2009 edition of getting to know your family and Friends

1. What is your occupation right now? full time mommy and wife
2. What color are your socks right now? Not wearing socks
3. What are you listening to right now? jackson eating
4. What was the last thing that you ate? chicken sandwich
5. Can you drive a stick shift? nope

6. Last person you spoke to on the phone? Stacy
7. Do you like the person who sent this to you? sure do
8. How old are you today? 27

9. What is your favorite sport to watch on TV? I wont admit it to Jusitn but I am likeing college football.

10. What is your favorite drink? Dr. Pepper
11. Have you ever dyed your hair? a couple of times

12. Favorite food? indian

13. What is the last movie you watched? a dog named christmas
14. Favorite day of the year? 4th of July
15. How do you vent anger? grind my teeth and hide

16. What was your favorite toy as a child? My little ponies

17. What is your favorite season? when i was skinny it was summertime, now im more likely to say fall.

18. Cherries or Blueberries? CHERRIES

19. Do you want your friends to e-mail you back? If they want to

20. Who is the most likely to respond? humm, Jessica S.

21. Who is least likely to respond? Jessica R.

22. Living arrangements? My Justin and Jackson, 2 border collies and a fish.

23. When was the last time you cried? the other day watching A dog named Christmas

24. What is on the floor of your closet? shoes and purses

25. Who is the friend you have had the longest that you are sending to? Pat S.

26. What did you do last night? met our neighbors

27. What are you most afraid of? loosing my boys for any reason.

28. Plain, cheese, or spicy hamburgers? spicy

29. Favorite dog breed? Border Collies

30. Favorite day of the week? Saturday

31. How many states have you lived in? 3

32. Diamonds or pearls? diamonds.

33. What is your favorite flower? hybiscus

Sweet Jackson

Justin and Bone Marrow

Good Morning. its December 1st,2009. I cant believe it. This time last year we were getting ready to move back to states for cheery ole England. There are times I miss that country. But I am glad to be back in America. I am so thankfuly for the medical care that we recieve here compared to what we recieved in the UK.
Justin had a medical appointment this morning for blood work. He has been match with a man in the DC area for Bone Marrow. This man has some sort of cancer and so far Justin has shown to be one of the best matches to donate bone marrow to this man to help him overcome his illness. If all goes well, after today's labs Justin will be flown up to Walter Reed for more testing. If that still shows that Justin is the best match all 3 of us will be flown back up to Walter Reed so Justin can start a week long process of donating bone marrow to this man that is only in his 50's.

RSV Season

I took Jackson in to the doctor today to get a wieght and find out about RSV season. Jackson weighed 13 pounds 1 ounce and is 24 and 3/4 inches tall. He got his first set of shots to help protect him against RSV. He has to go every month untill April to have them done.
I am feeling more yucky as the day goes on. I think I just have a horrible head cold. My ears are even starting to hurt. So I told Lindsay I dont think I will be able to make it to cheer practice tonight.

Fall Time

It is finally Fall in southern Arizona. To say good-bye to summer we visited family in Southern California. We had a great time. The visit was very needed. We headed out there after a visit to the Neurosurgeon in Phoenix. The Neurosurgeon gave us great news. There had been no change in Jackson's head so there was no reason to operate at that time. He said we didn't have to see him again until January. So with such great news we left his office and headed out to San Diego to see family. We visited the ocean, Wild Animal Park and Seaport Village. Ate some great food and had wonderful fellowship with my Aunt and Uncle.
Things are going to be pretty routine around here for a while.Well, Maybe. Justin had a new class start this week. We are getting ready to move into a new home the first part of November. Then the holidays will be here. And then before we know we will be celebrating Jackson's first birthday. WOW.

slowly..

THings are slowly slowly starting to slow down for us here. The doctor appointments are getting less. Next week we only have 2!!
Today we met with the early intervention program. I am excited about what they have to ofer Jackson. There are so many programs that are going to be so benificial to Jackson's well being.

I am sorry!

