Saturday, February 25, 2012

What is Normal?

I've always wondered what "normal" actually is. The day Piper was born we found out that she had Down Syndrome. Instantly she would face the label not "normal". We were told that she most likely wouldn't develop like other "normal" babies. Hearing this as a parent is hard. Every parent wants the best for their child. I would love to disprove anyone who thinks Piper isn't "normal".

Since Piper's surgery she has been smiling, laughing, talking (in her own fashion) and teething. She is also working on sitting up and crawling. She is acting like any "normal" baby especially now that she is waking me up in the night to be fed. There are times when I forget that she has Down Syndrome; I forget that she had three holes in her heart, because all I see is a happy smiling baby staring back at me. I must say I love those big old gummy smiles.

Children who have Down Syndrome tend to have more medical complications than "normal" children. I belong to a Down Syndrome support group where three of the babies Piper's age have all had open heart surgery and a few of the older kids have had surgery to place tubes in their ears to counter hearing loss. Putting all these medical issues aside, all of these children are loved. Through the highs and the lows none of the parents regret having their child with Down Syndrome.

Many find their children a blessing, so it is hard to accept that there is a new "safe" test to eliminate future babies being born with Down Syndrome? The new blood test, MaterniT21, checks the fetal DNA present in the mother's blood for the extra copy of the 21st chromosome that causes the most common form of Down syndrome. Those promoting the tests claim this is a safe test, safe for who is the biggest question I ask. Certainly not safe for Piper or any other children, born or unborn, with Down Syndrome. It is claimed the test is safer then an amniocentesis, which can in rare circumstances cause a miscarriage, however my concern (largely because ths test can be carried out ealier than traditional genetic screening tests) is that someone who receives a "positive" result from this new test is more likely to terminate. So to me, it doesn't feel very safe for an unborn baby with an extra chromosome.

I worry where it will stop. Will people terminate their pregnancies because their unborn children might have other learning or developmental disabilities? The point is that there is a reason why people are different. It is diversity that teaches us compassion and empathy. Without differences I don't want to think where we would be as a society.

So Piper isn't "normal" according to some people but if being different or unique, as we all are, is "normal" then her extra chromosome makes her as "normal" as can be.

Wednesday, February 15, 2012

Road to Recovery Discharge Day

Tuesday January 31st: Discharge day!!!! What a great day, finally leaving the hospital. A bit nervous but looking forward to sleeping in my own bed. Piper has come along way from the day of her surgery. She is acting like nothing has happened, which makes me happy. She has made an impression on everyone in the hospital. Her cardiologist Dr. Gill, loves the fact that she was giving him smiles two days after her surgery.

In honor of her discharge day we decided to buy her a CHOP onesie for her to go home in.

After getting the final discharge papers from Piper's nurse and getting the thumbs up from the Attending Cardiologist. We had a few more visitors Liz, who helped arrange everything, dropped by to see how we were and was surprised that Piper was going home already. We also met with Jean, who works with Dr. Gill in the Neuro Cardiac Program they run at CHOP. She gave us information about the program and told us that it is a benefit for both us and the program. Finally we met with a Physical Therapist who reminded me that Piper shouldn't do any tummy time for two weeks, and can not be picked up from under her arms. She told us about scar massage, and told us that Piper will let us know if she is in pain.

All the waiting and the visitors Piper decided it was the perfect time to take a nap with her teddy bear. Mark decided it was a good time to bring everything to the car and get it ready for us.

Upon Mark's return Piper was awake and ready to go. She was just enjoying some hugs from her bear :)

When we got home it was time for her first bath, she was happier to be out of the bath then inside. I think she has just been through a lot and will go back to enjoying her baths in no time.

Sunday, February 5, 2012

Road to Recovery CCU Day 4

Monday January 30th: During the night they weened Piper off of the oxygen, she still had the tube in just in case. We joined the doctors during morning rounds and they initially thought about discharging Piper later that day. However they asked Mark and me if we were comfortable with that. We looked at each other and said we would feel more comfortable if she was monitored for a full day off of oxygen just in case. Especially after the little episode she had Sunday morning, so they agreed. They decided we would be discharged on Tuesday.

At 12:00 we had our mandatory CPR class and our lesson on how to administer her meds. It was very helpful, I had taken a CPR class earlier this year but never really thought I might actually need to use it. So I paid close attention to the nurse showing us what to do. It was also nice that it was just the two of us so we could ask whatever questions we had.

