Wednesday, February 29, 2012

4 stressful months but worth every minute

Tomorrow will make 4 months old for sweet miss olivia. To think of the past four months, it is very easy to see the hard and tough times we have all been through. Her scars are proof of that. Yet, the happy times seem to get pushed to the side. Our sweet baby is here with us another day. She is laughing, smiling, and touching lives for the better. We have been embraced by a wonderful heart mom community and the great community at CHOP, not to forget our families and friends here at home. She has strengthened our family unit to a point where I never even imagined possible. She has also taught us many valuable lessons. We dont take life for granted anymore because it can simply change in an instant. We dont cherish the goods we have in our home because when it all comes down to it, the memories are what is priceless. We also have learned how crucial it is to tell people just how much you care and mean it. So while we only have 15 more days until her second surgery, I am choosing to enjoy the good things she has given us so far. Sure, the worry and stress are still there, they wont ever really go away, but at this point I am so proud to say, "I am Olivia's mom and my baby will be a big 4 months today."

Monday, February 27, 2012

Checked in for the night

CHOP has opened their doors once again for our sweet little lady.   She is being a good girl so far.   Her xrays were pretty clear,  they are just going to try putting her back on lasix to help pull some of the fluid off of her lungs so she can breathe a little easier.   Hopefully we'll be out of here tomorrow afternoon,  thats my prediction.

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A trip to chop's er

Brett and olivia were sent to the er after being seen by the pediatrician. Olivia is breathing very fast but doesn't have low sats or anything else that looks iffy. They don't know what is really wrong. Needless to say, I am freaking out in nashvilles airport. They are going to admit her overnight, get a chest xray, an iv, and watch her breathing. If it doesn't get better or they want to do anything, back I will go tomorrow. The only reassuring thing is nothing else is wrong. In a way though I wish there was something obviously wrong that they could easily fix. My stress level and anxiety would be so much better that way.

Cautious admission for fast breathing

Olivia is waiting to get an iv for a cautious overnight hospital stay to be monitored.   They took a chest xray and are reviewing her echo from last week.   We'll see if the fast breathing amounts to anything.   Sats and everything else is fine.   I'll update tonight.   Meanwhile Melanie left today and got all this great news during her layover.

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Breathing fast

A couple of nights ago, I realized she was breathing really fast almost panting. We called chop and they said to watch her. Today, they wanted her to be seen in the office of the peds. Brett dropped me off and brought her. Now I sit on a plane hoping I dont have to turn around and fly back. We shall see.

The countdown begins

Today is a sad day because I leave philly to return home. But that is not the only reason I am sad. Today while adding up breastmilk, 13.5 liters, I realized olivia only has 18 days until her Glenn surgery. Honestly, I have known this day was coming but I have dreaded every minute of the process. To know the pain, agony, torture and process is overwhelming to say the least, but to know it will be happening to your little one makes the burden even harder. I don't look forward to seeing her again because that will be d-day, surgery pre-op day. Here is a picture of her today before I leave.

Saturday, February 25, 2012

I cant take enough pictures

I arrived to a very emotional husband, the baby care is increasing his estrogen levels, and an adorable baby girl that is now fun to play with. I love taking pictures as she smiles and goos. Unfortunately, yesterday I woke up with a sore throat, so I haven't been able to love all over her. I do get to do all the fun stuff like baths, clipping her nails and feeding her. The things you take for granted when you get to do them everyday. I am loving every minute.

Wednesday, February 22, 2012

Mandatory pictures

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Olivia is a perfectly healthy, and developmentally sound 4 month old

