Proverbs 3 5 Trust in the LORD with all your heart and lean not on your own understanding;
6 in all your ways acknowledge him, and he will make your paths straight.
We are still in the hospital with Scarlet. All day we have believed that she has pneumonia and bronchiolitis caused by RSV. These are very nasty diseases. Unfortunately, we are familiar with them, and I have been so sick with worry for Scarlet. Her arrival at the hospital on Sunday evening was by a dramatic ambulance ride, and something I never want to repeat again. That was after almost 2 hours spent in urgent care, and then we had 3 hours in pediatriac emergency at Beaumont, and only then was she admitted to the pediatric unit. And here we still sit. I am thankful for the doctors and the nurses, especially the nurses, who are really patient advocates as well as caregivers. Last night when we arrived I asked for(demanded) a pediatric pulmonology consultation to happen today, and the respiratory therapy staff and nurses kept telling me it would be "someone" who was an associate of this "wonderful" Dr. Doshi, and unfortunately Dr. Doshi was on vacation for the holiday. The nurses raved about him, the residents were kind of in awe as they spoke his name. Come to find out he is the Director of Pediatric Pulmonology here at Beaumont. Partway through the day, after I had asked a hundred times, I was told that he was coming, then I was told that maybe not, and then I was told that the computer system went down so they were unable to check who was coming in for consults, and the doctors were unable to receive pages because it is all done electronically. So I was disappointed, and I figured that we would just accept the diagnosis that we were given, and that I would be glad that I have the next two weeks off of work to help her recover. As my parents and Stefan were getting ready to leave for the evening, Dr. Doshi arrived, and after another long wait, he came into Scarlet's room (which we are now sharing...yuck), and spent quite a bit of time with us. We were able to explain that for the last three months, she has just not been able to overcome wheezing episodes, and that we didn't feel the medicines were helping, we didn't know how to help her, her pediatrician was beginning to question our choices, and we basically felt stuck between a rock and a hard place.
To add to that, I confessed to him that I have been scouring the Internet for any kind of literature, medical reports, studies, definitions, medical sites, patient boards, anything really, to pinpoint Scarlet's symptoms. The medicines that she is taking are powerful asthma medications, but they DO NOT seem to be effective against this wheezing. And the majority of the time, my girl is happy, eating and drinking just fine, sleeping great, smiley, and playful. It's very strange. And it's also very obvious when she does not feel well. She acts like a sick baby. But the sick baby times are way less than the amount of times she is wheezing. The wheezing is constant, sick or not sick, and it's maddening, worrisome, and kind of heartbreaking because as a parent, you never want to think that your baby is struggling for one of the most basic things: breath.
All of my constant reading late at night led me to something called Broncholmalacia . I don't mean to say that I have it all worked out, but the symptoms of this disease are Scarlet. Along with its cousins tracheomalacia and laryngomalacia, which Slade was born with, all of these are basically congenital birth defects of the bronchus, trachea, or larynx. That's the bad news. The good news is that kids with these defects typically grow out of them by the age of 2, like Slade has.
So when we spoke with Dr. Doshi tonight, and I asked him about this, he agreed. The official diagnosis has to be made as a result of a bronchoscopy. We are going to schedule this in January after Scarlet has a chance to heal and recover from her sickness. He doesn't feel she needs the asthma meds. He cut out two of her medicines tonight, leaving her on one antibiotic for an ear infection, and a steroid for her upper airways, along with a leukotrine inhibitor, which is a safe drug.
After he listed to her for a long time, he said it could be bronchomalacia or tracheomalacia. The scope will be definitive. She does have to go through a sweat chloride test tomorrow morning to rule out cystic fibrosis. But he said he is 99% sure that she does NOT suffer from that. Please continue to pray the report from that test is a CLEAR NO WAY!
