Houston?

Most of you have read how my appointment in Lubbock went.  I have been stressing about it ever since and feeling as though Lubbock was not the right place for me to get the care that Sunni is going to need.  Since I first started researching hospitals, drs, etc I have felt that Houston was the place. Well, with a  few peoples help it may be in the works.

One of our good friends from high school lives in Houston and is actually getting married to an RN that works in Houston (Hi Michelle!).  She emailed me after reading my blog and recommended a doctor (surgeon) there in Houston along with a ton of other information about CDH etc.  I finally today decided to email that doctor-- not really thinking I would get a response for a while.  I asked him how I would go about getting down there for care.  

He responded within an hour and told me that he gets a lot of referrals from Lubbock and Amarillo and that he was forwarding my email to his fetal team coordinator.  About an hour after that she called me!  I was getting my hair done so I did not answer but she left about a 5 minute voicemail.  That voicemail would have had me in tears had I not been in a public place.  It was SO informative, helpful, and caring.  She said that normally they get a whole team together to evaluate early on.  They look closely at the baby and decide what the plan of action will be.  I will be able to meet every dr at that time.  They would take me on a tour of the hospital.  The would co-work with my dr here in Amarillo so that I would not have to make that drive so often.  They usually have patients move to Houston at 36 weeks gestation and they can help me arrange to stay in the Ronald McDonald house which is right by the hospital.  When the baby is born they have a place (Ronald McDonald) IN the hospital that you can stay in while your baby is there.  She emailed me again with forms etc that my OB will need to fill out.  She said she knows my baby will be in great hands there.  WOW!  I was blown away.  They had 18 cases of CDH delivered in their hospital last year and more than that-- that they saw that weren't actually delivered there (does that make sense?).

ALSO--I talked to my sweet cousin Kim who also lives in Houston today and she has offered me to stay with her and her family whenever I need to.  She has an apartment behind her house she said I was welcome to stay in.  Her house is only about 14 minutes from the hospital.  She told me she would talk to a lady that she knows (retired RN) and ask her about the hospital that is in question (Children's Memorial Hermann) and seek her opinion.  As luck would have it, she ran into her at a Walgreen's in Houston shortly after we had talked. ((CRAZY OR WHAT??)).  The lady said that she would FULLY trust that hospital.

So although I didn't make any real progress today I have found comfort in knowing where I believe I am supposed to deliver Sunni and where she needs to be in order to have the best care possible.  I ask that my prayer warriors and supporters pray for this to work out for Sunni and our family.  Pray that everything works out insurance wise and so forth.  I plan on calling in the morning to see what I need to do to get an appointment and then taking this information with me to my normal OB appointment in Amarillo on Thursday (July 5).  Thank you for the many prayers you have already sent up and in advance for the new ones.  I have had a ton of support from friends, family, and strangers!  I'm grateful.  Thank you!

First Specialist Appointment

I had my first "Specialist Appointment" in Lubbock at Texas Tech.  Lubbock is about 3 hours from where I live.  I had a bad feeling about going to Texas Tech in the first place just because I had a REALLY bad experience with them in the past (although that was in Amarillo).  BUT my doctor recommended them so I went with it.

Shawn and I got there around 10:30 and were finally called back to a sono room around 11:20.  I thought I might throw during that wait--I was more nervous than I thought I would be.  The lady that did the sono was very friendly and talked the entire time letting us know what she was looking at.  When it finally came to the heart, lungs, diaphragm, etc.....she did not say much.  

My doctor in Amarillo made it sound like Texas Tech was going to do a really long sonogram with better technology or better equipment--but it did not seem that way to me at all.  It was like a normal sonogram in the normal amount of time.  It might have lasted 15 minutes.  I was glad to see Miss Sunni and prayed the entire time they were finding good things.  

The lady got finished and said she was going to take the pictures to the Dr.  He would review them and then meet with us.  After she dropped them off by him to review she took us to a "family counseling room."  I am posting a picture just so you will know these rooms are not fun to be in --AT ALL-- and the first sign was the big box of Kleenex on the table.

After a short wait Dr. Edward Yeomans comes in and introduces himself.  He said that the baby has a pretty bad left-side diaphragmatic hernia and her heart is already pushed completely to the right side of her chest.  He explained what all this means exactly and how the intestines are already in the upper chest cavity which will really hinder the growth of the left lung and basically "take over."  

He said that the sonographer saw that her heart has super thin walls----which was called something I forgot because my head was spinning----but he was going to make that as "questionable" in his paperwork at this time because he didn't see it on the pictures.

