Doctors Appointment

On October 14th Charity had an appointment with her surgeon.  I thought he was going to dilate her and look and her.  He did, but he also told me that Charlie and I need to start dilating her at home.  We will be doing this for 14 weeks straight.  There is no problem with Charity we are just doing this to "open things back up".  But she is doing great.  She is 3 months and developing well.  She gets cuter and cuter every day.

Update.

Wow, Charity is almost 3 months old!
Ok, it's been a few weeks so here is an update.  Charity has had two more appointments.  On September 13th she had her 2 month check up.  Her pediatrician looked at her and she got her first round of shots.  Charity was not happy after her shots.  On September 16th she had another follow up with the surgeon. The surgeon didn't actually look at her this time.  Another doctor came in first and looked at her to see if things look normal..  Then the surgeon came in and he talked about certain signs to look for if things go bad again.   Our next appointment with the surgeon is October 14.  Charity has a whole month without having anybody look at her.

Also, Charity and I went to the breastfeeding resource center to get another lesson.  Although there are ways to get Charity to nurse, it is very frustrating for her and for me since she is old now.  Although I will continue to use the suggestions the resource center gave me, my main concern is that Charity is getting breast milk.  So, I will continue to pump and build up a supply.

Finally, on the 26th of September Charlie and I had Charity Baptized!  It was a great day and we are very excited that she has entered the faith.  Here are some pictures.

Charity's God parents

Friends

Well, I am definitely going to begin counting down to the end of 2010.

Travis and Bonnie, friends of ours from college went into labor yesterday.  They gave birth to their 3rd child, second son, at 1:48 this morning.  James Fulton was born without a heartbeat and was not breathing.  They were able to resuscitate him.  It was a home birth, so they took James to the hospital by ambulance.  He is in the NICU, where Charity was for her first 9 days, in the new wing of St. Francis Hospital currently.  It sounds like he will not even be held for several days.  They do not know the extent of any problems at this point.  Bonnie keeps up a blog for them: http://learningtobeanewlywed.blogspot.com/.  It has a few more details of what all is going on.

Please include them in your prayers.  I know that they would appreciate any and all prayers they can get.  I cannot know what they are going through, but I will say that I have had several flashbacks already of Charity's first few days.  Prayers definitely help!

CB

Doctors Appointment

This past Thursday (September 9th) Jamie took Charity to her follow-up appointment with the surgeon.  The surgeon looked at her bottom and saw that it was no longer infected so he removed the PICC line from her arm.  We finished administering medicine through it Monday, so there wasn't much of a need for it anymore.  Charity has another appointment next Thursday just to see if things are still going well.  Charity weighed 9lbs and 5oz.  She is definitely growing!

Charity is now producing stool like a normal baby.  She will be two months on Monday and is developing very well.  She is beginning to actually play with her toys and responding to different sounds.  She can hold onto things, including her rattle (at least for few seconds before she drops it).  She also smiles a lot more often.  Hopefully we are fully done with this and we can enjoy our baby girl!

Thank you all for your continued prayers.

Things Are Turning Up Roses

I haven't had a whole lot of time to update the last few days, but a lot has happened.

First of all, Charity is HOME!!!

A few days ago, the surgeon mentioned putting in a PICC line.  What he did not mention was that he wanted it in so we could take her home.  The PICC line procedure took place Tuesday.  It was to last 1-2 hours.  Of course, Charity decided that it should last 3 hours instead.  Unfortunately, we didn't know what was going on for that extra hour, so it was a long hour.  For some reason, we were not able to get any updates about the procedure.  Jamie and I were both kind of freaking out because we had no idea why it was taking an extra hour.  Apparently, the nurse practitioner performing the procedure had some issues trying to find a good enough vein to use for the PICC line.

In the end, the PICC line was in, so things were looking up.  They had to keep her in over night to be sure that everything went well.  Yesterday, we had just a little more stress to be sure that we were on our last nerve.  When the nurse went to give Charity her medicine, it did not go in right away.  We were both holding our breathes.  If the medicine did not go in, she would stay in the hospital.  Luckily, they found out that her arm just needs to be kept straight in order to receive the medicine.

