Bennett David Kahl

Bennett David Kahl
I do not cease to give thanks for you, remembering you in my prayers Ephesians 1:16

Sunday, February 28, 2010

You’re my miracle, too.

Every morning, when Ellie wakes up she wants to snuggle and whisper talk to each other. 

I love it!

She gives kisses, “softs” my ears, plays with my hair or she will just stare into my eyes.

We usually start off the morning by saying ~ I love you, you are my best friend. 

Yesterday, I told Ellie she was my miracle and she looked into my eyes and said, “You are my miracle, too.”

Melt my heart…

My little miracle girl is growing up so fast.

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Friday, February 26, 2010

Prima Ballerina


First day at dance class

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Yes, she came home with a snag in her hose!

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Waiting patiently for her sticker at the end of class.

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Dancing with her daddy…

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Happy Valentine’s Day! (with her chapped lips from being so sick…)

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Thursday, February 25, 2010

Making Peace

Well, I decided to listen to my heart and call the nurse in our peri’s office to see what the protocol would be if we decided to make him our primary doctor for the rest of the pregnancy.  I felt like if I took this step I would feel like I had done everything that I could in my power to make a difference and I would be making peace with my heart. 

When I finally heard back from her I was surprised by the news.  In order to make my peri my primary OB and MFM doctor I would have to personally call my current OB and talk to her about my decision.  She would then have to agree to this change and call the peri herself and give permission to take over my care.  The nurse was super nice and explained that because such a large portion of their patient list if based on referral they have to maintain good relationships with the OB’s.  That makes total sense to me, but it also would put me in a terrible situation by having to confront a doctor that really hasn’t done anything “wrong” as far as care is concerned.  It’s not exactly bad medicine to have a different opinion than a patient. 

I had the opportunity to explain to his nurse exactly why I was so concerned and she agreed that there are a lot of doctors that do not believe in home uterine monitors and that they just happened to be one of those that does believe in it.  She really calmed my fears and made it clear that if there were a serious issue with my contractions ie. they were actual labor contractions that were going to change my cervix,  then the home health nurses would call her and she would be the one in charge of making any emergency decisions.  That also made me feel better.  So, basically what it boils down to is that I will be seeing the OB and the peri on the same day every two weeks.  He is in charge of making the call of how the pregnancy is going and he is the one that will make any changes to my meds.  The OB will simply weigh me, take my blood pressure, urine culture and fundal measurement.  Yes, it is a pain to have to have two doctors especially when one doesn’t really do much…but, that is what our reality is and I’m not going to expend ONE more second worrying about it.  I have made peace with our decision and I feel like we are being well taken care of.

Tuesday afternoon after the doctor I didn’t have ANY contractions which was a huge blessing, but then yesterday I had 3 on my strip.  Today during my morning strip I had two small bouts of irritability and no contractions.  Basically, there hasn’t been any rhythmic pattern to the contractions this week.  Today I had an awesome nurse that called about my strip and she was more than happy to reassure me about what is going on.  No, it is not “normal” to have regular contractions, but there is a difference between labor contractions (that change your cervix) and “non”labor contractions that you are just going to have b/c your uterus is a big muscle.  She said b/c my cervix checked out so nicely on Tuesday that I should be very reassured that these contractions are not doing any damage yet.  She also said the same thing the peri’s nurse said yesterday…if they were worried about me I WOULD know it and they would be making changes.  They are not concerned yet, so I need to just take it easy and TRY to relax. 

I woke up this morning and the first thing I did was declare the day up to God.  I told him that I was not going to let the anxiety into my mind and if it did start to creep in I was going to center myself and put it all back in His hands.  I have had a great day!  I know that talking to the nurse really helps and I feel so blessed to have a peri that supports home health care, but I also know that having my faith is an even bigger blessing.  I have six more weeks of “grey area” to get through before I will feel a huge sense of relief.  That’s not long when you consider how far we have come. 

Thank you for taking this journey with us and I continue to thank you from the bottom of my heart for all of your prayers and support.

