I love weeks like this!

So it has officially been a week since Karter Bear was released!! Here are some of my favorite photos from our week!

(Mind you these are all off of my phone!)

Our Sweet Note from Nurse Taylor on the 8th floor!

Karter dressed in her new outfit from Nana ready to go home!

Finally at home, silly cat missed his daddy too!

I could get use to having these two together!

Addi & Karter sleeping a little bit longer while momma got ready for

our daily doctor appointment!

Addi Bug being ever so cool, with her baby doll Gertrude

off to the side being punished...she is such a DIVA!

Sweet Karter after a long day in Dallas passed out!

I just love her big eyes!

~*Our First Week Home*~

Wow! It feels like coming home from the hospital the first time all over again! It has been amazing having everyone under one roof! Addison is still in LOVE with her sister! She does not let her out of her sight very often, but who could blame her? Karter Bear has been doing great at home! Her cardiologist said she still looked great at her appointment on Thursday. She had a chest x-ray and several labs done and all of them came back great! The only problem we have had this week is some weight loss. This is probably due in large part because she is just too tired to get up at night. They have decided to go ahead and let her sleep 6 hours at night and then get up for a feed. She seems to like this a lot more and does not seem as tired. I am just so thankful that this week was full, in most part, of good news. Karter did get to go to her PT & OT to have her work-up to see how far she is behind due in much part to being laid up in the hospital. While she did have PT & OT a the hospital there were several days where she was just too tired to participate. Physically she is behind and will need to catch up. She is still "floppy" meaning that her core neck muscles and her center core (abdominal & back) are lacking a lot of muscle tone. This is a trait of Downs & is one that she does posses. Due to her long stay at the hospital she is a little bit further behind then she would be had she not of had the long stay. THANKFULLY her physical therapist and occupational therapist are both confident that they can get her to where she needs to be in a good amount of time. I am so grateful that I was able to know a wonderful PT to turn to after Karter was born. If you ever need Physical Therapy, Occupational Therapy, or Speech Therapy for children I would highly suggest East Texas Children's Therapy center. They approach each child as if they were their own and really have a family feeling atmosphere! They even included Addison in our initial check-up giving her a snack and a coloring book so that she would also be occupied. Even though we had to see a doctor every day this week but Tuesday I would not have changed it for anything! Next week we go four times again but I still would much rather be home then back at the hospital!!!

So this week has been your typical mom week for me! It has been full of dirty diaper, bottle washing, bottle making, & juice cup finding! I absolutely loved every minute of it and I am just on cloud nine now that we are home. Addison has been such a doll this week! She is now fully obsessed with High School Musical in much part to "her boy" Zack Effron. She has the biggest crush on him! It is pretty cute now I just hope this boy craziness leaves her soon and does not stick around! She has also entertained me with her new found passion for dancing. She will randomly stop and say go crazy go crazy and start in on her dance sequence. She is full of laughter and joy and has been my saving grace. We have broken a few rules this week and have had late night pop corn snacks & coke but hey they are only this little once! So far we have prevented any tragic accidents involving Addison over helping with Karter this week. :)
Jeremy is most certainly glad to have all of his girls back under one roof! Now let's just see if it stays this way in a few more years when the hormones start flying around!!!

I am about to go rein in Hurricane Addison (as my Papaw would call her) for the night and do my usual double check that all of Karter's medicines were given to her tonight!

Much Love,

The McHams'

Praise the Lord we are HOME!

So this past Friday, July 23rd, 2010, exactly six weeks from our second flight to Children's Hospital Karter was released! Karter did have to come home on oxygen, breathing treatments, and lots of medications. I had to take a little quiz over all of the medications to make sure I knew what they were for, how to give them, when to give them, and how much. They also trained me on her oxygen tanks and on how to do her breathing treatments. Karter's lungs are still not fully healed but they were good enough for the doctors to go ahead and send her back home! The reason her lungs are having such a hard time healing is due to a small leak in the pulmonary valve. The leak is still trivial so it is not of much concern besides the fact that it is putting out a little too much fluid. This type of leak happened due to the complexity of her operation. It will be corrected at a later date, hopefully not until she needs her second surgery to replace her conduit. By the way I do not know if I have ever shared that Karter's conduit is actually a piece of a cow vein. This has lead to many debates between Jeremy and I on how it might be a little weird for her to eat red cow meat! :) Anyways they hope to have her off of her oxygen in 6 to 8 weeks, long enough to build back up her lungs so that they may shed that extra fluid from her leaky valve.