Of course it has been a while since I have updated the blog. Ever since Jackson was relaesed from the NICU the April 8th, our life has been a huge while wind of excitement.
Once Jackson was released from the NICU, my wonderful and amzing in-laws drove us to Arizona. Jackson's immune system is not nearly strong enough to be subjected to the airport. We took nearly 3 days to get here. We stopped in Rome Geargia, so Great Grandma Ann could meet Jackson. Then on to Dallas Texas to meet Great Grandma,Grandpa,Uncle and Aunt Jones, Nana was there and Aunt Carla! What a neat time that was! After about an 8-9 hour visit we jumped back in the car and drove on to Sierra Vista ARizona.
Only being here for less than 24 hours Jackson's doctor appointments began. He had his first eye appointment in TUscon(wich is about an hour and half away) to check his ROP. I have to go out there weekly to have that checked.
We met his peditrician the next day! He is great! He got us all of the referalls we need. Neaurosurgeon, Occupational and Physical theropy, and Urology.
Last Tuesday the 21st we drove up to Pheniox(a 3 hour drive) to see his Neuroseargeon. Dr.Shaffron is wonderful! At that vistit Dr.Shaffron saw a need to have Jackson's shunt resvised. THe exsiting one was not draining the left side of his head. Wich explained Jackson sleeping all the time and not holding donw his food and not gaining weight. Bless him, he was not feeling good at all!!
Today we met his PT and OT. They are both very informative and I am pleased that they will be the ones taking care of our Jackson in that area.
So far I am loving Arizona. The weather has been great! It has been so nice to have my dogs back in my life agian.
We are still unpacking things. With our busy schedule by the time I have a moment that is not planned, I am to tired to even think about unpaking.

So far this Monday has been so wonderful! Praise and Glory to our Savior Jesus Christ for allowing me to see his face in Jackson's life! I have always know the importance of fervently seeking God and his wisdom and strength in everyday life. I have never before seen God so closly as I have since Jackson has arrived. I ask myself everyday what it is that I am suppose to get from this or learn. I have come to the conculsion that there was not a lesson for me, but another opportunity to draw from what I have learned in the past. A chance to use what God has set me up for. Not a test, just another day to praise God for the knowledge and abilties that he has given to us as mankind. His creation. This experience has made me remember what I know of God and what He will do for those who love him.
Jackson has done amazing thing thus far in his life and with the continued blessings from God I pray that Jackson will continue to be a living example of the Love that God, Jesus Christ has for each one of us.

anxiously awaiting tomorrow

Tomorrow Jackson will have what I hope is his last Cranial Ultrasound in North Carolina. I hope to speak with Beth Jackson, she is in charge of all the paper for Jackson's transfer. I have got so many butterflies in my tummy waiting for the moment they tell us when we are flying to Arizona. I have got most everything together and ready for that!

growing big

After nearly a week now since Jackson had his shunt put in, he is doing FABULOUS!! He is continuing to grow and eat. "Pinky" (the big egg that was on his head) is pretty much all the way gone now. He will always continue to have little bump from the VAD. And untill he gets bigger you will continue to be able to see the shunt in his head. The doctors and other staff seem to be working fervently on getting Jackson transferred to the hospital in Tuscon. It needs to be quick! Jackson is getting so close to being released. Praise Jesus!!

Wednesday update

Jackson is still trying to get off the ventalator from the surguery. He just wont wake enough to start breathing on his own. The blisters he has developed are slowly getting better. The one under his left arm is still pretty nasty. He doesnt seem to be in much pain. We are getting much closer to being transported to Arizona. The hospital staff plan on calling AZ on Friday again, to make sure they are going to have room for Jackson's arrival next week.

Shunt

Jackson surgery yesterday was a success. THe operation took less than 30minutes once they got started. Now anytime in the future if Jackson has to have a MRI for any reason he will have to see the Neuro Surgeon to fix his shunt. It wont be an operation it will just be some adjustin with a magnet. SO far he is revoring pretty well from it all.