When we went back to the room they had taken Piper's oxygen tubes out and Piper was taking a little nap. So we decided to run over to IKEA to buy our new friend, Callie, (a patient who was in the same POD as Piper) a heart bear just like Piper's.

When we returned we gave Callie's parents the bear and they were so grateful they decided to call the bear Piper, in honor of our little lady. Let me back track on how we met Callie's parents. See everyone in the Cardiac area is pretty much in the same boat. They all have been through a huge life changing situation, however no one talks to each other.  So we (Mark) decided to break the silence and went across the POD and talked to Callie's parents who we had seen visiting Callie since Thursday.

We found out that Callie was born with a congenital heart defect known as Transposition of the Great arteries, where the aorta and pulmonary artery are switched. They knew that she would need this surgery at their 20 week ultrasound so they had come to terms with it much faster then we had. However knowing that your one day old would be having open heart surgery is never an easy thing. Callie's surgery was actually performed right after Piper's by Dr.Spray.

We spent the rest of the day watching our Friends dvds on Piper's TV. In between the cuddles, her feeding and changing those diapers, it helped us get somewhat back into a routine. I'm so glad that Piper seems to be back to her good old self giving us smiles.

Road to Recovery CCU Day 3

Sunday January 29th: Yay! Piper was weened completely off the NO during the night and was doing great. They kept the tube in as it was still supplying oxygen and if they need to put her back on the NO the could. She seemed to be tolerating her pain, feeding and everything else that was going on, until...

She had an inconsolable episode, we changed her diaper, tried to feed her, checked to see if any wires or anything were pinching her. We gave her Tylenol, a suppository and cuddles nothing seemed to work. She was crying her little eyes and proving to everyone in the POD that she had a set of lungs, for almost an hour. Then the nurse Stephanie called for the nurse practitioner, who tried to soothe Piper, bounced her for a bit until, she pooed. We thought that was the answer. It calmed her down for a little bit, the Phenobarbital also helped. They gave that to her to calm her down as they didn't want her putting too much stress on her heart too soon after surgery. We laid her down swaddled her and put a blanket over her face, within a few minutes she had fallen asleep.

I then tried to feed her again and while feeding she pooed yet again. I just realized that when Piper is older and reads these blog postings she will be very unhappy that I openly talked about how many times she pooed. We changed her yet again, then waited for another Echo to check the PA pressure to her lungs.

She passed the Echo and we just waited to be signed off so we could went to the CCU, which happened to be four doors down.

In the CCU Piper got her own room which I had a place for me to sleep. On her bed was a beautiful quilt that was made and donated to the patients of the Cardiac wing. Piper also enjoyed being able to wear clothes again and play with her new bear. 

Moving to the CCU was so tiring Piper took a nap, we decided it would be a good time to go get something to eat, when we return Piper had decided she was more comfortable like this.

As a precaution I decided to swaddle her before going to bed.

Mark went home to get some things ready for our upcoming return. I stayed in Piper's room and slept on what was a somewhat comfortable sofa bed like thing.

Road to Recovery CICU Day 2

Saturday January 28th: What a great way to start the weekend, Piper gave us her first few smiles. We could see that our little girl was on the way back to being herself.

We spent most of the day trying to get her back to her normal routine, however being in a hospital with all the beeping monitors and endless round of drs. doing their checks, it's hard to get into a routine. I guess we will just have to wait to get home to do that.

She also started to play with her new bear and her ball.

Piper's wound dressing came off and for the first time we were able to see how big an incision they made to do the surgery. We were impressed at the size as it was smaller than we had expected.
They also lowered her NO levels and continued to do that throughout the day. As that was the only thing that was really keeping her on the CICU, her nurse Stephanie not only took care of Piper but also helped the time fly by talking to us.

As Piper was doing so well, we decided not to stay with her into the late hours. We booked ourselves into the Sheraton, the same hotel we stayed at on Wednesday evening. It was nice to actually take a hot relaxing shower in our own bathroom, and sleep in a comfortable bed. That is one thing I have learned since being here, no matter how much time you want to stay by your child's bedside, you really need to take care of yourself too. The nursing staff and drs. are there to take care of your child, but if you don't take care of yourself, you are useless when it comes time to take them home.

