We recieved a call from Dr. Spray's scheduler. He has a really busy march schedule and wants to move her surgery up a few days. So instead of the 19th it is the 16th. I am kinda glad in a way because I will have the weekend with her and not have to worry about time with work, but it is again going into the weekend as a fresh surgery. So the countdiwn begins.
Saturday, January 28, 2012
We have all been tied up this week and it's busy on-goings. Olivia was discharged from the hospital Thursday afternoon at around 3 pm and they quickly returned to the Ronald McDonald house. She is doing better with her feeds, but they are not quite back to what they were. We have to monitor her weight very closely and she will be followed by the cardiologist much closer now after this little bump in the road. The kids and I have somewhat adjusted to our routine here. We were able to make it to Avery's birthday party and the pinewood derby this week. We are all taking it one day at a time.
Wednesday, January 25, 2012
Tuesday, January 24, 2012
So when Brett got back to the room, the doctor came to talk. After talking with everyone, she sees no need to do anything else. If she drastically changes then they will do cath, but all of her NUMBERS look ok. I am so glad we took her to the best hospital. NOT! They are treating her like a number not a baby. They want to fortify her milk again although she hasn't need it in over 4 weeks. Yet again, they want better numbers. I just want to know if they will be the ones to handle her funeral arrangements when the everything is done goes to oh crap we were wrong. How are we supposed to bring her home if everything they told us to call about, now we are supposed to ignore.
Today, we scheduled her Glenn. It is currently on the books for March 19th. That is, if nothing changes drastically.
They were slowly trying to wean her down and were going to see how she does this afternoon. In the meantime, Brett brought me to the airport and I am currently waiting for the longest flight of my life. It may only be 2 and a half hours but when you are that far away from your baby it seems like a lifetime.
Last night as with any night in a hospital with a child was very long. Olivia had bloodwork drawn and it all came back normal. Her ekg, echo, and chest xray were all normal. She spent all night on oxygen and they just turned it off to see how she will do. As many of you know, I am flying back tonight to stay with the kids and go back to work. Brett will stay with her and keep me and everyone as informed as possible. I can't spend much time looking at her because the realization that I won't be with her tomorrow hits home and I start crying. I have been with her for the last 2 and a half months every day. She is one of the three reasons I am here and I wake up every morning. I hope to know something before I fly out because leaving with a huge unknown will make me worry more. Thank you for all the prayers and nice comments. We love hearing from everyone and it helps on the really hard days.
Monday, January 23, 2012
Her ekg looks great and we are still waiting other echo results but due to her drop in feeds and wet diapers, we will be admitted for the next 24 hours to watch her. They don't want us forcing fluids on her. They want to get a real picture of her fluid status. The hard thing is that since er left and are now back, her numbers growth wise look good to them. I expressed my concern due to the fact that she has changed so drastically over the last week.
Today is the dreaded day of our cardiology appointment. Olivia has been on the steady decline of intake for the last week. Yesterday she only had five wet diapers and the goal was six. We are happy to be here with the right doctors but are afraid she will be directly admitted after her appointment. There is no denying the numbers anymore. We will keep everyone updated as much as possible.
Saturday, January 21, 2012
We got a room at the rmh because they had a last minute check out. This time we are staying in the Harley Davidson room. We called the cardiology fellow when we got here because her intake has dropped even lower. They said our cardiologist had warned them about us flying in town. They also weren't concerned as long as she is having wet diapers and is taking in some fluids. So now we wait until Monday unless something changes.
This morning started off on a terrible foot. We were late. I could not find my wallet with all forms of accepted is in it. Brett, his dad and Olivia went to the airport without me. I frantically stayed behind looking with no luck. Brittany came and thought to call tsa. We found out that with two forms of state issued is, not a picture, you can get through security. I got to the airport just in time because our flight had been delayed due to snow in philly. After a lovely pat down in security, I was cleared to fly. We got on the plane and sat for a good 40 minutes in a holding area. We finally got clearance for takeoff. Olivia slept through it thankfully. She got a little a ansy towards the end. In the last picture you can see her with oxygen on. She did great without until about an hour in and then her sats dropped to the low 70's. The max oxygen she was on was one liter. We lucked out because the plane wasn't too full. We have realized we forgot a few things but all of it can be shipped if needed. Hopefully the rental car will go smoothly.
Friday, January 20, 2012
Olivia was discharged but just in time for us to miss the last direct flight. We bought tickets for tomorrow at 7 am. We called the rmh but they are full until Wednesday. So reservations have been made at one of the discounted rate hotels that partners with them. The rmh was very nice and said we can go eat dinner there every night. We will schedule an appointment to see her cardiologist once we get there unless she needs immediate interventions and then we will go to the Er.
Thursday, January 19, 2012
So, the logistical nightmare begins again. We are definitely going to philly all depends on when we get discharged from here. I have to be back next Monday to go to work. Brett will stay with her for the time until her surgery or he runs out of time. We are trying to figure out the financial logistics but if I'm in debt up to my ears and she is ok... it will be worth it. We still don't have any results yet but will keep everyone posted
We are now back in a room at children's. Her sats are ok, 81-83, and they just drew lab work. She got an xray, and vitals in all extremities. Her blood pressures on the left extremities are 71/54 and 83/56. On the right they are 93/76 and 97/58. This is the first and only time they have gotten a no on all extremities while not crying. I spoke to her cardiologist at chop and under no circumstance will an intervention be done here. So no matter what a visit to chop is a must.