He then started with what I knew this would lead up to.  The persuasion to get an amniocentesis.  He said that there is a 20% chance that Sunni is not "genetically normal" and that an amnio would let us know.  I told him no and he said that was my choice but he recommended it and would do it right then.  Even after I said no and he said he would have to respect that decision he kept pushing it.  He explained that if I did have the amnio and the baby was declared "not genetically normal" they would not offer a c-section at delivery and basically would not fight to keep the baby alive.  I was of course fighting back tears and knew in my heart I would not be getting an amnio right then.  I really just with we could have left at that point.  CDH Moms--Is this the news/statistics you got?  That there was a 20% chance?  I was too upset to ask if this was just a stat for MY baby of ALL babies with CDH.

So after Shawn had to finally tell him NO we are not going to get the amnio today I felt like the tone had changed and I wasn't going to get any questions answered.  He seemed bothered that I said no---even though he claimed to "respect my decision."

ALSO--CDH Moms--please correct me if I am wrong but Dr. Yeomans said that the hernia surgery is almost always done within 24-48 hours.  That sent red flags up because I have read TONS of blogs of other babies that this was not the case at all.  I was thinking; either he doesn't know what he is talking about or  Lubbock rushes things.

As we were leaving he pushed the idea once more--that at the next appointment we can still do an amnio after I have thought about it.  

As soon as we hit the elevator I was in tears.  I do not have good feelings about Sunni being in Lubbock but I do not know how to go about changing that.  Houston would be the optimal place since Texas Children's Hospital is there and is ranked like #2 in the nation.  I also have family there.  BUT then again I would be very far away from Shawn & the boys.

So all in all I feel like I got worse news than I had before (with the heart and the news that the hernia was pretty bad already---according to him).  I really thought he might set in on some of the sono instead of just looking at still frame pictures.  I did not care for the dr.  I don't know if its because he didnt have news that I didnt want to hear or if I have a legitimate reason.  

CDH Mom's--please tell me if this was what you experienced your first appointment.  Also--should there have been any other news he should have given me?

After I finally got my bawl session over with Friday evening we enjoyed our time in Lubbock.  I will post some pics of the boys having fun.

Day 5

My heart still hurts.  It seems like its been more like 5 weeks and not 5 days since hearing the news.  Last night I couldn't sleep.  The tears just kept falling--and I had made it the whole day without crying.

I started looking at blogs of other CDH stories.  I found some that were so encouraging.  And then I came across some that just completely destroyed my hope.  I should remember not to do that so close to bed time. 

Shawn, the boys & I had to go to Amarillo yesterday to get the boys shots.  What a nightmare!  Ryder, my youngest, was the brave one.  He hopped right up there not really knowing what was about to happen.  Poor guy cried.  I tried to distract him while Shawn had to wrestle Cooper up onto the bed.  Shawn said that boy is STRONG and has abs of steel.  Since he was fighting, the nurse has to jab, and I mean jab, both his legs at the same time.  He screamed so loud!  I thought he would never stop crying.  The strange thing is--Cooper is super tough and Ryder is....not.  I did not want to get all 3 of the shots Cooper needed that day because I do not care for mixing that many things in my child's body.  So now we have to go back in mid August for one more. O M Gracious.  I dread that day.

So afterward we took them to Toys R Us--because that's what we promised them.  I never had intentions of buying the crib set from there but I wanted to look at them anyway.  They have the most beautiful girls set; changing table, crib, and dresser.  Its white and has bows raised in the wood.  Shawn would have bought it right then and there--although its way more than we planned on spending and the fact it may never be used.  I told him we had to wait.  For what?  I don't know. 

So as I was laying there last night I made a decision (at least for now) that I am not going to decorate her room.  I am not as strong as some women.  I read a blog last night where this woman's baby lived 6 weeks and she was at peace with her babies passing and knew it was in God's plan.  I know if I came home to a baby nursery and have to do something with all of it--sell it or whatever--it would send me into a place I do not want to be.  So for now, Sunni's room will look like Ryder's room and if someday I get to make it pink--it will be a happy, happy day.

Its just amazing how fast life changed.  Last week I was so excited for this summer.  I was going to keep busy with sewing, working on a nursery, making the boys rooms into 1 they could both claim. I pray this changes but right now I feel hopeless and almost depressed.  I am not enjoying my pregnancy anymore.  I had to actually think of how far along I was yesterday.  I feel Sunni kick and I just get the saddest feeling because I know she only has a little bit of time left to be pain-free, unless of course God decides to take her with him. 

I feel so ashamed to feel all these feelings when I read other people's blogs that have been positive the entire time and trusting in the Lord to heal their babies.  I could very easily lie and convince everyone that I am totally ok but be screaming on the inside.  I am not good at hiding things like that anyway.