Wednesday, February 1, 2012

Road to Recovery CICU Day 1

My (non) birthday, Friday January 27th 2012: let me first explain besides turning 30 and not wanting to, we decided to not celebrate my birthday because Piper would be in the hospital. We felt that until she came home with us we couldn't celebrate. Now that has been said it was probably the best non birthday ever.

To start off, Piper was feeding a lot better, she also had a bowl movement however with some coaxing. She was impressing the nursing staff and her Doctors with her progress. Her chest, arterial and catheter tubes were all removed shortly after lunch. They were continuing to give her Nitric Oxide, NO for you chemistry buffs out there. Also not to be confused with Nitrous Oxide N2O (laughing gas). This gas is used to help dilate the blood vessels in her lungs and reduce pulmonary hypertension, which was caused by her VSD. She seemed happy to see familiar faces as she was being weened from the morphine.

After spending another afternoon of watching and feeding her by bottle, I was finally able to have my cuddle! This is what really made my non birthday so special, even though I hate my cheesy smile in this picture it does capture how very happy I am that I got my cuddle.

Mark also got to play Dr. by listening to Piper's heart. He was able to listening to it before surgery so he could hear the difference.

My parents stopped by again and my mother was very happy that she got her cuddle in as well.

They took us out for dinner, which at first I was hesitant about, especially as we would be spending the night at the Ronald McDonald house. We found a restaurant close by which started out really nice, but the service declined as the meal continued. Let's just say that we left wishing we hadn't gone out for dinner.

We went back to find out that they once again had decreased her nitric oxide. We had a few cuddles and then said good night. We knew we were leaving her in good hands and that she also had her bears looking over her.
We headed over to the Ronald McDonald house where we had a room waiting for us.

Road to Recovery Surgery Day

Thursday January 26th 2012, will always be a day I will remember, luckily Piper will not remember it at all. We started the day very early at 4:00am, I had to feed Piper as she could not eat past 4:45. Desperate for a little more shut eye we both slept for a little longer after her feed. We managed to get packed up and over to the hospital for our 6:45 scheduled arrival.

Poor Piper was not ready to be awake so she decided to take a nap, while we sat in the waiting room.

Here she received her hug heart pillow. These pillows, made and donated by students at a local high school, are given to all cardiac patients. The older children use them as something to hug when they cough to lessen the chest pain. I used Pipers to cuddle while she was in surgery.

After a short wait we were brought to her Prep room, where a very nice team of nurses and nurse practitioners took her vitals, gave all three of us our wrist bands.

The nurse practitioner told us what would happen next, I must say that we have always been well informed about Piper's care. The anesthesiologist, (who is also the head of the department), introduced herself and explained what would happen once they took Piper from us. 

Once Piper was ready (8:00) I picked up Piper and Mark and I followed the team towards the elevators. Leaving her at the elevators was the hardest thing I had to do. All I wanted to do was hold her and run the other way. However I knew how important this surgery was for her.

Once we went our separate ways, Piper's nurse brought us up to speak to Dr.Spray. He told us how the procedure would go step by step and asked us if we had any questions. Piper's nurse then brought us down to the Ronald McDonald house family waiting room. She told us that she would give us updates on the surgery every hour and that she did. While we were waiting my parents arrived and waited with us.

When it was all over her nurse came and told us that our brave little girl was only on the bypass machine for 18 min and only under for 45 min. The only thing we had to wait for was the nursing team to fix her arterial line when she was in the CICU. Before we got there they took out the breathing tube, which I'm glad they did as I had seen photos of a child with theirs and I wasn't sure I was ready to see Piper like that.
Our first look at Piper was still a bit of a tearjerker as she just lay there with multiple tubes and wires attached to her. Every once and awhile she would give out a little whimper.

My parents sat with us for a while as we all tried to hold back the tears. As it was around lunch time we decided to leave the nurse do what she needed to and we went to the food court to have lunch.

For the rest of the day we just watched her and waited. She was showing signs that she was hungry but we had to wait for her stomach to make sounds that it was actually ready for food and that the anesthesia had worn off. Slowly she started eating, and had her first best feed with the night nurse Rennie, who was a really nice guy.

We were lucky enough to have a single bed just down the hall from her, where we able to visit her whenever we wanted. However we were so exhausted from being up at 4:00 and the stress of the day that we crashed early and had faith in her nursing team.