Thursday, July 19, 2012

Thanks everyone...

I just wanted to say thank you to everyone who has contacted me in some form or fashion and then I would like to apologize to so many of you that I have not responded too.  Please know that I have the best of intentions.  I read what you write (email, facebook, comments on here, phone calls, etc) and I mean to get back soon but things never slow down I guess so it just doesn't happen like I want.  So I just wanted each and everyone of you to know that I do read what you send over and I appreciate all kindness, thoughts, and prayers.  

I will be 35-1/2 weeks pregnant tomorrow and she will be here very soon..  If she is not here by 39 weeks then they will induce me.  My last two children were here around 38 weeks so the countdown begins.  We had a cardiologist appointment and high risk appointment (with ultrasound) this week plus my three youngest had a dental cleaning.  I just get worn out so easily now and this heat doesn't help.  

The pediatric cardiologist said that her heart is still functioning and appears the same as each time before (which is as good as we can ask).  There is no leakage, her heart is growing with her body, and it is functioning the best that it can given the hypoplastic left heart and chromosome concerns.  The ultrasound still shows nothing new but they always remind me that ultrasounds are not 100% accurate (and some things are too hard to see until they are born).  They are doing weekly biophysical ultrasounds to check for her breathing, check her heart, and they do movement counts.  She may get her measurements and weight checked this upcoming week at 36 weeks pregnant (or it may be the following week at 37 weeks pregnant).    

I guess that is all for now.  Things are good in the sense that nothing new is good because I was getting hit with something new all of the time in the prior weeks.  She still has her diagnosis that we will face and the three open heart surgeries plus the unknowns of her chromosome concerns.  I won't stop having hope, faith, and love that she will survive and have a happy, functional life.  Thanks for reading!!  Thanks for everything!  

Tuesday, July 10, 2012

The Swan, the Snake... our kids...

Kids night at Chick-Fil-A:  Blake & Makayla got the coolest face paintings.  I present to you a swan and a snake.  Ethan did not want one and Sarah was not with us but she would have never gotten one anyways.  :)  

Now I hope you enjoy a video of Blake's new favorite song:  We Are Young - Blake is singing with Makayla caught singing parts of it too.  For those of you who don't really know my daughter Makayla, she is super shy so it is a miracle that she let me get video of her doing this.  :)  I had to use a shortened version of the video so Ethan is not in this one (but he asked that he not be in it anyways).  So here is the Swan and Snake's first music video :).. ha ha:

**IT WON'T WORK**.. SORRY!!  It is really cute.  I will continue to work on it and I hope it will work soon.

I will also tell you that Ethan is doing well and having a great summer for a 10 year old.  He still enjoys the summer even when the weather is 105 degrees.. crazy kiddo.  :)  He will be a 5th grader next year which is crazy.  Blake will be in 2nd grade and Makayla will be in first grade- it is all too crazy to think about!  :)

I want to brag on Sarah for a minute- she is 16-1/2 (right Sarah) and she will be in the 11th grade at my alumni high school.  She got 4 A's and 2 B's this past school year and today we found out that she got a "3" on an AP end of year exam which means she can get college credit for her World History class.  We are so proud of all of them!  We have some great kids!

Now if I can just get that video to work.. hmmm....

Neonatologist Appointment

So after our high risk appointment (almost 2 weeks ago), Ricky and I went over to the NICU to meet with one of the Neonatologist who will be taking care of our baby girl after she is born.  Her name was Dr. Lia Gravari and she was so nice, detailed, caring, and wonderful!  She was also pregnant and due August 1st.  I loved her so much but there is a chance will won't see her again because she may be on maternity leave when we have our baby.  :)  We didn't know what to expect because we did not know if we would just be introduced or what our meeting would be like.  She actually took us into a private room and detailed what to expect starting at labor so she spent at least 1 hour explaining everything to us.  Here is an overview of what she said:

When I go into labor there will be 2 Neonatologist (one experienced and one gaining their specialty as a Neonatologist) plus they will have two of their nurses there.  I will also have my high risk Dr and nurses there too.  So it will be a full house and this room is not very big.  :)  She let us know that babies with heart conditions may have a saturation as low as 75% when ours is 100% (think of our breathing/oxygen and a pulse oximeter reading).  She said that they will not give a heart baby oxygen if their range is in their normal range of about 75-80% because if they do they will flood their lungs.  She said you don't want to give them to much oxygen because their heart doesn't function like ours so above 80% is starting to get too high for heart babies.  They will have a pulse oximeter to read her oxygen levels on her wrist.