I read last night that on average these babies have a hospital stay of 2-3 MONTHS!  How is that going to happen.  I have two boys to take care of, a husband, a job, and my baby will be miles away?  Possibly Lubbock or maybe Dallas?  This equation is not adding up for me.

I really hope next Friday answers some of these questions that I have.  My mind is working overtime.  My kids need me.  They are tired of seeing their momma cry.  They do not understand what is going on and I am not real sure I want them to. 

Please continue your prayers for both baby and I.  I hope that one day (soon) these blogs are less sad and more positive.  These are my true emotions though--laid out for whoever wants to hear them.  It really does help to get them off my chest.  Thanks for reading, praying, and hoping.

Hope.....or Not

I found out a few things on June 11.  One being that my heart had never been broken before.  I have never felt that pain before.  After crying my eyes out all day Monday and creating the worst headache imaginable---Tuesday came. 

I read those papers top to bottom about 50 times.  I started doing research.  I read success stories.  I read sad stories.  I searched hospitals.  I found some hope somehow through this.  Babies can survive this!  Maybe my baby can survive this.  Maybe I can still make her bedding?  Maybe I can still paint Ryder's old room pink.  Maybe...........?

My dr called me to let me know that I have an appointment with a specialist at Texas Tech in Lubbock on Friday, June 22.  I ask her a few questions that she didnt really know the answers to.  She said that I should know more after my appointment in Lubbock.  It sounded like I will not be delievering in Amarillo though.  Maybe they arent equipped for all that Sunni will need upon arrival. 

In my travels on the web I found that Houston's Texas Chilren's Hospital is ranked #2 in the nation on neonatalogy.  I have high hopes of finding the perfect surgeon for Sunni.

So while I have gained some hope that I will be bringing Sunni home I still have those doubts.  Shawn says I am a pessimist.  Maybe.  I like to think of it as being a realist.  I told him I would rather be prepared for the worst and the best happen, than be prepared for the best and the worst happen.  And its real easy to say postive things but its really hard to actually believe them.

Do I prepare for Sunni to come home?  Do I go ahead and decorate her room just the way I wanted it?  Do I attempt the impossible and learn to sew?  Do I buy all those things a little girl needs and wants?  I am not worried about the money that would be lost if the worst happens.  I am worried abot coming home to an empty pink room with no baby.  I am afraid.

While hope has come a long way since Monday I am still over here setting in sadness and grief and I am not liking it a bit.  I have so many unanswered questions that might not be answered til mid October. 

Im having a hard time with the fact I wont hold my baby when shes born.  She will be whisked away blue and having trouble breathing while she fights for her life.  I can see tubes sticking out of a little baby while she sets in a box awaiting to have surgery to put her intestines back in the right spot so that shes able to breathe.  This breaks my heart into a million more little pieces.  I cried during my boys shots and PKU's.  How am I supposed to be strong for her?

I know I have a huge support system out there.  A lot of prayer warriors.  I have been praying constantly.  I know I am needing prayers for my mind to change.  I want to be more positive. 

Heart Shattered

I scheduled an appointment for 8 am!  In Amarillo!  Awesome.  In summer I try to make a habit of not getting up before 9.  But this day was special so I got up pretty easily and without complaint.

Shawn was working nights so he wasnt able to go.  The boys were pumped though.  They have loved seeing Sunni both the times before this one. 

We make it to the sono (on time--HOORAY!).  I think I must have been the first appointment at 8am so we didnt have to set in the waiting room but for 2 minutes.

I layed on the table.  The sono lady asks if I want to know what I am having.  YES!  I cant wait to go shopping!  (In fact, I have plans to go look at fabric RIGHT after you tell me its a girl.)  I ddnt say that outloud.  Sunni just happened to have her butt right up in the air and the first thing the lady said was "It's a girl." I was elated.  I could finally believe it.  There was no mistaking the "hamburger" this time.  I could now start that blanket of pink and teal that was in my dreams ALL night the night before.

She kept on looking at all the different body parts.  I just watched in awe.  The boys were getting a bit antsy.  Their attention span is all of 5 minutes.  Finally she stood up and said, "I am seeing something that I want the other sonographer to look at."  I was a little alarmed but not much to really think anything of it.

The other sonographer came in and looked for a few minutes.  I couldnt tell what it was they were seeing.  I didnt even know what part of the body they were looking at.  She puts the wand down and says, "Whitney, what we are seeing is an issue with the babies tummy.  I am going to go find a dr to come in and look at this."  So that is when I started getting scared/worried.  I dont see an actual dr there, I see a nurse practitioner, which was my option.  She happened to not be there.  As luck had it that day, not a single dr was there either.  All were in surgeries/births.  They cleaned my belly up and sent me out to the waiting room to wait for a dr to arrive.  

