Saturday, April 30, 2011

Easter

Lets just start by saying that I hope next year brings better more thought out holidays for our boys, because Christmas, Birthdays, Valentines, and now Easter have been nothing short of last minute. Trav and I were under the assumption that the Easter Bunny came after Church, but when Boston woke up in the morning and started looking everywhere we decided that we should go out and find him to come now. Trav took Boston on a walk to look for him and what do ya know when they came back he had come. Boston thought it was the coolest things ever! He brought him his own lawn mower which made for one very happy boy. No more using his baby walker to mow the lawn with Dad. I think next year we need to tell the Easter bunny to hide the eggs somewhere other than the back yard because it is way to easy for Boston he seriously found all the eggs within minutes.

Later that afternoon we went to my friend Stefanie's house for another egg hunt. Boston scored big time over there. I don't know why, but the Easter Bunny was way more generous over there. He scored like six new trains, money, and a whole lot of candy. He thought it was the greatest thing ever!


Enough about the Easter Bunny. I am so grateful for all that Easter really is about. I am grateful for all that my savior has done for me and my family. I am grateful to know that because of what he did I can live with my family forever! There is nothing I want more than that. These past five months have made me so much more grateful for the blessing of families and for life. We have so much to be grateful for.

Showered

I seriously have the best family and friends ever!!! When we found out Carter was going to need to get a trach we knew that we would need to get him quite a bit of stuff. My friends threw me a shower so we decided we would wait to get what we needed until after the shower. What did I end up buying?

If you only knew the list of things that we had to buy you would be shocked that this was all I came home with. I seriously got every single thing off of my registry besides lotion and binki's. I cried on the way to the shower, I cried at the shower quite a few times, and I cried after the shower. I can't believe how blessed we are. Heavenly Father has definitely taken care of us through all these amazing people. I have such a hard time letting people help me. I am very independent (more on this later) it can be a good and bad thing. I am learning how to let people serve me and gosh you would have thought I had learned it and accepted it by now. Carter has very specific needs when it comes to clothing, blankets, you name it. For instance everything needs to be button up so that t doesn't get in the way of his trach. It can't be zip up because then we can't access his feeding tube without keeping him open during his 30-60 minute feed. His blankets have to be very light weight and breathable and big enough to swaddle him so that during the night he doesn't mess with his trach and he can breath should they get in the way. Also all his clothing, blankets, bedding, really anything he touches has to be washed and changed out every 24 hours to prevent infection since his trach provides a direct opening to his lungs. We've got to keep those lungs healthy since we worked so hard to get them to were they are. Every single gift I received fit into that criteria. It was amazing! My Aunt put together the most incredible photo movie of Carter's journey. It brought back so many memories. There were pictures that brought back so many memories of hard days when I wondered if we were even going to be able to bring our little guy home. It is something I will love forever. (I will try to figure out how to put it on here)
Now here is a collage of a bunch of awkward pictures.

The biggest surprise of the night was this baby!!!!

Remember the stroller I said I needed to convince Travis was a need not a want, well this is it. Terrible picture, but it is absolutely the best stroller ever! It's the Phil and Teds Explorer. So a double stroller was a need not to cary my two boys, but to cary Carter and all his stuff. We would have ended up getting a double, but probably not one this nice at all. I was beyond shocked that I got it. Because of this stroller I feel like I don't have to be stuck inside all the time. Travis and I are definitely one's that like/need to get out so this is an adjustment for us and now we feel like we have a little more freedom.

Laura and Rene thank you so much everything was perfect!!! Thanks everyone who came.

Tuesday, April 26, 2011

Doctor's Appointments

Last week Carter had his first Doctor's appointment since leaving the NICU. It was to our pediatrician basically to fill him in on Carter and do a weight check, which is something we will do every other week.

