Sunday, December 18, 2011

4 months

So I am a little behind on updates with the holiday season.  We had a wonderful Thanksgiving and Carson got to meet lots of his Louisiana cousins, great aunts and uncles, and he got to see his great grandma again.  I thank God for the distractions of Christmas parties, gift wrapping, as well as our 3 yr old social butterfly.  After going non-stop for a month or so today has hit us really hard.  We had a Christmas party for a few of our close friends and kids last night and while chaotic, it is always lots of fun.  This has been a great distraction for me, but now that it is over reality is hitting.  The closer we get to Christmas the closer we get to Carson's kidney surgery.  The first part of his two part surgery is scheduled for December 30th.  I can't explain the emotions and worries that surface as each surgery or procedure approaches.  Not to mention the ever nagging feeling that even after he has all his surgeries, he still will struggle in life with down syndrome.  There is also the struggle of what therapies does he really need?  Which ones can we afford?  What is best of Carson and our family?  I guess with any child, as a parent, you have to make choices and hope they are the right ones.  We feel this is even more of a stresser with Carson.  We just want what is best for him and sometimes the overwhelming feeling of doing everything right gets in the way with just enjoying our sweet baby.

Here are some 4 month updates of our little man.  He weighs a little over 13 lbs and is around 23 1/2 inches.  He is in the 50% for the trisomy 21 curve and 10-25% on the typical growth curves.  His development is around a 3-4 month old, which is awesome for Carson! :)  He is holding his head up well and we are working hard on rolling over intentionally.  He is now grasping for toys and really raising his legs up.  He is still a very happy and content baby.  Caron loves to sleep and eat.  He has the cutest laugh and when he smiles his eyes light up.  He gets PT around 2 times a week and just qualified for oral motor/speech therapy.  We are still trying to figure out what program we want to go with and how insurance works with all these therapies.  We are really loving OCH Baylor and the therapist there.

Our family wishes each and everyone of you a very blessed holiday season.  Please keep us in your prayers as the 30th approaches.  While we are beyond blessed to be able to save his kidney and have such wonderful doctors we are still scared to death.  No one wants to see their baby go through surgery. 

*** Thanks again to Diana Busch Photography for all our awesome photos****

Friday, November 18, 2011

Kidney Surgery #1

Thank you so much for all the thoughts and prayers today.  Carson did great during his procedure.  They determined the kidney is functioning and the blockage is where the ureter meets the bladder.  The muscles on the end of the ureter didn't form properly and the urine is backing up into the kidney.  We have two options to fix this.  One is a complicated surgery that can take 3-4 hours and they doctor did not recommend it because of the risk and having to keep Carson under that long with his heart.  The other surgery is a two part surgery.  First they do something called nephrostomy tube (  Basically the doctor will remove the part of the ureter that isn't working properly and attach a tube which will drain the urine until the ureter grows and the second surgery can be done in about 12-18 months to reattach it to the bladder.  They explained to us that the tube would just drain into his diaper.  We will schedule the first surgery soon.

To be completely honest I am very overwhelmed today.  I am very happy that the kidney is functioning and they can fix the blockage, but the whole idea of 2 more surgeries just kills me.  I feel like the down syndrome is enough to deal with on its on.  I had such a hard time seeing my baby go through this today and it was minor.  I keep thinking how am I going to make it through two more kidney surgeries and a heart one.  I can't tell you how happy I will be the day we are done with all Carson's surgeries and we can really focus on his development instead of his health.

We are so blessed to have such amazing, loving, supporting friends and family.  I could not do any of this with out you all.  Thank you, Thank you for all the prayers...we feel them.  Today as we were in the waiting room we felt an overwhelming support as we read all the people praying for us on facebook, and with prayer chains.

On  a separate note we starting doing Our Children's House Baylor in Allen for therapy and love it.  They are going to evaluate him for speech...yay!!   I really want him to have oral motor therapy since speech is something most children with downs struggle with the most.

