Therapy for Mama Fordyce!

One year ago our lives were forever changed. We went from enjoying the joyful exhaustion of being new parents to the fearful exhaustion of being captive in a hospital. At Children’s we witnessed the powerful sight of suffering children combined with adults doing everything in their power to save these young souls. It’s really an indescribable experience to see so much love and so much pain all at once.

Here is Isla just a few days before our new lives started:

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I have never written in detail about our hospital experience, but I would like to share some of what I personally felt as our new prescribed adventure came before us. This will be therapeutic for me, so thanks for listening… and pardon the language 🙂

The first night we were in the hospital we were under the impression that Isla had a virus and they were going to keep us there for monitoring. It seemed like everything was going to be fine, so Matt went home to let the dogs out and planned to return in the early morning. Had we known what was about to happen, he would never have stepped foot outside. Doctors and nurses kept coming in and asking questions and doing tests. Finally at 3am I was rocking Isla to sleep and all of a sudden she started crying. But it wasn’t a normal cry… you could tell something was terribly wrong. She was hooked up to monitors for heart rate, oxygen and blood pressure and every number went the wrong way. Everything was beeping and the nurses in the room took her from my arms. Suddenly they pushed the ‘code’ button on the wall and at least 20 people came in the room. They bagged her and got the crash cart out but luckily didn’t have to use it. I thought she was going to die. I was in shock, so much that I couldn’t physically call Matt. I handed my phone to a nurse who called him for me. He didn’t answer because he was exhausted from not getting any sleep the previous few nights because Isla hadn’t been sleeping. (In hindsight, we now realize that she had been having Pulmonary Hypertension issues.) After a few minutes I called our friends and hysterically said “Isla is not okay and please go and wake Matt up.” They did… oh how lucky we are to have such good friends. Once Isla was stabilized they sent her to the Cardiac ICU where she would stay for the next month.

The next day we learned of her diagnosis of Pulmonary Hypertension and that the previous night she had experienced what is called a Pulmonary Hypertensive Crisis. The next step was to have a heart cath to get the formal diagnosis and to see what her pulmonary pressures were. We had to wait a couple of weeks because she was getting over a cold and they didn’t want to put her under when she was sick… so we waited and waited (in the ICU). We spent her first Halloween there as you can see from her hat. Here arms in this picture were wrapped up because she had IVs in both arms.IMG_0694 They put her on one oral med (Viagra) to help with the pressures in the meantime. The day before her heart cath our nurse told us that in order for insurance to cover and approve her being on any PH med, Isla would have to have the cath med free… meaning she needed to be off the meds for at least 24 hours before hand. If you ask me- this is so messed up. They could tell loud and clear that she needed this medication from her echo (ultrasound of the heart) but we had to do this because without insurance coverage, the medications cost over $100,000/year. Anyway, she came off the meds and had her cath which did not go well. Her pressures were supra systemic- very high/very bad, and she did not respond well to the anesthesia. I know being off of her meds didn’t help either, but don’t get me started! She had to be intubated, paralyzed and sedated and brought to ICU. Seeing your child in this state is unimaginable, unbearable and quite frankly fucked up. Within a couple of days she was extubated and was doing well. Matt went home at this point to take care of the dogs and this was the day we realized we needed help with the dogs because… he left and I was holding her again and suddenly I heard the same cry. Not good… the nurses grabbed her from me and it was déjà vu. Twenty people in the room, the doctor telling me to sit down, the social worker asking who she could call… and the room was spinning. I got up and went into the hallway and started screaming. If you know me, you probably know that I can keep my composure in most situations and it can take a lot to rock me. But not then, not there. I hysterically started yelling at the world, at whoever would listen (which was everyone since I was yelling!) “What the fuck? Why the fuck is this happening to her? She is a fucking baby… this isn’t supposed to happen.” One of our PH nurses heard me and ran over and started talking me through it. Another nurse called Matt and he turned around and came back. A mothers number one job is to protect her child, and I wasn’t able to do anything for her. I felt helpless and lost and empty. Look at her…

At that point, Matt and I set up camp in the hospital. Our parents came to help support us and help us with the dogs. It was a heavy, dark time not knowing what was going to happen. I remember the nurses took all of us into a room to talk about next steps. They were talking about ‘when Isla gets out’ but all I could think about was that my little girl was intubated, paralyzed and sedated and was going to be like that for ‘a while’… (it was about a week, although it felt like an eternity). We were sitting in this room together and the nurses mentioned that she was going to need 24/7 medication delivered through an IV. My previous blog posts talk about how that all works, so I won’t go into detail. I lost it. What do you mean she has to be on an IV? I was still in the ‘what the fuck’ mode. That was the beginning of the end of my denial stage that this was happening to us, and slowly I switched over to acceptance.

The amount of emotion I experienced during that time was unimaginable. The other thing I so thankfully experienced was the sense of support and community. So many people reached out to us in so many different ways (which I have talked about in other posts) but I have to say- that has made a huge impact on me. I think it’s easy to wake up every day and run through your routine which typically is all about you and your loved ones. Which makes sense, right? But our experience shed light for me that we are not just here for ourselves, we are really here for each other. Volunteering your time, your money or your experience in ways such as participating in events, assisting non profits, giving advice, doing research, helping a friend or stranger, whatever it may be. It doesn’t just have to be the formal/literal volunteering. The question I now ask myself is- did I help someone today? Did I make someone’s day better? Because I know that I survived my worst nightmare because of the help and support of my husband, my family, my friends and perfect strangers who did exactly that. Because of them, because of you- I survived.