All right, I admit it. I am the absoulute worst at keeping up with this blog! So, here is just a quick update... Jackson is up to 4pounds 8 ounces. He is back to eating from the bottle and he LOVES it! Tomorrow he goes in the operating room for the shunt. Here is a website that will explain the basics of what is going on http://www.divideclassic.org/Documents/ShuntInfo.htm
As soon as he recovers from that they will be transferring Jackson to the hospital in Tuscon.
So far it has been an amazing ride watching God work in so many ways. I am so thankful that God has given man the ability to learn and create the way that we are able. Please pray for Dr. Hefner and his surgical team and they work on Jackson.

doing well

Each day our little Jackson does better and better. Last night he wieghed 3 pounds 11 ounces. He was moved into the "big boy" bed. Its a bassinet instead of the incubator/isolete. The nurses said he did good through the night with it, that he was able to stay warm.
Jackson had lots of visitors last night to. He great grandma Ann came and saw him long with great aunt linda and grandpa Jeff came up last night to. And of course we cant forget Grandma Lori visited.
Pastor Terry and his wife came up today for a quick hello. They had not seen Jackson since the first week he was born. It was like when Uncle Danny came for a visit on Tuesday, he had not seen Jackson either in a long time. They were able to see a huge change in him.
The doctor moved Jackson's 30mls of food to 2hours now instead of the 2 and half. He is doing so wonderful with that. His head doctor came by today to look at his bump. He said a bunch of things, all pretty much good. He explained some things that they are seeing and some different possibilities of what they could be. Jackson will have his next ultrasound sometime on Monday. I always look forward to hearing the results from those.

Progessive Unit

Last Wednesday Jackson was moved from the NICU to the Progressive Unit. He is doing so wonderful. He has no IV's in his tiny body at all. The doctors are trying to take him off of the continuous feeding. Instead of getting 30 mls of food over a 3 hours period they are giving it to him over a 2 1/2 hour period. Eventually he will receive that during a short 30 minute period. At least that is what I think is suppose to happen. They have taken his feeding tube from his mouth and it is going in through his nose now. They are preparing him to start trying the bottle. Jackson is weighing in at 3 pounds 8ounces. They last time they measured his length he was 15 and half inches long. His head circumference is starting to enlarge. The swelling around the VAD is getting bigger. I hope that the doctors decided soon to go ahead and tap into the VAD to drain the fluid that is built up in his tiny little head. Each week when they do his cranial ultrasound they are seeing that the blood clot that is causing the fluid not to drain properly is showing signs of resolving. Justin will be leaving North Carolina in a few more days to start his journey to Texas to pick up Jez and Bailey then on to Arizona. Hopefully, if everything goes well, Jackson will be transferred out to Tuscon shortly after the 15th of this month.

It's Monday. What a day. Today Justin started the Army recruiting. After today he knows that is not the job for him. Luckily he only has to do it for a few days. I spent the morning holding Jackson. It was a nice time together. His eyes are starting to lighten up. They are not so dilated anymore. Some of the doctor's that work with Doctor Hefner(his head doctor) came by to check on Jackson. They measured his head and said everything looked OK.
Jackson will go up to full feeds tonight. Which is 8 ccs of milk every hour. He is still on continuous feeds. As long as he continues to tolerate everything, they will begin to introduce the bottle to him sometime this week. More than likely they will have to move his feeding tube and have it going through his nose instead of directly through his mouth.
Last night when they weighted Jackson he weighed in at 3 pounds 3 ounces. Nearly up to 4 ounces. They also saw how tall he is now. He is now 15 and half inches long. He has grown 2 inches!
They did take Jackson off the triple mix last night. So that meant they were able to take the PCVC out of his leg. They did insert another IV in his arm to give him his antibiotics that he is only on for a few more days. After that he will only have to deal with his feeding tube. Hopefully that wont be around for to much longer.

Nothing big to report on Jackson. He is still growing and impressing us in new ways everyday. They have started adding formula to the breast milk. They need to add more calories and calcium to his diet. They want to him to really start growing now, that is a big focus right now. He was growing just fine before, but now that he has overcome the big obstacles that is the one thing to focus on now. We will all be so glad when he can get his feeding tube out. Most of all I know Jackson will be glad to have it out. Last night when we went in to say good night and pray over him, he had his feeding tube pulled out and was he was just chillin like the world was just perfect. The nurses were quick to put it back down his throat once I pointed it out. He has got to keep getting his food.
Justin finally changed his first Jackson diaper today. That was so much fun to watch. The nurses especially get a kick out of watching us.

weight gain

Jackson weighed in tonight at just over 2 pounds 14 ounces!!! He is just growing! Here is some more fun video of Jackson and some of his Valentine pictures. I hope you enjoy!