Monday, November 7, 2011

3 month update

Carson is now 3 months old!  He weighs 12 lbs and is 23 1/2 inches.    He is a wonderful baby and rarely ever fusses except when he is hungry.  His smile can light up a room.  He has the most beautiful blue eyes with specks of white in them (this is a down's thing called Brushfield's spots).   Looking at him you would never know about his poor heart and kidney. I sometimes forget about all he is dealing with. Unfortunately the doctors appointments tend to remind me of the future surgeries, health issues, and delays. Carson is one of the most loved and prayed for little boys I know.  Seeing him with his big sister and that amazing smile he has keeps me going.

We celebrated his first Halloween.  Carson was a puppy and Kaylee was Raggedy-Ann.  They were so cute.  Kaylee's costume was an old family hand-me-down and I was so excited she wanted to wear it.  Pictures to come...

The PT came last Thursday.  Carson is doing pretty good with his neck strength.  He tends to favor one side so we are really working on that.  She is working with him pulling everything into midline.  He gets re-evaluated at 6 months so I am praying that he will get even more therapy then.  As he gets older it is hard to see other babies slowly doing things that Carson isn't quite there yet at.  I know we will struggle with this his whole life, and I want the best for him.  I also need to not compare him to others and be proud of his milestones, whenever they may come.  A lesson that is hard for all moms in general.

Today we had a cardiologist appointment, which are always hard on us.  It is the reminder that Carson does have to go through heart surgery and we are so not looking forward to it.  I try to be positive and thankful that medicine has come so far and that he has a longer chance at life because of this surgery, but I still get sad that he has to have it period.  I feel like he is already dealing with so much...why this to?  We did find out today that his PDA (a vessel) has re-opened which doesn't really change anything since he has the have heart surgery anyway.  There is a chance it could close again before surgery. Carson's VSD (the hole) is the same and it is doing well.  They are still looking at surgery around 1 year of age.

In the next two weeks we have several more appointments.  We have 2 evaluations with Baylor for PT and OT, PT with ECI, The Children's Down Clinic, and his kidney procedure.  We are hoping this procedure/biopsy with tell us exactly needs to be done with the kidney and we can finally have that surgery.  We also have the Buddy Walk on the 13th which I am excited about being a part of.  I would like to thank everyone for the donations, thoughts, and prayers for the Buddy Walk.

Please pray for our little man and our family as we get through these next two weeks of appointments.  They can really drain us.  Thanks to our families and friends for helping with Kaylee so we can go to them all.

To end on a happy note: I just sent my wonderful husband and sweet little girl on a much needed daddy-daughter date. Can't wait to hear all about it.  Kaylee was so excited to get her daddy all to her self for the night.

Monday, October 17, 2011

11 weeks old

We had an awesome weekend.  We finally got to go out of town for the weekend.  It was so great to see friends from both high school and college and to see all my family.  We went to Kingwood for our good friends surprise 30th birthday party and it was such an great reunion of old friends.  My uncle brought my grandma to Kingwood to meet Carson for the first time, which was another very special moment.  It was so great to not have to think of all the doctors and medical stuff and just get to enjoy the weekend with people that I love.

Today we went to the Pediatric GI doctor for the blood in Carson's stools.  He was wonderful if anyone is ever needing a GI doctor.  After listening to me explain what was going on and doing an exam he said it was one of two things, both minor.   YAY, for something final being minor.  One is that it still could be an allergy of some sort, but it would be really minor since he isn't really having any other major symptoms.  They really don't have anyway of knowing what it is and I could try a allergy free milk, but he doesn't really know if it will help and would rather him get the breast milk.  Since being off of dairy wasn't helping he said I could enjoy it again...YAY again.  Now he did say if he gets worse when I get back on it to get off of it again.  The Second thing that could be causing it had some big fancy name (as he put it) but it basically means large lymph nodes, small hole.  Babies have large lymph  nodes as their body develops it immune system and their intestines are really small so the bowel can rub up against them and cause the streaking of blood.  He said as long as the blood is random, doesn't get worse, and Carson seems fine we just keep doing what we are doing.  The Dr. believes that either scenario will be out grown around 6 months.  I really hope this is true.  Praise for good news today.  Ha, For now, I am going to ignore the fact that he still has blood in the stools on occasion and just be thankful that it isn't anything major.

Many of you have been asking about supporting the Buddy Walk in Carson's name.  One way to do it is to order something from and enter Buddy Walk as the Organization and a percentage will be donated to the Buddy Walk or you can donate online at  If any of you happen to be in the area we would love for you to join us for the walk on November 13. 