The Neonatologist will be her main doctor and they make the decision on how long she stay in the delivery room with Ricky and I after birth.  This length of time determines if we get to hold her, how long we get to see her, or if they will just rush her out of the room to the NICU.  Dr. Lia told us that she knows how important it is for parents to hold and see their babies so they will do as much as they can in the room with us to allow us as much time with her as possible.  She said the first call after delivery will be to the cardiologist so they can come do the fetal echocardiogram.  They will give her an IV line through her umbilical/ belly button area.  Two tubes (if I am saying that right) will go through her umbilical line because they serve different purposes:  she will get her blood pressure checked, given sugar water, and calcium (because the heart loves calcium she said).

They will also start the prostaglandin for her heart which will help her heart valve stay open until they perform surgery.  This medicine is VERY important for her to survive until surgery but it does have a side effect:  at first it may make the baby not want to breathe so they give her a second medication to help that which is caffeine like you or I would drink.  The caffeine will stimulate the breathing center so it will be very helpful for her.    

They will be doing a head ultrasound, fetal echocardiogram, a lot of blood tests, have the geneticist exam her for abnormalities due to her chromosome issue, they will consult with a hematologist (because I have a blood clotting condition and they need to check her for this before they perform surgery), they want to do other ultrasounds to check her other organs, etc.  She will have so many tests, scans, doctors, specialists, etc visiting her- especially early on.  Feedings for her will start on her 2nd day of life.  She said that babies who eat better before surgery (so the first 5-7 day) typically are better eaters after surgery.

Her first surgery is ideally about 7 days old, it will take about 4-6 hours to complete, they will have a nurse practitioner update us about every hour on how she is doing during the surgery, and they try to not put the baby on ECMO (for this situation the ECMO is used on infants  who are extremely ill due to breathing or heart problems.  The purpose of ECMO is to provide enough oxygen to the baby while allowing time for the lungs and heart to rest or heal).

After her surgery she will go to the PICU and she will have a different set of doctors for this area.  We have not met these doctors and we will not meet them until she is there or right before (I'm guessing).  For the first 24 hours after surgery she will have a Doctor stay with her in her room to really watch her blood, oxygen, blood pressure, magnesium, etc because the first 24 hours are the most critical after surgery.  We can stay in the room as well.

She wanted us to be prepared for something that we will see after her surgery and we weren't really expecting this:  her chest will be left open for the first 2-3 days after surgery so this is a hard thing to see she said plus her chest will be covered but we can still see everything including her heart beating.  Wow!  That will be hard!  Her chest will be open because they need easy access to the heart in case anything happens and she will have a lot of swelling so they don't want to close up her chest until the swelling goes down.  She will also get a PICC line because it is closer to the heart but that seems to be temporary.

So that was the overview of what she told us.  I appreciated her bringing all of it together for us so we know what to expect.  This appointment made everything very real for Ricky so it was hard for him, especially hearing about her chest being open.  Ricky is not good about being in hospitals, around blood, or anything medically related so this whole scenario is very hard on him.

So if you can imagine how mentally exhausted I was after two days of big appointments like this:  NICU/ PICU tour, first meeting with the surgeon, high risk maternal fetal medicine OBGYN with ultrasound, and the Neonatologist meeting.  It was hard.  Sorry for the delay in writing on the blog but I needed the temporary mental break.  :)  I am now 34 weeks pregnant as of today so things are getting closer and closer- she will be here soon and if she is not here by 39 weeks then they will discuss induction.  My last two children came on their own timing at 38 weeks and my first pregnancy with Ethan came at one day shy of his due date- so we will see.  :)  Thanks for reading!  