Came to cardiologist today due to low sats. On her echo they see narrowing on the end without the stent. She is being admitted and they are calling the doctor at chop. They said she either needs an early Glenn or another stent.
Wednesday, January 18, 2012
Last night, a sweet baby boy named Ethan earned his angel wings. He was born 6 days before Olivia and had endured the same first surgery she has. His mom and I had talked before our babies arrived and we both were hopeful but scared. His parents are naturally devastated. I can't help but think how lucky we are to spend every day with our sweet baby. I now question if I am doing everything I can for her. Am I missing something? Will I be in the same position one day? My biggest fear is losing one of my babies before their time has come. Hlhs is a horrific disease and more must be done to protect our innocent ones. I am partnering with Dan Claitor to raise awareness in Louisiana for our babies. We can not lose anymore. Today is dedicated to baby Ethan and all of the Hlhs angels that have passed.
Monday, January 16, 2012
Sunday, January 15, 2012
They did her echo this morning and she was a champ. She slept the whole time. We are waiting on the results but are hopeful nothing has changed. We are monitoring her o 2 sats continuously because they can only do spot checks unless she is in an icu setting. We talked to chop and they are willing to help however we need. I hope for good news from the echo.
Olivia is in a room on the 6th floor. They will check her sats every three hours. If she doesn't take at least 90 ccs every three hours they will want to do an ng tube which we do NOT want. They were amazed that she has never had one. So let's hope she gets really hungry.
Saturday, January 14, 2012
We are here in the trauma area while they try to stabilize her. Her sats are 83-84% on 1 liter of o 2. Her chest xray they say looks ok. They tested her for rsv and sent a cbc and cmp. She has a rash all over her that they think is viral. They have stuck her three times with no iv success. They want to get an echo in the morning. Why oh why did I leave philly?
Friday, January 13, 2012
We have been fighting this eye infection since Dec 19th now. Poor baby has her eyes so irritated from drops after drops and nothing is helping. Going back to the peds again today because now her eyes foam every time I put the drops in. I just wish the peds optometrist could see her today. Hoping for something to work
Wednesday, January 11, 2012
Monday, January 9, 2012
Olivia had her first appointment with Dr. Shourbaji. She was an angel. She showed off all of her tricks by smiling and cooing. She received her immunizations that she needed and then had her blood drawn to check her electrolytes that we have been supplementing. Still, no results yet but I am hoping she will be able to get rid of some meds soon. After all of that, she was exhausted poor thing. She slept which allowed me to do some homework. Now, she sleeps through this horrid Lsu game.
Saturday, January 7, 2012
We took Olivia to her first cardiology at children's hospital. We saw a cardiologist that wasn't our intended one. It was actually the one we didn't want. But we rolled with it. They did an ekg, weighed her and moved us to the echo room. At this point, it was time for her to eat and she was a tad fussy. I popped the bottle in and walked into the room. The echo tech gave me this look that could kill. I shook it off and tried to get Olivia to fall asleep. Much to my disappointment and the echo tech, it was not going to happen. She wiggled and whined for the 25 mins it took for them to do it. After they were done, we went back to the other room and waited for the doctor. When the doctor came in, she raved about how excellent CHOP is and how great the surgeons are. We completely agree. Then she stated how big of a supporter she is of sedation. She thinks it makes appointments go faster and is easier on everyone involved. I was outraged. When she saw my face she said, "she never had a sedated echo at chop? " I was quick to say no. Then she moved on to her meds. She thinks the lovenox is unnecessary. Then she stated how she was shocked all she is on is lasix for her cardiac function. All of her babies are on captopril. I again gave her a look like no way in help and Ishe then commented, "well I guess u should check with her real cardiologist". So right there, I got the gist of being unwelcomed. When we left, I filled Brett in and we both agreed we needed to talk to the cardiologist at chop before we agree to anything. And that is where we currently stand. We are waiting to hear back from them before any decisions are made. Our next dreaded appointment there is Jan 19th.
Wednesday, January 4, 2012
So being home hasn't been all I thought it would be. The idea and excitement were ideal but reality has hit hard. When people ask... you must be so happy to be home.. I politely say yes, but really want to say what do u think? I am now juggling three children instead of just one along with all of the other motherly and household duties. I have also realized I never really got angry at the diagnosis. I just got sad and busied myself with projects. Now, I am angry. I didn't ask for this. I didn't want my entire family to have to sacrifice their time and energy for me. And I still struggle with the why me question. I look at Olivia everyday and thank god for how healthy she is, but I also want to take a wrench and throw it at him. I have also seen quite quickly how fake some people can be and have endured nicely the mean comments with a smile. Yet, the biggest issue I have is not that I have to endure this but the fact that sweet Olivia has no say in the matter either.
Sunday, January 1, 2012
Olivia has transitioned beautifully to her home. She does enjoy when Nathan and Delilah leave for outings because she can then really sleep. When they are home, it can be very loud. She hit the 10 pound mark,so we must be doing something right. In this picture, she is cheering on the saints. Our new years day is more subdued this year but still a good one.