We were able to spend a couple of days back home with Ruby after they initially discharged us from the hospital. We knew that we wanted to be home with her, but we didn’t realize how nice it was to be in familiar surroundings and have all of our things available until we got there. We really enjoyed just spending time with Ruby during these couple of days.
On Friday, 8/13, we took Ruby in for her MRI. They were kind enough to use highly concentrated sugar water to sedate her instead of any kind of narcotic, so we were very thankful for that. Unfortunately, we could not be in the room with her for the MRI, so it was a difficult 40 minutes to wait – I don’t think that she had been away from both of us for that long at a time since she had been born. Of course, she probably didn’t notice at all, but it made for a long wait for us. At the end of that 40 minutes, the MRI technician brought her back to us and said that they had been able to get all of the pictures they needed and that they would get the images to her neurologist (Dr. Bettis) as soon as they could. We were very relieved to know that at least they would be able to see whatever they needed if something was there.
Our neurologist appointment was scheduled for 2:45 that same day and we were hoping that he would be able to walk us through the MRI results. Much to our surprise, we received a call directly from Dr. Bettis himself at about 10:00 that morning. He asked us to bring Ruby into the hospital as soon as we possibly could, as he saw evidence of multiple strokes on the MRI. Naturally, we were fairly concerned, so we got her to the hospital and up to the pediatrics unit within about 5 minutes of Dr. Bettis’ phone call. They found us a room quickly and proceeded to examine her and run her through multiple tests. At first, they ran through an echocardiogram to look at her heart, and then tried to collect enough blood to run a whole battery of blood tests. Collecting the blood was extremely difficult – they brought in 4 different teams of nurses before they could get anyone to find a vein, and even then, they had a hard time collecting blood because she was so dehydrated (as most babies her age are), so they had to settle for a small subset of blood tests to run. This was a fairly scary time, as lots of things were happening, but we didn’t have a lot of information to help us understand everything.
Thankfully, Dr. Bettis was able to come talk to us late that morning to explain what was going on. We were going to have a cardiologist look at the echocardiogram to make sure that Ruby’s heart was working properly, then have a hematologist come look at the results of the blood tests to make sure that she didn’t have a condition that caused her blood to clot more easily than it should, then they would keep her overnight to run a longer EEG test to take a larger sample size of her brain activity in order to determine how much seizure activity was still happening.
After the flurry of initial activity, thing slowed down a bit as we waited for the different doctors to come talk with us. First, we spoke with the cardiologist. She had taken the time to look a the echocardiogram, and she said that everything looked very good. The heart was their main concern, as she could have some sort of growth that was sending fragments up into the brain, or maybe it was passing blood clots that did not get absorbed by the lungs back out into the body. Thankfully, neither were true and everything seemed to check out with the heart.
Next, we talked to the hematologist, Dr. Hansen, about blood clotting and the possible causes of clotting in the body. It was very informative, but we didn’t have any hard results to discuss at the time, so we talked mostly about what could happen. He made us aware that it may be most prudent to go on anticoagulant medication even before we received any test results, but that he would talk to some of his colleagues and do some additional research before he actually made a recommendation.
We spent most of the rest of the day watching some more folks come and try to take more blood for the tests and just waiting for results. They sent us to the Pediatric ICU so that they could more closely monitor her heart rate and see if it was dipping too far if/when she had seizure activity. They brought in the EEG machine and hooked her up so that they could take readings throughout the night. While it is never fun to spend time in the ICU, I will say that at least they have rooms large enough so that it is easy for two people (in addition to the patient) to spend the night (albeit on chairs of one form or another).
The next morning, Dr. Bettis came in fairly early to review the results of the EEG. After looking at them for only a few minutes, he mentioned that they looked much better than the results of the initial EEG only a few days before, and that it showed that her brain had already started healing itself. This also meant that he felt comfortable not putting her on seizure medication unless/until we got new information that would cause us to re-think that decision. He was also kind enough to show us the actual MRI images and walk us through what he had seen. It turns out that two of the strokes she had were fairly (very?) insignificant, and should have no lasting impact on her whatsoever. The third stroke was definitely more significant, as in one image, it had affected about 1/6 of a cross-section of her brain (the area dealing with vision, and even running somewhat into the area that dealt with motor skills). After walking us through the images, he also discussed with us the resiliency of an infant’s brain. He said that she could potentially recover from these strokes with little or no impact to her everyday life as she gets older. Her brain should re-route many of the functions that normally reside in that part of the brain to other, healthy parts of her brain. This was very encouraging and really helped us to relax somewhat.
We also saw Dr. Hansen that morning, and he mentioned that he had only seen the results from one of the blood tests. It had came back negative, so that was good news, but we still had many others still pending. He also told us that after consulting with multiple other specialists in the area, he recommended that we do not put Ruby on anti-coagulant medication. The consensus was that unless they received results from a test that showed that she had a significant need for such medication, it did not make sense to take on the risk associated with anti-coagulants for the chance that they may solve a clotting issue. This was yet another relief for us, as we really wanted to avoid regularly giving medication to Ruby this early in her life if at all possible.
We spent one more night in the hospital as they wanted to be sure that she was eating well and her heart rate was still not dipping too far when she rested. They wanted us to see a lactation consultant and a physical & occupational therapist to make sure Ruby was breastfeeding well before they let us go. As with some other things in the hospital, this took longer than expected and we ended up waiting until nearly 2:30 in the afternoon the following day before someone was able to see us. Somehow there was a miscommunication about what had and had not happened, so we may have stayed another night if we had not followed up fairly often with the nurses to figure out what still needed to happen. Of course, when we were able to see the physical and occupational therapist, she said that Ruby was eating very well and she really had no need to even follow up with us at a later date. While we probably could have told her that, it was nice to hear her say that, and we were on our way home.
After all of this, we are finally at home and enjoying our time with Ruby. She is doing very well and continuing to do all of the things that newborns do (she has already gained a full pound over her birth weight). We love her very much and we look forward to continuing to spend time with her as she grows. In the meantime, we are still awaiting the results of her blood tests to see if anything else needs to be done. In talking with the neurologist on Friday, he said that it is entirely possible that we do not find the cause of the strokes and won’t be able to exactly explain what happened. While that is somewhat frustrating, it is also very encouraging that they would have looked at all of these potential causes and everything would have checked out. If that is the case, we fully expect Ruby to grow up and function like a normal child and deal with all of the issues that most kids have to endure. Dr. Bettis mentioned that she may end up having blind spots in her vision, but that may be the worst that she has to experience. If the blood tests do turn something up that we haven’t yet seen, we will work closely with Dr. Hansen to determine the best course of action to treat that. From the best that we understand, Ruby is doing very well right now, and unless she suffers another stroke, she should be able to grow up and function fairly normally throughout her life. We still need to keep an eye out for some of the warning signs of seizures or strokes, but we will just keep praying that she will be able to avoid any further damage to her little brain.
I hope that helps to bring everyone up to speed. We will continue to try and post information as we get more. This has been a long couple of weeks, yet we are very excited to have Ruby and look forward to her spending time with both us and all of you as she continues to grow.
[One of my favorite quotes from Kris - "I always wondered why people took so many pictures of their kids...now I get it."]
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