Thursday, December 30, 2010
With Zilla, though, things have been so much different. I think I've said it before, but the baby's abdomen is measuring small. They keep telling us that we just have a skinny baby, but I've had ultrasound after ultrasound, and now I'm at the point where I'm having to do a kick count twice a day. Things like that add worry to this pregnancy.
But every time I worry, I hear this whisper--Trust Me. It's such a settling voice. But here's the rub: When I hear that voice, I realize that it doesn't necessarily mean that everything is going to be perfect. Instead, I know that it means that no matter what happens, God's love will wrap around us like a hand-knitted shawl. It will warm us in our joy or help to comfort us in our sorrow or help us endure in the difficult days.
It's been doing that for us with Lily all along.
Monday, December 27, 2010
We finally caught the cookie monster!
My mom got Lily this toy. I love it because it flips so Lily can look at it while lying on the floor, she can stand to play with it, or she can sit like she's doing in this picture. Lily doesn't play much with toys, but today, while on the floor, she was patting at the pieces that hang down. It was such a sight to see!
Christmas Eve was spent at my mom's. This is another toy that Lily got, but she wasn't interested in the unwrapping. We tried to wake her up but to no avail. This toy can be put on Lily's crib, and she can use her feet to play the "piano." Lily LOVES touching things with her feet, so I just know she'll love this toy.
Lily loves giving Gabriel hugs!
Tuesday, December 21, 2010
But there's a part of me that knows this story has been romanticized, and I feel that sentiment now more than ever. The other night, I just couldn't help but think about Mary and how pregnant she was on that trek to Bethelehem. How uncomfortable she must have been, how painful labor had to have been, how exhausted she had to have felt. We hear none of that in The Christmas Story. Perhaps for a reason, but I'm not here to discuss that.
I just can't help but feel a deep appreciation for what she must have gone through. Although I am due January 14, as far as we know, the doctor is going to induce on January 7. It's hard to get up off the floor, let alone to get out of chairs. I have to roll out of bed, and my arms help pull me up because my legs just aren't working like they should. My hips hurt, and I just. . .feel. . .old. The other night, I went to hang out at a restaurant with some girls from church, and we sat on hard barstool-type chairs. I was there for a little more than 2 hours. Boy, did I pay for that the next day.
So I can only imagine what Mary experienced. Poor Mary.*
*As a side note, as any mother will tell you, and I'm sure Mary will too. . . It was all worth it.
Saturday, December 4, 2010
Motivation interests me. Not so much the type that gets people up and moving, but more the motivation that makes people tick. One such topic that I have trouble understanding is when people--especially the medical community--have such a callous attitude towards children with Trisomy 18. I just can't understand how a person who has dedicated his or her life to helping people can turn his head and refuse to treat this child with the dignity he or she deserves.
A few weeks ago, I happened upon a blog written by a medical student. The author of this blog has created a "study guide" that relates certain medical issues with musicians. This blog I read related Trisomy 18 to Eddy Money. He hoped he wasn't going to hell for such a post.
I left a comment to this author and told him that I didn't think he was going to hell--that as a mother of a baby with T-18 I wasn't offended--and that I thought it was great that he could create a mnemonic device for his studies. I briefly told him about Lily and the fact that some of our T-18 babies didn't fit the mold of statistics and asked him to keep that in mind when he became a doctor. Little did I know the impact that comment would have.
A few days later, I received this email from a girl named Laura.
I was visiting my friend's music blog site and I came across your post. After reading through your blog, and watching Lily's videos, I am left without words on how to thank you. She is beautiful. I can only imagine the struggles you must be going through and have gone through. As another student at Jimmy's university I have become all too familiar with the crazy ways we find to remember things. Every disease we learn gets filed away nice and cleanly into our inner-brain disease archives. So many things get shoved in until these diseases become just words. We forget that every disease will be associated with a patient. We all come in with such an intention to do good and help as many people as possible, and then throughout our years in school, with constant reading, tests and lack of human contact something gets crushed a little. Recently I have been so confused about what I am doing all this for. At this moment there really doesn't seem to be any light at the end of the tunnel, because nothing but books alone help people forget love for humanity. Then I read your blog and found that love again.