This is my Mother in law and I with all Carter's loot for the appointment. Every single one of those items HAS to go with us whenever we leave the house. What is all the loot you ask? Let me tell ya. My Mother in law has his oxygen tank and the grey bag is his suctioning machine. I've got Carter, the regular diaper bag, and the back pack. In the back pack there are his heart and saturation monitors and a smaller back pack that has his feeding pump in it. We were laughing at our selves the whole time. There was a whole lot of "you go first, no you go first", "be careful my wire is pulling to tight" Let's just say it isn't that easy to get out of the house. For that reason along with the fact that we are NOT getting sick and don't want to end up back in the hospital we will stay undercover for a while. Not to mention I have to bring all his meds, food, and medical history with us. If nothing else it was a good laugh.

Cute boy stretched out on the doctors table. He weighed 9 lbs. 10 oz. he is 20 inches tall and his head circumference is 15 inches Leaving him in the -3 percentile for 4.5 months. Right on track size and developmentally for a one month old which is our goal. Wahoo!

Had to add this because he is just so dang cute. I am starting to see so much of Boston in him. It's crazy!

On Monday we had an appointment with the Pulminologist (lung doctor). He will be the one to make any changes as far as feeding, oxygen, and everything else goes. Basically the main Doctor we will follow up with. He was very pleased with Carter's progress since coming home. When we were getting ready to leave the Hospital he was on eight L of oxygen and is now down to .5 L. said that we are good to wean him on his oxygen at our will depending on his saturation levels. The news that made me so happy was that during the day at home we can take him off the trach humidifier (big blue or white tube you've seen in pictures) I was so happy. Not only does that tie us down to go no further than our family room due to the 5 feet cord, but it is also the heaviest and loudest machine we have!!! So now he is on a HME which is a little plug that goes on his trach (pictured above) it acts has his nose and keeps things moist so his throat and airway don't get dry. He also said that we can offer Carter a bottle 3 times a day for 20 minutes and let him take as much of his feed as he can. In the hospital they limited him to on 15 ml so that he didn't aspirate or throw up. It bugged me so bad that they put a limit on it because that was the purpose of the Nissen (long belly scar) was to keep him from throwing up. So yeah for more good news. He will be taking all his feeds from a bottle before we know it. We go back in a month.

Today we went to the pediatric opthamologist. Carter had stage two retinalopothy and we were so happy to find out that it has completely healed on it's own no eye surgery in our future. He was so confident in Carter's progress that we don't have to go back ever again. Unless we see something obviously.

Next week we go to the ENT, Pediatric surgeon, and pediatrician. So I guess we won't totally be home bound, just visits to the doctors. Which we happen to have at least one a week for the next couple months. Getting out got a whole lot easier I will tell you why later.

The good thing about most of Carter's appointments is that they are pediatric specialist so they have very fun offices, which makes Boston a big fan. He was so excited to go to the appointment today.

Poor Grandpa


Last week Trav's Mom came in town to help out with Carter coming home. On Wednesday afternoon we got a surprise knock on the door from Grandpa. I was so excited I hit him when I saw him. It was such a great surprise. Boston I think was the most happy that he came, because he pretty much never left his side. Poor Grandpa got summoned to eating his lunch on the hard floor, having a "party" in the closet, reading the same books over and over again, and we even put him to work helping out with trach care. He was such a good sport. We sure miss him and Grandma. Aren't we lucky?

Saturday, April 23, 2011

Roomin' In

Last weekend (Saturday, Sunday, & Monday) Trav and I had to room in at the hospital to make sure our home medical equipment worked and to make sure we were totally comfortable taking care of all Carter's needs. It started out lots of fun. We hadn't ever been with Carter during the night and really never longer than a 10 hour stretch of time and that only happened a couple times. I don't think we put him down the entire weekend and were more than happy to hold his binki in his mouth all day for him. Like I said though it started out fun, but come Monday morning we were more than ready to be on our way home.

We were so lucky to have some of our favorite nurses and doctors for the last weekend. Seriously how cute is Dr. Santiago's baby face smile. He came to bid Carter farewell and we had such a good time watching him play with him. Cathy was our night nurse all weekend which was so fun. She made sure to stock us up on home medical equipment and diapers :). David was our RT and it broke my heart to see him say good bye to Carter he shed a couple tears. He really was so great with Carter. We were so happy to be able to get Amy for a day again it had been a long time and we love her. Clara was our day nurse she does home health care one day a week so she was so great helping us prepare to go home.