So around 2:00 yesterday, we were able to take Charity home!!!  It was great!  Of course, we got stuck in a traffic jam, but at least we still had her in our van once again.

Last night, Jamie and I enjoyed our first night in our bed (the first night in almost a week in any bed for me).  Charity also got to enjoy her night in her cradle once again.

Charity does need to get antibiotics through her PICC line every 6 hours.  A home health nurse came to our house last night to show us how to give the medicine.  It is definitely a 2 person job!  From now until Monday, we will be giving Charity her antibiotics at 6 am, 12 pm, 6 pm, and 12 am.  We will have about 5 hours to sleep in between the night cycles.  It takes about 15 minutes to prep, 20 minutes to give the medicine (we have a pump to do this), and 5 minutes to clean up.  Of course, Charity also needs to have her diaper changed and be fed during this time as well.

Jamie will be taking Charity to a follow-up appointment with the surgeon next Thursday.  Hopefully, that will be end of this whole nightmare that has consumed Charity's whole life at this point.

I know that Charity could have been much worse off, but it still has been a long 7 weeks since she was born.  She already looks much more relaxed and seems more interested in the world around her.

Again, thank you for all of your thoughts and prayers.

Lucky

Charity is still doing fine.  She hasn't had any more touches of fever.  As long as that stays away, all is good.

I titled this entry lucky because that is how we all feel.  We have been so touched by all of the love and support you all have given us.  Today we finally got a chance to go home for a bit and found a package that contained a beautiful quilt given to us by our friend Kim.  Another friend, Bonnie, was kind enough to include us on her blog which I am sure will lead to more prayers and thoughts headed our way.  (The more the better.)  We have had so many Facebook messages to help support us along the way as well.

I tear up when I think about my coworkers.  They have all been so wonderful.  It has truly felt like my coworkers have been family members.  I am especially touched to have Jean and Janice as coworkers.  We work on the same team and they have both been so wonderful.  Before we had Charity, they threw a great shower for us at work.  Since we have had her, they have been even more wonderful.  I was dreading planning for this week.  I don't know my students all that well yet and I have no idea what will work with them and what will not.  Janice (Auntie Janice to Charity) and Jean actually took time out to plan for me.  You have no idea how much that has meant.  When Jean sent me a text saying that everything was planned, I felt like a weight was taken off of my shoulders.  Thank you to you both!!

I also want to thank Sandy, our 5th and 6th grade counselor and her husband Chris.  Sandy has been so supportive every step of the way.  Chris has been doing a great job subbing for me and even helped plan for my students.  I feel so much better knowing that he is there with my kids.

I want to once again thank EVERYONE for their thoughts, prayers, and support.  I am tearing up right now as I am writing this thinking about everything everyone has done for us.  Preparing meals, calling us, checking our blog, and writing on our Facebook page have all meant a great deal to us.  I don't want to leave anyone out, but it would be impossible to thank everyone by name.  Please continue to keep us in your thoughts and prayers as we continue to keep you in ours.  I am sorry if I did not mention you by name, but that does not mean that we don't appreciate you.  We appreciate everyone of you!!!

Thank you again!!

CB

Day 4

It usually isn't a good sign when I start using the day count as the title for these posts.

This is Charity's fourth day in the hospital.  When the surgeons made there rounds earlier today, they said that they were concerned about Charity's bottom.  It is red and there is a small infection.  The informed us that she will be receiving antibiotics via a PICC line (basically a long term IV) for the next 5-7 days.  That means that the earliest Charity will be able to taste fresh air will be next Monday.  She is still resting comfortably and doesn't seem to be in any pain.

Jamie and I have hunkered down in her room and are doing fine.  We are working out a schedule today in order to stay busy while she is sleeping.  I have requested the rest of the week off of work to be here and I think Jamie has pretty much decided to move in a little more than me as I tend to leave our 16 walls (Yes, I counted.  There are 16 walls in our room not counting the interior bathroom wall.  Lots of angles.) a little more often than she does.  Charity and I are both so lucky to have her here.

Thank you once again for all of your thoughts and prayers.  Once Charity is out, we should be good to go.