Lily is amazing and wonderful and already a very powerful woman!
More med-students need to become aware of things in a much more personal way.
Needless to say, I was touched. I always hope that this blog will help others who have a child with T-18, living or in utero. Never did I imagine Lily's blog would have reached out to someone in the medical community.
Laura and I exchanged a few emails. In those emails, I explained to Laura our reason for giving Lily the chance to live and what we dealt with from some in the medical community, among other things. I found two interesting things out (among other things): 1) that Laura's view of abortion has changed, and 2) that Laura and her friend Jimmy (the author of the above-mentioned blog) have been talking to their fellow students about Trisomy 18.
I have been so impressed with this young lady. And I want to say that it's not because she has changed her view on abortion. It's more that she has been willing to open her heart and recognize the need to do so at a time when books and intelligence were shadowing her heart from the true reason she is pursuing the medical profession--her love for humanity. It makes me wonder how many med students this actually happens to.
In Laura's emails, I have gained a bit of compassion that I had perhaps lost in the medical community. I have found a bit of understanding in what "motivates" the thoughts of some of the doctors involved in Lily's care. Some of that makes sense now.
Laura has motivated me as well. There's a program in South Carolina that connects medical students with families of children with disabilities. This program is designed to move medical students from the "textbook definition" of a disability into the reality of life with a disabled child. I had been wanting to get involved with this program but always put it off. Since communicating with Laura, I have contacted the organization, only to find that the program doesn't exist in the Charleston area, but they see a need for it to get set up. Hopefully, I can be a catalyst for our area's program. There's definitely a passion in my heart for it.
And to Laura, thank you for opening my eyes to the life of a medical student. You are a remarkable young woman with such an impressive depth of understanding. And thank you for recognizing the beauty of our little ones with Trisomy 18. You have so much to give to the medical community.
Thursday, November 25, 2010
Jedidiah's story has been on my mind so much lately. It heightens my appreciation for our experience in the hospital with Lily and how our doctors and nurses gave Lily so much love, despite their knowledge of the statistics. Dave believes Lily was able to make it out of the hospital because of the love they helped us shower on her. The tenderness, the care, the compassion that they gave her--oh, how can we ever repay that?
So when Dave and I were talking about things we were thankful for. . .well, I just couldn't help but feel the deepest, renewed sense of gratitude for the hospital staff who took care of us after Lily was born.
Thursday, November 18, 2010
I lost mine today. It's the second time this has happened, and both times involved Lily. The first time was the day of my amnio, when the genetic counselor asked me if I knew anything about Trisomy 18. My voice failed me, and all I could do was cry. Luckily, Dave, my knight in shining armor, was there to answer for me. And, luckily, he was willing to be there for me today, this second time that I've lost my voice.
I've been dealing with vomit for two weeks now, and today, I think the bending from all of the weight that comes with a baby who has Trisomy 18 broke me. It's not so much the vomit itself or having to do laundry every day or any one piece of this parcel. It's the complete package, plus the worry that comes along with it, plus the feeling that I'm not being listened to when my heart tells me we need to get to the bottom of this, plus the uncertainty. I'm afraid to go places, worrying that Lily might make a mess all over the place.
It all started after Lily's g-tube got placed, but I can't say the g-tube is the culprit. (Can't rule it out, either.) And it really didn't begin until the first time Lily got sick after the g-tube got placed. I think I've posted about it before, but she either sneezes or coughs and then she vomits. I'm not talking about a little dribbling down her mouth. I'm talking about projectile. I'm talking about 1 to 4 or 5 ounces being lost each time.