I know that it has been a few days since my last post. Justin and I have had some readjusting to do since we have moved into the hospitality house. Things are good though. Jackson has been doing wonderfully. He is a little sick right now. They had to put him back on the high flow nasal cannula. He has the same little infection that he had a few weeks ago. Today they gave Jackson a blood transfusion of 16 cc's to help oxygenate his blood.

They have started dressing him now. He is pretty much able to regulate his temperature so they have they have the temperature sticker off of him. If he was going to stay here and not be transported to AZ they would be taking his PCVC out. That is his main IV line. His Triple Mix goes in there. They would have him off his Triple mix and all other fluids if we were not transporting him. They have to keep all of that in for transportation; in case something happens.

Justin and I are good. Justin reports at the end of this week to the recruiters office to do so work for them for a few days. And I am just hanging out.
I do have a fun story about Jackson. Today when I was changing his poopey diaper, I wiped his bottom and GUSH, more poopey just shot out everywhere! All of his blanket. It was quite funny for us, especially the nurses watching us clean it up. I could tell Jackson loved every minute of it. He just kept his eyes wide open during all of the commotion and was so alert for a very long time afterward. He is so wonderful!

All by myself!

Jackson is breathing all by himself now!! No more High Flow Nasal Canula. He is breathing with absoulutly no help at all!! No extra oxygen flowing by his nose! Jackson is such a fighter! All we need to worry about now is getting him to digest his food properly. He is down to 3 cc's of breast milk at each feeding. He is having BM's and passing urine. Just not digesting the food. They may have to take his feeding tube and bypass his stomach and take it straight to his intestine. There is also a medicine that they can try that might help get the food to digest the way it is suppose to.

Jackson is still doing well from having the VAD implanted in his`scalp. The surgery site looks fantastic. I did find out that the stitches are not the dissolveable ones the we have all come to know and love. I am not sure when they will remove the stitches. This Monday the 9th they will do another cranial ultrasound to decide when to start using the VAD.
Since the surgery Jackson has started not digesting his all the way. No one is worried about it though. The plan is to keep pressing forward with his feedings. He pooping real well. Yesterday he had to great ones!
Justin made it back to North Caroline yesterday. We went straight to the hospital after picking him up at the airport. Nurse Leslie was expecting us so she had Jackson all ready to be held. Its so nice to be back together.
Jackson is doing so well. He will be in the progressive unit before we know it!

Eyes wide open

Today was a good day with Jackson. He is recovering well from his surgery yesterday. They are allready starting to wing him off the ventalator. He is such a strong fighter!!
After lunch time he really started waking up. He was holding his eyes open for long periods of time. It was so nice to hold his hand and just stare at each other today. I just love that little person so much!
Justin comes back on Saturday!!!

VAD

Yesterday the 4th of February, I received a phone call at 10:30am from John, one of Jackson Nurse Practitioners saying that results from Jackson's last Cranial Ultrasound showed a lot of fluid that needed to be taken care of immediately. So, yesterday afternoon they inserted the VAD in Jackson's little head. The procedure itself only took 15-20 minutes. Everything went pretty well. When the doctor was cutting the skin on his scalp it tore just a little bit. So that may make the healing process a bit more difficult.
The doctor was able to pull 23 cc's of fluid of of his brain. Amazing huh! Even with the swelling from the surgery, I could tell a difference! I am so happy that we have this technology.
They will do another cranial ultrasound this coming Monday to check the fluid. That will determine when they will begin using the VAD to draw fluid off.
It is looking like Justin will be here on Saturday!

2 pounds;3 ounces and some change

Jackson weighed in tonight just over 2 lbs 3 ounces. He is gaining that weight. I am so proud of him. We still have not gotten the results from the cranial ultrasound that they finally got to this morning. His nurse Leslie said that she saw a lot of fluid still and from her experience they will want to put the VAD in, and more than likely have it in by the end of week. I know it needs to be done, but I just wish Justin was here when they go to do it. I really need his shoulder right now.
Over all Jackson had another good day. Tonight after shift change when Mandy took over his care I just held his hand and we gazed at each other for good while. I just love it when Jackson just stares at me. Something funny, when Mandy changed his diaper, Jackson decided to pee out the side of his diaper and caused Mandy to have to change his blankets. Poor Jackson, he just cant help that those diapers are to big for his tiny body.
Justin went and looked at a house this afternoon. I am waiting patiently to see the pictures of it. Hopefully we will know something in the next day or so about when he will be comming back to NC. I really need him here!

