him, and meet with doctors throughout the day. Sorry to everyone that I didn't get an update posted today but at almost 1am on Tuesday morning, I am just now getting my computer turned on and adding some new photos to the gallery, making an update, checking comments, and catching up on email. Needless to say this update may be short and sweet but I am sure you all understand.

We did get settled into the Ronald McDonald House and have some new contact information to share if you need to get a hold of us. Mail can be sent to 2502 Cherry, Kansas City, MO 64108 and we can be reached in our room at 816-234-3340 or you can leave a message for us. This is a beautiful facility but I am not sure how often we are going to be here besides the sleeping hours.

Greyson was, of course, awesome again today. The nurses are in love with him and a few have asked if they could request to be his primary care nurse when they are on duty. My mom and Charlie spent the morning with him since we weren't able to get there until after noon. They had a wonderful time and even talked to a couple of doctors as they did rounds.

Rachel came to visit today and seemed to be smitten. He entertained her as doctors were in and out throughout the day talking with Michael and I about options in dealing with the growth. Greyson attempted breastfeeding again today with more success. The growth does cause a bit of a challenge so we are also feeding him with a bottle. Michael got to feed him his first breast milk bottle today and as I hear it Greyson sucked it down and I left him with a few more for the night.

The day ended with a visit from Gramps and Grandma Beck and then Michael and I went back for some quite time after dinner. It is amazing how calm it is in the NICU after dark and I love watching and listening to all the nurses - they love these kids so much and I know they love our Greyson as well.

So far there is no word from the doctors about what exactly is going to be done with him. The doctors that have evaluated the situation and run different tests are all supposed to put their heads together towards middle to the end of the week to figure out what the best possible solution for Greyson will be. Michael and I will be brought in (hopefully by Friday) and will make the final decisions. It is hard waiting but know it is all about getting Greyson better and not rushing into a decision just because we want something/anything done now.

Better get to be....exhausted. Enjoy the pictures and there are more to come.
Brooke

End of Day, Mother's Day

Greyson still has a touch of Jaundice and is under the "bili-lights" and is now getting some nourishment through IV to help with his dehydration. He did get some formula this evening (about an ounce) and was moved up a size in diapers....think the newborn size was a bit small to start with ;) He has lost a bit of weight and is now below 10 pounds but not by much. Hope that breastfeeding will be on a regular basis now that I won't have to spend so much time traveling between hospitals but I will still have to rest and recover.
Not much more to update about changes in Greyson's health but he did have a full afternoon and evening of visitors.
We had the chance to introduce him to friends this afternoon with more to come in the days to follow. John, Don, and Jackie all got to see him but couldn't hold him :( due to the need to keep him under the lights. Not sure how many more days that will last but we hope not many. It isn't very fun to not be able to hold him and love on him when we go see him. Michael and I had head back to St. Luke's so I could rest a bit more and recover and it was VERY hard, but we left knowing he was in good hands with Gramps (my dad) and Grandma Beck and then later in the evening, Grandma Shelia and Papa Charlie. It is so nice that Children's Mercy will let grandparents in when we aren't around....that leaves more opportunities for lovin'.
So far it sounds like I am getting out tomorrow (I hope early) after Dr.s rounds when I should get my staples out and get a prescription for some pain pills. Then we will get set up in Ronald McDonald house (Longfellow House) and FINALLY have some uninterrupted time with Greyson and a chance to talk to some doctors.
I couldn't have asked for a better gift for Mother's Day. Counting my blessings for sure and thank you for all the wonderful messages. We hope that all the Mother's reading about our family had special days themselves ;)
Brooke

Afternoon Mother's Day

One visit down and another to go. We spent the morning at Children's Mercy with Greyson and had the chance to try and feed him again. He is not eating much these days but any time we get to hold him is great. Feeding and burping are challenging but we are getting it done with a little help from Kyla our nurse in the NICU. Check out the new picture in the Gallery of Michael burping him.

It seems that little Greyson was all about getting a tan today. He developed a little Jaundice over night and has been put under the big lights and is sporting a rock star set of shades. It is a slight case and is not expected to get worse. He is also a little dehydrated and is getting some extra fluids tonight.
We also talked to the plastic surgeon and have an appointment to talk with him further about what we might do tomorrow.

Leaving now to see him again. May update again or sometime tomorrow.
Brooke

Early Morning, Mother's Day

It's early and I can't sleep...think it is in anticipation of getting to go see Greyson again today. Hoping to make two longer visits around his feeding times and trying to see if he will be up for more nursing. Trying to coordinate some friends visits so that maybe they can come and see him as well. Can't wait to share him with everyone.
Dad and Beck were able to visit us last night and then headed over to see Greyson. They said he didn't fuss a bit and was, of course, the most beautiful baby. Wish they could hold him but with all the stuff he is hooked up to it is very hard....maybe next time. Michael went over and spent some time with him as well. He talked to the nurse about how his first formula feedings went and she said he did spit up a bit of it so they are going to talk to the Dr. about that and hope it doesn't continue. He has lost a bit of weight and is just under 10 lbs but still doing good.
Michael ended up staying here with me last night and we both got some much needed sleep. I don't think he has moved a bit since laying down in the recliner and is sleeping so hard he isn't even snoring (yeah).
Thinking about Mother's Day and my mothers that have been there for me for my whole life (or just parts).... think I might "get it" a little bit more now. I need to give them more than just an "I Love You" and a card today and thought about what better place than here to tell everyone how wonderful they are and how lucky I am to have them all. Thanks Mom, Diane, and Beck. They are all giving so much to make Greyson's entrance into the world easier and I know will give and do so much more to make him happy (and help me out as well).
It is so special to have this little guy in our lives and I still can't imagine how much he is going to change it all. I will send out an update or two later today. To all of our friends, enjoy your Mother's Day and your Mothers.

