24 More Hours in PCTICU

Seems we are enjoying our stay here so much we want to stay another night. Around 10am I was still wondering whether or not they were going to send her home on O2 or keep her here... when in strolls sweet lovable Dr. Lane (he's just like a big teddy bear).

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?

Rough Night - Fussy Baby

She's asleep right now (6am), but wasn't about 10 minutes ago... she was crying, crying, crying, poor little baby. They came in at 5am to take chest x-rays (good morning to you too!...), and woke her up and she wouldn't settle back down again until just now.


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.

Great Heart Cath

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....

Finally hospital transport arrived and walked us over to the cath lab...where we waited, waited, waited. Then the anesthesiologist came in and talked to us... then finally Dr. Pophal came in and talked to us. Then they took my baby and said they'd page us on the Olive-Garden-type buzzer/vibrator/pager thingy when she comes out of the lab. They said it could take up to 4 hours. We waited in the waiting room.

About 2.5 hours later the pager/buzzer started beeping and buzzing. Both Todd and I jumped up and practically RAN out of the waiting room toward the cath lab... we even left our stuff in the room (with some very honest good samaritans who promised to keep an eye on it for us), just to rush over to see our baby. But there was no one around? No Dr, no baby, no nurses... what the...

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. :)

Heart Cath Tomorrow

Well, it is the night before Scarlett's cardiac catheterization and I'm feeling positive. I called the Pediatric CardioThorasic Intensive Care Unit (PCTICU) at St. Joe's to ask several questions about our stay tomorrow mostly focusing on breastfeeding stuff. I wanted to know: do I bring my own pump, or use theirs? Should I bring my own bottles, or use theirs? Should I bring my own breastmilk storage bags, or do they provide those? What about Nutramigen? What about Simply Think? What about her meds? etc. etc..

I decided that I'm just gonna take my own pump, my own bags, my own bottles, nipples, thickener, formula (for fortifying my BM), and her meds. I have my own special utensils that I use to crush her 1/4 aspirin (including the pill cutter, a teaspoon and a baby spoon for crushing). I recall the first time that the hospital didn't have a pill cutter or any sort of equipment for crushing her aspirin.

I packed blankets, socks, clothes and a portable DVD player for Scarlett. then clothes, socks, sweater for me because I remember how cold they keep the PCTICU. I know it's only for 2 days (and they might even send her home tomorrow!), but I have a lot to take with me for Scarlett even for a single overnight stay.

I have spent the night at my sister's house one time since Scarlett was born, and I had to pack all her stuff then, so I'm just doing that again. It's kind of pathetic that I can fill an entire suitcase of stuff for me and Scarlett for just an overnight stay...how much more will I need when she has her actual surgery?

We have to check in at 8am tomorrow. Her procedure is scheduled for 10am. (in 12 hours).Nothing by mouth after 4am. I'm starting to get a lump in my throat because I want to cry....but then I think why am I crying? She's gonna be fine!...but then part of me is still worried about the "whatif's".

The cath lab is reserved for 4 hours. I don't know if that's normal or not. Dr. Pophal has to go in, inject her with the dye and watch how well (or not well) the bloodflow is in her arteries. He is also going to cut off some Multiple AortaPulmonary Collateral Arteries (MAPCAs) if he has to, or bind them together and relocate them...he won't know until tomorrow when he goes in.

The PCTICU nurse said that Scarlett will be on the ventilator during the procedure. So she'll be intubated when she comes out of the cath lab. I also called another breastfeeding heart mommy (Radhika) and asked her about what she did with her BM when her son was getthing his heart cath. I still think it is so awesome that I have an entire network of heart mommys at my convenience. I am reallly blessed to be living in 2009. Well, I will post more before/during/after her heart cath. Good Luck baby girl... you'll do great, I just know it.

History (Single Umbilical Artery)

As usual I’m up at midnight pumping. And as usual, I’m reading heart mom blogs… So tonight I was reading Santiago’s mom’s blog (Tammie Bernal). Her son has trisomy 13 and she knew nothing about this. From what I could gather, she also had a two vessel cord (Single Umbilical Artery) like me. Also, like me… she wasn’t allowed to see her child for hours until after she gave birth. So, her blog/story inspired me to write a little more about Scarlett’s early days, and the pregnancy days since some people might not be familiar with it.. Here it goes:

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!

4 Days Till Heart Cath

Today is Saturday, and Scarlett is supposed to go in for her heart cath on Wednesday. I've been reading heart-mommy blogs lately and getting worried about things that could go wrong in the cath lab. I'm also making comparisons of my mom's angiogram and the complications that occured at the insertion site (huge blood clot), and the subsequent problems she's had as a result of her cardiac cath.

I'm trying to be optimistic, but sometimes fear and worry get the best of me. Scarlett's babysitter got sick on Wednesday afternoon, so when she went home for the day, I told her not to come back on Thursday if she was still feeling bad. She sounded pretty congested/runny nose, etc. I have been VERY fortunate with Scarlett's health thus far. She is six months and three weeks and has never really been sick. There was the one time she had a mystery fever and I had to take her to the ER, but that was kind of her only symptom. No bad diarrhea, no uncontrollable vomiting. She's never had a cold (sneezing, runny nose). So I hope and pray everyday that she doesn't get sick before her next surgery.

So, like I said, I've been staying up late for the past couple of nights reading blogs of the heart moms (that I met through my cardiologist group) who have lost their children. I read their blogs all the time, but it's usually only the 'current' posts. But this time, I went backwards in time (blog-wise), to the time when their child was born, had their heart cath, had their heart surgeries, had complications, and finally the last days/hours of their children's lives. I read the posts about the funerals and the days immediately following. I feel soooo sorry for these mothers. They have such strength and grace and they are so amazing. Each time I read another blog, I'd sit here crying silently to myself. I cannot even begin to think about the unimaginable pain they must be in. I thank God everyday I have Scarlett in my life, but knowing that these brave women have the courage to persevere may make it endurable if God chooses to take Scarlett back (whether after complications from her heart cath, or during/after her next surgery).

For now, I just treasure my precious moments with Scarlett and Violet. I love my children sooo much and I am so lucky and thankful to be a mother.

Sitting Up!

Todd called me at work today to tell me that Scarlett had been sitting up on her own a few times throughout the day. I was so excited. I came home and tried out for myself, and sure enough, there was my adorable little heart baby trying her best to sit unsupported. She tipped over only a few times, but for the most part, she was doing great at sitting up all by herself. Go Baby Girl!!