But it doesn't happen consistently, which is probably just as frustrating, and it doesn't necessarily happen while I'm feeding her (although it does at times). Sometimes it happens 15 to 30 minutes after I feed her; other times, it occurs 2 to 3 hours later. But it always happens with a sneeze or a cough. The doctor has prescribed an antibiotic, thinking that maybe she has a sinus infection or ear infection or UTI--not sure if vomiting would be caused by any or all of the above--but Lily's ear canals are too small to tell if she has an ear infection. She does sound a little gurgly sometimes, and her undiagnosed sleep apnea has been worse the past few days, so sinuses could be causing that. Her urine has a peculiar smell, which leads me to believe she might have a UTI, but it seems to me as if it's all speculation. That's not enough for me. I want answers.
So the vomiting started with that cold that came some time after the g-tube, and it's been pretty consistent that whenever Lily has a cold, this is what we can expect. Until two weeks ago. That's when the nutritionist suggested that we up her intake 1/2 an ounce at each feeding for a week and then another 1/2 ounce after that so she will be getting 6 ounces instead of 5. Last night, though, thinking that maybe 6 ounces is just too much for her right now, I lowered the dose to about 4 1/2. I awoke at one this morning to hard crying and vomit all over Lily and in her crib. This is the third or fourth night in a row that she's thrown up in her crib. Yesterday morning, she threw up while the PT was here, and today she's thrown up twice. So maybe the amount wasn't too much.
I'm so tired of all of this. Like I said, I want answers, or at least suggestions. Dave tried to call the doctor, but had to leave a message and the call was never returned. (I could not have done it. I cried just telling him all about it.)
The only ball I feel I have in my hands right now is to change her formula, which we did this evening. So far, so good, so maybe there's some kind of intolerance to what she's been drinking. I don't want to sound too pessimistic here, but I'm not holding my breath because the vomitting has been so inconsistent. It doesn't happen every time she gets fed. Is this one of those times?
The good news is that Lily doesn't seem to be in pain. After each episode, she cries or fusses (heck, I would too), but she gets over it and then wants to play.
There just seems to be so many possibilities:
allergy or sensitivity?
something wrong with her stomach emptying?
some ear, nose, throat issue?
could adnoids or tonsils cause something like this--I'm relating only because of the apnea?
Gosh, if anyone out there has any suggestions or a related experience, I could really, REALLY use a few pointers. It's frustrating to me, but I can only imagine what it's putting Lily through.
Enough venting for the night. I feel better, but I think I still need Dave to be my voice with the doctors. Right now, I'm afraid I'll just come across as some crazy woman speculating anything and everything that could be wrong. And something tells me that this is one time when I need to keep my cool.
Saturday, November 13, 2010
Last night, we asked Gabriel what he thought we should name the baby in the event we have a boy.
His answer? (Now, are you ready for this one?!)
And he was very serious about it.
I'm still laughing!
Thursday, November 11, 2010
Lily is on Medicaid because, well, basically, she has a disability. Without Medicaid, she would not have physical therapy where we've seen her improve at an unbelievable rate. (Our health insurance does not pay for it. I'm not sure if her OT or Speech or Orientation and Mobility is covered by health insurance or not.) Without Medicaid, we would not be able to give her the formula her doctors recommend, and I'm not sure if regular milk would sustain her and allow her to grow in the way her formula has. She surely doesn't take in enough solids to sustain her. (Oh, our health insurance does not pay for that either.) Without Medicaid, she would not have her stander--which I believe helps her constipation and I know develops her hip sockets to help avoid hip problems in the future--because, once again, our health insurance doesn't pay for it. And without Medicaid, we would have an astronomical amount of medical bills that would be very difficult to pay since I'm not working.
It angers me because--and I'm not gloating here--Dave and I are good people. This is not a system we are trying to beat. It's a system we, and Lily, could not live without. Making the decision to stay home instead of working was a very difficult decision, but it is one we made out of complete selflessness for our little girl. We have sacrificed to a point where I am sometimes tired of sacrificing. Luckily, every time there's a sacrifice to be made, I only have to look at Lily's smile or hear her coos or see the adoration in her eyes for her family, and I know that sacrifice has been worth it. Humbled maybe, but lazy we have not been. As a matter of fact, sometimes there's a sense of shame that attaches to this need.