As always thanks for all the love and prayers.

Tuesday, October 11, 2011

Cardiologist, Pediatrician, and Urologist....OH MY!!

Excuse the lame title. It is my attempt to keep things upbeat.  I am having one of those days where I just wish it would all go away.  The health issues, the Downs (I always feel guilty saying this one, but I have to be honest.  One day I know it will be part of who he is and I will come to fully accept it, but I am not there yet), the doctors appointments, and the emotions that go with it all. I just want a healthy, happy baby that doesn't have to go through all of this.  Looking at Carson you would never know all the health issues he is dealing with.  He is the easiest, happiest, sweetest baby I know and it breaks my heart that he has to deal with all this.  I keep praying to God for understanding on why he has to deal with so much.  I also know things could be worse and try to count my blessings where we can find them.  He is such a joy and I know he will not only continue to bless us but so many others.

Last week we saw the cardiologist.  Things seems to be going pretty good on that end.  They didn't do another echo, but after listening to the heart everything sounds good.  We are thinking heart surgery closer to 1 year of age. 

We also saw the pediatrician for Carson's 2 month check up.  He has doubled his weight in two months!!  We no longer have to fortify his milk.  He is still having blood in his stools even with me off of dairy so we have to go see a GI doctor next Monday.  Please pray this is something minor.  The doctors do not seem very worried since he seems fine otherwise, but Mom is.  He weighs 10lbs and is 21.3 inches.  He is in the 50% percentile for weight and 25% for height on the trisomy 21 chart.  He is on the 10-25% for weight and 10% for height on the typical chart.  Trisomy 21 kiddos have their own growth chart so the doctor charts him on both charts.

Today we saw the urologist and come away feeling frustrated. Mainly because we were hoping for a definite answer to what was going to be done for the kidney and instead we found out they don't really know much more than we started with. We know the kidney is blocked, but we don't know where and we know it is functioning, but we aren't sure how much. The scan said 42% but the doctor seems to think it is closer to 20-25%. Sooo we have to do more testing. They are wanting to do a retrograde pylogram on him and a biopsy of some sort on the kidney. The question is whether to do the procedure and surgery together or do the procedure, digest the results, and than do the surgery at another time.

Carson is really such a huge blessing in our lives. He is such a special part of our family. His big sister Kaylee just adores him and we love seeing the two of them together. Carson has started smiling and it is sooo awesome to start to see his little personality develop.

Friday, September 30, 2011

A little someting positive to take us into the weekend.

Yesterday I officially became the crazy mom who showed up at the doctors office with no appointment and a dirty diaper.  Carson had more blood in his stools yesterday and I had a call into the doctor, but decided just to stop by after dropping Kaylee off at preschool.  They made me feel less crazy by telling me I made the right decision.  The doctor took Carson's diaper to run some test and put me back off of dairy to see if it is the protein allergy.  As hard as it is for me to go off of dairy, this would be an easy fix.  It is also hard to think of all the milk in the freezer, but I was told not to get rid of anything yet.  We don't know for sure what is causing the bleeding, but this is a first step and we can always revisit dairy slowly as he gets older. Prayers for whatever is causing the bleeding to heal and for Carson to have some relief.

Sooo excited to get good news today.  I finally heard back from the urologist who reviewed the film from the Lasix Renal Scan.  He said they got enough information from it for us to not have to re-do it.  Praise God!!!  The urologist also said he saw in the films that the kidney IS functioning (another praise :) ), but it is very blocked. We will go on the 11th to review the films with the doctor and discuss surgery options.  This sounds crazy and may be a stretch, but the blood in Carson's stool, while very scary, has been a small blessing in disguise.  Had we not found the blood in his stools on Tuesday we would have re-done the scan for nothing.  I feel God working and it gives me a little something positive to take into the weekend. 

Wednesday, September 28, 2011


Well I waited to write this in hopes to have more of a positive attitude about everything.  This week has been really hard on all of us.  Especially poor Carson though.  On Monday we had the scan done on Carson.  First they put in an IV and had to hydrate him for an hour.  He was such a trooper and didn't even cry when the put in the IV.  It took me everything not to cry for him.  He was more frustrated with his arm being taped down.  After an hour they put in his catheter.  Which was a little more traumatic for all of us. Then the poor baby has to lay still for an hour.  Thank God he fell asleep.  This scan ended up taken pretty much the whole day by the time it was all said and done with.