CB

When Will It End?

Ok, so we hit yet another snag.  We were hoping to be leaving today, but it isn't looking very likely.

Charity had a fever after her surgery.  This is completely normal and part of the healing process, however, it shouldn't last that long or be that high.  She ended up topping out at 102 or so.  This lead to a few more tests...

First of all, she had some blood work drawn.  They wanted to be sure that she did not have an infection and also wanted to see how her blood count was doing.  The tests did not show any abnormalities to suggest a massive infection.  Yay.  However, the tests did show that she did not have a normal blood cell count.  Boo.  She had another test a little later in the morning that showed that her number was improving.  Yay again.  Her count should be a little low after surgery, so the tests seemed to be pretty much right on.

We also had a sonogram on her to check for any internal bleeding.  They did find one spot with some extra fluid.  Boo.  That means that she is going to be monitored carefully to be sure that it is not increasing.  As long as it is not increasing, we are good.  If it is increasing, she will have to have some repair work done to sew up the area that is leaking.

Luckily, her fever is gone (at least for now.)  She is eating, pooping, and peeing, so things are good on that front.  It looks like we are going to be spending at least one more night in the new St. Francis wing.  I have a feeling that since all of these tests were done between 3 am and 6 am this morning that it is going to be a bit of a tedious day for Jamie and me.  Charity, on the other hand, is enjoying her sleep right now.

Who knew that having a kid would teach me so much about the new building at St. Francis?  (By the way, I don't want to be here, but it is very nice and comfortable!)

Surgery is OVER!!!

Charity is now back in our arms.

The surgery went well.  They removed 4-5 inches of colon, but that is not much since it is usually close to 5 feet long.  The surgeon said that she should not have any major problems and that she should be home "very quickly."  I don't have a clue what that means, but it sounds better than the "several days" he told us about for the last appointment.  We basically have to be sure that she is eating and pooping for her to be released.

Charity is resting comfortably right now being as cute as ever.  I am sure that she will be feeling much better once she soreness decreases.

Thank you for your support.  It means the world to us.

CB

Surgery - Check

We got a call 11:07.  The surgery pretty much over!  They have removed the amount of colon that they need to. When they called they were going to begin finishing things up and get her back together.  I don't know how much they had to remove yet, but there were no incisions needed, so it wasn't the worst case scenario.

Thank you again for all of your prayers.  Now we wait to see her and for her to come home (again).

CB

9:00 AM

The surgery has officially begun.

Surgery Time

Ok, so it has been a hectic morning!!!

Jamie and I were about 10 minutes from the hospital when we received a call from the hospital.  They moved her surgery up!  She went from having a 9:00 surgery time to an 8:00 surgery time!  Thank goodness we were already on the road!

We ended up getting to the hospital at 7:10, so we actually did fairly well.  Nothing like a little adrenaline with breakfast!

It is now 8:54 and she is currently in pre-op.  She should be beginning her surgery shortly.  The surgeon seems to be fairly confident that she will be out by noon.  We will see!

Jamie and I are currently at the hospital with both sets of our parents and Jamie's aunt and uncle.  We are all really nervous, but at least we should be through everything before this afternoon.

Please keep Charity in your prayers.  All of your prayers have already helped her so much.  This went from being a procedure that would take a few months to be completely finished to a procedure that should be done in one day.  God had to have had a hand in that.  Thank you so much!

CB

Surgery Info

The three of us just got back from meeting with the surgeon.  She is scheduled to have her surgery on Friday, August 27th at 9 am.  We don't know how long she will be in the hospital, but it will be "several days" according to the surgeon.

We did find out that they shouldn't have to make any incisions in Charity, they will be pulling the colon out through the poo hole and then cut and sew it from there.  This will mean no scars for Charity!  The surgery will last 4-6 hours and will be preformed by Dr. Mark Holterman (Bio).  

In the long run, Charity will have to be sure that she stays regular.  That means a diet high in fiber and full of fruits and vegetables (could be worse).  I guess that means she will be one of the healthiest kids around!

Please keep up your thoughts and prayers.  They are truly appreciated!