I know that no parent wishes their child to have a congenital birth defect. But trust me when I tell you that I will be so relieved to know a diagnosis. It will mean Scarlet will be a wheezer and that colds will affect her longer and harder than other kids. But it will also mean elimination of powerful medicines with possible negative long-term side effects. It will mean a peace of mind that all we hear is the sound of the air being pushed through, but that she is getting all the oxygen she needs to be normal and healthy. It will mean that she can go to daycare and we don't need to worry, they don't need to worry, she isn't spreading or getting sick from those kids anymore than any other normal baby.
I have to remember that God made Scarlet who she is the ways she is for a purpose. I don't know why she suffers with this. I don't know why any kid suffers. It will be one of my first questions when I get to Heaven. But ALWAYS, ALWAYS when I come through the fire of parenthood on the other side of a crisis, I see the Lord's work at hand. If I had taken her to the pediatrician instead of urgent care, we would have not been admitted to the hospital, or if we were, it wouldn't have been Beaumont. If I had not had prior experience with airway malacia, I would not have known what to look for. If Scarlet had not been assigned the nurse she was given last night, I would not have known to trust Dr. Doshi. If I had not kept asking for a pulmonology consult, he wouldn't have made it here. If the computers had not gone down, Dr. Doshi would never have called the hospital on the off chance to see if there was someone who needed him. The long three months we have endured may be ending.
If it's not bronchomalacia, then I trust we are in the right hands of a great physician who has an alternative treatment plan to figure out what comes next. And we can live our life with a lot less worry in the coming weeks because we know that even though Scarlet is wheezing, she is not "sick". She is healthy, she is oxygenating. She's just noisy. Some kids don't sleep. Some kids have weird behaviors. Some kids have hearing or eyesight issues. There are any number of things. My kids have a wheezing thing, one of which we know (Slade) was caused by laryngomalacia, and one for which I am hoping broncho/tracheomalacia.
At the end of the day, she is always in the hands of Jesus, and I freely admit that I have been angry and feeling forsaken for weeks. Unable to understand why my daughter can't breathe, or so I thought, I have begged and pleaded with the Lord to heal her or show me what to do for her. He has. Just not the way I thought he might. And so the verse I quoted at the beginnning of the post is one I will keep reminding myself of in the coming weeks as we continue our journey as Scarlet's parents.
Scarlet's bronchoscopy will be in January, a few weeks from now. Before he left and after he examined Scarlet, Dr. Doshi said she does not have pneumonia, and she has a much milder case of RSV and bronchiolitis than we were first told, and she will be okay.
Proverbs 3:4-6 (The Message)
3-4 Don't lose your grip on Love and Loyalty. Tie them around your neck; carve their initials on your heart. Earn a reputation for living well in God's eyes and the eyes of the people.
5-12 Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; he's the one who will keep you on track. Don't assume that you know it all. Run to God! Run from evil! Your body will glow with health, your very bones will vibrate with life! Honor God with everything you own; give him the first and the best. Your barns will burst, your wine vats will brim over. But don't, dear friend, resent God's discipline; don't sulk under his loving correction. It's the child he loves that God corrects; a father's delight is behind all this.
My sister, Emily, and her husband, Joshua, are very creative people.
This year, they have just decided to make these Christmas and Winter craft pieces to sell. There are so many more (CUTE) examples than what I am showing here; these are just the pieces I bought for our house! You should buy some, too! ;-)
Since I took a half day off for Scarlet today (Stefan took the other half), I got to watch her enjoy Sesame Street for the first time. She has seen bits and pieces of Elmo dvds, but this was the first time that I sat down with her in front of the television, and we watched together. She loved it, and she spent a good 30 minutes just totally entranced by all the characters and activity. When they started singing or dancing, she just wiggled her little booty all over the place. It was hilarious.