On Saturday night my mom was able to bring Boston down to meet Carter. Everyone who was there cried. He took off down the hall the second he saw them rolling Carter's bed towards us. I will never forget the look on both boys faces. They were completely mesmerized with each other. I was bawling I couldn't even believe that after 4 and a half months they were finally meeting. The way they were looking at each other made it very clear that this wasn't the first time they had met.

This will always be a favorite picture.

The three of us heading home. Don't mind the fact that we look beyond tired. We didn't get much sleep that weekend and still haven't for that matter.

Carter was totally bug eyed for a couple days. He couldn't get enough of all the new places and people. It was the cutest thing ever!

Monday, April 18, 2011

It doesn't get much better than this...


Meet the Wilson party of FOUR!!! We are so happy to be home all TOGETHER!!! We are now hoping to...

Not get too overwhelmed with Carter's equipment set up while crossing our fingers that we don't blow up our house with a power overage.

Figure out how to make his medications and treatments easier on us...

Organize and find a place for all his medical equipment. Seriously it's ridiculous how much there is. There are boxes that aren't even in this picture...

Make time with both of the boys and keep them both happy. Wish us luck on this one.

To be honest we are a little overwhelmed with everything. So I guess we are hoping it does get at least a little better than this. We are so happy to be together. Boston is pretty crazy about Carter. More on that later. I'm tired and seeing double so I am just going to focus on pumping instead of this blog. Good night.

Tuesday, April 12, 2011

Meet

Meet the absolutely amazing people that have been helping take care of my boys for the last four months. We are so blessed to know them and don't know what we would do without them.

Meet Susan:

She is Carter's Primary Nurse. She is absolutely amazing! The sweetest person in the whole world. Carter loves her. Anytime he hears her voice he opens his eyes to look for her. We are going to miss her so much! During this whole time she has been such a great support to us. She validates our concerns tells us when to worry and when not too. She doesn't sugar coat things and is very real. She was never afraid to tell us when Carter wasn't doing so well even though I know she hated to deliver bad news. She was just as excited as we were when he was having great days. She and I had our schedule down to a T. She knew my pumping schedule, what I wanted to do with Carter, and always reported cute or funny things that he did when we were not there. The thing I loved most about her is that she knew when to step back and let me take care of Carter. Being in the NICU is hard. You feel like your role as a mother is kinda taken away. In a sense it kinda is, but when she was there I always felt like I was the most important person for Carter's care. I tried to convince her to become our home nurse something about getting paid half as much and the fact that we would only use her for a couple months might have been the reason she couldn't. She will always be special to us and will be a part of Carter's life whether she likes it or not.

Meet Carter's RT Team:

There seriously isn't a person on the RT team that I don't like, but these are my favorite. Linsey is awesome. She always knew what Carter was capable of doing and wasn't afraid to tell the Doctors when she thought he could be pushed a little harder. She is a great teacher and man she loves Carter. She always told us that Carter won the cutest NICU baby award. What parent doesn't want to hear that. David is from Jersey and has a sweet accent. He was so great with Carter. I walked in so many times when he was giving Carter a treatment and he would be chatting away telling him stories and what not. I think Carter might be his favorite patient. If he isn't well David sure did a good job making us believe he was. Even if he wasn't assigned to Carter he was sure to drop by him room everyday to say hi. Andy well he is just awesome. His daughter was a micro preemie and because of that I think he has a special understanding of what this whole experience is like. He could always make me laugh and was great with Carter. The thing I will always remember about Regan is his voice. Pretty sure that's what a lot of people remember about him. It is very deep and I am pretty sure every baby in the NICU loved it at least the ones in Carter's pod. You can hear his laugh anywhere and he is sure to make a funny comment. The RT team really are such amazing people I am amazed at all they can do for these little guys.