Since we are hanging around up here in Philly, Dr. Natarajan (our cardiologist) thought it would be a good idea for Olivia to participate in CHOP's Neuro Cardiac Care Program. Our appointment was this past Monday at 8:30am and we finally got out at 2:30pm! Six long hours after we got started I was so happy and relieved about Olivia's progress neurologically. I don't know if we have mentioned this on the blog yet, but Olivia was a part of a controversial brain MRI research study with her first surgery. Melanie and I wanted to sign up for all the research studies, but I was confused on Melanie's thoughts on the MRI study and I signed Olivia up for it. We had a few arguments about it, a few apologies pointed in Melanie's direction. It turned out some of Olivia's MRI showed a rarely seen damaged area on her brain. At the posterior of her corpus collusum (back of her head) is a part of the brain called the splenium. The splenium is a major pathway for communication between the right and left brain. While Melanie was ahead of me in realizing that we did not want to know this, I finally agreed with her ... I did not want to know this either. I just wanted my perfect cute little baby girl, not this worry about what the future would hold. Every baby does not take part in the MRI research studies which means no one knows how common this type of brain damage is. They have no idea what the future holds for Olivia's particular damage, it is just a picture of a white semi circle taking up about .5% (pretty tiny) of the MRI picture. During rounds with her first surgery this was always mentioned, as though it could be a cause for some of her problems, or unforseen problems. Which is exactly what Melanie didn't want... I am sorry still. Before Olivia got the stent placed in her Sanno shunt for her second hospitalization, they thought her brain might not be regulating her sats properly and that was the reason for low sats. Thankfully we have had 4 months of brain damaged Olivia and the doctors told me Monday what I already knew: someone should tell Olivia she has a little bit of brain damage. We have yet to see any seizures, or anything weird and out of the ordinary. All I have seen is a baby genius, holding her bottle occasionally, baby giggles aimed at me, crazy super head strength and abs of steel from trying to sit up in her car seat. Big blue eyes that follow my every move, hands that spend half the day in her mouth, half the day grabbing toys in front of her, hands that love to reach out and pull my hair. The natural female desire to see everything that is going on around her, and don't even think about holding her where she can't see all the action (her favorite spot is being held one handed like a sack of potatoes looking out at the world). We also have long conversations where we cover a lot of vowels and several goos, with lots of high pitched squeals. Just a regular old 4 month cutie pie! Back to the appointment We were set to see 5 doctors, $125 in co-pays. First up was the neur-cardio program coordinator and a cardiologist. They said her scar looked beautiful and could tell we were doing good scar massaging. Everything sounded great and she looked good barring anything the echo would reveal. Second was a speech therapist. Olivia cooed and gooed and passed all the speech tests for her age. She also listened to Olivia drink a bottle and though that she was a champ at eating. A lot of heart babies can't coordinate breathing and sucking. Next up was Dr. Licht, the neurologist and researcher on the MRI study (a great guy). Her muscle tone is equal on the right and left side of her body. Everything seems to be progressing well in his opinion. Olivia was pretty tired at this point, but after a short 10 minute nap she was showing her tricks to Dr. Licht too. Lots of following objects with her eyes and head, up, down, left, and right. Then came the physical therapist and occupational therapist. It was like a fast paced tag team wrestling match as they both vied for Olivia's attention with their various toys and things they both wanted to test. Olivia was kicking butt and taking names even though she was still pretty tired. It also helped that they had fun looking toys. It turns out Olivia is doing some things a 5 month old would do, and is appropriate on several other things for a 4 month old. The biggest problem is ...... tummy time. She failed tummy time testing. The reason is because we don't do any tummy time with her. Last but not least the cardiologist came back in from looking at the echo. She told us that Olivia's pulmonary artery was very small. She was concerned but not too concerned. Her reasoning was that a Sanno shunt is usually used for small arteries which in turn means everything with Sanno shunt babies is usually smaller. I will basically just continue monitoring her pulse ox and make sure it doesn't go below 71%. 20 minutes after that we got a few pieces of paper that summarized everything and all the findings and by 2:45pm we were on the road home. Phew! A lot of worry was wiped from the slate on Monday. It is tough but very worth it. Being the primary caregiver of your baby strips a man of his proud manliness, so much so that I want to end this blog post on an emotional note. The thing that drives this emotionally stressed out man to the very brink of tears of joy is Olivia's smile. Olivia gives me the biggest smiles. Every smile has purpose and is usually directed at me when we are playing and talking. It is the most amazing smile, that melts away all my fears, concerns, worry, stress, doubt. It is Olivia's way of telling me she loves me everyday, and when Melanie gets here Friday she's going to give her mommy all those loving smiles as well. After 3 long weeks I can't wait to see Melanie get some Olivia smiles. Someday when I get back to New Orleans i'll be given back my man card, but in a little while when Olivia wakes up I can't wait to see that beautiful smile that says "good morning dad!"