Now, I have some very exciting news to share about our princess.  She started ballet, tap and jazz today with her friend Brooke!  My friend went to pick up their “uniforms” because the dance academy has very strict rules and dress codes.  She came over to drop it off and we tried it on Ellie and it looked absolutely adorable!  I will upload pictures of our social butterfly asap.  Poor Biddy is going to feel like a real “soccer mom” pretty soon.  Ellie has a packed schedule of two gymnastics classes, dance AND soccer every week!  I feel very blessed that we have friends that she takes these classes with and that she is getting some sort of normal in the middle of all of this chaos we have going on.  She is such an amazing gift to all of us!

May your unfailing love rest upon us, O LORD,
even as we put our hope in You.

Psalm 33:22



Tuesday, February 23, 2010


This post is unorganized in my head…so, I don’t expect it to be an award winner…it is what it is.

The definition of trust is a reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence.

Brandon and I have been dealt a difficult hand of cards when it comes to our past with the medical community and that has damaged our confidence.  We had our issues with the  OB in our first pregnancy…and then there is the issue with Bennett which is another story for another day.  Add in ALL of the medical issues I have and you can probably understand why we have trust issues with doctors and why we have so much anxiety with the current situation we are in. 

Today was not exactly what I expected it to be.  the nurse in the OB’s office yesterday was concerned about my contractions (rightfully).  I was concerned about my contractions as was our entire family. 

I expected the doctor to be as concerned as everyone else…and I was a little put off that she wasn’t. 

This post would end up painfully long if I rehashed the entire appointment.  Basically, my doctor thinks contractions are normal.  She HATES using uterine monitors because of situations like mine…they detect preterm contractions and freak patients out. 

Here is my point: If the monitors are detecting contractions…that means I am having them!  If I am having contractions at 22 weeks we have a problem. 

Not so, according to her.  Am I bleeding???  No.  My cervix checked out today and passed the test.  Good.  So, then what?  Well, according to her we just sit and wait.  She wouldn’t do the Ffn test today because she believes it’s too early.  She is the same doctor that told me to wait until my 19th week of pregnancy to start the 17P injections…it is COMMON knowledge that you start 17P at 16 weeks if you have a history like mine.  We had to go around her and ask the peri for the 17P and he was happy to let me start right at 16 weeks.  Ffn is made to be started AS EARLY as 22 weeks.  Her argument today was that it is so early at 22 weeks that we could get a false positive b/c your body naturally makes Ffn up until the early 20 weeks in pregnancy.  So, once again I was knee deep in a battle with her about dates.  I’m tired…so, she won.  I gave up.  Am I happy about that?  No, I am ashamed that I didn’t have the guts to just say, “It’s my body…do it!” 

But, like I said…I’m tired. 

She is a doctor, so at what point do I just convince myself to TRUST her?

She should know what she is doing, so why shouldn’t I just back and let her do what I am paying her to do and feel confident?

I have a good reason…our past.  Period.

We have been burned badly.  We have been let down by the people who had our lives and our children’s lives in their hands.  How do you come back from that?  When do you decide to put your faith in someone else again?  When do you leave your child’s life in the hands of someone else?

It is a lot to have to process in the middle of everything else we are going through.  B and I had a great talk in the car afterward and I know I have to work on trust.  I know that at some point I am going to have to trust the decisions our doctors are making…even if their beliefs are different from mine. 

Trust is just a difficult concept for me because it means not being in control.  If I am in control and something goes wrong I only have myself to blame and there is no regret to live with in the end.  And to be honest…B and I live with a lot of regret about our past medical decisions.  We are in a vicious battle and it all comes down to letting go.

So, I am trusting in my doctor and we are going to sit and wait for our next appointment in two weeks to do the Ffn.  At that point we will know if I am in danger of delivering Cullen.  (and at that point we also see the peri)

Most importantly, I am trusting in God.  It is because of Him that we are here right now and it is only Him that will get us to where He wants to be.  No amount or lack of control and not one doctor or medicine can do that all alone. 