Meet Amy:

She was one of Carter's primary nurses in the beginning before Carter and his crib mate decided to get all crazy and both decide to get trachs. She is so dang sweet. She always made Carter the cutest little scrapbook pages when he would hit his month mark. She was so good at making you forget about where you were. When I had conversations with her I would totally forget that I was in the NICU because she made us feel so comfortable. Even though we haven't had her in a while she is still one of our NICU hero's.

Meet Cathy:
Picture Coming

She is hands down the best night nurse the NICU has to offer. I love everything about this lady. She is a fantastic nurse! She loves Carter and he loves her. We have actually only had her for the past month since one of the twins went home, but have been close with her the whole time. She knows her stuff and such a breath of fresh air. She makes those late nights when we are dead tired so much fun. I honestly feel like I could talk to her for hours. She is so sweet with Carter and isn't afraid to pinch his cute cheeks and tell him how cute he is. She LOVES her babies!

Meet Dr. Santiago:

This man is amazing! He is a man of very few/little words. He never says much more than what has too be said. He always would give a basic report of Carter each day and was so great to answer our questions. The thing I love most about him is how much he loves those babies. Seriously when he would look at them his whole appearance would change. His eyes would get all squinty and he would just smile (one of the reasons I love this picture is you can see his love for Carter in his eyes). I am pretty sure he talked more to Carter than he did too us. He is a very patient man. He always always has the babies and parents best interest at heart. Something I will always remember is that when we were trying to decide about the trach he told us that if it were his kid he would give them another shot at CPAP. I know he told us that because he knew that as a parent that is what you would want to hear even though he knew he would eventually have to get a trach anyways. He was always sensitive to what we wanted to do, but was never afraid to say when something had to be done even if we didn't want it too. It takes a special man to do what he does and he does it well.

Meet Rene:
(Boston cuddled right up to her when I asked to take a picture no posing required he just loves her that much!)
If I died and Boston could choose who his mother was I am positive it would be Rene'. We refer to her at our house as a "godsend" really she is that amazing. Boston has spent every Friday with her and some Sundays since this whole thing began. I don't think she ever turned down any favor I asked of her. In fact she always replied by saying absolutely. She is the epitome of service. She cried when I cried on a hard day and she celebrated with me on the good days. She has been the lifeline to people when we weren't totally up to talk when things were shaky which was such a relief. Not only was it hard to hear bad news, but it was hard to deliver and she was great to pass the word on when it needed to be. She might possibly be Carter's #1 fan outside of the family. Boston is sure going to miss his "Rene' days".

Meet Uncle Ed and Aunt Xela:
Boston went to his "cousins house" on Mondays and Thursdays. Boy does he love his cousins! Ed was always so great to stop in and see Carter when he was working around the hospital. Next to Trav, my Mom, and I, Ed is the only other person that saw him consistently. He also brought me milkshakes while on bed rest huge brother in law points earned there. Xela definitely got to see the worst of Boston and she was so very patient with him and always wanted him back. She put up with him during his "I hate that my parents leave me everyday to go to the hospital" stage. It wasn't pretty. Since being at her house he does better I use that word lightly because he still has a long ways to go, but definitely does better staying at the table, and staying in timeout. We feel so blessed to have family that was close to help and they have been awesome.


Meet Uncle B and Aunt Emily:

They made many weekend/day trips up to help us out with Boston or just to give us a change of pace. Boston absolutely loved playing with his cousins and him and Ellie formed a pretty dang cute little bond. It was always so nice to not have to drag Boston somewhere else for a couple days. They were always more than generous and left us with an overflowing pantry and bulging fridge. When they were going through a tough trial of their own the first thing they did was offer to serve us. I still remember when I was on bed rest and Emily got a couple things at the store for me one being a air freshener. I totally broke down in tears because I hated the smell (still do) of the anti-pardom part of the hospital. She is always so great to think of things that I don't.

