CHD Awareness Month

Hospitals, Holidays and Hearts

I swear we don’t live at Phoenix Children’s Hospital, but it seems that whenever I find time to post an update….we are at PCH.  I will get to all that but first allow me to backtrack so this record has some sort of order. 

I believe the last time I posted an update we were re-admitted to the CVICU at PCH because Alessandra had a chylothorax effusion (I have been saying ‘infusion’ instead of ‘effusion’ for the past month, I only recently realized that was incorrect.  I hope nobody noticed.)  The EFFUSION was caused by her heart surgery and fluid was accumulating in her chest cavity due to some cut or disturbance to her lymphatic system.  Several steps were taken to remedy this: 1) Diet change from breast milk to a gross non-fat formula... Didn’t work. 2) Aggressive diuretics to flush the fluid out of her system....  Didn’t appear to work.  3) 8 days NPO (without food) so that she can heal without stimulating the thoracic ducts while processing fat intake....  Didn’t work.  4) A procedure called Pluraldeses (sp?) to expedite the healing process by swelling the chest cavity with a chemical inserted by chest tube. ... Sorta worked. 

The pluraldeses (sp??) procedure was done a few days before Christmas and we expected good results.   A few days after the procedure Ali’s x-rays looked great and Dr. Nigro (Ali’s surgeon) surprised us by releasing us on Christmas Eve.  That was the most amazing gift ever! We were no longer hostages and were free to spend time as a complete family.  For so long Mark and I had to trade shifts. We would only see each other for a quick switch-off and poor Bailey really missed her sister (RSV restrictions at the hospital will not allow kids under 12 to visit).  The holidays were so wonderful and Ali’s development was rapidly catching up.  She was interacting more, sitting upright on her own, rolling from tummy to back.   Her being home makes such a difference.  The past month of my life has been so special.  It really brought us back to the basics and it’s a lesson I want to carry with me.  Sitting around the dinner table each night with the fam is the best thing in the world. Even if the baby is crying and throwing her food.  Even if the pre-tween is complaining about how gross squash is.  Even if I know there is a million things I have to do once dinner is over…It’s a few moments out of the day when I feel restored and we are all where we are supposed to be.

As outpatients we were not out of the clear. Alessandra had weekly x-rays and doctor appointments to monitor the fluid.  Unfortunately, the fluid came back.  At first we were watching it and treating it with diuretics, but no real progress was made.  She seemed fine so the plan was to wait it out and continue with the diuretics.  Well, for the past week her breathing was becoming more rapid and she was doing more chest-breathing instead of tummy-breathing.  Her cardiologist was keeping close tabs on her and her breathing pace was to be expected considering the fluid in her chest.  Yesterday morning we noticed she was slightly grunting with each breath, which didn’t seem right.  It’s hard to tell if she was coming down with a respiratory sickness (ugh, I can SEE the germs crawling everywhere this season), or if the fluid was giving her trouble.  We called the doctor and it was recommended that we admit Alessandra back to the CVICU for observation.

Coming back to the hospital is very familiar.  We know and love all the staff and doctors in this unit.  They are all polite and accommodating.  The doctors and nurses go out of their way to answer any and all questions.  Ali is in good hands.  She’s a rockstar when she’s here.  She has people standing on their ear to make her smile.  She won’t give it up too easily, although I know she is secretly amused.  For her, the poker face is important.  She’s learned that someone can be her friend one second and then poke her with a needle in the next second.   She is very keen on the subject of human behavior.  In fact, last weekend we took her to the zoo for the first time and when I approached an exhibit with her on my hip she had no interest in looking at the animals, but wanted to look at the people looking at the animals.  I think she will grow up to be a lady of science.

Anyway, so we are back at the hospital waiting for the next step.  It is likely she will get cathed tomorrow morning to verify that the fluid is chyle and not due to a blockage in her cardiovascular system.  I’m a little nervous for this because her last cath brought out the Hulk.  I think we know what medications work, and she is much more stable since her surgery so that incident shouldn’t repeat itself.  What I’m REALLY hoping for is that the IV Lasix did the trick and we will get an x-ray in the a.m. that will say all of the fluid was miraculously lifted and we can go home without any invasive procedures!  I know it’s a long shot but I have to always hope for the best.