That’s the plan!  Bed rest, pump, monitor and lots of prayers are also a part of the plan!!  Oh, and willing these contractions away…hopefully!

Trust in the LORD with all your heart,
And lean not on your own understanding;
Proverbs 3:5



Monday, February 22, 2010

A bit of a rough patch

It’s on strike…my uterus I mean.  It has decided to take a vacation in the middle of trying to grow a baby.   Bad timing?  YES!  I am mad and scared and I would really appreciate ALL of your prayers and support right now. 

My contractions have increased.  For the last few days I am averaging 2/hour.  That isn’t the end of the world yet, but it is a downward spiral from where we were a week ago. 

My fight scares me because it is life or death for our little boy…again.  I am going in to the OB tomorrow morning and they will do a cervix check and do a Ffn swab test.  This test will tell them if I am in immediate danger of delivering Cullen in the next two weeks.  I will have this Ffn test run every 2 weeks from now on as long as I am pregnant.  They increased my meds through the terb pump again today, so I am praying that it will make a difference for my body. 

Not an ideal situation to be in at 22 weeks pregnant.  I am hopeful (through the fear) because I have known several women in my situation and with a lot of medical intervention they have been able to keep babies cooking a little longer.  It might mean a hospital stay for the duration of my pregnancy…we won’t know for sure until we meet with the doctor and get the results from the tests. 

In the meantime, can all of you that stop by to read PLEASE take a small minute to say a prayer for me during this time.  The last few days have been full of fear and tears.  I never wanted to fear for another child’s life like this and here I am…praying and begging God to just get me through these rough days and allow us to bring a healthy baby home.  It’s a tough spot to be in.

I will update tomorrow after our appointment, but I probably won’t have any answers until Wednesday.



Saturday, February 20, 2010

It is THIS easy!


Want to raise money for Team Chunky Monkey, but you feel intimidated when it comes to fundraising?  Here is a super easy way to raise $200!!! 

• Start with your own $25 donation        $25
• Collect 100 dimes                                  $10
• Ask three friends for $25                      $75
• Ask two family members for $20         $40
• Ask three coworkers for $10                $30
• Ask two neighbors for $10                    $20


This is the reason we are so passionate.  He fought to survive and now we are fighting to make sure half as many families face the same reality we had to.

For Your faithful love for me is great...

Psalm 86:13

Friday, February 19, 2010

On the road again!

New pump, new cath site and a new week almost here!  We are back on the road to cooking a full term baby!!

The wait was long and I was nearly in convulsions because of all the oral medicine I had to take while I waited for the pump!  The sweet nurse talked me through the pump set up b/c she couldn’t get here right at 4, but I discovered a HUGE air bubble in my tubing after we started running it and freaked out (and so did she!!), so I had to immediately shut the pump off and remove the catheter from my leg.  It was fun…not really, but she rushed right over and we got it all set up. 

The great news is that I didn’t have any contractions on last nights strip even after the debacle the broken pump caused!  Score: one point for my body!

I’ll leave you with a picture of my sweet angel!!!

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Happy Friday!


Thursday, February 18, 2010


Just when I thought we might be catching a break with the whole pregnancy/contraction thing…I wake up to a broken turb pump!  Which means I’m not getting any medicine while I lay in bed and impatiently wait for them to come deliver a NEW pump to me!!!  This WILL NOT be the beginning of a slew of bad news…this is simply a MINOR bump in the road for today!

Team Chunky Monkey news:  Well, we only 9 weeks left to raise funds!  Our team total is at $515…(my ticker to the right isn’t counting team totals)which is awesome, but we have a long way to go in order to reach our goal.  PLEASE help us help the tiny little miracles that can’t help themselves! 

If you would like to make a one time contribution: Click on the March of Dimes tab at the right side of my blog or:

If you would like to join our team and raise funds in your own name you may follow this link (you DO NOT have to participate in the walk if you choose this option):  You will click on Join a Team and then type in Team Chunky Monkey

If you would like to join our team and walk with us on April 25th you may follow this link:  You will click on Join a Team and then type in Team Chunky Monkey



Wednesday, February 17, 2010

Another one down!