Meet Grandma D.
I know I have said it a million times, but I will say it again. There is no way we could have survived this without her. She was always at our disposal day and night. She did everything she could to lighten our load which was a lot. She always knew when to tell me things will get better and when to just hug me and say nothing at all. Mom's are the best and mine is no exception. Boston loves his Grandma D. and she is pretty crazy about him. I don't think I will ever be able to repay her for all she has done for us, but I sure hope she knows how much we appreciate it and how much we love her. My Mom is so selfless and so willing to serve us. I store my cleaning supplies under my sink and lets just say that she has been the one opening that cupboard the last four months. She can whip out laundry and ironing like its nobodies business. I don't know how she has survived these last four months working two jobs and helping us, but she did. It takes one amazing women to do all she does.

Meet Grandma:
I am the luckiest in the in law department. Seriously mine are awesome. I have always felt so comfortable with them and felt so loved. My Mother in law has come out four times since Carter was born and is coming again on Saturday. Seriously who does that? When she is here we have laundry done, meals cooked, a happy boy, and a whole lot less stress. I know it absolutely kills her to be so far away, but she definitely makes her time here count for the time she isn't. She would do anything for her kids and grandkids and we are all so lucky to have her as a Mom. I can't wait for her to be able to munch on Carter. No Grandma should have to wait four months to hold their Grandson and she has. Bobo and Carter are so lucky!

I could go on forever and say Meet Amy who always says the things I need to hear, or who is an absolutely amazing cook, or who shows up to give me a hug while I cry and completely understands what we are going through. Meet Jamie one of the best friends you could have. Who doesn't give up on you when your social life is pretty much non existent, or who calls just to say hi and I miss you, or demands that she is bringing you dinner on such and such day. Meet Danielle who has left something on our doorstep what feels like every couple days. Boston seriously thinks anything on our door step flyers for window cleaning included is from "Jack's Mom". I could always count on a text saying wahoo for a good day or praying for us on a bad day. Meet our ward who has been absolutely flawless. Every need we have had has been meet. We have had meals from people a couple times a week brought to our house even if they hadn't signed up to bring one.

I think you get my point. WE ARE SO BLESSED!!! If I have learned one thing from this it is that I will be a better person. I will serve more. I will serve when I see the opportunity not only when I have been asked, because I know that it is Heavenly Fathers way of blessing individuals. It was through all these people that our Heavenly Father gave us the strength and endurance to keep going when we thought we couldn't do it for one more day. Thank you for all you have done for us. We love you all!

Monday, April 11, 2011

Check

Called the fire department to let them know Carter's needs in case of emergency - Check
Contacted the electrical company to notify them that Carter will have medical equipment that requires us to always have power incase of power outages - Check
Contacted Medical equipment delivery services and gave them a list of all supplies we will need - Check
Contacted home nursing agency to let them know discharge date and check on hour coverage - Check
Talked with case manager at the hospital to make sure our home nursing is covered so we don't go completely broke -Check
Cleaned my house for Carter to come home - Uncheck lets be honest it wouldn't stay completely clean for a week, but my Mom and I have started the nitty gritty

All of these things are a big reminder that Carter coming home is going to be a crazy event. We are beyond excited even though I don't think we know exactly what we are in for. We know for sure it will be absolutely amazing to have him home. We are beyond blessed to have our little miracle boy. Wish us luck.

4 months and coming home


Cant believe he is 4 months old today!!! Seriously December seems like such a long time ago. Over the last week Carter has made huge improvements. When he tired out on trach collar last week they started him doing 6 hours on trach collar 2 hours on CPAP vent for him to rest and recover. They did that for two days then went to 10 on collar 2 on vent and then 11 on collar and 1 on vent. Then on Sunday he got switched to full time trach collar. He is doing so great. His gas this morning was the best that it has been since surgery so we were very happy to see that. His Doctors were also. So happy in fact that they are sending us home on MONDAY!!! I can't even begin to fathom what it will be like. I can't wait for Boston to meet Carter. He seriously talks about him all day. Speaking of Boston he was telling me the other day that Carter will say..... to him I don't remember what it was, but I told him that Carter has a owie in his neck and he can't make any noise or cry or talk. He got very sad and said, "but how will he talk to me" I just told him that we will figure it out and that we can watch his face to see if he is happy or sad. A couple minutes later he came to me all excited and said "I have an idea I can teach Carter my Baby Signing times things" he then decided he needed to watch signing times to practice. Probably the cutest thing ever!