CB

Update

Charity has a few appointments tomorrow (8/17).  She will have an x-ray done tomorrow morning and then an appointment with the surgeon in the afternoon.

Just to clear up any confusion, she will definitely need surgery.  We are hoping to schedule it tomorrow so we can get things in order.  Once we have a date, we are going to work on getting the baptism lined up.  Surgery isn't something that we really want, but it is best for Charity.

Thank you for your continued thoughts and prayers.  We will update this blog as soon as we get back from the hospital.

Hopefully we will have a full synopsis of everything very soon.

CB

More Pictures

Pictures

Here are some pictures we have taken of Charity since she left the hospital.

Charity is in her car seat ready to leave the hospital.

Finally Home!!!

Charity is final home with her parents!!!  About 6:30 last night, Charity was released from the hospital.  She got home and took a long nap.  Jamie and I are both totally exhausted!  We are hoping to be able to have visitors sometime next week.

So here is what is going on...

Charity has an appointment with her doctor on Monday to get another check-up.

In August, we are going to see the surgeon about her surgery.

A week or so after our appointment, Charity will have the surgery.  It sounds like it will be one surgery one day and then a week or so for recovery.  Hirschsprung's Disease will basically mean that the lower part of her intestines will be removed.  We are hoping that it is a small segment, not a great amount of the colon.  After the surgery, she should be completely healthy and not have any more bowel problems.

In the meantime, Charity is going to have her poo hole cleaned by her mommy and daddy.  It isn't really on my bucket list, but it makes her feel much better and allows her to be home over the next month, so we will "doo" what we gotta "doo."  (Pun intended.)

After I stop rambling on this post, I am relinquishing my posting rights back to Jamie.  She is much better about posting pictures, so expect some very soon.

Again, thank you for all of your thoughts and prayers.  They have meant a great deal to us.  Please keep Charity in your prayers as she prepares for her surgery and recovery in a month.

After about a month, our little girl will be all ours!

Life is Like a Box of Chocolates...

I'm sorry for not updating this yesterday.  We pretty much spent the day waiting for information without really getting any new info to share.  Charity did move to a less severe part of the ICU, however.  It is much quieter and we have a ton more space to get comfy in.  Charity also now has 3 big windows that she can look out. :-)

Today was a different story.

We got the results back on Charity's test.  She tested positive for Hirschsprung's Disease after all.  That means surgery.  We have an appointment with the lead pediatric surgeon at OSF tomorrow at 11 AM.  There we will find out more info on how everything works.

When we finally got to talk to the doctor in charge of Charity in the ICU, we found out that the Hirschsprung's test had a sample that did not seem accurate.  As a result, the surgeon was going to discuss things with the doctors in charge of the test.  Basically, that could mean that she may not have Hirschsprung's after all.

So in summary...

1.  Charity tested positive for Hirschsprung's Disease which means home and then back to the hospital in about a month for surgery.

2.  Charity's sample from the test may not have been accurate, which could mean a false positive.

3.  More information to come after our 11:00 appointment.

It does sound like Charity should be home either tomorrow or Friday, but we don't know for how long.  She may be home for a month or 2 until the surgery or she may not require surgery and may stay home with us with a few extra check-ups.  Of course, there is also some room for in between.

Please continue to keep us in your prayers!

One Week Ago...

One week ago today, Jamie went into labor.  This week has not gone as planned!

Jamie and I had a rather frustrating day at the hospital to begin with.  It seemed as though things were not really progressing.  Several of the key people involved with Charity were off for the weekend, so we went into today needing answers.

Luckily, we spoke with the doctor pretty early in the day.  The end of the story is that when they can figure out how to make Charity poop at home - which could entail Jamie and I cleaning out her poo hole - we can take her home.  They are trying to figure out the frequency of the clean outs.

Earlier in the morning, the surgeon stopped by to do a little test at Charity's bedside.  While he was there, he tried to work on the obstruction Charity has.  As the day went on, it seemed to work.  Charity passed 2 stools today on her own before we left at 9 tonight!!!  If she goes again tonight and a few times tomorrow, she should be home in no time at all!!  Jamie and I are both so excited about the possibility!