Thanks for listening.

p.s. November is Pulmonary Hypertension Awareness month. If you don’t remember what it is exactly, visit phassociation.org and tell at least one person. xo

This is when Matt and I got to hold Isla for the first time after she was extubated… and in closing, this is a recent picture of Isla the PHighter:

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Repite, Por Favor!

Isla had her check up at Children’s this week… and it went really well! Our Doctor said her heart looked NORMAL on the Echo and EKG… yes, you read that right- NORMAL! It was music to our ears! She seems to be getting better and better each time we go. Because we don’t know why she has PH and we can’t tell what the pressures are without doing a heart cath, the plan is to leave her on the meds for now. We will go back again in 3 months and if everything looks good at that time, then we will start decreasing the SubQ meds. Our Doctor thinks it would be best to keep her on the pump through the winter, just to be safe. So, the hope if to have her off the pump by March and then she will continue her oral meds for “a while”. One scary thing is we will have to do another heart cath within 2 weeks of getting her off the pump, which will require her going under anesthesia. We are dreading that, but know it needs to be done. It’s just hard to think about because of what happened last time, but she will be older and stronger by then, so we just have to focus on that.

Isla is still on night time oxygen, so they are going to do a sleep study on her for two nights. One night with oxygen and one night without, to determine if she can come off. We will do that after our beach vacation, so we have rented a concentrator to bring with us on the plane and to have while we are away. That should be an adventure!

We are definitely heading in the right direction, slowly but surely. I leave you with some pictures of Isla waiting for the Doctor and a picture from last weekend of Isla and her adorable cousins!

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Baby Steps (Literally and Figuratively)

Today we had a follow-up appointment at Children’s Hospital. Both Matt and I feel sick to our stomachs every time we have to go back there. There is just so much unknown, plus the fact that twice in 2013 we went to a Doctor appointment and were admitted to the hospital for over 5 weeks… so I have a feeling we will be forever traumatized. Nevertheless, despite our fears… today’s appointment went really well!

Isla had an Echo and an EKG. Compared to her last appointment, her heart looks better… and the Doctor even said that it looks almost normal! He gave the okay to go from 24/7 Oxygen to night time only!!! That will make life so much easier… we won’t have to worry about this anymore:

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He also said that we can stop one of her (many!) daily medications. It isn’t a PH med, but still, one less med works for us! He isn’t increasing her SubQ pump meds which essentially means he is decreasing the dosage since she is growing. He is hoping that she will be able to get off of the pump completely by the end of the year. Oh how amazing that would be! We are overjoyed with the news. We are holding onto hope that all of this will have a positive outcome. It just has to! Please continue to send well wishes Isla’s way. She isn’t out of the woods yet, but she is definitely heading in the right direction.

Here is Isla right after we took off her oxygen. She had an imprint from wearing a nasal cannula for the last 7 months and she even has a slight tan line. We are so used to seeing her with a nasal cannula, it’s like looking at someone who normally wears glasses that got contacts.

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Small Wins!

Today we had an appointment with the Pulmonary Hypertension team at Children’s. Isla had another echo today. The results were really encouraging. The right side of her heart is smaller and the left side of her heart is going back to it’s normal shape. Our Doctor said that sometimes it takes years to see this type of progress… and sometimes they never see it, so it is very promising. Their aggressive treatment is definitely working! She still needs to remain on all of the meds (4 oral meds and one IV), but it’s possible that it won’t be forever. We are really excited but also want to stay slightly conservative with our reaction. We don’t want to get our hopes up, so we’ll take days like today as a small win and just hope that we continue in this direction. We still just need to focus on one day at a time!

Here’s a selfie from today at our appointment:

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Dad having fun with Islabug while we wait for the Doctor:Image

 

PHast PHorward 6 months

Since Isla’s birth 6 months ago, so much has happened! A few days after she turned 4 months, she got a cold so we took her to the Pediatrician. Her Oxygen was very low so they sent us to Children’s hospital for observation. 24 hours later she was diagnosed with Pulmonary Hypertension which is a very serious disease that causes high blood pressure in the lungs. There is no cure and it can cause heart failure. We did an angiogram to get more information, but she didn’t respond well to the anesthesia and was in a medically induced coma for a week. We weren’t sure if she was going to make it… and it was the scariest week of our lives! Luckily our little girl is a PHighter, and she pulled through. We hit rock bottom that week, so everything that has happened since then might seem tough to the average family, but we now know what tough really means. Our stay in the hospital really put things in perspective. Isla is on a ton of medication, including a continuous IV. She may need this medication for a few months or her whole life, only time will tell. We plan to use this blog to keep everyone updated on her progress, so stay tuned!

This is Isla at her worst in the CICU:

ImageThis is the first time I got to hold her after she was knocked out for a week:

ImageThis is Isla getting ready to bust out of the hospital. After being there for 4 weeks, they let us go home!!Image