We are back in the Ronald McDonald house

I think the biggest problem with Olivia is she has to wear clothes throughout the day. When everyone sees her cutely dressed in her sleepers (British translation: baby grows) they see this cute perfect baby. It is hard to imagine anything could be wrong with her. It is only when you pop open her little sleeper and see her long scar right in the middle of her chest that someone would realize. On a side note: I have a feeling her chest scar is going to be very inconspicuous but the scar where she had a chest tube drain might be what she is most self conscious about. I love worrying about what she'll think about her scars when she's all grown up! Continuing with this blog entry: unlike 40% of HLHS babies at CHOP, Olivia is able to bottle feed and does not require a NG-Tube (nose feeding tube), or G-Tube (stomach feeding tube). She is a pink skinned beautiful little girl except when she turns purple as I scramble to warm or prepare a few last minute bottles. She doesn't have the obvious visual cues a child with cancer, or a child with several casts on their body would have. All Olivia has is a ticking time bomb in her left upper chest that could send us to the hospital to have an emergency Glenn heart surgery at any moment. The less dramatic truth is that everything is checking out fine at the doctor appointments and she should make it to her surgery on March 16th. Keeping in mind Olivia's biggest problem mentioned above this is what transpired and was finally corrected yesterday. I was told in the morning that we would need to move to a host family house, or find another place I could stay. Olivia wasn't being seen by a doctor twice a week so she didn't meet the Ronald McDonald criteria. The whole idea completely caught me off guard and I was not on top of my game to fight back at the time. I called Melanie as I desperately tried to make a plan, I think we would have ended up staying with the Zapalacs who live about an hour away, but I was able to talk my way back into the house. We do actually have her seen twice a week. In lieu of a second doctor visit a week she is seen by a home health nurse and that took the place of 2 visits a week. They double checked with our nurse practitioner who manages Olivia's interstage care and we were allowed to stay in the house. It was a very stressful, but thankfully everything is okay now! Back to just worrying about Olivia and her daily routine. On a side note, the pressure was being applied because they have 11 families waiting to get into the house in hotels paying $50/night. I just remember back to when Melanie first arrived here. She was pregnant and had to call the house everyday at 10am to try and get a room. After about 2 weeks of being in Philly we finally got a room at the Ronald McDonald house. Now we just wait and see if there are any repercussions from the letter we sent to the corporate office. We felt like it was our final plea before we found out that we could stay.

Tuesday, February 21, 2012

Mardi gras tainted

We were having a great time andbu then Brett called. Let me start by saying olivia is fine. Now to the real issue. The ronald McDonald house is kicking them out effective tomorrow. I am so angry! First it was trade rooms, now it is get out. I was so angry I wrote the corporate office to offically complain. Now, brett has to find either a flight home or a place to stay. It is ok for international people to stay while not being seen, but new orleans isn't far enough apparently. She is meeting their criteria for twice weekly visits but they still want them out. I am over them and this whole current situation.
Here are some pictures before he called.

Saturday, February 18, 2012

Baby genius

She's already trying to hold her bottle.   Everything is going great just waiting for our appointment on Monday.   She's had a few reactions to formula which makes up one third of 6of her daily bottles.   Lots of spitting up now but I still just give her breast milk at night just in case.   She's doing a lot more giggling,  she actually thought I did something so funny she was giggling without me even touching her.   I'll post a essay update tomorrow

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Wednesday, February 15, 2012