Anyways happy 4 months little man you are absolutely amazing and we can't wait for you to come home!

Boston's "1st" Soccer Game


On Saturday Boston played in his first game. His first game was actually last Saturday, but he wanted nothing to do with it. He actually surprised us and was more into it than we thought he would be based on how he was the last game. I don't even know the score but I am pretty sure it was 20-0. The other team had one little kid that was amazing. He totally knew what to do and made almost every goal. I don't think any of the kids really noticed that they lost which was good. He had so much fun playing and that was the best part of it all.

Tuesday, April 5, 2011

Today

Holy smokes I am exhausted!!! Today was a jam packed information overload!

Let's start with the best news. Carter is on trach collar! Goodbye vent we will not miss you. Can't tell you how good it felt to go in his room and see his vent showing nothing but a black screen. They switched him over this morning and he doesn't seem to notice a difference at all. He is still satting great and behaving like his normal self. Praying for a good blood gas in the morning So so happy!

*update: called this morning and his gas was good, but he creeped up on his oxygen during the night so they are going to put him back on the vent to rest for a couple hours. I have no idea if this changes any plans. I hope not. I guess the roller coaster continues.

Trav and I went to our CPR class today. Call us immature, but we were doing everything we could during the class to hold back our laughs. Don't worry we know exactly what to do if Carter ever needs it. Every time we would look at each other during our role play we would die. I don't know if it is a good or bad thing that we can make situations like this fun. I guess we have just learned that we have to if we are going to make it through these crazy days.

Right after CPR I met with the home health agency about what all would go into Carter's care at home. It was rough. We definitely are not coming home in a way that I had hoped and envisioned during all this. Our house will literally turn into a mini hospital. She was talking about how we need to keep everything as clean as possible. She mentioned things like not leaving food out so that our counter surfaces don't get any sort of germs or growth. Just a bunch of random things that will definitely require a lot of work. Also Dr. Santiago said today that he is planning on sending Carter home on all his medicine that he is currently on which means we have a lot more training to be able to mix them and what not and how to do the proper treatments. We will be busy. Probably the best part about the meeting was when she said she didn't think that we would qualify for 24/7 care because Carter is not on the vent. Wahoo we will have some time for it to be just our family of four. I really like the sound of that.

Let's finish with some GREAT news. Dr. Santiago said today that we have less than two weeks!!!!!! Meaning we will most likely be bringing Carter home next weekend. I have so many mixed emotions about that. Obviously I am nervous about the fact that he won't have a doctor check him daily and order what he needs. At the same time I am excited to be the one making the calls for what he needs. I am sad to leave our nurses. Beside myself, Travis and my Mom they are who Carter knows. He reacts to their voices and they have not only taken great care of him they have fallen in love with him. I have a lot to do to get things ready for him to come home. Obviously I need to get our house gutted out, but I also need to get a lot of things for Carter. I need to get some of the basics diapers, wipes, lotion, shampoo, wash clothes, bottles, swaddle blankets you get the idea. I also am going to try and convince Travis that the stroller I want is a need not just a want. Wish me luck I don't think it will work. I might need to negotiate with my step dad to give me my Amazon gift cards that I usually get for birthdays and Christmas a little or a lot early this year. Ha we will see. I can't believe that my baby is coming home. I feel beyond blessed. I think back to the days when I was on bed rest and Doctors were telling me that he would only have a 50% chance of surviving. We are so lucky to have Carter. He has the sweetest spirit and we can feel the love of our Heavenly Father whenever we are with him. He is such a special little boy I am so blessed to be his Mommy.