P.S.  The neonatologist was so nice that she even gave us her cell phone number when we were done and said that she knows this is overwhelming and she wants me to keep in touch or call her with any questions because they are here for us.  She even gave both of us a hug!  She was just so nice and helpful!

Appointment with the Pediatric Cardiovascular Surgeon

We were scheduled to meet with the surgeon at 12:15 and then tour the NICU afterwards but that was changed because the surgeons were in surgery longer than expected so we didn't meet until about 3:15.  We will need to get used to that because there were multiple other families there in the same situation so we all just came back when the surgeon could be in the office.  I would rather the surgeons take their time on surgeon for a child that needs it than rushing over to our appointments anyways.  

So we toured the NICU/ PICU first (which I talked about in a recent post) and then we came back to meet with the surgeon Dr. Austin.  We had already met with the Pediatric Cardiologist twice so we had a good understanding of what to expect during surgery.  The Cardiologist had previously drawn pictures for us so we discussed the pictures with the surgeon.  He discussed the three upcoming surgeries and what to expect for our baby.  So here are some of the main points (some new and some we were previously told):  

*They want the first surgery is called the Norwood and they want it to happen ideally between 5-7 days after birth (but no later than 10).  
*The second surgery is called the Glenn (between 4-6 months old)
*The third surgery is called the Fontan (between 2-3 years old)
*There are two surgeons who will work on here:  Dr. Erle H. Austin, III and Dr. Christopher Mascio- they are both great surgeons.  If she is born on an odd numbered day then Dr. Austin will be here main surgeon and an even numbered day means that Dr. Mascio will be her main surgeon.  
* They do about 10-15 of these surgeries per year (hypoplastic surgeries)
* Survival rate is 80-90% for best case scenario:  we were previously told 50% then 70% and now as high as 80-90% (that information came from multiple different doctors),  the best case scenario means: the baby is full term, heart is strong with no additional defects found, no other physical or developmental concerns with the baby, and no chromosome issues
* So I don't know what her real survival rate is because of the chromosome 17 concern but I will take higher survival rates :) 
* This is the only time we will have a meeting like this before I go into labor or have her.  After she is born the pediatric cardiologist will come shortly after birth to do a fetal echo-cardiogram on her to really check out her heart.  They do the best they can to see her heart while she is inside of me but they can't get an absolute clear picture (not like they can when they can hold the doppler directly on her body).  This clear picture will give them everything they need and if not then a cardiac cath will need to be done but they think the doppler will be enough.  
* We were told that no matter what you call it (hypoplastic left heart syndrome or something else), it all has the same outcome which is the 3 open heart surgeries mentioned above.  So we will see what the doppler finds after she is here.  
* Surgeon says a rule of thumb is "bigger the babies are, the better they do" (for surgery, survival, etc) and we heard this phrase a few times from different people during the multiple appointments we had.  The surgeon prefers that she is at least 6 pounds or higher for the three surgeries and if she was 4 pounds then they would not do the Norwood but rather a hybrid procedure (which is not as successful as the 3 separate procedures).  He said low birth weight is just a big risk factor. 
* Feeding issues are not uncommon for hypoplastic babies (and maybe heart babies in general?) and about 50% of them require a g-tube through their stomach for feeding. 

We also learned the following:  The first time that all 3 procedures (Norwood, Glenn, and Fontan) were performed in the stages that they do now was completed on a child for the first time in 1985.  He told us that so we know that the oldest survivor is about 25-27 years old so the future beyond that is not exactly clear for these children.  He said that it would be fair to say that life expectancy for these children are not average and really their life expectancy is unknown.  Some of these individuals do well and others not so well.  Some need heart transplants and some haven't needed them (yet).  He said that one thing we should know is that our baby will never have a normal heart and she will only have one pumping chamber so as she gets older she can have complications.  He said that these children can live a normal life (yes possibly he said), maybe take 1-2 pills (at least) per day for their entire life, won't be a competing star athlete, and yes our baby may get tired but her body will tell her when she needs to rest (or take it easy) so we won't really have to worry about telling her to slow down (because she will do that on her own- her body will make her).