Karter is on a variety of medications in which she takes extremely well! The only one that she struggles with every now and then is her Tylenol which is not one that is very important unless she is in pain. The rest of them she takes like a champ!

Upon knowing our release date Jeremy came up to Dallas Thursday night so that he could help me lug back all of our belongings. Actually majority of it was stuff for Karter! It took us two cars to get her back to town! But hey what could you expect from a princess who just spent 6 weeks away from home? The nurses were very sad to see Karter go! They loved sneaking in to hold her and even kicking me out so that they could feed her and hold her. It was a bitter sweet day leaving the hospital. We meet so many incredible people while at Children's!

So when we were able to leave and head home we did not tell Addison. We all thought it best she did not know in case that we were not able to come back when we thought. We went straight over to her Nana & Pa's that Friday evening and as soon as I walked through the door with her "baby Karter" she burst into the biggest smile I have ever seen. She was elated to have her mommy home. Unfortunately it took a little while for her to realize that the baby I was carrying was indeed her sister. It has been almost 3 full weeks since she last saw her and since then Karter has done a lot of growing! Once she figured it out though she was instantly latched to her sister!

This weekend we spent doing a variety of things. Addison and I had a baby shower for our dear friend Heather that we went to help host. It turned out better than I could have ever hoped for leaving soon to be baby Cohen very spoiled! Then we came back home & cleaned the house from top to bottom so that Karter could have the most sterile environment we could create. Sunday we spent at the house doing absolutely nothing! It was perfect, to have my family all back under the same roof with no constraints, other than lugging around Karter's oxygen tube! I could not have asked for a better weekend! Today we started Karter's new regiment of doctor visits. Addison, Karter, the Tank, and I braved it out amongst the real world and went to their pediatrician. Karter received a clean bill of health, and other than Addison telling the doctor to leave her baby alone we had not complications. It was exciting to go to the doctor for once to get good news. I defiantly could get use to this! This week we will be attending Karter's PT and OT sessions, a cardiologist visit, and then a visit to get her shots! I would much rather be at home though and have to go to doctors appointments over living in the hospital!

I can not wait to share Karter's continued improvements with you! One of the most special things this week was Karter's first real bath! Due to her being able to spell if we got her too upset we were limiting Karter to little baths using a sponge and a little bucket up until we went to Dallas. While in Dallas we had to continue this regiment because of all of her monitors. However, all of that changed this past Sunday night when we were able to pull out Karter's little bath holder and try a "real" bath! Even if she got real upset it did not matter anymore because she would still be able to receive ox gen throughout her body! We sat her down in the tub with Addison and she LOVED it! Both of the girls were smiling and having a great time. Addi just loved being able to help wash her little sister. We did have to stop her from pouring water all over Karter's head but other than that she did fantastic! It was nice to be able to share Karter's first bath with Addi Grace.

We look forward to a great week full of stories to tell the world! We can not thank anyone enough for all of the prayers that went up for our precious baby girl. God does answer prayers and miracles do happen! With out your prayers and our Lord there is no telling where we would be today. Our faith created our strength for this whole ordeal. God is always good!

Praise the Lord we are HOME!