- Posted using BlogPress from my iPad

Monday, April 4, 2011

Cheeks


It's no secret that Carter has some serious cheeks. Don't you just want to jump through the screen and munch on them. I do. This little man continues to rock it. Last Thrusday Dr. Perez turned his Pressure support (basically a little burst of air that boosts his own breaths) down to 5 from 7. On Friday they were going to take a blood gas (small sample of blood that tells how his body is handling the help it is receiving) and if it was good they were going to move him to "Trach Collar" (basically a high flow nasal canula just going through his trach). Well his gas came back not so great. It wasn't bad just not good enough. So they put his pressure support back up to 7. Fast forward to yesterday. Travis and I changed out his trach for the first time completely by ourselves. We did a pretty dang good job if I don't say so myself. Still kinda freaks us out, but I know we will get used to it. After we were talking to Dr. Santiago and asking him what he thought our chances of getting to trach collar were and if he thought we could skip Our Children's House. He said well lets get rid of his pressure support and see how he does. So he took his pressure support down from 7 to 0. Carter didn't seem to mind at all. Usaually with changes he seems to have a honeymoon period and then it settles in to how he really takes to it after a couple hours. So I called later in the evening and asked his nurse if he was still doing ok without the support. She said he still didn't seem to notice the change. Awesome!!! So today Dr. Santiago said that tomorrow morning we will switch Carter over to trach collar. Typically when babies have a trach they will do trach collar trials. At that time they will switch them over to trach collar for and hour or two each day. In Carter's case they are going to do a permanent switch. We are praying big time that he will be able to handle it. He really is doing so awesome we couldn't be happier with his progress.
(don't worry about the out of control hair of mine. Someday I will find time to get it cut again. Jamie don't comment that you haven't cut my hair in over 5 months. Ouch)

Another GREAT thing that happened today was that Carter got to take his first bottle!!!! We thought this day was still in the far away future. The best part of it all was that Carter did awesome!! He took 12ml's. His full feed is 65ml's so it might not seem like much, but it is awesome. We weren't sure if he would even be able to swallow so the fact that he did that with no chocking, gagging, coughing, and holding his sats was a miracle! Another thing that makes it such a huge deal for Carter is how hard he had to work to get that 12ml's. Since he has the vocal paralysis it is extremely hard for him to swallow especially with the amount of swelling he has in his airway. So to help him swallow they have to add a thickener to my breast milk which makes it the consistency of honey. OT told us to imagine sucking honey out of a bottle and how hard that we would. Pretty much that is what Carter did today. It has to be thick enough so he can sorta gulp it down. I don't know if I explained that well or not, but just believe me when I say it's a huge deal! He now gets to oral feed twice a day. Whatever he doesn't finish we will just give him through his tube.

Carter's face after his first swallow. His facial expressions were hilarious!

If you can't tell we are so proud of our little guy. He is shocking his Doctor's and Nurse's with his rapid progress. We know that his progress is a blessing from Heavenly Father and an answer to so many prayers. Thank you so much for all of your prayers we can't even begin to tell you how much we appreciate them.

*Tomorrow we meet with someone to discuss the home health care Carter will need. I don't want any to be honest. I feel like it's my turn now to take complete care of my little guy, but I know that I can't do it alone so we will see how it goes. They say that they try to initially set you up with as much as we can get most likely 24/7 and then we can weed out what we don't want/need. We will do whatever it takes to keep our boy healthy and happy as well as keeping ourselves from going wacko. Ideally I think I would like someone here two days a week so that I could use those days to get out and do our grocery shopping and activities with Boston.

Trach Collar, CPR class, and home health meeting all tomorrow. Busy day wish us luck.

Toy Story 3 on Ice

Last week we took Boston and his cousins to Toy Story 3 on ice. They loved the first half. The second had too much dialogue and Ken and Barbie and definitely didn't keep their attention. I'm sure the fact that we were the highest seat in arena had something to do with it also.

Of course Boston's favorite part was "the claw".

It was fun to take Boston out for one last hurrah before his little brother comes home. He loved being with his cousins, eating popcorn and candy, and staying out way past his bedtime. I was shocked when we left the place empty handed. I can't believe how much they charge for souvenir stuff. Crazy!! Anyways it was a good night and fun to change things up a little.