Dr. Austin was VERY nice, helpful, and answered our questions.  He never acted like our questions were stupid and that made me feel better.  They have great reputations and I was glad that not only are their good surgeons and good to their patients but they are nice to the parents too.  :)  

So this appointment took place the same day as the NICU/ PICU tour so it was a very informative yet information overload day.  I still need to write about our Neonatologist meeting plus the sibling class.  Thanks for reading!  :)       


Monday, July 9, 2012

Most recent high risk appointments at 32 and 33 weeks pregnant with ultrasounds

This will be quick so I will go ahead and write this too..  :)

I am now being seen weekly by the high risk Maternal Fetal Medicine doctors.  I was switched to the downtown office because it is connected to the hospital where I will deliver (and the hospital where she will go after delivery).  I am officially 33 weeks now and I will be 34 weeks tomorrow (out of 40 weeks) so she will be here soon.  I am getting nervous, anxious, excited, and much more.  :)  I go back to the high risk doctor for another visit and ultrasound this week and every week until I deliver.  I will probably be a wreck when I go into labor because we don't know exactly what to expect and neither do all of the doctors.

So both of my appointments have went well.  She is still measuring right on track:  50th percentile for growth, no new markers (or signs of other things on the ultrasound or what they can see), no fluid on the brain from what they can see, her head is growing right on track with her body (based on what they can see), symmetry of her body still looks good from what they can see, no club feet, etc.  This past week she appeared to be 4 lbs 15 oz which again is right on track.  The surgeon is wanting me to make it to at least 38 weeks because they all have said "the bigger she is the better her odds or chances will be for survival".  They want her to be at least 6 pounds at minimum is how I understood it.

She is moving a lot, she is practicing breathing (diaphragm moves well), we have seen her have hiccups on the ultrasound, heart problem is the same but her heart is growing (and function is as good as can be expected with her heart condition), amniotic fluid looks good, she is head down, and she is very stubborn.  :)  She always covers her face with her hands so they said "she just wants to remain a mystery".  :)  The one time she didn't cover it they got the 3d ultrasound pictures of her face that I posted earlier on the blog.

So I will continue to hope and pray for good ultrasounds weekly until she is here.  On a fun note.. that said that she already has some hair that shows on the ultrasound.  :)

So things are stable which is good but the reality is that everything still exists- her hypoplastic left heart syndrome and chromosome 17 concerns.  I am VERY hopeful but the road ahead is still uncertain and we all can't wait to meet her (when the time is right) to see and how she will do (this is for the doctors and us).

Thanks for reading!  More to come soon- I still need to write about the surgeon appointment, Neonatologist meeting, tour of the hospital where I will deliver, and the sibling class that was very interesting for my kiddos.  :)

Recent appointments: We will start with the tour of the NICU & PICU

Hello everyone!  Sorry for the delay but about 1-1/2 weeks ago we had A LOT of appointments (emotional and very detailed) so I just needed a mental break before writing or talking about them.  So I will start with our NICU/ PICU visit:  

The NICU is where our baby will go very quickly if not immediately after birth:  
"Neonatal Intensive Care Unit (NICU) is an intensive care unit specializing in the care of ill or premature newborn infants.  A NICU is typically directed by one or more neonatologists and staffed by nurses[1]nurse practitionerspharmacistsphysician assistantsresident physicians, and respiratory therapists."   

The PICU is where she will go after her first open heart surgery:  
"pediatric intensive care unit , is an area within a hospital specializing in the care of critically ill infants, children, and teenagers. A PICU is typically directed by one or more pediatric intensivists or PICUconsultants[1] and staffed by doctorsnurses, and respiratory therapists who are specially trained and experienced in pediatric intensive care. The unit may also have nurse practitionersphysician assistantsphysiotherapistssocial workerschild life specialists, and clerks on staff although this varies widely depending on geographic location. The ratio of professionals to patients is generally higher than in other areas of the hospital, reflecting the acuity of PICU patients and the risk of life-threatening complications.[2]Complex technology and equipment is often in use, particularly mechanical ventilators and patient monitoring systems."