Love,

Tara McHam

Karter's View

~*From the Hospital bed of Karter McHam*~

So I was moved to the eighth floor on Monday. Mom and I were both excited!!! We thought this meant that we would finally be going home and I could loose all of my wires and tubes. Unfortunately the doctor came in yesterday with a different idea. The good news is I will be going home soon; however, I will have to have oxygen at home and possibly my feeding tube. Yes that is right my mom is having to learn how to put in and take out my feeding tube plus she is now learning all about oxygen. The reason I have to have oxygen at home is due to the complexity of my repair one of my valves has become leaky. This leaky valve is causing me to continue to produce extra fluid which would like to go to my lungs. Therefore my lungs are not really getting the time they need to heal on their own. So I will go home with my oxygen tank to give time to my lungs to be able to heal properly. I will be on oxygen for 6 to 8 weeks. The doctors feel that I will be able to then have healthy lungs that can guard off this extra production of fluid. In the future I will have this leak fixed, unfortunately we do not know exactly when. The doc said it all depended on me and the severity of the leak. They have four different stages for my repair and for this valve. These stages are trivial, moderate, mild, severe. Right now my valve and my repair are both trivial so they are not of great concern. I will regularly be monitored to determine my stage which will give my daddy and mommy more of an idea of my next surgery.

Although I try to pull out my oxygen cords on my face Nurse Valerie always makes sure that it goes right back in. I tried to tell my momma on her but she for some reason agreed that I needed this cannula in my nose. I can not wait to have it out!! My PT and OT (physical and occupational therapy) ladies have been coming in everyday to play with me. They bring in lots of neat toys for me to look out and reach. They even let me kick them with my legs!!! After they come and play I get really tired and need a nap but they all said they understand. Mom loves it when I nap because she gets to nap too! Apparently she is still catching up on her sleep from our first night on the eighth floor. We had a really busy night that night! Monday night I went to bed after my last feed at 12:00 pm, then at 2:00 am they came and woke me and mommy up to draw some blood, at 3:00 am I got to eat again, shortly after I kicked out my IV and had to get another one, at 4:00 am I had to go have a photo shoot ( I am still confused as to why they need to take a black and white photo of my insides...guess it is as pretty as me on the outside!), then we came back for a quick nap but I got hungry and ate again at 7:00 am. After eating at 7 the Doctor, shadowers, and nurses all came and did their rounds. They must love me because I got to see about 20 different people! Due to all of this commotion mom and I had to wait till way later that afternoon to get in a good nap. My mommy was starting to scare me with the black bags under her eyes but her nap did her some good and now she seems to be refreshed!

I hope to be able to go home Friday morning. I can not wait to see my sister again. I miss her, although I do not miss getting pulled across the floor or sharing my swing! Well guys I am going to go back to my nap time, I just wanted to give you all an update just like mommy does! :)

Hope you all enjoyed my news!

Love,

Karter Ashton-Faith McHam or as I like to be called Karter Bear!

P.S. I AM FEEDING FROM A BOTTLE!!!

The light keeps getting brighter!

So this morning when we walked into Karter's room her vapor therm machine was gone!!! She is now just on a normal nasal cannula but I am almost positive that will be going soon too! Her lungs are almost back to 100% function. She is really starting to look like herself again. The more and more wires and tubes she looses the better she must feel because it has been showing. Today they took her feeding tube out of her abdominal area and moved it into her stomach. So now her feeds are almost back to a normal schedule. If she does well with this transition then she will be back on the bottle in no time! I know she just can not wait, she has about sucked her pacifier to death. I just can not believe the turn around she made in just a few short days. From having one of her lungs all but collapsed to this I am now a firm believer in miracles. She would not be where she is today with the healing powers of our Lord. He has heard the prayers for our sweet angel and has truly shown us what an amazing God he is to those who seek & believe in him.

By my predictions we will be home sometime this next week. There is always the chance of another complication coming up, but if she keeps up the hard work then we will be back in Tyler in no time! I can not wait to have my family all back together again! I know Addison is ready to be able to see her sister when she wants to. Poor thing has not been able to see her two weeks.

On another note, Addison used the potty again today! This time she even used an adult potty instead of her potty chair. Jeremy and Addison were heading back to Tyler this afternoon when he stopped to get them both something to drink. When they got in there Addison promptly told him that she needed to go potty, so he took her like a good daddy! She is doing so well with potty training herself! I can not wait for her to be a "big" girl and wear those little panties all the time!! Of course Jeremy was super proud and found the nearest Wal-Mart and took her in to buy her a treat! I think she ended up with a DVD, a new toy, and something else. She is just a TAD bit spoiled by her daddy. I am so thankful that they have the relationship that they do. I can not wait for him to create another special bond with Miss Karter Bear.