Slowly but surely we are moving closer to our goal!  Only 14 weeks and 5 days to go…no biggie…right?!?!

Last week brought a new set of changes and a few challenges. 

Monday was an awesome day.  I felt “normal” for the first time in weeks because of all the good news we received.  Reality slapped me in the face when I came home from the doctor and had to hop right in bed, but the three hours I was out were fantastic!  I even took a 4 minute walk around the fabric store to see if I could get any cool samples of fabric for Cullen’s nursery…no luck there!  I was feeling so “normal” that in the evening I got out of bed and talked to B while he cleaned the kitchen.  We were still alone because Biddy was recovering from her version of Ellie’s RSV and the following day the Healthy Connections nurses were set to make a visit.

Even though B did his best to make our house ready for “outsiders” I am super type A and I hopped up first thing Tuesday morning and spruced things up a bit more.  Right before the nurses were set to arrive I had a pretty big contraction.  Actually it was a really big contraction and it made me stop for a minute to catch my breath.  I was relieved when the nurses arrived because I knew I would start the new meds and have the monitor to ease my fears of not actually knowing if I was really having contractions (even though I was pretty sure I knew what they felt like).  It was a long visit, but I learned so much and the two nurses that came here were so sweet to me.  I monitored while they were here and sent in my strip to the nurse center and it showed that I had two contractions that hour and a lot of irritability.  That made me nervous…really nervous to be honest.  They inserted the catheter and got the meds running and about 4 hours after they arrived, they were leaving.  I was on my own!  The rest of the day was spent in bed b/c apparently the definition of bed rest doesn’t include visiting with your hubby in the kitchen while he cleans and it doesn’t include just throwing ONE load of laundry in b/c that couldn’t hurt.  I was to stay in my bed!  Bed, bathroom, shower and back to bed!

That evening I noticed several bouts of irritability and several contractions.  I put on the monitor so I could send a strip in and in 30 minutes I felt 3 contractions.  B was on the phone with my brother when I started crying because I had so many back to back.  I sent in the strip and the nurse ordered that I give myself a demand dose of meds from my pump.  After that, I was told to drink 2 bottles of water lay on my left side and re-monitor starting at 9pm.  From 9-10 on my strip I only had 1 contraction and some irritability. 

Wednesday was spent in bed the entire day and Biddy came back to help because I absolutely could not take care of Ellie and myself the way I needed to.  I had several more contractions on Wednesday.  Two on my morning strip and 1 on the evening strip.  Basically, the strips were showing uterine contractions every single hour.  That is scary at 20 weeks.  I knew my cervix looked good because I was just as the doctor, so the abrupt increase in contractions had to be due to the change in meds…at least in my mind that is what I thought.  My only relief was that I knew a nurse was coming out to our house on Thursday to test B on catheter insertion, so I could confess my fears/findings to her.

First thing Thursday, we had a very sweet nurse arrive at our house.  I have really liked all of the nurses we have had and it is awesome b/c all of them are or were L and D nurses at The Women’s Hospital of Texas!  That is where I delivered the twins and ideally I would like to deliver Cullen if he is full term.  Because they are nurses at a hospital we hold in such high regard I really trust them.  I didn’t waste one second of time before I started to express my concerns about the meds.  She was so sweet to listen and as soon as B passed the catheter insertion (by practicing on my leg) she called the head nurse and they increased the frequency and dose of my meds.  I noticed a decrease in the next 24 hours and by Saturday I wasn’t having any contractions on my hourly monitoring strips.  I have felt a few here and there, but that is normal.  I haven’t had regular contractions since Friday morning!  Praise the nurse that listened to my concerns and helped make the change in my meds!!!