On my way to pick up Kaylee from a friend's house, I received a call from the hospital that we needed to come the next day to re-do the scan because they needed to confirm something they were seeing.  Needless to say I was scared to death.  I had to call the urologist to cancel my Tuesday morning follow up appointment and was given some relief from the nurse who was puzzled why they would make us come back and told me if it was something serious they would have contacted the doctor.  After Charles spoke with someone else we realized this was something done wrong on the testing not with Carson.  Thank God, but still very upset to have to redo this procedure.

The next day we went about our day planning to get to the hospital around 2pm to redo the scan.  While changing Carson's diaper I noticed some blood in his diaper.  This concerned me and I wanted to make sure it wasn't something serious.  The scan got delayed and the pediatrician wanted to see him first thing Wednesday morning.  They were concerned it may be a possible protein intolerance. I was told to stay off of dairy for the rest of the day (ha, anyone who knows me knows how hard this was for me).  I was also so upset at the thought of him not being about to get the tons of breast milk I have been pumping and saving.  They did not think the blood in the stool was related to the scan. 

Today we went to the pediatrician to see what was causing the bleeding.  Needless to say we don't really know why it happened but there was no blood today and we are having to watch him carefully for any other signs and make sure there is no more blood.  By the time we got done with the pediatrician I was done with doctors for the day.  We still need to reschedule the scan but I just didn't have it in me to call today.  I am hoping to get some more answers about the scan and then schedule to re-do it as soon as I am absolutely sure we have to.  I really don't want to have to put him through all that again.

Prayers please for all of us.  It has been a hard week.  I am trying to give it all to God and I feel like more keeps piling on.  I feel like my check list is growing and nothing is getting checked off.  I just pray everyday for us to get through all of Carson's health issues.  I hate that he has to go through so much.  I will be so happy the day he gets a clean bill of health.

Sunday, September 25, 2011

Latest Updates

Last Thursday ECI (Early Childhood Intervention) came out to evaluate Carson.  It was great to feel like we are getting the ball moving with early intervention.  Because of Carson's prematurity they were looking at him like he was a week old, instead of almost 7.  He only qualified for PT for 30 mins every other week.  This is both a good and bad thing.  You want him to get all the services possible, but it is great that he does not currently need them.  He will be reevaluated in 6 months.

On Tuesday we had our first PT session she worked with Carson on holding his head up, turning his head, and flexed posture.

This weekend was a fun packed one for us.  We had 2 parties on Friday one for Kaylee and one for Mommy.  Then Saturday we had dentist appointments then we went to the arboretum for a picnic lunch.  We enjoyed all the beautiful fall decorations and pumpkins.  Kaylee loved the Cinderella theme.  That night we had some friends over for dinner.  They were sweet enough to bring dinner to us.  We were supposed to get together the day before I went into labor and I wasn't feeling good.  Ha, little did we know Carson would be born the next day.  Today we went to church and a family picnic with the Down's group we are part of.  It is always good to be around families that get what you are going through. 

Tomorrow we have a Renal Scan MAG-3 W Lasix Washout.  The Lasix Renal Scan is a series of pictures that will record how much the kidneys function and how they are formed.  It is a nuclear medicine test.  The test will basically let us know why Carson has the hydronephrosis (enlarged) left kidney.  The results will let us know what surgery Carson will undergo.  Prayers please.  We will go on Tuesday to talk to the urologist about the results.  The reality of the surgeries to come are starting to set in.  Please pray for strength for all of us and a miracle would be nice too ;).

Tuesday, September 13, 2011

Playing with adding pictures

6 weeks old

Carson is now 6 weeks old and continues to be doing well.  This little man is such a fighter.  He is really starting to have longer wake periods and is starting to hold his head up some.  He is not a fan of tummy time...but we work him hard.  He is filling out and and is now completely out of his preemie clothes. 

We had a fun time on Saturday at the hospital's NICU reunion. It was neat to see several of the nurses that took care of Carson while he was in there.  Kaylee had a blast playing games, getting her face painted, and riding the train.  Carson also had a great time as he slept through the whole thing.