All in all this weekend was filled with great news! The Lord most of known that I was getting to my breaking point. He truly will never give us more than we can handle. I hope that I am able to continue to turn it all over to his hands and allow him to carry around my burdens.

I do ask tonight that you say a small prayer for Miss Addison. She had an ant bite her the other day on her chest. Today when I looked at it, it had a green head to it. After she took a warm bath this morning I tried to pop it thinking that it would be just an easy head to get out. I was wrong. :( It has some type of boil under it and I tried squeezing as much as I could but never got the head. The last time this happened on her leg it had to be lanced at the hospital. She goes in tomorrow to the doctor so hopefully she will be able to better assist us with an solution. I just pray that it is not infected! Her Pa may also need some prayers in the morning for he is the one taking her into the office! God bless his soul!

Thank you all for your prayers and continuous support. Without you I do not know if this journey would have been as easy to take as it has been. I look forward to a hopefully speedy recovery & getting Miss Karter Bear home so that we can share more than hospital news!

Love,

Tara McHam

The potty chair sings!!

Yes, that is right Addison's potty chair finally sang a little jingle to her tonight after her first time to use it on her own!! We received the phone call just a few minutes ago from Nana! She said promptly after getting out of her bath tonight that Addison said she had to tee tee and went straight to her potty chair, lifted the seat, and sat down. A mere few seconds later the chair began it's jingle of joy! She finally went tee tee on her own! Nana did not even have to ask!! She may be stubborn and do things in her own time but when she does we are all just overjoyed with her accomplishments! While I HATE not being there for her first time I could never be more proud! She is coming up tomorrow and I can not wait to get her a treat for using the big girl potty! (Well that is her little princess potty!)

Just had to share!!

Love,

Tara McHam

Nine

So it has been NINE days since we were last able to hold precious Karter. Thankfully that all ended today when they finally placed her in my arms. It felt so good to hold her, much like the first time. I was just overwhelmed with emotions and a warm good feeling that flooded my body like a flash flood. It came on very fast and seemed to engulf me; however, unlike a flash flood that almost always passes by quickly this feeling lasted. I think it has me on cloud nine! Nothing is better than holding your baby. The time you get to hold them while they are still little is already, in my mind, limited and to take nine more of my precious days away was enough!

So Karter is doing wonderful, she did get to have her lines that connected to her heart removed today. Her lung x-ray from yesterday, June 15th, showed great improvements from the 14th. However, we have not made any progress today and have even made a slight step backwards on the x-ray comparison. They took her up to 15 liters to help relieve her lungs from the heavy work they were having to do while having a built up of fluid in them. The high amount of flow they gave her also was suppose to help her from having a collapsed lung. This flow did help in that it brought her lung back up. They took her down to 10 liters today even though she did not show much improvement from yesterday's scan. They did this in order to see if her little body could start to move out that fluid on it's on without the help of the vapor therm. Hopefully we will show some more improvements on our next morning x-ray!

Karter still has a feeding tube but it bypasses her stomach and just feeds into her abdominal area in order to make sure that the stomach does not put too much pressure on her lungs. They hope to move the tube back into her stomach by the first of next week and then begin feeding her through a bottle. We still have a little ways to go but we are defiantly able to see the light at the end of the tunnel. A few days ago they were worried about a potential infection but ALL of her tests have come back negative! Thank the LORD! They are still having to give her some platlets every few days but hope to be able to cut this out as soon as her lungs are good and healthy.