We (or maybe I should say Ellie and I) had an awesome Valentine weekend!  B surprised me with beautiful flowers on Friday ~ that Ellie told me we could share!  Saturday, B and Ellie had fun day together and Sunday our Cupid surprised us with another round of goodies.  It was an awesome moment to see Ellie’s face as she entered the kitchen to see what her Valentine (daddy) had waiting for her.  Roses, a HUGE balloon and all of her favorite candies exploding out of a box!  I couldn’t have done a better job myself if I had been in charge of her gift.  Brandon outdid himself as usual.  I was sad that we didn’t have any goodies for him and if I had half a brain I would have ordered him something online…my brain is on bed rest too I guess!  To top it all off Brandon made the VERY BEST homemade french onion soup for us to enjoy!  Brandon is only human, but I promise sometimes he proves himself to be super human to us!  He really is the love of my life!

On Sunday evening we were surprised with dinner from friends down the street.  I can’t tell you how much it meant to have a homemade meal!  I love to cook and we are used to having home cooked meals every single night.  For the past few months we have either had to eat to go food that B picks up on his way home from work or frozen meals from the freezer…it has been expensive and fattening!!!!  Bless Biddy’s heart…she is the best laundry washer/folder/organizer in the WORLD, she can read a mean book to Ellie, play baseball, and go for walks, but cooking is not her “thing!”   Our episodes (her episodes) in the kitchen are for a post all their own!  Yes, she reads my blog and YES she is aware I am exposing her!  So, to say I was overjoyed when our friends offered home cooked spaghetti would be a total UNDERSTATEMENT!!!  I have a terrible time accepting help from others, but that was the best meal I have had in a long time!!!  I am very grateful to them for that wonderful surprise!

The end of Sunday meant the 21 week mark!! 

How far along: 21 weeks

Total weight gain/loss: Up 8 pounds as of the last appointment.

Maternity clothes: Yes - and comfy lounge clothes.  I have resorted to B’s sleep pants b/c now I have this pump that I have to accomodate!

Stretch marks: Left over from the twins!

Sleep: Better now that I have the pump that gives me meds at a scheduled time.

Movement: Yes!  He is a long boy b/c I will feel a kick above my belly button and then another jab on the old bladder!  It is different carrying one baby vs. two b/c he has so much room to move!

Food cravings:  For the past few weeks this is my meal plan: B) Waffle, peanut butter sandwich L) hot pocket and an ENTIRE bag of steamed veggies! D) whatever gets made out of the freezer or B brings home! 

Gender: BOY!!!

I miss: I don’t miss one thing…I love this little boy more than words can explain and I will do whatever it takes to get him here on time!

What I am looking forward to: I go to the OB next Tuesday and then the peri two weeks from then.  We have our shower in about 6 weeks and it is my goal to have his room totally done by then (minus bedding which is being made).

Milestones: Every single day is a milestone! 

Prayers: That my placenta will continue to move and will no longer be covering the cervix.  I pray that the contractions stay to a “normal” minimum and that the meds keep our precious little miracle cooking for another 14 and a half weeks.  This process isn’t really that hard on me…I mean I just have to stay in bed all day and pray that I can keep this little boy safe.  My husband on the other hand has the tough job.  I am grateful for his strength and his dedication to our family.  I feel guilty a lot of the time that he has to endure so much more than he should…after all that he already does.  I know he can do this because we have made it through worse, but I do pray that the next three and a half months are smooth and worry free for his sake as well as mine!  One last prayer…for my very good friend Heather.  She found out last week on her routine trip to Houston that her cancer has returned…  Please, please offer up any prayers you can for Heather and her young family.  She is amazing and has an amazing family to support her, but the truth is she has an aggressive form of cancer that is giving her a run for her money.  She beat it once and I KNOW she will do it again…she is a FIGHTER!!! 



Monday, February 8, 2010

20 week Cullen check

Today was such a great day!  I really LOVE the days that we visit the peri because we get very thorough ultrasounds, he answers all two million questions I ask him, and he always lets me “have my way” when I have a special request about certain treatments. 

