Overdue update…

Just a quick update…Kris hasn’t had time to do a post so it’s up to me (the non-worder). This past Monday we visited the hematologist, Dr. Hanson. He had relatively good news to share with us. All of Ruby’s blood tests came back ok. Her Protein C retest still came back low but not as low as it did the first time they tested it. Protein C is a substance that helps prevent clotting. The first test came back under 5 and this second one came back at 22. Dr. Hanson said the level she should be at is about 30…which is better than we were originally told which was 75-80. Because her levels weren’t as (extremely) low as originally tested, Dr. Hanson doesn’t feel it is necessary to put Ruby on any medication! Another prayer answered! We will do a follow up blood test in a couple months (about the same time we do the 2nd MRI) just to make sure her Protein C levels keep going up. If her levels remain low we may have to put her on medication eventually…we will continue to pray that this is not the case.

We also had our first big outing this week (other than to the doctor’s office). On Friday I was able to take Ruby in and show her off to all of Kris’s coworkers. As most little babies do, she got quite a bit of attention as her proud Papa introduced her to everyone. We were also able to make it to the downtown Boise Saturday market for the first time (with Ruby) and out to coffee with friends. Later in the afternoon we visited her Aunt Heather and made it to Target to pick a few things up. We also took the dogs for a walk this morning! Its official…she is mobile!

Thanks again to all of our family and friends. Your love and support through all of this has been tremendous and means the world to us. We also give thanks to the Lord for all the answered prayers and the love He shows us every day. It’s pretty awesome…

Love,
LPro

8-29 Post

Whirlwind (epilogue)

We would be remiss in not mentioning how much support we have received over the past couple of weeks. We have been very blessed by so many different people since this whole adventure started two weeks ago tonight. While we couldn’t possibly hope to mention everyone who has helped out, we certainly want to send out our most sincere thanks.

From all of the gifts, to the people who were there for the delivery, to the people who had meals brought to the house, to the folks who have watched the dogs and the house, to the people who made sure that we had a nice anniversary dinner on the night we came home from the hospital, to the people who have visited from out of town – we appreciate all of you and all you have helped us with.

It has been overwhelming to experience such an outpouring of love and support. If we have not had the chance to personally thank you, we definitely apologize, but we will get to it, as we appreciate all of you a great deal. Ruby is very lucky to come into a world where so many people are there for her and her family.

Sincerely,
Kris, Leah, & Ruby

Whirlwind (pt. III)

Sorry this last part is so late in coming – things have been busier than we expected as we get back into our daily routines.

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."]

Click on the picture to view all -

Day 3-7 post

Whirlwind (pt. II)

After Leah gave birth to Ruby early Tuesday morning, the nurses put Ruby through their standard series of tests over the course of the first few hours of her life. Even before she was examined, the hospital staff was marginally concerned about infection. Because Leah started labor from home, and her water broke several hours (~9) before she received any antibiotics, they were continuously looking and checking for infection. I think this is just one of those things that hospitals respond to very conservatively, as the last thing they want is to deal with an infection, but I also doubt that they would be nearly as concerned about it if Leah would have been in their care from the beginning. In her initial examination, the main issue they discovered was that Ruby rhythmically moved her right arm for almost 15 minutes. They mentioned that sudden twitches or strange movements from babies are normal, but that rhythmic movements such as these could actually be a form of seizures. We somewhat dismissed this, as the nurse downplayed the significance quite a bit, but it turned out that this would be more important than we had ever imagined.

The other issue we had to fight in the hospital was Ruby’s blood sugar level. The hospital will test a baby’s blood sugar a few times shortly after she is born. They initially tested her blood sugar about 2 hours after she was born, and she had a very good reading - a 108. A couple of hours later, they came back to test her again, and she only tested out at a 48 (they always want a baby’s blood sugar reading to come back > 50). Well, unbeknownst to us, that triggered a series of 7 follow-up tests to make sure that she can maintain her blood sugar levels. The problem with this whole situation is that the second test is to determine whether or not she can maintain those levels after she has been fed, yet Leah had not had the opportunity to feed Ruby yet, so it seems like that would invalidate the test, or at least they would postpone the test until she had fed Ruby. Unfortunately, neither were the case, so Ruby had to endure 7 more tests throughout the course of the day (all coming out > 50 since she was actually able to eat by that time). This was fairly frustrating, as it seems that no one used any context to make many of their decisions, so you were somewhat at the mercy of hospital protocols regardless of the true nature of the issue.

As a result of the rhythmic movement in her initial exam, they also put her through an EEG test (measuring the electrical impulses in the brain), some blood work (to determine if she had any infections), and an ultrasound of her brain (to see if they could find any structural issues). Thankfully, both the blood work and the ultrasound came back showing no issues. We were not so lucky with the EEG. The EEG showed significant seizure activity going on in her little brain, and all but confirmed that the movement she exhibited in her initial exam was in fact a seizure.