In the mean time, Charity is eating very well.  Jamie has been trying to nurse, but Charity hasn't quite got the hang of it yet.  We had a nurse who was trained in breastfeeding try to help us tonight which was a big help.  Charity is back to suntanning.  There isn't a real need for it, but the doctor just wanted to do a little more for her.

Basically, we are in a "wait and see" mode.  I am hoping that the next entry I write will be about her coming home on her original due date - July 20th.

Thank you again for all of your thoughts and prayers.  You have no idea how much they mean to all of us.  Please keep on Praying for Poop!

Test Coming

Today went very well.  Charity pretty much slept and ate today.  Luckily, she still had enough energy to look at her parents from time to time!

Jamie did try nursing today, but Charity didn't quite get it yet.  She wants to, but she isn't too sure how to do it.  We are going to have a lactation consultant come in for a feeding tomorrow to help out.  We don't want Charity to be frustrated over food!

Tomorrow, Charity is going to have her Hirschsprung's test, but it is just a formality.  We are hoping they will find out what is going on in her poo hole so we can take care of it, but there is no word on when they are going to do that.  Hopefully they can take care of things right there and send her home ASAP!

She did not poop at all today after 2 last night.  Please keep praying for poop!

Poop's Coming!!!

When Jamie and I got to the hospital today, we found out that Charity got upgraded to a crib (no more warmer), had her IV removed, was wearing a onesie, stopped suntanning, and was able to begin eating more.  We were so happy to see all of the improvements!  We are now able to hold her when we are in there without having to always get permission from the nurse.

As we were oohing and aahing over our little girl, the nurse said - by the way, we are decreasing her poo hole cleanouts (ok, not what she called it) because she pooped (again she used stool, but that's not as fun) a few times last night!!!  Apparently, the obstruction is starting to give away and Charity is getting things out on her own.

As we are holding her, she looks perfectly happy and content.  We even saw a smile for the first time last night!  She is doing great.  We haven't heard of a possible date for her to come home, but we are thinking that it will be very soon!! :-)

Jamie is going to try nursing for the first time since we got to the hospital for a few minutes, so I had better go.

Once again, thank you for all of your prayers!  God is listening!  Please keep up the Prayers for Poop.  The more she poops, the sooner she will see her nursery (but, I am not talking about diarrhea!).

Finally, more pictures...

Food is Flowing!

Charity keeps on improving.  We just met with the doctor.  She had her food almost doubled for the last feeding and it is going to keep on increasing.  If everything holds, Jamie should be able to nurse once a day starting tomorrow!!!

Charity did have a stool about 10 minutes after prodding, which is a first!  Usually, she doesn't have anything after the prodding is over.  Her obstruction seems to be giving away a little bit.

I will try to put up some pictures soon.

Pray for Poop!

Pictures

We haven't been to the hospital quite yet, so no new news, but I do have some pictures and a video from yesterday.

Before eating, Charity finally got her nose tube removed!  It was the first time we have seen our little girl's full face since she was just 12 hours old!

This is Charity's first feeding.  Once she got going, she drank her bottle in a heartbeat!

After eating, Charity got back to tanning. (The nurse was watching her as she was on her stomach of course.)   

Today, when we get back to the hospital, Charity should be done with her tanning and still have her face tube free!!!  We can't wait to see her!

Finally Food!

Charity enjoyed her first meal at about 11:30 tonight (I know that it is 1 in the morning right now, so the date will not make sense, but it is still tonight to me!).  She drank 7 mL of milk within about 30 seconds!  Jamie got to give her the bottle.  Video and pictures will be up as soon as possible tomorrow.  The food seemed to settle in very well.  The only problem was that she was still really hungry, but that's a good sign.  She will be feed every 3 hours and I am sure that Jamie will be able to feed her whenever we are there.

As she was eating, Charity did pass a little gas down south, so we were very happy.  It was the first time that we actually heard gas come out on its own!  Yes, things were too tight to even let gas out!

Thank you for all of your support.  We love reading all of the comments.  They give us something to look forward to when we take a little break from our little one.