Carson has his evaluation with ECI on Thursday and his kidney imagery procedure on the 26th.  We are anxiously awaiting the results of both of these appointments.  Prayers please for wisdom to do whatever we need to for Carson's health and development.

Here are some of the recent updates from doctor's appointments:

On Thursday, August 25th, we had a cardiologist appointment and received the news that his VSD (hole in his heart) is a lot smaller than they originally thought and he may not go into congestive heart failure.  He still will need heart surgery, but we may get to wait until he is 6-12 months instead of the original 4-6 months.  The bigger he is the better. Praise God for something positive :)

On September 7th, Mr. Carson's original due date, we had his one month check-up. He was a little over 5 weeks old. He weighs 7lbs. 6oz. and is doing well. 

It is amazing to us all the little things we are so thankful for with our little Carson.  We also have realized all the things we take for granted in the development of a child.  Every milestone is so huge for us with him and we realize we shouldn't take that for granted with anyone.  We should take time to appreciate all the small things in life as well as the big.

Tuesday, August 30, 2011

4 weeks old

Yesterday Carson turned 4 weeks old.  It was an exciting day in our household.  It was the first day I had both kids by myself and we had to get out to get Kaylee to her first day of preschool.  Of course it decided to rain too.  The rain was very welcomed, but did add an extra challenge to the morning.  We made it there on time with everything we needed...success :).

Kaylee had a great first day of school.  She just loves going to school and is so excited to be in the 3 year room this year.  It was very strange for me to drop her off and not stay to teach.  I had my big to do list when I got home.  Ha, then I realized by the time I got home and fed Carson did a few things, ate lunch, fed Carson again, it was time to go back to pick her up.  I guess I need to not make my list quite so long ;).

Carson had a second urology appointment yesterday along with everything else.  We didn't find out too much more about the kidney, but we do have an action plan to find out what exactly is causing the hydronephrosis (enlarged kidney) and what they need to do about it.  It was really hard to hear the doctor go through all the scenarios and options.  We will undergo a lasix renal scan mag-3 to find out the exact problem then we will take the best course of action from there.  Unfortunately all the options pretty much involve some form of surgery.  I feel like our poor little man can't catch a break.  Please pray that hopefully these results lead to the least invasive of the surgeries.  The lasix renal scan test will take place in a few weeks then we will go from there.

We have a cardiologist appointment for Carson tomorrow.  So far he is doing well and has not gone into congestive heart failure.  It is a scary waiting game.  Once he does he will go on medicine until he is big and strong enough to have the surgery.  We will be so happy to have this done with and his heart working properly.

We will  keep you posted.  As always we appreciate all the thoughts and prayers.

Monday, August 22, 2011

Our Little Man is 3 weeks old!!

Carson is three weeks old today.  I can't believe how fast the last three weeks have gone by.  On Saturday, August 20th, Carson got to come home!!  He is proving to everyone what a strong little man he is.  We were told that he might not get to come home until around his due date on September 7th and he continued to do everything he needed to and exceed all of our expectations.  We are so happy to have him home with us and Kaylee loves being a big sister to him.

On Sunday Carson had his first photo shot.  My good friend, Diana and her family came over to snap some newborn pictures of him.  We are so excited to get to see them. 

Tonight we gave Carson his first bath at home.  Kaylee got to help us and had lots of fun getting to pour water on Carson to keep him warm.  She just loves her brother to death...hope it stays this way.

This week we have several doctors appointments for Carson.  Please continue to pray for his heart and enlarged kidney.  We know we still have a long road ahead of us, but are happy to continue to see what a fighter little Carson is.  We have the most wonderful friends and family that have surrounded us with prayers, support, food, and love.

Friday, August 12, 2011

Our Little Miracle

Our precious little Carson is 11 days old today.  He has lead us on an adventure from the start and continues to do so. 