12 pounds of solid baby

Olivia is doing great and getting bigger everyday. Our schedule so far is pretty busy. I thought there would be this huge amount of free time where I could accomplish a lot of things, yet I haven't found the elusive free time yet. It seems like when I am not taking care of Olivia I'm washing bottles, defrosting breast milk, preparing medicines, cleaning up dirty diapers that do not make it in the basket on the first shot (pee diapers). I will admit I am a social dragonfly and might lose some useful time throughout the day because of it. The problem is that the Harley Davidson room can get very boring so Olivia and I spend a few hours a day hanging out with our Ronald McDonald House friends. All of these factors make for an overwhelming day and no blogging. I apologize for not keeping everyone up to date. Olivia is still seeing a doctor once a week, pediatrician yesterday, cardiologist next week, with a lab work-up here and there. Last weeks cardiologist appointment with the amazing Dr. Natarajan went very well. She was a very good girl for her echocardiogram. In fact, she loves to having both of her hands holding onto the hand of the radiologist as she moves the probe around her chest. It is very cute, and luckily all the echo's up here have been like this so far. The results of the echo showed everything is flowing well in her heart, no problems at all. Her pediatrician appointment went well too. She cried for most of it, but Dr. Huang gave her a good once over and thinks she's doing great as well. She also helped prepare us for our big Neuro-cardiac program appointment next week. Basically, CHOP has a research program where they assess the neurological development of their cardiac patients, and then try to get those that are behind the right therapies they need. The program then follows them throughout the childhood. Our appointment is Feb. 20th starting at 8:30am. I was told to be prepared for a long day, 3 hours or so of assessment. It is possible they are figuring in a lot of time for her to be fussy and non-cooperative. Once all that is over then she'll have her EKG and echo at 1pm. It's going to be a fun day. As for the advice Olivia's pediatrician was basically - they are going to find a lot of little nit picky things wrong with her, but just go along with it and get her the therapies they suggest. The question I find myself answering a lot from various people I meet, and who inquire about Olivia, is "why are we still here?" (It is asked in nice way). The truth is we probably don't need to be here, the cardiologist seemed surprised we were staying in town so long. The problem is to go home it'll cost us $600 for the flight and $400 for the portable oxygen concentrator, to fly home and back for surgery and then home again is pretty expensive. Problem number 2 was the New Orleans hospital said her shunt was narrowing more and she would need surgery much sooner, or a catheter intervention, when we came up to CHOP they couldn't duplicate the findings. As we would wait in New Orleans with them thinking we need the surgery sooner but with CHOP saying to wait until March is a situation that could have gotten pretty dicey. Problem number 3 is we have to bring our own continuous pulse ox machine to the New Orleans hospital to monitor Olivia's saturations when she is in the hospital on oxygen. Problem number 4 our good friend Mia Marrone lost her battle with HLHS around 78 days, and then a baby at the New Orleans hospital, born 6 days before Olivia lost his life at around the same 78 days of life. Several other HLHS babies we knew kept having a lot of complications and were just stuck in limbo trying to get answers on what was wrong at the local hospital. When we flew Olivia up to CHOP she was about 78 days old. Our answer to all of these problems is that the lost wages, and the sadness of our family being apart is worth every time Olivia gets a day older and is still alive. Sure it would be easy to stay at home, work and be a happy family, but the what if's and the gravity of this entire situation will keep us up here through March and possibly 2 weeks after her surgery. So whenever someone asks, "why?" they get a very loaded answer.

Friday, February 10, 2012

Video blog

It's getting boring but we still find time to play

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Sunday, February 5, 2012

My new find

I found my fingers and they are very tasty. The only problem is now that I suck on them I don't want my binky.  Oh well.

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Friday, February 3, 2012

Finally in philly with my baby

I arrived safe and sound. I am very excited to be here. She has gotten so big. I didnt get a big happy grin but seeing her is so nice. The moms here have helped brett so much while I have been home. Seeing her has made me realize how much I have missed out on and made me a tad weepy. I will post more while I am here. Brett can't master posting and olivias care just yet, so sorry for the delay.

A king on a plane

This morning I waited at 6: 30 in a ridiculous line for a randazzo king cake. All because my husband requested it. So now the king cake is sitting with me at the gate after being scanned by security. We cant wait to get to philly. I have gotten quite a few envious looks and comments. I am anxious to see my baby again.

Eyes of goo

Olivia went to the eye doctor hi yesterday. They put dye in her eyes to see the dry spots. The dye turned the puss orange. Hopefully, she will have this antibiotic work.  If not at a year old, interventions will be the next step.