On a closing note, CHD awareness week is Feb 7^th through the 14^th and I plan on celebrating the heck out of it.  I hope that you will join me.  CHD is such a struggle but treatment methods and surgical practices have come such a long way.  It was only a few decades ago when babies like Ali wouldn’t have had any chance at all.  Practices that began with baboon heart transplants for single ventricle babies have evolved into some very efficient surgical plumbing.  I’m so grateful for the research that has been done and there can always be more.  Spread awareness!!!

 ~Melissa

Here we go again...

As I type this I’m sitting in an empty hospital room.  The only other time I have sat in this empty room was when Alessandra had her heart surgery.  All the same feelings from that surgery have returned.  The stomach twisting anxiety, the slow moving clock and I’m holding on to the only thing I can to keep myself together: an unshakable trust in God.  I have to trust.  

I know it’s been awhile since I posted so I’ll try to bring you up to speed.  After we were discharged from PCH on the 12/1 we had several follow up appointments as outpatients.  One of those appointments was an x-ray that revealed some fluid in Alessandra’s chest.  Return of the chylothroax.   She was admitted back to the CVICU to have a chest tube placed and the fluid drained.  Chylorthorax is a thick milky substance that is produced by the lymphatic system. Sometimes, during heart or lung surgery, the “vessels” that this liquid travels through can be cut causing a leakage into the body.  I added the quotations to vessels because I believe they are more like canals or tissue grooves and not necessarily a vessel.  Anyway.   The issue with her chyl was caught shortly after surgery, but the drainage tapered off, the tube was removed and we were sent home with an ng feeding tube and some non-fat formula that we were to continue for 6-8 weeks.  However, since being readmitted to the hospital the chyl output is still high. Too high.  Ali's cardiologist and surgeon discussed an aggressive measure to remedy this.  The decision was made that she would be off formula and completely NPO for a period of a few days.  A catheter will be inserted into her femoral artery and she will be given IV nutrition for several days. 

Right now she is back in the lab, being put to sleep so they can insert this tube.  Of course before we sign the consent form for any type of procedure, the risks are discussed which usually leaving me white in the face and trembling as I sign the forms.  The risks for this procedure include blood clotting, and she would not be a candidate for the medicine used to treat blood clots because of her physiology. It really sucks.  I didn’t go to medical school and for this particular procedure the decision was made quickly. I didn’t have time to google or chat with fellow heart moms.  Not that the internet and the experience of others makes me a qualified mom-doctor, but it helps me to know what questions to ask, what to expect and sometimes what doctors to specifically request.  This was one of those times where I have to just trust.  Trust that the doctors know what they are doing, trust that they will handle her with the same care they would use for their own children and trust that God has a plan for us in all of this.  I don't know what else I can do.

This is all to solve priority problem number 1, her chylotharx.  Unfortunately that is not the only after surgery side-effect that we are dealing with.  Ali has been throwing up a lot since surgery.  Several times a day.  It appears to be a mystery since no known cause can be identified. We worked with some GI doctors the other night and they did study and which found some surprising results.  Ali has malrotated intestines.  We knew during my pregnancy that with a heterotaxy diagnosis that this was a possibility, however she had an anatomy scan after birth and we were told that her intestines were fine.  We never thought to challenge that because her eating and gi functions were perfectly normal.  From birth to about 4 months she nursed like a champ, gained tons of weight and had zero gi issues.  Well, now we know. To make it more confusing, although her intestines are malrotated, they are not kinked in anyway and are therefore not her reason for vomiting.  Which is pretty obvious to us anyhow since she didn’t vomit prior to surgery.  This is all very confusing but it means that she may need an additional surgery on her intestines at some point and the cause for her throwing up is still unknown.

The past few days have been so horrible, and not just for us.  An entire nation weeps this weekend over recent events.  The uncommon desert rain outside seems fitting.  Things feel dark and sad.

A New Heart

 I have been meaning to post something about the outcome of Alessandra’s heart surgery but it’s been hard to find the time.  Her surgery was last Monday (11/19) and everything went perfect!  Her surgeon, Dr. Nigro, came to the hospital on the Sunday before to go over some final details and to answer any questions we had. He came into our hospital room when I was getting out of the shower. I thought I heard his voice so cut myself shaving, threw on some clothes and swung the bathroom door open (I almost slammed him with the door…{gaaah!}).

The entire surgery lasted about 3 hours.  It was the longest 3 hours of my life but we had a ton of support from family that showed up at the hospital to wait with us.  The procedure was better than expected; Ali didn’t need bypass or any blood products.  We were able to see her shortly after the operation and she looked so beautiful.  Her lips and fingernails were so pink!  CHD babies tend to be dusky in color and I had grown so accustomed to her purplish tint that it was incredible to see my sweet baby peacefully sleeping with her new rosy complexion.  A few hours after the operation she was extubated and breathing on her own without trouble. 

For several days the amazing and brilliant nurses at PCH have carefully managed the worst of her pain.  We are still in the hospital as she recovers but she has been weaned off most of her pain meds.  She is now down to just Tylenol and ibuprofen (along with heart meds and antibiotics, of course) and is doing well.  She smiled for the first time today.  She is so strong!!

The only complication we have had is with her chylothorax.  During surgery, her thoracic duct must have been disturbed and now she has a leakage of chest fluid.  This is a common issue after heart surgery and she still has a chest tube in place to help drain the fluid.  The sad part is that the treatment for chylothorax is a diet of non-fat formula for six to eight weeks.  This means that she can no longer take in breast milk. I wasn’t ready to stop nursing and the Enfaport formula doesn’t seem to sit well with her.  I’m still going to try to pump and store breast milk, hopefully my supply can last several weeks this way.  Also, since Ali isn’t quite meeting her feeding quotas she needed to have an NG tube placed (a thin tube that goes through the nose and into the stomach) for feeding.  She hates it and I feel so bad for her.  I know she will get used to it the way she has had to adapt to all these terrible things.  Hopefully she won’t need it for long.

These past two weeks have been so rough for Ali.  Thank you all for your healing thoughts and prayers.  They have been well received and she really needs them.  She now has a pretty neat scar down her chest that we are very proud of.  I will post pictures once she’s able to lose some of her leads and plastic accessories.  Poor kiddo has been through more in these few weeks than many will endure in a lifetime.  The fact that she is already smiling shows the magnitude of strength in the human spirit.  I’m so proud of her.  

I’m also so proud of Bailey! Poor kid has been living out of her backpack for two weeks being bounced around back and forth between my mom’s house and her dad’s.  Every time she visits she shows only her unselfish concern for her little sister.  What an adaptable kid, and if you don’t mind my bragging I want to mention that she got all A’s on her midterm this semester (!!!!!!!!!!!!!!!!!!!!)!

I can’t wait until we can all be home again.

~Melissa

night before

Ugh, this is tough.  We have been here nearly a week now and for the most part it has been HARD but not bad.  It's stressful seeing my sweet baby with oxygen tubes and a variety of leads taped to her, but once she got used to it so did I. It's scary when alarms go off every time she desats.  Its really scary to see her numbers drop to the 30s.  I can't imagine what that must feel like for her.   Until now I dreaded the idea of heart surgery.  I know she's ready for it and I'm ready for her to get better. 

Today was probably the hardest day since we have been here.  She needed her pre-op blood-work drawn which is extremely difficult for a baby like her. Not only does she hulk-out, but she's chubby and her veins are hard to find.  Another challenge is that her blood is thick and clots quickly rendering some samples obtained useless. She's had several rounds of pokes today and it was rough.

Like I said, it has been really hard but not bad.  When she desats, its just momentarily and then her levels climb back up.  She has been tested for viruses and infections, all of which have been negative.  Since being here she has reached new developmental milestones.  We are blessed that our experience here has been good.  I wanted to share this video.  I think it shows how amazingly resilient these kiddos are.  Ali will overcome this with squealing laughter.

I really appreciate all of you who have been following our journey and keeping Alessandra in your thoughts.  Tomorrow around noon she will have her heart surgery and I would really appreciate your prayers. 

Thank you <3
~Melissa

Waiting...

We have been back at PCH since Monday night.

So....what happened..??

To be honest, we are not really sure.  When we brought Alessandra home after her cath she just didn't seem right.  I know that she went through a lot and I never expected her to feel and act 100%.  Monday night we felt uncomfortable because her cry was new and she wasn't eating as much so we brought her to the E.R.  She fussed and cried non-stop from about 9:30 p.m. to about 2:30 a.m.  My head of new grey hair can testify.

Finally, around 4:00 a.m. we were moved to the cardiac floor.  She needed a dose of Versed to calm her enough to place an i.v.  Blood was taken and tested for viruses and/or infection.  Thankfully all samples have come back negative.  She's not sick, but she's acting sick.  She's ready for surgery.  That is the only explanation we have right now.

We will remain in the hospital until she has her surgery and for the duration of recovery.  We don't know when her surgery will be yet but my guess is that it will be early next week.

For now we sit here, watching her.  Keeping her calm with toys and Bob Marley.  She is on constant O2, but has thankfully grown accustomed to the tubes in her nose and the wires on her hands, feet and chest.  This has done wonders for her demeanor.  She's even starting to smile again.  It's been days since I've seen her smiling gums so this makes me very happy :)

~Melissa

That was scary.....

As many of you know, we went in to Phoenix Children’s Hospital for Ali’s cardiac catheterization procedure on Friday.  A cath is relatively risk free and it’s important to have done before heart surgery to make sure there are no surprises.  The procedure involves taking a thin flexible tube and inserting in through the groin and allowing it to travel through the heart.  The cardiologist is able to test blood o2 levels, measure pressures and get some decent pictures of the heart.  After the procedure there is usually some soreness which is treated with Tylenol. Piece of cake, right? …that’s what I thought too.

The cath procedure was actually flawless, we met with the cardiologist, Dr. Graziano beforehand and we felt really good about him.  He has 30 + years of experience and explained the procedure very well to us.  We met with the anesthesiologist before hand too and she was also a veteran doc.  The entire time Ali was in the care of some very gifted people.

One of the things that Mark and I always do when we meet new doctors and nurses is that we explain Alessandra’s personality.  She is very particular (which is a nice way of saying she’s a little cranky-pants).  We don’t let her cry at home.  She has trouble breathing if she cries too hard so we are at her service the moment she starts to fuss.  We know all the little tricks to calm her down and make her happy.  We have it down to a science because that’s the way it has to be with her.  If she wants to be rocked, then it has to be an upward and downward motion. Never side-to-side.  If she is rocked from side-to-side she is extremely offended and throws a fit.  If she’s hungry, we feed her.  No waiting, no sleeping through the night.  But like I said, we have it down to a science.  We know what to do to keep her happy and most days she won’t even cry at all.  Obviously, we can’t protect her from the doctors.  They need to poke at her and bug her.  I always feel better if I know that the doctors understand my baby.  I want them to know her personality because I feel like it should be an integral part of any plan.  Treat the person, not the symptoms, right?  She’s not just a baby with a heart anomaly, she’s Ali. She’s the boss.

I had to explain all of that about her personality because it’s an import part about understanding what happened the other night.

Before her cath she had to be put to sleep with anesthesia and was intubated.  After the procedure, which lasted about an hour.  She was extubated, carefully weaned off of the anesthesia and given Dexmedetomidine as a sedative to help her awake slowly.  This works fine for about 90% of the kiddos.  The moment the anesthesia started to wear off Ali was awake and fighting.  They doubled the dose of dex to calm her back down but it did nothing.  She was fighting to cry and scream, which made it difficult for her to breath.  Her o2 was dropping and her vitals reached a dangerous zone.  She was put on oxygen and we were called back to help calm her down. She had an oxygen tube in her nose, an iv line in her forehead.  Her eyes were puffy and her voice was raspy.  She was trying to scream but her throat was sore from the placement of the tube.  My initial instinct was that I wanted all the stuff off of her. I wanted the tubes out the iv out, I wanted hold her and rock her and calm her down. But that was way too risky.  It was a complete catch 22. She needed those things to monitor and help her, but those things were pissing her off and was the source of the problem.  She was so worked up that her o2 saturations dropped into the 30s which is a very dangerous level.  Some more docs were called in and she was given a dose of morphine.  Might as well have given her water. It did nothing at all.   The doctors were so perplexed and kept repeating that the morphine usually works.  They gave a 2^nd dose and to everyone’s astonishment (except for mine and Mark’s), it again had absolutely no effect.  I didn’t take a picture of her, I didn’t have to, I will never forget, but for those of you that are wondering this is what she looked like:

Finally they tried a sedative not normally used on babies because its more for anxiety in combination with some nitrous oxide and that worked well for her.  She fell asleep and started to stabilize.  Her sats still weren’t high enough so she needed a blood transfusion to help her out.  After the blood things quickly started to get better. She was weaned down to just Tylenol every couple hours and off the o2.

We were released the next morning and have been taking it easy at home ever since.  She’s not her normal self yet.  She still hasn’t smiled for me.  She has some extra fluid from the anesthesia and is coughing and sneezing a lot.  She was given a dose of Lasix at the hospital to help her release some of that fluid build up.  She’s not 100% yet, but she’s comfortable.  She’s eating well and sleeping a lot.  Her bruises are pretty gnarly and she has needle holes everywhere (that’s the downside to having a chubby baby, it’s too difficult to find her veins for iv placements), but she is home.

I really want to thank all of you for your support.  I know that we had a lot of people thinking about us and we felt the love when we needed it the most.  We had a lot of support and warm thoughts and I am so indebted to you all.

Ali before the procedure :)

Ali this morning :(

 

Much love,

~Melissa

We Have the Date

November 28^th.  Last Friday we met with Dr. Nigro, the surgeon that will be performing Alessandra’s heart operation.  The meeting went well, the tone was positive and we went over some things we already knew and discussed some new things as well.

Just to recap- Ali has a single pumping chamber, whereas a normal heart has 4 chambers.  Chamber walls cannot be built so instead staged surgery is required to redirect the blood flow to distribute oxygenated blood more efficiently than it does in her current state.  We have been told that the purpose of the Glenn is not necessarily to boost her O2 levels, but to take some of the pressures off of her heart so her little body wont have to work so hard.  This will be done by re-routing the superior vena cava into her pulmonary arteries.  Another interesting anomaly with Ali’s heart is that she has TWO superior vena cavas whereas the rest of us have one. Her heart will still point to the right (dextrocardia). 

Her surgery will be on November 28^th.  We will be at Phoenix Children’s Hospital while she recovers.  For recovery time we can estimate about a week.  I think she is going to rock through this and we will be there for the minimal time necessary. 

Bypass probably will not be necessary, but blood transfusions will be.  I need to verify that I’m the same blood type as Ali (I think I am? I should know this…) so that I can donate.  The surgery itself will be about three hours.  Her pain will be managed carefully.

Before her surgery (in the next 1-2 weeks, we don’t have the date for this yet) we have to go into PCH for a day or two for a cardiac cath procedure.  This will be done through her femoral artery.  She will have to be intubated and put under for this.

So….yikes.  This is a lot.  It will be the most difficult time of our lives but I KNOW she will be fine.  She is such a feisty little thing.  We can do this.

~Melissa

3.5 Months!

We have had so much going on since my last update on Alessandra.  Firstly, she is a laughing, smiling 3 ½ month old!  Her personality has developed greatly and she is so sweet.  Her cheeks are HUGE and her arms and legs are chubby.  She’s starting to grab at toys and bring them to her mouth to chew on.  She smiles and laughs when she’s in a happy mood.  She screams with rage when things don’t go her way.  Needless to say, she keeps us on our toes.

A few days ago we had her cardio appointment and she is weighing in at 12.5 lbs and her O2 range is still in the 83-86% limit.  Her lungs sound great and she is outwardly a perfect picture of health.  This time we left the office with some homework: 1) schedule her monthly RSV shots and 2) Schedule a consult with her surgeon, Dr. Nigro.

We are getting close to surgery time.  We don’t have a date but it’s likely to be in November.  This part is hard for me to write about, it always is.  It’s easy to brag about how healthy she seems and how cute she is.  It’s difficult to write about the nightmares and fears that I have…so I wont.  Instead, I’m going write this because I believe it: She will be strong and fearless.  She will get through surgery and she will recover fast.  It wont be easy, but it will be ok. <3

Heart Baby Home

Heart Baby Home is a fantastic resource for CHD.  The website provides descriptions and images of various heart defects that can be shared and re-posted.  I had emailed Nanette at Heart Baby Home because I couldn't find an image that matched Alessandra's heart.  Shortly later she provided me with a link (http://www.heartbabyhome.com/2012/09/single-ventricle-avsd-c-tapvr-dextrocardia-ps-vcra/) to her website and an image that matched Ali's heart as well as some very informative text about her various conditions.  How cool is that?

 

Pictures :)

Smiling

I think it has been a few weeks since my last update, which is a good thing because that means we haven’t had any unexpected news or non-typical doctor visits.  Ali is almost 2 months now and she is pure joy.  She’s getting chubby, interacting with us and wiggling all the time.  She’s “talking” and cooing and smiling with her eyes.  I’m trying so hard to get that first ‘social’ smile, but she’s not giving it up yet.  Once I thought she was going to because she made an expression I had never seen before.  I held her really close to my face trying to get that smile, but instead she threw-up. All over my face.  I swear she did a little smile right after that.

Bailey started 5^th grade and has brought home all sorts of germs.  We have been so good at hand washing, sanitizing and changing clothes out of fear of Ali getting sick.  Since she doesn’t have a spleen, it will make fighting off infection much harder.  Somebody is watching over her because regardless of our efforts to live in a germ-free zone, everyone except for Ali got sick this week.  I took her to the pediatrician yesterday just to get her lungs listened to and her O2 sats checked and she is doing fine. Hopefully this means that the combination of her daily dosage of Amoxicillin and the antibodies she is receiving from nursing are keeping her well protected.

Ali taking her meds:

!!!!!!!!!!!!!!! In the middle of writing this post Alessandra gave her first smile! She wanted attention so I lifted her from the swing and cradled her.  She looked up at me and smiled. A real smile! Her first smile.  I’m so happy this happened right now so that I can add this milestone (smilestone? I’m a dork) .  I never want to forget it. !!!!!!!!!!!!!!!!!!!!!!!!

As far as the rest of our life goes, things have been fantastic.  My family put together an amazing baby shower for Alessandra.  My sister-in-law, Ann is a creative genius, especially in the kitchen.  We had tea, white gloves, and food.  It was so much fun.

My thoughts are all over the place this morning.  Ali’s surgery will more than likely be in October.  Her O2 levels are in the mid-to-low 80’s range and we can do better than that.  I’m trying not to think about it too much because its scary. My own heart aches at the thought of her going through this.  I’ve known since 20 weeks gestation that she would need surgery on her heart, but there is really no way to prepare for this.  I can’t imagine giving up my seemingly healthy baby to surgeons, knowing that she will be so very sick and miserable after.  I can’t even think about this. Ugh.

Thanks for reading,

~Melissa

Allmixedup

Some crazy word mix-ups Bailey has said this summer:

“There are bugs in our house, we should call a Terminator.”

“…you know when one company absorbs another company and they have to fire people they give them a leverance check.”

“Aww, her little feet are soo big…”

“bull-doizer.”  (bulldozer)

“One time at the zoo I was looking at the Zombies…I mean Zebras.”

(As we were driving past a dive bar called Dizzy’s). “Gross, who would go to a place called Disease.”

“Let’s set this joint on fire!” (I think she meant, ‘let’s blow this joint’….I hope).

“The Matrix-System.”

“Tobacco sauce”

“I put pico de mayo on it…”

“epi-tocin” (contraction between epidural and Pitocin)

“Go! They’re getting a tail on us!”

...and there is one more mix-up about octopus tentacles that I'm not allowed to post.

Just About 3 Weeks Old

We are having so much fun with Alessandra.  She is increasingly spending more time awake looking around with her big open eyes.  I read that babies at this age become fixated with human faces and will mock certain expressions.  With that in mind I have been making funny faces at her as much as possible.  If I stick out my tongue she will stick hers out right back at me.  Its so cute!!

We had two appointments this week, a visit with the cardiologist and pediatrician.   Both appointments went really well.  Her O2 stats are still maintaining between 85 and 90.  Her amoxicillin dosage has been changed from 1.5 ml once a day to .8 ml twice a day (250 mg/5ml).  She is doing great with her medicine and has no problem taking it.  I think we are still looking at an earlier Glenn procedure but we do not have a date yet.  The bidirectional Glenn surgery will prepare her heart for the Fontan surgery, which will probably be done at 2 years of age.  The Glenn procedure is intended to improve her oxygen saturation as she grows by detouring the blood from the superior vena cava to the pulmonary artery.   I have full confidence that she will handle this surgery well when the time comes.  

At the pediatrician office she was weighed and measured and is growing at a normal rate.  She is now 8lbs and 21.5 inches and is exclusively breastfeeding.  At the appointment the doctor pointed out that she has a bluish tint to her complexion.  I guess she always has but I didn’t notice it myself until that moment.  When I compare the hue of the palm of my hand to the color of her belly I can really see the difference.  Her color should improve after the Glenn and then will hopefully permanently improve after the Fontan.

As of now we are adjusting to our lives and settling back into some of our normal activities.  I don’t get to shower or sleep as often, it takes twice as long to pack up and leave the house, and I find myself nursing her in places I never thought I would (i.e. Famous Footwear, Target parking lot, etc.) I'll continue to keep everybody posted as she progresses. Thanks!

~Melissa

One Week

This first week has been absolutely amazing.  We are all enjoying Alessandra so much, she is such a delightful baby <3  Like all newborns her activities are limited to sleeping, feeding and pooping.  Her cries are so feminine and she is easy to console if she gets upset.  Bailey is such a proud big sister and jumps at the chance to be involved with everything, even changing diapers.  As for Mark, he is the most attentive father in the world.  I can’t even express how much I love him.  He has been strong and confident when I have been crazy and emotional.  He has been involved in every step of this journey and attends all doctor appointments with me.  I am so fortunate to have him as my husband.

Since being released from Phoenix Children’s Hospital we have taken Alessandra to two different doctor’s appointments.  On Tuesday she had her appointment with her pediatrician so that she could receive her HEP B shot and her second newborn screening test.  Her pediatrician says she is doing great, she has gained several ounces since birth weight which means we have this breast feeding thing figured out. 

The second appointment we had was with the cardiologist earlier this afternoon.  She endured the EKG and echocardiogram like a little champ, she was even awake for most of it.  Our cardiologist confirmed that she does not have any obstruction in her pulmonary veins, which is really really really great.  She has minor to medium stenosis in her pulmonary arteries, but that is a good thing given her anatomy.  If the arteries we not narrowed, that could risk too much blood flow to the lungs.  For now, it is looking like we are on track awaiting the Glenn procedure.  We are not sure when this will be, but it could be in the next few months.  Our goal now is to keep her in a “bubble” away from illnesses, help her to gain weight and continue with daily antibiotics.   

Here are some cute pictures that Mark took of our little baby.  I love being married to a photographer:)

NICU Graduate!

I’m not sure where to begin, the past several days have been mostly a blur.  I’ll start with the most important part: Welcome to the world sweet Alessandra! 

Alessandra Rose Sachet was born kicking and screaming to a team of health professionals on June 28^th, 2012 at 11:07 pm, weighing 6 pounds and 13 ounces.  She was born with heterotaxy asplenia and is thriving!  For this I thank God.  She will not need the first surgical procedure on her heart; she is doing so well oxygenating on her own.  Her O2 stats are only slightly below normal and she will turn a little blue if she gets really upset.  All the more reason to love her and keep her happy :) Her intestines look great and she will not need any surgery for malrotation.  She is asplenic and has to take daily antibiotics but that’s okay, we know we can do this.

After camping out at the Phoenix Children’s Hospital NICU for the past few days undergoing tests and monitoring, we were released today to come home as a complete family.  I am so thankful for this.  I know that we will have a challenging journey ahead but I am so happy and blessed that for now, we are all okay. 

I’ll post some more pictures soon!!

~Melissa

Checked in

The three of us are all settled into our hospital room awaiting induction. We have snacks, pillows and card games. It kind of feels like camping...only surrounded by machines, weird smells, needles and wires. For now we will take it easy for the night and will begin the process of labor in the early morning.

June 27th!

It’s late.  I want to sleep but my uncomfortable body is competing with my anxiety in a successful attempt to keep me up all night.  I should have no problem sleeping at this point because there is nothing left to do.  Bags are packed, plans are organized, maternity leave in effect, house is ……kinda clean?  I fell asleep for a short while, only to be awakened by the sound of a helicopter hovering over our house. It took me about 20 minutes to realize the “helicopter” was actually our beside fan.  My contractions are getting stronger and more noticeable, but are not following any frequency I can measure.  My back hurts and I feel dizzy, could this be the start of labor?  My induction date is this coming Wednesday (6/27) but it could be anytime now.  I’m ready.

We have everything we need and I am so touched by the support and generosity of everyone in our lives.  Our family and friends have given so much and so freely.  I am so humbled by this and cannot wait until it is our turn to give back. 

I’m so excited to meet this little girl.  I have come to know her so well as she twists and turns inside by body.  She isn’t getting much sleep tonight either. 

I will keep everybody updated on our journey ahead!

Much love,

Melissa