I don't mean to complain, complain, complain on this blog. I'm just me. For over a week now, I have refrained from saying anything on here, only sharing the basics with our family or very close friends. I get tired, as you might imagine, of the comments, and the endless questions, and the wondering why. Always why? why? why? Trust me, if I knew, I would give you the answer, and we would be fixing it. I simply am exhausted. I suppose we all feel this way at times. So, now I spill the beans. Scarlet is sick, sick, sick. It seems like she has been sick for three months now. Last week she started with the wheezing again, and I was so worried one morning last week that I texted my family to ask them to pray for her because I didn't know what else to do. My dad jumped in his car and came to watch her for me. After taking her to the doctor that day, who agreed with my decision to put her on steroids (since we have a pharmacy in the kitchen) and give breathing treatments every four hours, we made the choice to keep her home and get her well. Good thing, because the results of her blood test showed that her white blood cell count was soaring (22,000), and so she is also on a broad-spectrum antibiotic because the pediatrician was concerned about bronchitis or pneumonia settling in her little lungs. So far getting well has taken 9 days now, and we aren't there yet. We both work. Everyday. Basically, we are paying our childcare provider to not watch her. It's been hard, and we are so grateful to our families, who have stepped in and picked up the slack for us, driving an hour early in the mornings, and sometimes in bad weather to watch our girl. And I am still unsure about next week. What if she's not better? What do I do then? I don't even have enough sick days to to comfortably take time off, and Stefan doesn't even get sick time! It's the classic struggle, and I am sure all those better moms who stay at home with their kids can feel good about their family decision when they read about my worries and frustrations because I work to provide the health care that is keeping her breathing. So what do we do if she is still wheezing on Sunday night and we are faced with waking her at 6:30 to take her to daycare? What?
Back to my point - I am so exhausted and worry-filled that I am not enjoying anything right now. I find it hard to enjoy this beautiful season, I find it hard to wake up in the morning, I find it hard to smile, I find it hard to relax, I find it hard to make life fun for the boys, I find it hard to make dinner, I find it hard to have order, I find the sound of giggling boys annoying, which makes me sad, and then I get angry at myself, and then I am sad again, and I have to count to ten before I react, and take a deep breath. I know times are hard for so many right now. I know. I am thankful for my job, for Stefan's job, that there is, hopefully, a light at the end of this twisty tunnel we are in. I know she will grow, she will get stronger, she will be okay. I have to believe that. It's the best I can do right now. So I'm asking. I'm breaking down and asking, please pray for me, for us, for her. I know some of you already are, and thanks for that. I don't know how much more I can take, but I know I'm right there on the edge, and I think I am a really strong person.
It was surreal for me. The whole pregnancy was a joyful time from the very start. I had so wanted a third baby, but as a couple, Stefan and I were not on the same page. I can very much understand, and even agree, with his point of view. Babies, who turn into kids, require a lot of money, time, emotional, spiritual, and physical energy, and our life was already very full with our two wonderful sons. We were really very happy and as a family, we were in love. My pregnancy was a total surprise, as we weren't trying to have a baby (in fact, we have never tried to have a baby, and I count that as a blessing).
I can vividly remember the day I found out I was pregnant for the third time, July 18, 2007. I had been at the beach with the boys that morning, the kind of day that was just baking. I remember coming home late morning, all gritty with sand and chapped lips and squinty eyes, and getting the boys to lay down for a quick nap. I was planning on a long afternoon because we were going to the Ann Arbor Art Fair with my family. For the few weeks prior, I had really been trying to lose weight, and I had joined Weight Watchers. It wasn't going well. Although I was following the program religiously, I would either just be the same weight each week or even had gained some! I was so frustrated, and it really never occurred to me in those early days of summertime that I could be pregnant.
The day I got home from the beach, I had one pregnancy test left out of a pack of two. I bought the tests on a whim, thinking that I didn't feel "right" over the weekend, but when I took the test, it was negative, so I put it out of my head and went on with my week. I mostly decided to take the second test to quit wondering about it. It had been three of four days since I took the first one, and I didn't really expect the test to show up with two lines. So much so that I had never even shared with Stefan my recent suspect about the possibility of a baby, or that I was feeling "off". When those two lines appeared on the little stick, my whole body just kind of jolted, and I don't know that I can really convey the heart-stopping thrill of seeing a pregnancy test turn positive.