Since some people asked and I haven't really mentioned it, Jamie is doing well.  She is still sore, but she is moving pretty well.  She is getting to have fun in a wheelchair on the way to Charity and the way back to the parking lot, which is great in such a large hospital.  She is still taking Tylenol with codeine which is helping.  Luckily, she feels the need to take it less and less.  She still gets a little uncomfortable from time to time.

Keep the Poop Prayers coming!

The Night is Still Young

The glorious food isn't quite a go yet.  The nurse had to turn off one of Charity's tubes in order to feed her.  They want to be sure that she isn't going to throw up on an empty stomach.  As long as she doesn't throw up, she will be eating around 11:30 tonight.  If she keeps that down, she would lose the nose tube and be fed every 3 hours.

As for the poop, she is still getting it out of there, but with help.  The good news is that the obstruction seems to be getting a little easier to get around, so hopefully that means that it is starting to break down.

You know what I am going to type next...

Pray for Poop!!!!

Food, Glorious Food!

As of right now, Charity is going to receive her first meal around 8:30 tonight!  It is dependent on if her stomach seems ready, but hopefully our little girl will be eating by the end of the night.

The Doctor Was In

We talked to the doctor a little bit ago.  She had not talked to the surgeon yet, but she is on board with whatever he wants to do.  As a results, Charity should be having her first bottle later on today.

Nothing new on the poop front, but I thought for sure I heard her fart - for the first time.

Pray for Poop!

The Poo Report

My computer is finally working in the hospital, so here comes the updates!

The surgeon who saw Charity yesterday stopped by and told us that he can rule out Hirschsprung's Disease!!  That means that she will get all better now and stay out of here!!

We are waiting to hear from the doctor on the day shift to get a report about how things have progressed, but the surgeon wants to allow her to begin eating the milk Jamie is supplying for her.  She looks so ready to eat!  Hopefully, we will hear that she has been cleared to eat and that they will schedule a colonoscopy to see exactly what is going on.

I will update as soon as we talk to the doctor.

Meanwhile, they are still clearing her poo hole regularly.  She is pushing out what she can when they are helping open things up a little.  It seems like she is pretty well cleaned out right now, so let's bring in some fresh stuff (food!).

Keep the Poop Prayers coming!  They are still working!

No, Charity is not sunbathing!  They are stimulating her liver.  It isn't a problem, but it happens if you haven't seen the sun yet!

Blog Info

I changed the settings on the blog.  Anyone can now leave any comments you may like without signing in.  I forgot to change a setting when I was setting things up.

We are about to go to the hospital.  I will post updates as soon as I can.

Update

I'm sorry I didn't update earlier, but the computer I took to the hospital wasn't liking the internet there a whole lot.  I am taking a different computer tomorrow, so hopefully I can update earlier.

Today started out to be a pretty normal day until the doctor came in to give Charity an examine to find out something about her inner booty (and I don't mean beauty).  Your Prayers for Poop are working!!!!  As he was trying to put the probe in her, he noticed an obstruction.  He used his finger to get a better feel for things and noticed something was partially blocking her poo hole.  With his finger, Charity's stool came flowing out.  I was never so happy to see poop in all my life!!!  

The test he was going to do today, will be done tomorrow instead, but the doctor - who is a surgeon looking at her x-rays - seems to think that the surgery I posted about earlier probably will not be necessary.  For now, Charity is going to be receiving enemas and a probe to help the poop keep coming.  There will be a colonoscopy ordered this weekend or early next week to see what the deal is.  It is soft, so they don't believe it is a bone structure at all.

We don't know exactly what all this means, but, for now, it is looking like Hirschsprungs Disease is not likely.  This could be something that will simply be stretched into shape or it may require a much less evasive surgery.  It is still too early to tell, but Jamie and I are ecstatic that we saw poop and that it appears to be something that may keep Charity away from us for a few days instead of a few weeks.

Thank you for all of your thoughts and Poop Prayers.  Please keep them coming!!!  The more brown we see, the sooner our daughter can come home and meet everyone!!

Here is a clip from earlier (I know that not everyone may look at it, but I am a proud daddy, so what else would you expect?).