Busy day in the NICU

Today was a very busy in the NICU. When Lori and I arrived shortly after lunch to see Jackson,I signed in, washed up and started back through to doors to Jackson's nursery to be told by a nurse that the nursery was closed. The reception desk did not inform me of this so I was a bit disappointed. I was all washed up and prepared to see Jackson just to be told I could not see him at that time. It was nearly 2 hours later when I finally got to see him.
Once I got back there there was so much commotion going on I was unable to hold Jackson. At shift change we went down stairs and had some dinner. After shift change Mandy was Jackson nurse tonight. I was able to hold Jackson for about an hour when all of a sudden the baby right across the way started to crash. It was pretty scary. This was a new baby who had a lot heart problems and with that had more tubes coming out of his tiny body than I thought possible. Once all of that excitement began, the nurses took Jackson from me and asked me to leave the nursery. Nearly an hour later I called and they were still trying to recover that baby. Justin called about an hour after that and no one answered the phone.
With all of the commotion, I left my camera in the rocking chair I was using and then with out thinking I left Jackson dirty blanket bag in the waiting room. I sure hope it gets turned in and I can get it back.
Jackson had a good day today. He is getting 5cc 's of milk each time they feed him. Very exciting! His LP was good today. They pulled 3cc's of fluid out and the color is lighting up. They never did get his cranial ultrasound done today like they were suppose to. Nurse Mandy was going to be looking into that tonight. Jackson was not the only baby who did not get there ultrasound done today that was suppose to.

Weight Gain!

Jackson is officially over the two pound mark. He is weighing 2 pounds 2 ounces! We are all so excited about that! Today I got to the hospital around 3pm. His temperature was a little low so I could not hold him until he warmed up. So around 4pm he had warmed up enough for me to hold. I held him for about an hour "kangaroo" style. I fall more and more in love with him each time I am with him.
The lumbar puncture was not successful today. It breaks my heart to pieces knowing that. He went through that pain for nothing. Other than that he had a pretty restful day. Nothing major. No d-stating.
Tomorrow is a big day. He will have his Cranial Ultrasound. The doctors should make the decision on the VAD.
I will also be putting together a Red Cross message to send to Justin's new command. They will need that to get him back here in North Carolina. I have also talked to Justin and my mother in law about the possibility of getting my dogs here from Texas. Even though there are already 6 dogs living here, I really need my girls. I miss my Baily girl so much. I really think having her with me would help with some of the pain I have.
Tuesday I go in for another blood draw to check my kidneys. Being as sick as I was has caused some more damage to my kidney's. My creatine is staying at a 1.1. So, we will see what the doctors have to say.
Please continue to pray for our strength, both physically and spiritually. Especially for Justin, he has to be strong for me and Jackson.
One thing I am excited about for tomorrow are the rings that Justin ordered us are in. He got us matching white gold bands with Jackson's birthday,initials and Heb: 13:5 engraved on the inside.
"Never will I leave you, never will I forsake you"

Jackson has had a pretty good past 2 days. Yesterday's LP John, one of the Nurse Practitioners was able to draw 3 cc's of fluid. Today he was only able to draw 2cc's. But, the fluid was clearer than it has been.
I was able to hold Jackson for 2 hours today. It was so wonderful!!! He feels so good up against me.
Justin had a great day yesterday when he signed into his new unit in AZ. Unlike his unit in England, this group is actually willing to work with him and the situation at hand. Everyone seems extremely understanding and sympathetic. Things looks very good with getting him back to North Carolina. We should know something soon!

Just called to check on Jackson. He has a nurse today that I don't think he has had before. Her name is Lee. Hearing her voice this morning I had a sense of comfort. Nurse Lee said he had a good night. He did d-stat a few times. He is at 30% oxygen.
We will leave around lunch to go visit our baby Jackson.
Justin got settled in in AZ last night OK. Lets continue to hope and pray that things go smoothly for him today and that the people in charge allow him to come back to NC soon!