This was obviously very difficult information for two brand-new parents to process, given that all we could see was our near-perfect baby girl. It is just not something that you prepare yourself for mentally. Thankfully, we had a wonderful neurologist come and explain the implications to us, which helped to put some information behind the initial news. It was still a little scary, but he said that this can obviously happen with newborns, and that many times, they will actually outgrow it to the point where we wouldn’t even need to worry about it a few years down the road. As a result, he scheduled an MRI for Friday and said that he would follow up with us that afternoon to discuss the results. Until then he felt we would be just fine heading home and watching for any more signs of seizures instead of having to wait it out at the hospital (hallelujah!).

That is kind of the scary part of those first few days, but on the other side of things, it sure was great to have so much family and so many friends come by to see Ruby. I think all of the grandparents were able to hold Ruby within a couple of days of her birth, and they all beamed from ear to ear, just as you might expect. In addition to the grandparents, Ruby was able to meet several of her aunts and uncles for the first time and many of her “inherited” aunts and uncles. It was also great for us to just see her and hold her and generally take everything in. Those first moments are so precious, and I am glad that we were able to savor them with her. Despite the knowledge that she had experienced seizures, she really displayed no outward signs of behaving unlike any other newborn, and we enjoyed every moment we spent with her.

I hope to get everything up to date with pt. III, coming shortly…

Click on the photo below to view all...

Days 1-2 Post

Whirlwind (pt. I)

Whew!

We are finally catching our collective breaths after the birth of our beautiful daughter, Ruby, enough to post something on our blog. We had hoped to do this much sooner, but as you will read below, we have all had to deal with a little more than we initially bargained for. In a nutshell, we are very happy to finally be back at our house with Ruby and starting to establish our new routines with her as part of the family. She seems to be doing very well, as she is prolific at doing all of the things that new babies do (eat, sleep, poop). We are ecstatic to have her, and we are really looking forward to seeing her grow and develop over the course of many years to come.

As many of you know, Leah intended to give birth to Ruby here at our house under the supervision and guidance of the wonderful people at Treasure Valley Midwives, and with the support of our incredible doula, Molly. After waiting nearly 2 weeks past her projected due date, Leah finally broke down and decided to try some castor oil to get her labor started. To her relief, the castor oil did exactly as she had hoped and actually kick-started active labor around 8:00 PM on Sunday, August 8th. After a few hours of contractions, we gave Molly a call and she was kind enough to come over and join us in the middle of the night. Leah continued labor throughout the evening and into the morning, so we finally called Paula, from Treasure Valley Midwives, at around 7:30 AM. Paula arrived shortly afterward, and she brought Kathleen and Jill along with her to help us all through the remainder of the labor process – we all became very close (both literally and figuratively) over the course over the next several hours. I won’t go into any of the details of the labor here, but I do want to make a few quick comments about the labor experience at our house:

1) Leah was amazingly impressive. I really can’t come up with enough superlatives to describe what she accomplished/endured – I definitely have a new appreciation and respect for my wife that I didn’t even know was possible until then. She displayed such a determination and resolve to deliver the baby the way she wanted, yet such a sense of calm and control throughout the process that it could have only come from a combination of her faith in God and her love of Ruby.
2) We appreciate Molly so much – I don’t know how we could have made it through without her. She spent 30 hours of her life continually waiting on us hand and foot to make sure that Leah had everything she needed to make this experience as positive as possible. We are extremely grateful that The Lord brought her into our lives, and we hope that we can continue to keep in touch as Ruby grows.
3) Paula, Kathleen, and Jill were awesome! They brought a collective experience and guidance that we leaned on heavily throughout the day. It feels like the used nearly every tool in their considerable toolbox to help Leah try to deliver Ruby at home. Every time it felt like we may be getting close to a roadblock, they would find a new way to potentially get around it. We also very much appreciated their honesty and candor when it became fairly obvious that Ruby was turned in such a way that it would likely be best for everyone involved to go to the hospital.

At around 8:30 (24 ½ hours after active labor began), we made the decision to finish the delivery at St. Lukes Hospital. Leah was extremely grateful for both the epidural and the pitosin at the hospital, and after a few minor heart rate issues and a brief discussion of a c-section (which ended up being unnecessary), she delivered Ruby without issue at 5:30 AM on Tuesday, August 10th.

I was going to make this all into a single posting, but after seeing how much I have already written just about Ruby’s birth, I will follow-up with subsequent post(s) to talk about the rest of our week.

Click on the photo to view all...

post

Bathroom video

Before & After

House Remodel