The boys were kinda fighting and getting restless.  I just wanted to get out of there.  I wasnt sure I wanted to hear the "news" anyway.  I contemplated just leaving.  When I was about to make that choice they called me back.  A nurse practitioner (not mine) was in the room. 

She introduced herself and then shattered my world all in one moment.

"Your baby girl has what is called a congenital diaphragmatic hernia."  And after that I heard a lot of blah, blah, blah, it will have to be corrected with surgery upon birth, blah, blah, blah.  She showed me a bunch of paper work on it.  I tried to focus.  "Do you have any questions?"

Uhmm, can I get out of here before I lose it?  Thats what I wanted to say.  I said no.  I dont remember details of getting into the car or buckling the boys up before I lost it.  I still was not sure what all of this was about.  I started reading a little bit of the papers.  I just wanted to be at home where I could cry my eyes out without everyone starring at me.

The drive home took forever.  I had every bad thought imaginable running through my mind.  In my mind all I could think about was that my dreams of having a little girl had been shattered on this day that I had been waiting on forever.

No more need to search for bedding, the perfect fabric, learning how to sew or make bows.  No need to buy furniture or put the boys in bunk beds.  None of that was needed anymore.  My heart was broke.

Pregnant!--Its a GIRL!....?

I'm not really sure where to start this blog.  So maybe the first might just be a ramble.

I have two awesome little boys and an amazing husband.  We didn't feel quite complete as a family without a little girl.  We decided to try one more time for her.  I got pregnant in January 2012.  Immediately I started praying for a little girl.  I knew it wasn't up to me and that I would welcome another little boy with open arms just the same.  In fact, I was pretty sure it would be a boy because my family is full of them.

I had my first dr's appointment on spring break in March 2012.  They did a sono which showed I was due on October 18, 2012.  They scheduled the next sono for June 11.  It would be the full anatomy and gender screen.  March to June seemed like a lifetime.  I did not want to wait that long so we decided we would go to Stork Vision as soon as I turned 16 weeks for find out the sex of the baby.

May 9th finally came.  I was so nervous I thought I would throw up.  I even thought about cancelling the appointment.  I told Shawn he wasn't going to come in with me.  I didn't want anyone to see the disappointment I would have with boy news.  I feel ashamed that I thought that way and I tried really hard not to.  Shawn told me from the beginning that it was a girl.  And there was no doubt in Ryder's mind either.  The name Sunni came up in baby name ideas at the very beginning and ever since then Ryder was stuck on Sunni.  That made Cooper call her Sunni, which also had Shawn and I referring to the baby as Sunni.  This was well before we knew she was actually a girl.

So back to May 9th.  We went in the room and the lady looked at the boys and said "I bet you are hoping for a little girl."  I told her that was a good guess.  She told me that she was going to have to do some dr pictures first so it would be a few minutes before she looked to see what the baby was.  What seemed like FOREVER went by and in my head I remember thinking, "This lady is trying to find a gentle way to say, its a boy."  Finally she wrote on the screen "ITS A.......(paused) GIRL!" 

I felt a frog in my throat.  I thought I would cry, but I didn't.  Instead I ask her how sure she was.  She said she had been doing it for 10 years and had never been wrong and that she didn't plan on starting today.  I was SO happy yet unbelieving.

Over the next few weeks I started buying small things for Sunni like onesies and outfits and cute little shoes.  I dreamed about her nursery almost every night.  I searched bedding and crib sets for hours and hours and hours.  I wasn't sure what would be PERFECT for my little girl.  I started looking at boutiques on facebook every single day dreaming of what my Sunni would look like in one of those cute lace rompers one day.

I was not going to buy anything extravagant until AFTER June 11, the day of my next sonogram that would prove Sunni to be a girl.

I had decided I was going to sew ALL of her bedding, curtains, etc all by myself (although I have never sewed anything other than a pillow in home ec in the 7th grade).  I talked to my mom about how to do it and discussed my ideas with her the night before my sono.  That night I dreamed ALL night about sewing the stuff and what other colors I needed to add.  I could barely sleep because of this.  It was more of a stressful dream than a pleasant one.

I am not a super crafty person---and I don't have the first clue about girls.  I was never girly.  But I had plans to learn to sew everything from bedding to rompers.  To learn to make all the bows and jewelry those boutiques charge mega money for.  I was determined to conquer my uncraftiness.