Today was also a very difficult day for me. I have been doing so good up to this point with everything. This morning our social worker came up to see us with some great news about a new disability program for families like us who do not qualify for any other government aide such as Medicaid and disability financial help. While it was great to hear that she would now probably be able to qualify due to her extensive stay in the hospital it was also a hard realization for me as to why she would be considered disabled. I do not think that Down Syndrome is a disability. The state on the other hand does. While I know I should be happy that we will be getting a little bit of help in providing this sweet girl with everything she needs it is also heart wrenching to me that people might look at her and think of her as disabled. To me she is nothing but normal. She is my sweet angel. She is going to go on and do great things in life. I hate how something so small can still knock me down like running into a brick wall. You would think that her other issues would effect me in a greater way but no it is the simple reminder of being classified as disabled, for having down syndrome, that turns my world upside down. While I know this will get better with time I just wish it still did not hit me so hard. I do remind myself though that she does not have to be defined by this so called "disability". She is simply beautiful baby Karter, my sweet little cuddle bear. I most certainly will not let her or our family be effected badly by this blessing, we will only rejoice in all of the good qualities that it will bring into our life. We will live and go on about life just as normally as we did with before with Addison.

Over the next few days I hope to have nothing but good news to relay to team "KAM" (her initials) as some of Terri's workers call themselves. We hope to not have any more complications on her road to recovery, and if we do I pray that we head them off far enough in advance that they become absolute! Even though I can not wait to get home I would much rather for Karter to take her sweet time and ensure a great recovery! God bless you all for your prayers, thoughts, and love! I am continuously blown away by every one's friendship. I would like to especially thank Austin Gipson for putting Karter at the top of his prayer list! What an awesome young man he is to already know the importance of prayer! Great job Megan!

Love,

The McHams'

Encouragement

Karter Bear

Finally a big girl bed!

I can not wait to hold this sweet thing!

Karter Bear...poor thing looks like she has been beaten up!

A sign Miss Libby made for Karter!

A sign made by Aunt Jordan and MiMi

Zoo Time With Addison Grace

Addison enjoying the slide at the Zoo playground!

"Now mommy you may need to buckle up!"

Daddy and Addi point at a giraffe below!

She was thirsty so she was not going to smile!

Beautiful girl sleeping away after a long day at the Zoo!

Karter's Day ~July 12

As of this morning Karter was not any better but she was also not any worse. Her lungs have not changed from yesterday, but her fever has disappeared. They started her on several new medications today. One for her stomach, one to make her potty, another lasik to make her pee out all this fluid, one to make her blood pressure come down, one to get her potassium level back up, & one to keep her calm. They have told me the names of each and every medicine but I would just being lying on here if I told you I remembered them! All I know is that she is on a lot more medication today then she was yesterday. They did not give her an aspirin today because they thought it might be interfering with her heart rhythm due to all of the other medications. However, she will start back up her normal dose of one aspirin a day tomorrow. She will take this for the rest of her life. Karter did wake-up today and while I am still not allowed to hold her (they could not pull the line out from her heart due to the inflammation) I did get to talk to her and see her smile again! She even took her pacifier for a little while today! Dad would be proud because she took the one he bought her! :) It was nice to see some life in her eyes without her being so agitated. Hopefully tomorrow they can go back down on her vapor therm (they came down to 8 this evening, so far so good) so that she can take a real bottle instead of getting all of her feeds through her feeding tube! Thank you guys for all of her prayers last night! I just know they worked for her to be doing so good today!

Steve

Well today I went and had a snack outside on the patio in hopes of seeing Steve. Sure enough he was there! I was so glad to see him for prior to going outside I had searched high and low for some seeds! This hospital is awfully big so it took me a few floors to find the right vending machine. While the sign on the outside says not to feed the birds, I went ahead and feed Steve. Jeremy did not see him as a bird but instead as a friend so technically I am not feeding a bird, I am just feeding Jeremy's friend Steve! Steve has started to touch my heart here lately. I think he knows when we come outside because he always flies right on in to us. Today Steve was cooing so we had a little talk about Miss Karter. I think he told me that he would watch her from outside her window. That way if she acted up while I was gone at night he could tap on the glass to alert the Nurses. I would not put it past Mr. Steve for he seems pretty domesticated to me, well that is for a Pigeon at least. I guess I need to start making more friends than just Steve but he is just so easy and such a great listener I think I might just continue to enjoy his company on my snack breaks! :)

Well I am going to call it a night and watch my little princess sleep! If I was magical I would give each one of you a BIG hug tonight for your prayers! I just know that these prayers are helping Karter with her strength and I could never thank all of you enough for this gift you have given us!

Love,

Tara McHam