Sunday evening (July 31st) my contractions continued to get stronger and at a pretty regular pace.  We decided that we should probably get some bags packed and line up childcare for Kaylee just in case.  We arrived at the hospital around 1:30 am, Monday morning (August 1st) and got to a room close to 2am.  The nurses checked me and I was dilated to almost 6cm!!  Total shock to all of us.  Needless to say my fetal fibronectin test taken on Friday (that was negative by the way) was wrong.  They called the doctor to come in for an emergency C-section.  At this point I can't even tell you the emotions that were going through Charles and I.  I think the best way to describe it all is complete shock.  I was only 34 weeks 5 days,  he wasn't ready.  As they prepped me for surgery, I don't think I have ever been so scared.  At 3:45 am I heard one of the best sounds a new mother can ever hear; the sound of our son crying.

Carson Thomas Koch was born on August 1, 2011 at 3:45am.  He weighed 5lbs 1oz and was 18 inches long.

The First Week:

Monday was the longest day of my life.  Keep in mind we haven't slept at all from the night before.  Carson was immediately placed in the NICU.  He was on oxygen and was given a feeding tube.  We are blessed that the hospitals are able to do so much for these little angels.
Tuesday he was put on a C-Pap to help his breathing.  It was really hard to see him like this.  We felt like it was a set back for him.

Wednesday the C-Pap was taken off after 24 hours and we was able to breath on his own without any oxygen. 

Thursday I was scheduled to go home, but my blood pressure decided to spike and they kept me in another day.  I was glad to be in the hospital when this happened.

Friday I was finally able to go home.  Glad to be home and to be with Kaylee, sad to leave without Carson.

Since the first week we have been making trips back and forth to the hospital trying to juggle everything.  It is amazing what good care the NICU is able to give our sweet Carson.  He is currently off of everything, but a feeding tube.  The goal now is to get him to be able to drink/ nurse 6-8 times a day.  He also has to finish his feedings in 30mins.  He has been doing really well the last few days and we continue to pray for strength for our little man. 

I will post some pictures as soon as I learn how ;)

Sunday, July 31, 2011

34 weeks....and counting

I guess it is time for an update.  I went to the doctor on Friday for my routine weekly check-up.  She hooked me up to the non stress test to see I was having contractions pretty frequently.  I haven't progressed any more.  I am still around 2 cms. dilated.  She also thinks he is still breech but she didn't want to poke around too much since I was contracting.  Still praying he will turn, but have accepted that I will do what is best for him.  She also went ahead and did another fetal fibronectin test, which I don't have the results back for yet.  They are good for two weeks though and I had one last week, so if they are as accurate as they say we have at least one week. This is especially good since my dr. is on vacation next week.  Needless to say I am now on bedrest :(.  Ha, if you know my personality this is really hard for me.  I think it is way harder this time because I have a very active 3 year old who wants "mommy" to do everything.  For the most part she is pretty understanding, but I know it is hard on her and that kills me.  I keep telling myself I need to keep Carson in a few more weeks to get him as strong as possible.  The contractions are kind of a blessing in disguise for me because they make me slow down.  Although I won't complain if they would stop :).

I did get a chance to take some maternity pictures this weekend and I am soo excited to see them.  My friend Diana took them and she is amazing.  I never got any with Kaylee since she came early so we wanted to make sure we got these in.  If I can figure out how to post pictures, I plan on posting some of them and the nursery soon.

As always I want to thank everyone for their prayers, support, dinners, and love.  We are so blessed to have such amazing friends and family.

Friday, July 8, 2011


What a wonderful July 4th weekend we had. We got to take a vacation, just the three of us (well 4 if you count the one in tow). We went to Lost Pines Hyatt Resort in Bastrop and had a very relaxing time. Then we headed out to my in-laws to celebrate 4th of July/ Gram's Birthday. Kaylee had a blast with all her cousins and we enjoyed more family time. We had the sad realization that this trip might be the last trip we take for a while. I have been having some contractions and cramping so we don't want to push anything.

On Tuesday after getting back from a nice long weekend we were working on cleaning up the house and continuing to get Carson's room ready. I think our emotions got the best of Charles and I because after looking at his precious room (pictures to come) and the realization of how soon he will be here we both broke down. This is so hard because you want so bad to be excited about the arrival of your son, but in the same sense you are scared to death. The up and down emotions can really wear you out. This where our friends, family, and faith step in and help us. Without them and everyone’s support we don't know how we could do it.

