We have had a lot of interesting developments and a lot of ups and downs as well in the past month. This continues to be quite the roller coaster that we certainly didn't ask to be on but, it keeps on rolling. Now that we're on it, it's not without some thrills both good and bad. I find that I have days where I can barely take it (if at all), and other days where I am in awe of our little angel. I think you'll be amazed at what has transpired.
In the past few weeks we have been slowly weaning Delaney off of the Phenobarbital, one of two ant-seizure medications that she has been prescribed. During this time we have witnessed her become both more vocal, and more irritable. Her cry has gotten stronger, which like so much we have dealt with is a double edged sword. We thought we might never hear her cry again, and while we are excited that she is communicating we are sad that she seems to be in distress or discomfort. We know that babies cry, we don't have the expectation that babies "shouldn't". However, we can tell that she is crying out of discomfort and agitation, not the sort of cry that many of you parents can relate to when a child just needs to sound off. It could be do to the reduction in Phenobarb or just her developing (on her own timetable), we just don't have an answer.
Sometimes her crying spells can last several hours to even an entire days time, no exaggeration. It is during these times where I find it very difficult to take. We hold her, swaddle her, change positions, change her diaper, give her a bath, leave her alone, give her "tummy time" or back time...nothing seems to work unless we give her Ativan. It's important that we keep her calm not only for her heart condition, but also so she doesn't burn off all the calories we are giving her. Despite the complications, we are glad to hear her voice again. It would just be nice for her to have more moments of calm vocal expression, even a "coo" here and there would be comforting to experience...we may yet.
One of the biggest developments over the past month is that last week we were given the green light to take her off of oxygen support. Since then, she has been at optimal O2 saturations everyday. A huge help to us to not be tethered and very freeing to walk her around the house without tripping. We can bring her outside without having to be aware of the cumbersome machine, tubing, or tanks. Little successes like this are huge buffers to our morale, even though the overall picture is still hugely daunting.
While her O2 has been good, we still get these moments where she has what I would describe as panicked breathing. While she is sleeping she breathes easy and calm, if she is awake and agitated she behaves as though she can't breathe very well. As if it is a struggle to pull air into her lungs. We know that her body is getting enough oxygen, so it's quite the mystery as to why she works harder than she needs to. If we give her Ativan (anti-anxiety med) and she calms down her breathing returns to normal. This tells me that there probably isn't anything structural or biological going on, but we really need a doctor to be able to tell us what this is all about. We need to ask more questions of the right people so we can get a better direction.
We met with our cardiologist two weeks ago and had mixed results. Delaney had an echocardiogram and we discovered that her Ventricular Septal Defect (VSD) has increased in size to roughly six millimeters. When I heard these results I was disappointed and worried that it meant her condition would worsen. To my surprise the blood that was shunting from left to right towards the lungs has slowed and her heart has been able to compensate more easily which is a good thing. In the same echo, we learned that there is a possibility that her Coarctation is returning. The image they were able to obtain was quite clear, however her blood pressures on all four limbs were essentially normal. The image seemed to present more constriction of the aorta, but it was difficult for Dr. Sommerfield to say for certain since the blood pressure didn't coincide with what she was seeing. Further, she said that because the structure itself is highly magnified it's difficult to ascertain from each instance if the measurement is consistent. On any given echo you can see variations of size, since the slightest movement and angle can dramatically change the image making it difficult to have consistency. She added that this latest echo may have just been a much better image than the previous. Bottom line, we just can't say whether it's better, worse, or no change.
Sadly, at this stage Delaney is still not a candidate for open heart surgery. Her brain is still too compromised to tolerate the surgery. She would likely lose everything that she has gained over the last three months. Not a prospect that Lindsay and I can accept. So we hope that all of our efforts and intervention will lead her to a point of being a candidate and give her the best possible chance for a good life.
We are scheduled to see a neurologist at U of M next Tuesday, we don't really know what to expect but hope that we can get the second opinion we need. Also, hope that we can finally have someone be able to give us some good answers to all of the question we have about her brain, behavior, outlook. At least some spectrum of behavior that will give us some guidelines. Often parents can feel as though they are flying by the seat of their pants, but it's worse for us since we find ourselves in the situation such as ours where no one seems to have even a rough outline/timeline of milestones or expectations. We've gone from early on hearing that she might not survive past a few days of our discharge from Children's to now, having grown and regained some function, with no real scope. It's a very difficult situation to be in, since obviously we want nothing more than to have a healthy Delaney that can smile and interact with us. We aren't sure we will ever have that. It doesn't mean that we don't hope for it, but we just don't know.
We have seen her make a couple of efforts to cough of late. To this point she has had a lot of difficulty with her own fluids. Still the case, but we are hoping that this behavior will continue to increase. The only problem is that even if she can regain her cough consistently she still would need to be able to swallow in order to complete the action and prevent those fluids from sliding down into her airway. To that end we will probably be getting occupational therapy back to work on these skills, amongst others.
In early August we have an appointment to have her evaluated to have a G-Tube (stomach tube) put in. This will make feeding much easier on all of us, and hopefully remove irritation from Delaney. A few weeks ago, Lindsay and I tried to put an NG tube down our own noses. Let me tell you, it’s pure torture. You would feel like you have to sneeze all the time, and it would feel as though you need to blow your nose constantly. I am sure that this has a lot to do with her discomfort and irritability but who knows. At the very least it will be yet another tube removed from her face and throat.
There are so many things that she can't do, so many critical to basic life functions. We feel badly for our little girl that has a mountain of challenges ahead of her. We are all feeling drained and having a difficult time with all of this. We try to get breaks, and we were really successful this week in that Lindsay’s father Greg, a nurse, was able to stay all day Tuesday and allowed us to travel down for a day of fun at Cedar Point. It was great. We rode all of the big rides and walked around the park like. It was a great date. We really felt it after a few hours and realized that we are the high energy kids we were in our twenties. However, we had a blast and it was really worth it.
The difficult thing is that we have to come back to the lives and challenges back home. You’d like to think that an event like this would give you a boost of psychological and physical energy but it doesn’t seem to last. We just have so much to attend to each hour, each day, and each week. Even with breaks, it’s just daunting. Dr. Sommerfield put it best. She explained to us that everything that we are doing is what would be happening in a hospital. To achieve all of that, there would be three nurses who would be getting breaks, and days off at a time. We are doing this, basically 24 hours a day 7 days a week. It’s really astonishing the level medical knowledge and expertise we have attained, knowledge that we would give up in a heartbeat to trade in for a healthy happy Delaney again.
We were pleasantly surprised to say the least at a grant we received from Katie Herb Foundation (http://www.katieherbfoundation.org/) it was a donation to help support our medical/healthcare needs, etc. We just can’t thank them enough and will certainly put the money to good use. Take a moment if you will to support their organization in some way. They have an incredibly touching story of their own.
Anyway, we have much to do in the coming days and weeks I will keep you updated as I can. We are so grateful to all of our supporters and please keep the prayers and positive thoughts coming.
Love,
B & L & d