My first thought was that Stefan was at work, and I had to call him because when he got home we would still be in Ann Arbor...and I wouldn't be able to tell anyone until I told Stefan. Soon after, I was also thinking that he might just have a heart attack. When I called, the poor man was trying to enjoy lunch, and all he could say was, "Excuse me?"
It was a pretty great feeling to show up at my parent's house and say nothing but hand over the pregnancy test to see for themselves. The boys were excited, and most of all, it was thrilling because Allison, my sister, had found out about her pregnancy exactly a month (to the day) before.
The following seven and half months were wonderful. It was my healthiest pregnancy, to date, I didn't gain much weight at all, and I tried to relish every moment because I knew it was to be my last. It was also the only one in which I experienced some nausea, though. It was fun to be pregnant with my sister, and to imagine the new joys that a baby girl would bring to our family. And EVERYONE who found out we were having a girl had the same comment, "You finally get a girl." To be honest, that was really the most annoying thing, and a little rude. It's my personal opinion that you don't have babies to get the "one" that you want. And I would have been completely thrilled with a third boy; in fact, we only could come to terms with a boy's name, and I found it very hard to believe that we could and would have a girl. You may not believe me, but it made no difference to me or Stefan what gender the baby might be.
Fast forward to February 27th, 2008. My doctor had planned an induction for me that day to avoid having a baby on leap day. And while it was still two and half weeks until my due date, the baby needed to come out; she was enjoying all the wonderful holiday food I had been eating and was gaining weight at a steady pace. Having had a 9+ pound baby the first time around, I was all too happy to oblige so that I could have an 8-pounder.
I worked that day, and it was really strange to know that one day I would be at work and then the next day, I would be a new mom again. My sister, Emily, had graciously agreed to stay with our boys through the night and bring them to the hospital the next morning or the next day, whenever the baby arrived. So at 6:30 that evening when we left, it was just me and Stefan. It felt momentous, that drive to the hospital. I wasn't worried or scared; I was happy, and it seems strange to say, but at 31, I felt like a grown up. I was driving to the hospital with my husband, the person I love so much, and we were going to be welcoming our daughter into the world. It was an awesome feeling.
When we arrived, it was quiet at the hospital, and Stefan and I were experienced at this kind of thing by the third time around so we didn't have many questions. The night was quiet and dark with swirls of snowflakes gently falling around us as we walked through the main entrance and made our way up to Labor and Delivery.
As we idly watched our way through Wheel of Fortune and American Idol with our daughter's heartbeat thumping through the monitor's speakers in the background, I couldn't help but wonder what the night would bring. The waiting was mundane, but the coming event was so not. Would it be long? Would it be painful, or would my epidural take care of that? What would she look like, our little Scarlet Grace? Would she be healthy (our biggest concern)? It was well after 9 P.M. before the ball really started rolling, and I was given the drug to induce my labor. Sometime around 10 P.M., just our parents arrived and did some talking and praying and retreated to the waiting room. Soon after, my wonderful doctor arrived to assess "the situation". It was just about midnight, when the new day was arriving, that she decided to break my water. I'll spare you, Internet, the gory and glorious details of delivering a baby naturally. I say naturally because that darn epidural failed me. Oh, my right leg was number than doornail, but that was about it. I felt every movement that tiny baby was making. But the process of labor isn't what makes you mother. Certainly, it's a rite of passage, and I think that I would be sad about missing out on it, actually, but like walking through a firestorm, literally or figuratively, it's how you come out on the other side.