I’ll start with the ultrasound news.  We knew we had a big’n in there…but, he is getting really big!  As Dr. K was measuring his head I asked in joking voice, “So, exactly how big is that head,” and he said, “Very BIG!”  For a second I got paranoid and thought that maybe something might be wrong, but he turned and looked at B and said, “But, look at his dad…he’s a big guy!”  I had to giggle because he really meant that B has a big head…and he does!  However, so does my sweet little Ellie and so did Bennett, so that big head in just in the DNA.

We got a perfect picture of Cullen’s hand with all 5 fingers and I swear you can almost see the finger prints because the u/s is so clear.  Our big guy has super long legs and arms and everything (heart, kidneys, brain) looks just perfect!  No echogenic bowel was detected (that would/could be present if Cullen has CF).  Just because they didn’t see echogenic bowel doesn’t mean he doesn’t have CF…we will only know that after he is born.  He is measuring at least 10 inches long and is almost ONE POUND!  That is way above average for a 20 weeker, but like I’ve said all along…I would love to have one big, fat, healthy baby!  We always get the 4-D ultrasounds done and he seems to have the exact same bone structure as Ellie…I can’t wait to see who he looks like when he is born!


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Now, for the news on my crazy body!  I still have placenta previa.  I hate the way the Dr. delivers that news because it is really the only time he seems overly concerned about my situation.  We REALLY need this placenta to move, so we can decrease the chance for blood loss as Cullen grows larger.  My cervix looked really good today and measured a whopping 4 cm!  Last visit it measured at 3.3 cm.  I am not as educated about the cervix as I am on other issues, so I don’t know if it usually changes it’s length like that or not.  To be on the safe side I am going to take the avg of my last two cervical measurements.  So, I am calling my cervix a 3.7 which isn’t bad! 

I have my orders for the turb pump and the uterine monitor and the home health people should be here tomorrow (fingers crossed!) and they will teach me how to do everything.  I’m not going to lie…it is freaking me out to have the small little catheter type device in my leg.  It freaks me out even more that B will have to change my site every 3-5 days.  I should be used to needles at this point and it is all for the next biggest blessing in our lives, so I KNOW I can do it!  Side note: The home health people called while I was writing this post and she used the word “overwhelming” as she referred to my medical history.  She was super sweet and didn’t mean it in a rude way, but it was funny to me.  That is the same reaction I get every.single.time I give my history to a new doctor!!!  Can they even imagine how “overwhelmed” I am by my own medical issues!!!

So, my next visit is to the OB in two weeks and then I will see both doctors every two weeks from there until delivery.  Dr. K did mention that **IF I go full term he wouldn’t mind letting me go until 38 weeks.  Coincidently, that is the exact week that Bennett crashed, we had to pull him off of life support and then we buried him.  I don’t feel comfortable sharing Cullen’s birth date with Bennett’s death date, so we will shoot for 36 or 37 weeks. 

After thinking about Cullen’s due date as it related to the day Bennett died I was reminded of a post I wrote about the month of June.  Back in December I recapped each month of the year in our year end review.  I used the word “hate” in that post as it related to how I felt about the month of June. 

It is no secret that for months (years even) I prayed for another baby.  I remember standing next to Bennett’s grave and trying to explain to him that I wasn’t looking for a replacement, but I would love for him to choose the best little angel up There to add to our family.   Brandon and I tried to start the IVF process for months, but for one reason or another it kept getting delayed.  Conception in October would mean a June baby and that made me uncomfortable. Looking back at it now, I believe in my heart that it is Bennett’s way of telling us to celebrate that month rather than mourn it year after year.  Just another reminder to ME that there are no mistakes in life. 

Our sweet little Ellie Grace is still battling with the repercussions of RSV.  This virus truly did take a huge toll on her little body.  Not only has she been really sick for a week and a half, but now Biddy, Aunt Connie, Mommy and Daddy ALL have the same crud. 

Funny story that I want to document for Ellie’s sake:  For me, Brandon is like a superhero (most of the time!).  He works his hiney off for us, he takes care of all of our house issues, he cooks, cleans and makes sure Ellie gets out every weekend to have some fun time and he always makes sure I am doing okay.  Imagine my surprise when I discovered that Ellie had a super power that would affect our superhero!