The PICU is where she will go after her first open heart surgery.  So she will be in the NICU for around the first 5-7 days of life and then her length of stay in the PICU will depend on how she is doing after surgery.  After the PICU she will transition back to the NICU until she is discharged to go home.  We were advised to expect her to stay in the hospital for at least the first four weeks after she is born.  Some babies go home after around 4 weeks while others can have a lot of complications and stay months.  

The manager giving the tour was so nice and helpful.  She was very thorough and made sure we understood everything.  She gave us a NICU binder to keep and we are supposed to bring it when she is born.  We can keep information in there and they will give us educational topics about her condition to add to the binder throughout her stay.  The binder has a lot of helpful information and it covers almost every topic imaginable about the NICU- visits, rules, what to expect, etc.  

So I was strong and handling it just fine until she so kindly hands me a "Snoedel".  This is an aromatherapy blanket/toy for the baby and it holds the scent of the Mom.  So I am supposed to sleep with it for a few nights before I deliver so she can have the scent with me at all times.  So I was still not crying yet but that did make me somewhat emotional on the inside.  She then showed me where I will breastfeed, where the waiting areas are, where we will sign in, where we will wash our hands (scrub up), etc.  Then she took us into the Cardiac room of the NICU.  
This is where I became emotional... I just couldn't help it.  There were about 6 babies in this room with all having visitors (a Dad holding a baby with no wires/tubes on them, another person standing over a baby- unable to hold them, a baby that had a curtain around them with examinations/ tests, doctors, x-rays, etc starting, and so forth).  The room is not very big so it is not like I expected.  

I was introduced to one of the nurses who will help my baby and she hugged me.. I started to cry.  I said "sorry.." and they said "oh no, this is emotional and tough".  I was told the nurse was a hugger so she came over and hugged me.  She said that she will be there for many more hugs when I need her.  :)  

We were told that our kids can color pictures that will be hung by her spot, toys can be brought as long as they can be sanitized/ washed, pictures of us can be brought to be near her, etc.  It looked like there was one rocking chair and one regular chair that stayed by the baby.  There is no more than 2 visitors at one time for each baby (except for siblings).  So all of our kids are allowed to visit at the same time because they don't want the family to be separated any more than we have to be.  (Of course the visits from the younger ones won't be very long because there are a lot of rules).  :)  It was just nice to hear that they would be able to meet her while she is there because I was worried that they may not be allowed to visit her while she is on the hospital (which would mean they wouldn't meet their new sister for almost one month).  We do know that we may not get to hold her until after her first surgery so who knows when this will be allowed.  That will be hard. 

I will write more soon- I need to tell you about the two high risk appointments w/ ultrasounds, the first appointment with the pediatric cardiothoracic surgeon, and the meeting with the Neonatologist (doctors who will take care of her while she is in the NICU).  

I can't tell you how nice everyone has been which has been so helpful.  At least the people who will be providing our baby care is loving and caring so that gives us comfort.  Of course you always hope they will be but we didn't know until we met them so that was reassuring.  

Thanks for reading.. more to come soon!  

Tuesday, July 3, 2012

I believe...

Within the last week, we have toured the NICU & PICU, met with the pediatric cardiothoracic surgeons, met with the Neonatologist (NICU pediatricians), went back to the high risk doctor (plus got another ultrasound), the kids attended a sibling class, and I toured the hospital where we will deliver.  I know people are waiting for an update so I am sorry but I will write about everything soon.  Some of these appointments were very emotional and it just made everything more real.  I am now 33 weeks pregnant today so we are getting closer.  I will write about everything soon- please be patient with me for an update on everything.  :)  I will leave you with a portion of a song that my kiddos and I really like...  I really like hearing it and singing it now days.  :)  Have a great week!  

I Believe I can Fly

But now I know the meaning of true love
I'm leaning on the everlasting arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh....