Tuesday, September 29, 2009
Evidently Dr. Cleveland, Dr. Pophal, Beth, and the others met for their weekly 'Cardiac Conference' this morning. Scarlett was brought up as a patient who was having surgery this week. Dr. C asked Dr. P to go over the results of the heart cath 3 weeks ago... then Dr. C said he really wants another CT scan done of Scarlett’s heart before her surgery.
Beth says that her CT scan will be tomorrow and that the surgery scheduler will be calling me to schedule it. I ask “So, this means her surgery won’t be on Thursday?”, and she says “no”….My initial reaction is "AHHHH!" (I wanted to scream), but I just quietly and patiently listened to Beth explain that Scarlett’s collateral arteries on the right side are wrapped around the aortic arch, and Dr. C wants to know where they are originating from, which only a CT scan can show.
I guess the upside is that I’m thankful that Dr. Cleveland wants to know exactly what he’s doing when he gets in there. This is a major reconstructive surgery on a very fragile area. Dr. C will be operating through a microscope. I want him to know as much as possible about Scarlett’s heart before he gets in there.
Beth also said that another reason her surgery is being rescheduled is because they don’t have a homograft in Scarlett’s size (for her weight and size). They rescheduled her surgery for next Thursday, same time. This is a tentative date as well…dependant on the approval of Dr. Cleveland.
So tomorrow morning we check in at 6:45am for the CT Scan, it shouldn’t take very long, but since they have to put her under general anesthesia there is a good possibility she’ll come home on oxygen, so we’re just gonna take the tank with us this time so there’s no reason for them to keep us there.
I drove home from that April meeting crying the entire way. Why? Because I met 3 out of 15 heart mommies (Brooke, Daradee and Heidi A), who have lost their children to complications from their child's CHD. I guess I just tried so hard to focus on the positive (all the CHD survivors), I forgot to think about the negative (the CHD angels). That night, I heard the phrase "she/he earned her angel's wings" for the first time. The word "angel" will never be the same to me now...it has a whole new meaning.
But on that night in April I also met 12 heart moms who are struggling heart moms like me. It is a curious thing... to immediately bond with a complete stranger. Because you can completely understand each other's anxiety, sorrow, stress, joy, and gratitude to have your CHD child in your life. Only another heart mom understands the ups and downs of a pulse-ox machine, feeding tubes, oxygen cannulas, fortifying breastmilk, administering daily heart medications, echocardiograms, hospital stays, etc... Through the Heart Family Council, I have made friends for life. No one understands what it is like to go through what you're going through like a fellow heart mom (sorry all u heart dads out there).
So, to celebrate my new title (as of February 17) of Heart Mom, last week I ordered a personalized license plate from the Dept of Motor Vehicles. It will read: "HRTMOM1", and I will proudly display it on the back of my Jeep. I'll post pics when it arrives. :)
Sunday, September 27, 2009
If you would like to buy the book (which I highly recommend), you can find it on Amazon HERE.
Thursday, September 24, 2009
The three circled areas represent 1.) Pulmonary stenosis/atresia in the pulmonary arteries [the 'T' shaped thingy] 2.)MAPCAs [the twig-like thingys growing off of the aorta] and 3.) the VSD [hole between left & right ventricles (blue and red parts)] (stenosis=thinning/atresia=absent)(aorta=the fat pink vessel connected to the red side of the heart in this pic... the aorta is the largest artery in the body, originating from the left ventricle of the heart and bringing oxygenated blood to all parts of the body)
As mentioned previously, if the "T' shaped thingy represents a tree [a trunk and two branches]the vertical part of the "T" [the trunk], is missing in Scarlett and the horizontal parts of the "T" [the branches] are very small just like this picture.
During Scarlett's surgery, Dr. Cleveland is going to implant a homograft/conduit (from a human cadaver) to replace the 'trunk' in the aforementioned analogy. He is then going to test the pressures in the 'branches'. Depending on the pressures, he can do one of two things. 1.) He can cut off some of the collateral arteries (MAPCAs) [aka the 'twig thingys'] and dispose of them...or 2.) He can cut off the MAPCAs, bind them together and create a make-shift 'branch' to help the undersized existing branches.
While up during one of my midnight-2am-4am feedings, I found a pretty complex report/presentation on Pulmonary Atresia VSD. I don't know when it was dated, but I did see 2003 somewhere so it was at least a few years ago. If you have extra time on your hands and you're really bored and have nothing better to do (like at 3am when you're up pumping like me ;)..., it's interesting reading. It's 56 pages long....but here it is: Management and classification of collateral vessels in Fallots with Pulmonary Atresia and VSD. Warning tho, there are a few graphic pictures so it's not for the weak-stomached.
Back to her surgery... if the pressures in her branches are too high, then Dr. Cleveland will just backpeddle and implant a bigger shunt. Like pictured below. This is basically what her heart looks like now (minus the 'trunk') you can see the BT shunt at the top of the pic connecting the aorta (big fat light pink vessel) to the underdeveloped pulmonary artery branches:
Wednesday, September 23, 2009
MAPCAs (Major Aorto-Pulmonary Collateral Arteries) labeled here with the letter "C" are the second reason why her Oct. 1st surgery is so complex, challenging, difficult and will take all day. Evidently, normal people like you and me do not have MAPCAs, but it is very common for patients with Tetralogy of Fallot/Pulmonary Atresia to have them.
I am no doctor, but from what I've read [internet education], when the heart doesn't have a pulmonary artery to send blood through, it compensates by creating tons and tons of tiny collateral arteries instead. MAPCAS are practically useless little veins connected to your heart.
For Scarlett, Dr. Cleveland will have to implant the homograft (conduit) and test pressure in her right ventricle/existing tiny pulmonary arteries. If the pressures are too high, he *might* cut off several of her MAPCAS, bundle them together, and relocate them to another area in her heart where they will be more useful (its called unifocalization). This is obviously tedious and time consuming, and Dr. C has to be careful, meticulous, and calculating. (God Speed to Dr. Cleveland).
Also from my internet research: "The management of infants and children with pulmonary atresia, ventricular septal defect, and multiple aorta pulmonary collateral arteries (PA/VSD/MAPCA) has proven to be challenging. Therapeutic approaches have included staged unifocalization, shunting, coiling of collateral vessels, and heart/lung transplantation"
She already has a shunt, and they already coiled one of her collateral vessels. Dr. C talked about inserting stents later in her life (he's being optimistic about her chances for survival, at least..).
I have been up and down emotionally since Friday. I am doing fine, then someone asks me how the baby is...or when her surgery is, and I fall to pieces answering them. I cried 3 separate times at work yesterday and I'm tearing up as I write this. I really should at least TRY to be strong, but it scares the crud out of me that my daughter has to undergo this risky operation in 8 days. :(
Sunday, September 20, 2009
Saturday, September 19, 2009
I found this picture on the internet. It is of a normal heart, then three below it with Pulmonary Atresia VSD, which is what Dr. Cleveland referred to is as (as opposed to Tetralogy of Fallot with Pulmonary Atresia).
In the first pic, a healthy heart, you can see the pulmonary artery (labeled PA), then in the pic labeled 1, you see hole between the RV & LV (right & left ventricle). This hole is called a Ventricular Septal Defect, or VSD. The PA shown in pic 1 is skinny but in Scarlett's heart it's absent. Pic 1 also shows MAPCAs (major-aorticopulmonary collateral arteries ), one of which was coiled off during Scarlett's heart cath last Wednesday.
During the "full repair", Dr. Cleveland will patch the hole (the VSD) and he will implant a homograft to replace the pulmonary artery. Picture 2 shows the hole (VSD) being patched, and Pic 3 shows the homograft.
What is tricky during this surgery is that Dr. Cleveland has to test her arteries, veins, vessels, valves for pressure resistance. He is going to go in and place the homograft. After the homograft (which Dr. C confirmed will be human tissue, not pig tissue) is placed, Dr. C has to do a series of pressure tests. Based on the results of these tests, [how her heart is going to behave/react to the homograft], he will continue with patching up the hole (VSD), and completing the surgery.
However, if during the pressure tests, her heart is working overtime, and the pressures are too high, he's going to take out the homograft, leave the hole open (unpatched), and just replace her shunt with a bigger shunt.
She's going into surgery on 10/1 at 7:30am. Dr. Cleveland said that hopefully around 1:00pm, he will be able to determine whether or not he can complete the the full repair or not. We will be in the PCTICU (in her room) waiting. Dr. C will call the PCTICU with status updates during her surgery (just like they did the first time).
This is just a small part of what her surgery will consist of. I will post more about her procedure in the days to come. But her surgery is going to be a lot more complicated than I described above. Because of her MAPCAs, it complicates things. Also, because her existing pulmonary arteries (the ones going left/right, not the one going up/down) are also underdeveloped, there may be other complications that arise. This might be a little too technical or confusing , but I thought I'd at least try to explain why her surgery is higher risk and more complicated than a 'regular' Tetralogy of Fallot full repair. Thanks for reading.
Friday, September 18, 2009
Thursday, September 17, 2009
Scarlett has Tetralogy of Fallot with Pulmonary Atresia. That means that her pulmonary artery did not form when she was in my tummy. So, when she was born, the right side of her heart was pumping blood and it was going nowhere except to the left side of her heart, then the left side of her heart was pumping un-oxygenated blood to the rest of her body.
In a normal heart, the right side pumps un-oxygenated blood to the lungs (via the pulmonary artery), where it picks up oxygen,.. then the blood comes back to the heart through smaller pulmonary veins/arteries, to the left side of the heart (now fully oxygenated), then the left side of the heart pumps the oxygen rich blood to the rest of the body (through the aorta).
In the following picture, the Pulmonary Artery is shaped like a letter "T". Scarlett has the left and right side of the "T" (the branches), but not the vertical part (or the main trunk) that connects it to the right ventricle.
The reason why I want a full repair is because it means Scarlett can live more of a 'normal' life. Right now she is still considered high-risk because of her shunt. She is being kept alive with a tiny piece of plastic. That piece of plastic can get infected, can develop clots, can develop leaks, etc.. So in a preventative measure, Todd and I keep Scarlett completely sheltered from the world. Scarlett basically only leaves the house to go to the cardiologist or the pediatrician. It is extremely rare for us to take her anywhere else. We simply can't risk her getting sick and something happening to that shunt.
Since Scarlett's main pulmonary artery is absent (pulmonary atresia), the surgeon is going to implant something called a homograft (donor tissue from human or pig cadaver) to replace the pulmonary branch that never formed. The use of human (or animal) valves usually means less risk of infection, but is a more complex surgery than other valve repair or replacement procedures.
So, if they do a full repair, that means she won't need surgery again until she's 3. If they just replace her shunt, then she'll probably need surgery sooner to replace it again.
Of course all of this is just my speculation. Our surgical consult is tomorrow morning. I will write more details after I talk to Dr. Cleveland .
Wednesday, September 16, 2009
Tuesday, September 15, 2009
I got a call from someone named Laverne from the Eller Congenital Heart Center today saying that Dr. Cleveland wanted to schedule the surgical consult for Friday. I asked if she knew when Scarlett's next surgery would be scheduled for and she said that's what Dr. Cleveland wants to talk to us about. So we're going in at 10am on Friday to determine what they're gonna do, and when they're gonna do it. I'm getting more anxious. I just want answers.
Monday, September 14, 2009
I was so happy, I thought Thank God, she only needed the O2 for 24-48 hours after being released (or for 4 days post cath). But, maybe...maybe not. Tonight, right before she went to bed I plugged her in and checked her again and she was 75-77, a little down, but still above 70, which is the benchmark for needing the O2. I unplugged her from the pulse-ox (so she doesn't choke herself on the cords while she sleeps), and went to bed myself.
Well, when I woke up to pump, I checked her again and it was 65! What the heck? Why did it go down by 10 points??! I don't know if it's a misreading on the pulse-ox, but even after a half hour it was still 70-71. I want to just put her back on the O2, but it is totally a struggle to fight with her to get the tube up her nose and taped to her cheeks. : ( Plus, I already removed the 'cheek stickers' that hold the nasal cannula in place and her cheeks are bright red from the irritation from the tape. I don't want to do that to her again, but obviously I don't want her to be having possibly dangerously low O2 levels? What to do...what to do? Should I wake her up and torture her with the struggle to get the O2 tube back on?....
I just checked her again (it's been about an hour already), and she was 74. Beth said that as long as it's above 70, she's fine, but I'm still a little worried. Tomorrow, if it is 70 or 69, I'm gonna turn the O2 back on. I really don't want to take any chances with her levels getting too low.
On a different topic, Scarlett's only living grandpa (Todd's dad) is in the ICU! :( He was diagnosed 5 years ago with the crippling disease ALS [Amyotrophic Lateral Sclerosis], also called Lou Gehrig's Disease. Todd's sister called him last night to tell him that their dad was rushed to the emergency room in critical condition. I hope that he makes it, but he's a very sick person (already in the last stages of ALS...wheelchair, ventilator, trache, can no longer move/speak on his own). I feel for Todd, he loves his dad very much. I hope Scarlett's grandpa makes it, but I also don't want him to suffer anymore. If you're reading this, please say a little prayer for him. Thanks.
Saturday, September 12, 2009
Violet woke up this morning and said "what's that mommy?", and I said "It's an oxygen tank", and she said "Oxygen Tank", and I said "yes.. it's for Scarlett". Last night when Violet saw Scarlett, she said "Mommy, Scarlett has a boo-boo!.. ", and I said "yeah", and she said "We need to go home and get a bandage!" So this morning when we were moving Scarlett from the bedroom to the living room, Violet hugged the oxygen tank and said "I love it mommy", and I said "You love the oxygen tank?", and she said "yes!", then she proceeded to give the oxygen tank a big hug. I had to take a pic. The O2 tank got lots of love from Violet this morning.
Friday, September 11, 2009
APRIA called me at 4pm and said that they should have the O2 tank here by 8pm, so we're going home when they get here! Yippee. I know Scarlett is not happy being here. My poor little darling.
Again, a shout out to all the heart moms whose babies are or were on O2 at home. I don't know how you guys did it. Scarlett hates the tubes and gets really upset and keeps pulling it out of her nose. She gets really mad. I concur there's a special place in heaven for heart moms with kids on O2, feeding tubes, or pulse-ox machines... God Bless Us!
She's still on the agenda for Tuesday's 'Cardiac Conference' to discuss exactly what they want to do to her during her 2nd surgery. I might not have a date/answer until Thursday next week, because the surgeons want to think about/research findings that were discussed in the Tuesday (9/15) meeting.
Laura (nurse practitioner) said she anticipates surgery the first week in October.
Thursday, September 10, 2009
I asked what was up and he said 'well, one of two things are gonna happen. 1.) we're going to send her home on O2, or 2.) we're gonna keep her here over the weekend, then next week they'll determine whether we consider keeping her and doing surgery' (Whhhat?!), then he says 'the next 24 hours will tell us more.' So I say:' Soooo, we're staying another night?..cuz I didn't even know that much...' and he says: 'Yes, definitely one more night and we'll reevaluate tomorrow'.
So we're here for at least one more day possibly more...(?) Just to repeat a bit... her oxygen levels are good when she's sitting still or sleeping, but the minute she starts playing, babbling, fussing, crying (basically moving), they dip in the 60s. They want them above 75.
She's fine with the O2 nasal cannula, but when they shut off the oxygen, her O2 sats dip. Here is a pic of her with our day nurse Kristi:
She has an IV line in her leg/ankle and she keeps bending her foot and causing the alarms in the IV to go off, so the nurse last night put this big 'ol sock on her to stop her from pulling at it, or putting it in her mouth. It looks so funny.
So all day today they are going to try to wean her off the oxygen and see how she's doing....let's keep our fingers crossed... but I don't know what I'm crossing them for (honestly!)... I kind of want her surgery over with, but I kind of want her to go home too...I guess I'm crossing them that she comes off the oxygen, goes home, has a chance for her arteries to grow, then comes back in 4 weeks for her surgery. Yeah, that sounds good, right?
Same thing happened last night. Fussy, crying, irritable, didn't go to bed until after midnight. Inconsolable... I felt so sorry for her. Poor girl.
Her oxygen levels aren't what they should be...it's unusual and has me a little concerned. When she's awake whether fussing, crying or even just moving (the slightest stirring), her oxygen levels take a dip (in the 60s), but then when she sleeps or lies still, she's okay again (above 75). The nurse (Laura) said this is not typical. Laura said Scarlett does a lot of mouth breathing so that could also contribute to her low-ish O2 levels when she's awake.
Last night the nurse tried to turn off the O2 to see how she'd react, and sure enough, her sats took a dip, so we had to leave it on. I'm getting a little worried that she might have to come home on oxygen. BTW: I have a new found respect for any heart mom whose child is on oxygen...Lord Bless You... Scarlett keeps trying to pull the tubes out of her nose, it is obviously uncomfortable/annoying for her and she screams when you try to tape them back on. (ugh)
She also sounds like she has some upper chest congestion, but when the nurse tried to suction her, little to nothing came out. She doesn't have a fever, and she's eating fine (no vomiting yet!), but she sounds really boogery/congested.
The nurse did say that between 3:30-5 this morning, she was able to turn off the O2 and Scarlett did okay (she was sleeping of course), but as soon as she woke up, there they were in the 60s again. So, she had to turn it back on. We'll see what the docs say in rounds today.
Oh yes, one last thing, her 'site' looks great. Laura took off the pressure bandage last night around 10:30pm and of course Scarlett didn't like it, but it looks so much better than I thought it'd look. yay! :) I took off her silly oversized hospital gown and put her in a onesie. Here is a pic of her and Laura I took this morning.
Wednesday, September 9, 2009
I don't know why I was so worried, because her cath went really well today (Thank You God!). We arrived at 8am, checked in, then went up to the 2nd floor... registered with them, they took her vitals put her in the signature "sleepy tiger" peds hospital gown, and attempted to do a blood draw. I warned the nurses that her veins are weak (non-existant and bone dry), but they insisted on trying before sending her to the cath lab. They tried for 5-10 minutes to find a viable vein (while my poor baby screamed her head off...) to no avail. (I told u.. I said to them). Then it seemed like we just sat around for an hour waiting, waiting, waiting....
Then finally here comes the Nurse Practitioner who says that she's still intubated and is coming off the vent slowly, but that Dr. Pophal will be in shortly to let us know how it went. We're both on pins and needles at this point. FINALLY in strides the handsome Dr. Pophal and he proudly tells the story of what he did, happily shows us pictures, and carefully, and reassuringly explains everything to us. Of course to me, I'm still thinking, "huh?"...maybe surgery, maybe another shunt..maybe full repair... collaterals, coil..arteries..leg might be gray, voice might sound different.. It was a lot of information all at once and too much to memorize.
Long story short...They were going to do the full repair in the next 2-4 weeks, but now, Dr. Cleveland might want to do another shunt surgery to allow one of her pulmonary arteries to grow since Dr. Pophal coiled off one of the collateral arteries which may have hindered the growth of another pulmonary artery. Confusing? yes. But I will know more info on Tuesday when Beth, Dr. Cleveland, Dr. Nigro, Dr. Pophal, and the other cardiologists meet.
In the meantime, My little Scarlett slumbers peacefully next to me in her hospital crib. She's doing great. She drank 4 oz of pedialyte earlier today and kept it all down. Then around 6pm, she ate 3 oz of milk (fortified, thickened, BM) and again at 7:30pm she had around 2 oz more with her 1/4 tablet of aspirin. Here are some pics of her I took today. Thank you for your continued prayers and well wishes. :)
Tuesday, September 8, 2009
Monday, September 7, 2009
I had a very eventful and rough pregnancy. First of all, Scarlett was unplanned. She was a surprise, although a welcome one. Early in my pregnancy, I started having major drama at my work (revolving around my supervisor). Around 14 weeks, I started getting major abdominal pains. Sharp, shooting unbelievably painful upper abdominal cramps. If I didn’t know better I would swear they were contractions. Around this time I also lost 100% of my appetite. I knew I had to tell my boss I was pregnant, but the tension between us was so great, that I didn’t want to tell her, so I kept it a secret as long as possible.
The pains didn’t go away, and the appetite never returned. I assumed it was stress related caused by my supervisor. Finally I called my OB, described the pains and they wanted to see me that same day. I was losing weight instead of gaining weight. My OB (Dr. David Greenspan) ordered an abdominal ultrasound to check my gallbladder for gallstones. A few days later I had the u/s and sure enough I had gallstones. Dr. Greenspan scheduled a surgical consult with Dr. Petelin (St. Joe’s). During the consult, I was crying the entire time. I was so depressed from work stress and at the thought of going under the knife being 17 weeks pregnant…of course there was the thought that I could lose my baby. :(
I had my 18 week comprehensive/level 2 ultrasound scheduled with perinatologist Dr. John A. Garbaciak (Perinatal Care Associates) for the week after my gallbladder removal surgery, but I had to reschedule for obvious reasons. They were able to see me the day before my surgery. I found out I was having a girl. I also felt her move for the first time that day.
About 2 weeks after my gallbladder removal surgery, I went to see Dr. Greenspan (my regular OB) for my monthly appt. I still hadn’t gained any weight, but I was doing a little better post-surgery. He said my level 2 u/s came back fine, but that I had a Single Umbilical Artery, but that it was nothing to worry about. I immediately worried anyway. What the heck is a SUA? Why don’t I have a “normal” umbilical cord? What could possibly be wrong with my baby? He said that sometimes SUA is associated with birth defects, but that my baby looked fine, so don’t worry/stress too much about it.
Dr. Greenspan said he would schedule a genetic consult with Dr. Garbaciak so that I could ask any questions I had regarding the SUA. I went home that day and cried. Todd also cried. We were worried sick. I immediately got on the internet and started searching for anything and everything I could find regarding a single umbilical artery/2 vessel cord. I became obsessed in finding out everything I could… but it was a crapshoot. It seemed like I had a 50/50 chance of having a healthy baby vs. a sick baby. (it was more like 66/33) (66% chance of having a perfectly healthy baby, 33% chance that there was something ‘wrong’ with my baby). The only thing I knew for sure was that I was at an increased risk of having a baby with a birth defect (usually effecting the heart or kidneys).
I researched for 3 weeks before my appt with Dr. Garbaciak. I had a list of 25 questions I wanted to ask him. I read blogs about mothers who had a SUA. I read the good, the bad, the ugly. One mother’s post in particular had me in tears and scared to death. Her son was born with a problem with his intestines and died within a week of being born.. and it was a result of her having a SUA, which no one informed her of. This mother urged parents to research all they could and to get early intervention if need be.
For 3 weeks, I read about common pregnancy complications for SUA including trisomy 13, 18, 21, heart defects, gastrointestinal tract abnormalities, problems with the central nervous system, lungs, kidneys, musculoskeletal system. I also read that in addition to genetic or chromosomal abnormalities, I had a 20% chance of having a baby with IUGR (intrauterine growth restriction), and the risk of low birthweight, premature delivery, or stillbirth. Talk about STRESS!… Now you see why I was crying for those 3 weeks before I met with Dr. Garbaciak.
I met with Dr. Garbaciack on October 30, 2008. Before my genetic consultation with him, I had another ultrasound (the second performed by his office). The u/s tech said that the baby would not get into a good position for her to take good pictures of the heart. She said she got ‘some’ pictures, but that Dr. Garbaciak ‘may want more’. So Todd and I went in to the elusive Dr. G’s chambers for our consultation regarding the SUA.
Dr. Garbaciak was so nonchalant about my worries/concerns/fears. He was completely unconcerned about the SUA and seemed annoyed at my 20 questions. He cared more about the fact that 1.) I was at a higher risk for having a baby with Down Syndrome and 2.) I was at an increased risk for developing pre-eclampsia again.
He seemed more concerned about those two things, than the original reason I went to see him that day. He said I had a 1 in 450 chance of having a DS baby, but that the only way to know would be to consent to an amniocentesis. I said no way. I wasn’t going to risk losing my baby just to find out whether or not she had DS. I asked him about the pictures of her heart. I said “The u/s tech said that maybe you might want her to take more pics of her heart…”, and he said “everything looks fine/good, I saw what I needed to see”. I asked if he thought I should get an echocardiogram and he said ‘if you want one, Dr. Greenspan can order one for you’.
I had gone to this October 30th appointment with Todd, and I actually told my supervisor about the SUA, because I thought I was going to be getting bad news. I told her that I might not come back to work that day if the appt took a turn for the worse. (Because I knew I had an ultrasound scheduled that day which might have revealed a birth defect.. like uh.. HER HEART maybe?!) I left Dr. Garbaciak’s office a teeny tiny bit relieved about the SUA, and now I was worried about the pre-eclampsia and a DS baby.
One week later I had a follow up with Dr. Greenspan. He said “I got the report from Dr. Garbaciak…everything looks good, but you’re at an increased risk for trisomy 21”, and I said “yeah”, and he said “Do you want me to order an echocardiogram”, and I said “Yes”. I went down one floor (in the McAuley Medical Bldg) to the Scott & Laura Eller Congenital Heart Center. I made my appointment with Dr. Alboliras. Still thinking that everything is fine and I’m just a neurotic worry wart.
Obviously we all know the outcome of that first fetal echocardiogram. WORST DAY OF MY LIFE. I should have seen it coming, but I really thought that everything was fine with my baby. (for more info regarding that day, read below on my blog under “My Story”).
What is not commonly known is that about 2 weeks later (after I knew about Scarlett’s heart defect), I went back to Dr. Garbaciak’s office for a growth ultrasound. The tech didn’t read my chart, didn’t know I was at increased risk for DS or pre-eclampsia, and OBVIOUSLY didn’t know about her heart either. She did the ‘routine’ growth ultrasound making menial small talk with me. She obviously didn’t see the tears streaming down my cheeks when she concentrated on my baby’s heart during the u/s. I asked her when she was done… so everything looks fine/normal?, and she said “yes”. And I said ‘Everything? Even her heart?”, and she said “yes, everything looks good”.
I casually got up (she was finished already), got dressed, picked up my purse and just before I left the room, I told her “I just wanted to let you know that my daughter’s heart is Not Fine. She has a major congenital heart defect and will require open-heart surgery in the first week of her life, and you just told me she is fine and everything looks okay… you might want to read your patient’s charts before you examine them”.
Be assured I never returned to Dr. Garbaciak’s office again, and to this day I have resentment and bitterness toward him and his incompetent staff of ultrasound techs. From that point forward I was seen my Phoenix Perinatal Associates for all my non-stress tests, biophysical profiles and subsequent growth ultrasounds.
One last thing about my wonderful OB, Dr. Greenspan… The day Dr. Alboliras delivered the devastating news to me, he faxed Dr. Greenspan and Dr. Garbaciak the echocardiogram results. That evening at 6pm, Dr. Greenspan called me at home to tell me how sorry he was, that he had just read the report and he had no idea that this would be the outcome. It makes me cry even now how caring he was/is. He said if I needed anything that I could have him paged directly and that he honestly didn’t see it coming and that he was there for me to offer any support I needed. He is such a wonderful and caring man. I LOVE HIM! Dr. Garbaciack on the other hand, also received the same report… and do you think I ever heard from that bastard again? No. Not an I’m sorry.. not an I’m here for you.. nothing. I hate Dr. Garbaciak. 3 ultrasounds (one at 17 wks, one at 22wks, and one at 26 weeks and none of them saw Scarlett’s heart condition.)
Okay, that’s all for now. More to come on Scarlett’s first days in the hospital. Thanks for reading!