Yesterday I had another OB appointment and my belly is measuring right on par. I am dilated 1cm so they did the fetal fibronectin test again and the results were negative, so this is good news. This test lets them know if I am going into pre-term labor (here is a link for those wanting to know more Praying our little guy will stay in at least 5 more weeks. Next week we have 3 doctors appointments for Carson so we will find out more than.

As we come closer to the arrival of Carson, we need prayers more than ever. I am such a planner and the unknown is really hard for me. This is definitely a journey that is not going to be easy, but I am hoping will be full of so many blessings.

Sunday, June 19, 2011

What a weekend!

We had a very busy and productive weekend.  I was so glad my parents were able to come up and help us out and also that I got to spend Father's Day with my dad.  The weekend started off Friday morning with two doctors appointments.  Nana and Papa watched Kaylee while Charles and I went to the appointments.  I had my regular OB apt. and my high risk doctor apt. back to back.  I was doing the glucose screening and some blood work for my OB, so they let me drink the super sweet fruit punch drink before we headed up stairs to the high risk doctor.  Needless to say the baby was going crazy in the ultrasound.  They tried to get a 4-D picture, but Carson wouldn't cooperate.  Then we had to run down to make sure we were back in an hour to do my blood work.  Right now we are praying 1) Carson decides to turn because he is breech and 2) I pass all my blood work and glucose testing (don't want to redo that one).  That whole day was very hard for me.  I don't know why, I guess I just get so scared they will find something else.  Plus that night we attended a new Down's support group and I was nervous about going to that.  It ended up being a great experience and we got to meet lots of neat people.  It is all still a little shock to our systems that we really will be a part of that group in a couple of months. 

Saturday we started the day by finding a snake at my front door (YIKES!!).  I am not a fan of snakes at all.  Then we had a very productive day at Ikea.  We bought Kaylee a new bedroom set and then Papa and Daddy put her bed together that night.  We (well not so much me) also moved all of her old furniture into Carson's room.  I think I have been putting off some of the realization of it all and I am beginning to realize I don't have much longer until his arrival.  Sometimes I focus so much on the diagnosis and do so much researching on future things that I forget I still have to be prepared for the arrival of a newborn baby.  This has been something I have been working on for most of the pregnancy; to realize I am not just dealing with a disability, or a heart defect, but also a precious child who will need even more love and care and we have to be strong for him.

Today is Father's Day and I got to share it will two very special men in my life; my dad and my husband.  Two of the most incredible fathers I know.  It is a great way to end a busy, productive, emotional, and wonderful weekend.

Friday, June 10, 2011

Cardiologist Appointment #2

Today was our second pediatric cardiologist appointment.  Going in you don't know what to think.  Part of you thinks well I already know about the defect so that makes it a little easier.  Then there is part of you that prays they don't find anything else.  We are happy to say that there is no new news.  What we know is that Carson has an AV Canal Defect.  Here is a link that explains it for those of you interested :  He will have to be medicated a few weeks after birth and will need surgery around 4-6 months. We want him to be a strong and healthy as possible for the surgery.  This will be a scary waiting game.  I love our doctor and she seems very optimistic about everything.  We just have to put our trust in her and God.

Saturday, May 28, 2011

Introduction to our little family

I am not quite sure where to even start.  I guess I should start by telling you how blessed I am to have such an amazing family.  I have an incredible husband, Charles, who is the best father.  He has had to balance working full time, going to MBA school full time, being a husband, and being a father for the past 3 years.  He recently graduated with his MBA and we couldn't be more proud of him.  I have a wonderful 3 year old, Kaylee, who keeps us laughing.  She is the sweetest, smartest, and most strong-willed 3 year old I know.  She loves to sing and dance and is such a little performer.  We also have a son on the way, Carson.  He is the main reason I decided to do this blog.  My pregnancy is one that I could write a book on and I am only 25 weeks along.  It has been a complete roller coaster ride with this little man.  From day one we thought we were going to lose him.  Then we have since found out about an enlarged kidney, a heart defect and a diagnosis of Down Syndrome.  This little man is such a fighter.  We have definitely had our ups and downs emotionally and I want to be as honest as I can about them in this blog.  We anxiously await his arrival.

Welcome to our blog

We are hoping to get this blog up and running so we are able to keep everyone posted on what is going on in our lives.