Scarlet Grace arrived both fiery and gently, like her name. She came into this world boldly, yet it was so peaceful and quiet in that room, just the four of us, doctor, nurse, mom, and dad, waiting with our hearts open. The elation I felt as the adrenaline rushed through me while birthing her was incredible. As the mom, ironically, you take a back seat in the process. Everything is about the baby, and it's so gratifying and almost haughty to know that you are creating a family. One of the best parts of it all is being able to watch your husband watch you have a baby. Every emotion plays out on the face, and while I was of course the one feeling her birth, I was also watching it by watching Stefan's face and eyes. She was born at 2:46 A.M., just two hours after active labor really began. Having never had a baby in the middle of the night, it was a totally different experience than my first two children who were labored throughout the length of the day(s). The busy humming of the labor and delivery ward is eerily quiet, lights are off, interruptions are minimal, and there was no big waiting crowd in the lounge. In fact, Stefan rarely left my side to give updates because they were all sleeping, and when he eventually went out with the camera to show pictures, only his mom was awake and the others awoke to the sight of a beautiful baby girl.
In my mind, that night is recorded in memory snapshots, like the ones they take at Christmas time that have that glowy effect all around the edges, and my mental movie is on permanent slow motion. I can savor every sound, sight, and detail of the delivery room, the cadence of the nurse's speech, the doctor's progress reports that energized my efforts, the smell of the handsoap, and the awkward feeling of the bed. The moment I became her mother and her little squirmy body was placed upon my chest was among the four greatest moments in my life.
The early apprehension we felt about adding a third child to our brood melted away so quickly. On paper I still see the financial implications of my maternity leave and baby supplies, and another nursery to decorate, and baby food, and everything else "baby". But in our heart of hearts, we know that our strong, graceful baby girl was intended for great purpose within our family.
We spent the week of Thanksgiving in Six Mile, South Carolina. As small as it is, I don't think I've ever actually been anywhere in "town" except for Gin Shoals Road and Durham's! I know there must be more to it, but maybe next year. We spend each Thanksgiving week with Stefan's family. This year, I was able to leave work a little early, and we thought, logically, that we would not have to spend the night on the road, and we would arrive earlier than in past years. We were wrong. First of all, we had to turn around because SOMEONE forgot to put all the necessary items in the car. By the time we backtracked, the kids wanted lunch, and it was 12:30, which was still earlier than we usually leave, so we stopped and got them some food. Finally on the road, we made good time until Dayton, Ohio. Construction. Three lanes down to two. Almost 2 hours just SITTING there, and because of the sitting we were unlucky enough to be in a congested area at rush hour. As soon as we made it to where the road opened up, BAM...accident right in front of us. Luckily we were able to swing around it and hightail it to Cinci, where we waited in more traffic. It just took forever. I-75 was closed because of a tanker fire, so congested, so we finally stopped in Eastern Tennessee and spent the night and made it to South Carolina at the same time we usually get there each year. I guess the fact that we had good intentions counts for something!
It's always nice to see Stefan's extended family; we aren't able to spend much time with them throughout the rest of the year. There was a lot of eating and laughing and talking going on, and the we had a chance to see some of Stefan's family history on his dad's side.
Later in the weekend, we had the opportunity to go horseback riding with Stefan's dad, brother, sister-in-law, nephew, and our family (except Scarlet, who was napping with Grandma Ruby). Spencer was allowed to ride his own horse, and he did so awesome! It was NOT an easy trail. It was up a mountain, down a mountain, across a stream with a waterfall, and all around the woods, but it was a lot of fun, and it happened to be the nicest day of the whole week with warm sunshine and temperatures in the 60s. Now we are back to the daily grind, however, Stefan reminded me that there are 13 workdays left until our long Christmas vacation, and that is a very good thing! Although, I still have LOTS of shopping to do, but thankfully I can do much of it online. On Monday, I took Spencer to the library to paint windows for the holiday season. All the library windows were painted, and Spencer and I were assigned one right by the front door, so we took the opportunity to say Merry CHRISTmas in a festive and creative way.