That super power I am talking about is VOMIT!  (I am laughing just typing this!)

For the first time in her life, Ellie got so sick that she vomited.   The first time was Monday night and we were all in our bed.  I knew it was coming and she was sitting in my lap.  I started screaming to B to grab something to catch it and he just sat there staring at me.  Literally it was as if time was in slow motion…Ellie opened her mouth, I scrambled to find something to catch “it” so it didn’t end up on me or our bed and B just sat there frozen in time!  After the big scene we were laughing…well, it took me a while to laugh b/c I did have “it” all over me and I had to change immediately.  But, nonetheless, I was laughing with B because he said he thought he was going to be sick right along with her.  My Mr. Superhero…just a normal guy with a normal reaction to vomit!  Good thing I am the Superhero of handling “it” because “it” happened two more times on Tuesday morning!  Fun times here at our house!!!

Only 16 more weeks of bed rest to go!  I will leave you with this scripture that I love…

He hath made His wonderful works to be remembered: the LORD is gracious and full of compassion.

Psalm 111:4



Monday, February 1, 2010

I H-A-T-E cystic fibrosis!

UPDATE:  Ellie has RSV and cultured e-coli in her sputum again.  10 more days of antibiotics and fever control with Ty.lenol…they did say this would take a while to get over.  Fantastic!

Well, I hate the fact that Ellie and I both have CF for obvious reasons, but I REALLY hate it more for my little girl.

She is sick again!  Really sick!  So sick, that B is on his way to Texas Children’s AGAIN (the second time in 4 weeks). 

I called her CF nurse this morning and explained that we had taken her to the pedi on Friday b/c she was sounding wet in the chest and she was running over 103 fever.  The pedi has finally decided to treat Ellie like she is a kid with CF and be aggressive from the beginning.  B left with a Rx for azithromycin.  We have been giving her the antibiotic, mucinex, and pulmozyme for days and she is worse today that was on Friday.

She is such a super trooper when she is sick.  She rolls over to let us take her temp in the hiney, she takes all of her meds and even holds her own nebulizer when taking pulmozyme.  I just feel terrible that she has to go through all of this!

We try to keep Ellie’s life as normal as we can.  However, her immune system has proven to us that she absolutely can not handle being around ANY type of group activity involving other children. 

Knowing all of this we made a very difficult decision to home school her.  No mother’s day out, no preschool.  However, we have to make sure she is socializing and having FUN with kids her own age.  We decided to put her back into gymnastics because she loves it and it is a great way for her to get energy out.  She has been in it for 2 full months and been seriously ill twice. 

Our situation is a little different than other families with CF b/c it’s not just Ellie we have to worry about.  If Ellie is sick it is likely I will get the same thing.  My CF doctor is great about calling in an antibiotic for me as soon as Ellie gets sick, but there will likely be a time that we won’t catch it in time.  When mommy is sick who is left to care for the kiddos?  If mommy ends up in the hospital who is here to run the house?  Our situation is serious and it just plain sucks.  I can’t cuddle my baby when she is crying for me because I can’t risk catching what she has.  Both of our hands are raw from washing them 200 times a day.  We can’t ever share an ice cream or have a sip of each other’s drinks. 

This is hard…really hard.  It is even harder right now for B because I am a total waste that can’t even get out of bed without having uterine irritability and contractions.  And my baby is sick and I can’t be there for her.

I HATE cystic fibrosis and I HATE preterm labor.

On the bright side of things…I am 19 weeks today and if Cullen is still growing like the jolly green giant he is closer to 21 weeks!  Now that doesn’t mean we are really any closer to viability because we need his lungs to be more mature that the size of his body, but he will at least be a big boy which should help him out should he arrive earlier than he should!  Six more days until our next BIG doctor trip!   

Until then…

You will keep him in perfect peace, whose mind in stayed on You, because he trusts in You.

Isaiah 26:3