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.

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.

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.

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.