Jackson had a much better day today than yesterday! His nurse Leslie took such good care of him. Jackson really likes her! I noticed him opening his eyes the most when he could hear her. It makes me feel so good knowing he has nurses that love him so much.
Jackson is off the bubble c-pap and just has the simple oxygen tube. He tolorates that much better. His lumbar puncture was not as succesful today as we would have liked. They were only able to pull 2cc's of fluid. There goal is 8cc's.
Tonight after shift change Jackson's aunt Anna got to spend about an hour with him. That was fun. She got to watch nurse Nicole do his "touch time". All together today was a pretty good day. I hope we have many more like them.

Wednesday Update

Wednesday, 29 January 2009 Jackson had a rough day. He had a a new that was pretty new to nursing and you could sense how nervous she was. Jackson could tell and made him have an aggravated day.
For most of the day the bubble C-pap machine was covering his eyes. I would be a bit frustrated to like Jackson was.
Once shift change happened last night and Nurse Mandy took over, things went so smoothly for Jackson. All of his stats stayed so nice. Mandy let me hold him for a hour and a half!! It was wonderful to hold my baby that long!
Now this morning, Thursday, Jackson has our other favorite nurse Leslie. We always feel so good when Leslie, Mandy, and Lauren have our Jackson. Especially Leslie. She has 22 years of experience in the NICU. I always feel so a peace when she has our boy.
Sometime this morning Jackson will have his cranial sonogram to check all the bleeding and swelling. I pray for a miracle and that there will be no signs of any problems!
Around 2pm today they will do Lumbar Puncture number 4. Yesterdays LP was not very successful. They were only able to get out 2 and half cc's. There goal was 8. We also found out yesterday that Jackson's infection is still in his body. Hopefully the antibiotics will fix everything soon.

New Changes

So it has been over a month since I made my last posting. So, let me fill you in on what has been going on. I left England 20 December 2008 to begin the move back to America being 20 weeks pregnant. I stayed in Texas with my parents for the holidays while I waited for Justin to arrive back in America.
On January 3rd 2009 I was driving back to my mom's house from a short shopping trip and began having horrible pains in my lower chest, just were the ribs begin to separate. I didn't want to be the over reactive mom and go to the hospital with every little thing, so I told myself that I was fine and just tried to deal with pain I was having.
I went all week with horrible pain that eventually went into my middle-upper back. I continued to suffer through the pain and restless nights.
After a week of pain, I finally got to drive to Dallas to pick up Justin from the airport.(by the way, that was the most miserable and uncomfortable drive I had ever made) Once I picked up Justin we immediately drove the 3 hours back to Fort Hood to see my step-dad off for his 3 rd tour in Iraq.
Now, the real adventure begins. Monday the 11Th of January, Justin and I boarded a plane to travel to North Carolina to visit with Justin's family. After delayed and cancelled flights we finally made it late in the evening. By the time we made to Justin's parents home, I was feeling the worse I had all week. I began noticing random bruises all over my body, one on the inside of my leg the size of a softball and as dark as night. After seeing that bruise I decided it was time to got the ER.
We arrive at the ER around 11:30pm were the took me directly back to labor and delivery. The had be give a urine sample that ended up being nothing but blood. The nurses were constantly in monitoring me and Jackson. I had swelled up so bad that the name bracelets they give you in the hospital were bearing into my skin.
After being told I had preeclampsia and toxemia it was decided to deliver our baby 15 weeks early. After delivery I ended up with HELLP syndrome. I had to have 2 blood transfusions and I was on a magnesium drip for a long time. After 4 days in the hospital I was released to finally go and meet my baby boy who had been transferred to a children's hospital in Charlotte North Carolina.
Jackson is now 15 days old and each day is a battle for him. He does pretty well with breathing. He does need some help off and on, but for the most part he does well.
Our biggest challenge we face with his life is all of the bleeding that he had in his brain and swelling. This could potentially cause life long problems. Only time will tell with that.
This past Monday, 26 January, they began lumbar punctures on his tiny body to help with the problems that have accrued in his brain. Also, dad had to leave to report to his new duty station in Arizona. We should know in the next week or so if he will be allowed to have permissive TDY to come back to North Carolina for a few months to be with baby Jackson and myself.