Saturday Update

Wow, it has been a long day. Michael stayed with Greyson last night at Children's Mercy while I recovered at St. Luke's and neither of us got much sleep so today has been a tiring one.

Greyson ended up having to have a blood transfusion late last night due to anemia. After blood tests this morning we are happy to say that that issue has been resolved for now. There were a few scans done as well and doctors are now up in the air about the type of growth it is. We are getting lots of speculation about what can be done to take care of him and how long it might take. Hopefully after the plastics doctors see him tomorrow, or maybe even Monday, we can get a better idea of a plan. Until all of the doctors meet we really don't know what is going to happen.

The awesome thing is that Greyson is doing great besides the growth. He is so cute, sweet, beautiful, and more. I was able to get a pass to go to Children's Mercy today - it felt so weird to be going to see our baby for just the 2nd time in 24 hours. Michael was the perfect dad who knew all the ins and outs of the NICU and what Greyson needs and wants. Greyson and I finally got to get to know each other and he even got to eat a bit. With the help he latched on and did great (thanks to my sister Tralaine for her guidance). We will have to supplement with formula for now but hopefully not for long.

Again, THANK YOU to everyone that has sent us the caring messages. They help us remember all the people who are rooting for us and have our backs. Michael, Greyson, and I are very lucky to have you all.

Other updates - I have been moved to Room 2437 at St. Luke's and will be discharged on Monday morning and we plan to go on to the Ronald McDonald house from there. If you would like to talk please call 816-932-2947, my iPhone is again having problems and I can't seem to get any texts or phone calls so please email or call the hospital for now. Hopefully we will get that fixed by Monday. Also, I added a couple more photos to the gallery.

Keep us in your thoughts. More updates to come tomorrow and days to follow.
Brooke (& Michael)

Greyson Transfer

So it's Brooke...sitting here in the hospital laid up while Greyson has been transferred to Children's Mercy. I am sure they are taking care of him but still I am sad that I am stuck here. It's comforting to know that his Dad is by his side.

It seems that what we thought was a Lymphangioma is really Hemangioma which means that the vascular system is involved. The doctors are assessing him now with some blood test and a MRI. Michael is keeping us posted.

If you need to contact us, our cell phones are not operating in here so call my room number 816-932-2949 and/or e-mail.

Thanks for all the messages and we will let you know more as we know more.
Brooke.

He Has a Name

Welcome Greyson Shane Higgins! He is going to Childrens Hospital
for further evaluation and Brooke is going to the mother/son room
at St. Lukes.

He's a Long Boy!

He has a dark head of hair, is 20 and a quarter inches and 10 lbs 6 ounces. He is the biggest boy in the room!

Grandpa Charlie G.

He is Here!

Our new baby boy is here and he is resting and so is mother
Brooke! They are both fine and doing well.

(Posted by Step-dad Charlie G)

Getting Ready

We are here at the hospital and all set up. Expecting C-Section to start at 10am. Family will post an update soon after with pictures to come later. We are so excited and can't wait to meet our new baby.
Brooke

Too Close for Comfort

They say close only counts in hand grenades and horseshoes but today was a bit to close for comfort. After the Amnio today I started having some pretty strong contractions that didn't seem to want to go away and was monitored by the doctors office and then sent up to labor and delivery to see what was going on. They had us (Allison and I) practically convinced that I would not be going home and would be having the baby early. Luckily by the time the doctor came in the contractions were not as bad and she went ahead and sent me home to relax and rest and be ready to go on Friday.
Whew, that was a little too close...all I could think was that poor Michael was going to have to pack for us since all I left the house with was an emergency hospital bag with some toiletries and some clothes. I am so happy to be home to pack properly and prepare in our own home.
The best part of the day was that we found out the baby's lungs are good and we are a go for Friday 10AM. Check back after that for an update and hopefully some pictures.
We owe Allison BIG - she kept me calm and helped communicate what was going on with Michael and others. She even drove me home. Thanks again to all of our family and friends for the support. This baby is sure loved ;)
Brooke (& Michael)

Carepages Info & More

Another week down and one to go. Time is really starting to fly now and the to-do list is of course growing. My last day of work is Monday and Michael will work until Thursday. The baby is doing well, moving around a lot, kicking and pushing, and letting us know he is getting bigger and running out of room.
We have been reading the messages some of you have left for us. Thanks for all the well wishes and kind words. Unfortunately, we can not respond to the messages, only read them. So if you would like us to respond you can email my Gmail account: higgins.brooke@gmail.com .
Also...you can set this up so that new updates are sent directly to your email. That way you won't have to log in over and over to see if have added anything new. I think you need to scroll to the bottom of the main page and it is below the "donations" section.
The plan now is to add another update after our doctor's appointment on Wednesday to confirm that we will deliver on Friday and then update again on Friday once he is here; we hope to include a picture as well. After that, we will update daily or as we get more news about the baby's progress.
Thanks again for all your support,
Brooke & Michael

Birthday is Set

Today we went to Kansas City to St. Luke's to check on the baby again and set our delivery date. The baby was VERY active during the ultrasound which is good and things looked good. The growth hasn't seemed to have gotten any bigger but he is. They think he might weigh around 7lb 14oz now - big boy. We met with Dr. Gibbs and set the tentative delivery date for Friday, May 7 as long as his lungs are ready. That is only 2 weeks from today - WOW, we will be parents sooner than we expected.
Brooke