So point blank. I am scared. I am worried about what the future holds for not only Lily but for every little boy or girl, disabled or not, lazy parents or not. It is not fair to them. There is so much research out there regarding early intervention (which Medicaid happens to cover) and how imperative it is to the developement of a child who is behind. It hurts to see how much Lily has benefitted from just this, and I'm appalled that South Carolina is even considering "[cutting] off coverage for everyone."
I'm so sorry to be venting here. My fear incites it.
COLUMBIA -- The 820,000 residents on Medicaid in South Carolina are breaking the bank and state officials are now facing a big decision: allow the program to run $228 million in the red or cut off coverage for everyone.
The state Department of Health and Human Services announced Tuesday that it is facing a budget crisis. The agency, which oversees government-run health insurance for poor people and children, will have to ask the state Budget and Control Board on Dec. 14 to run a deficit, a move that is expected to ignite a firestorm among politicians over what South Carolina should be expected to pay for in the face of federal health care reform.
Without approval to run a deficit, the agency proposes to stop paying doctors, hospitals and other health care providers who treat Medicaid patients on March 4. The claims would be received and processed but not paid until there is more cash in the bank.
The agency says it is backed into a corner. The state's dramatic economic downturn has forced more than 100,000 people in three years onto the Medicaid rolls, which now carry 43 percent of the state's children. And when the state accepted federal cash from the stimulus package,
South Carolina agreed not to kick anyone off of Medicaid by changing eligibility standards. What's more, state lawmakers further bound the agency by limiting places to trim expenses, such as by barring the agency from dropping the rates it pays the doctors who treat Medicaid patients. South Carolina is the only state that has prohibited its Medicaid agency from lowering the provider reimbursement rates, while at least 40 other states have done just that to manage budget shortfalls.
Jeff Stensland, director of communications for the Health and Human Services Department, said the agency has fewer resources to meet a tremendous growth in demand. The agency saved $22.9 million with cost-cutting measures, including laying off and not replacing staff. That's combined with facing $228 million in budget cuts in the past three years and having $550 million from its savings account transferred to plug budget shortfalls in other government programs.
"The challenge we have is simply paying for health care services for all the people who qualify for Medicaid," he said.
Decisions about what South Carolina will do to manage the budget crisis come with high stakes that include issuing IOUs to doctors or outright rejecting participation in the Medicaid program, resulting in a loss of coverage for the 820,000 people and $4.1 billion annually from the federal government that keeps the health care industry -- doctors, nursing homes and hospitals -- in business. Some programs on the chopping block also would affect services the state's elderly and disabled receive.
The five-member Budget and Control Board is expected to take up the matter at its December meeting. From there, lawmakers and Gov.-elect Nikki Haley will have to make decisions about what South Carolina will do to address the budget crisis going forward.
Department of Health and Human Services
Deficit Reduction Plan - PDF
Haley said she will fight the new health care reform law all the way to the U.S. Supreme Court. Meanwhile, newly elected members of Congress, including 1st District U.S. Rep.-elect Tim Scott, a Charleston Republican, have vowed to make its repeal a top priority.
Ben Fox, communications director for Gov. Mark Sanford, said the governor's office still is in discussions on the developing issue that came to a head Tuesday. Sanford oversees the Health and Human Services Department as part of his Cabinet and is chairman of the Budget and Control Board. The board has control of much of the state's purse strings and manages financial crises when the state Legislature is not in session. Lawmakers will convene again in January.
State Rep. Dan Cooper, a Piedmont Republican who chairs the House Ways and Means Committee, said that given the consequences he is not sure the Budget and Control Board members will be left with a choice. He serves on the board with Sanford, the state treasurer, comptroller general and Senate Finance Chairman Hugh Leatherman, a Florence Republican.
Cooper said the impact on withdrawing from the Medicaid program cannot be overstated. Workers across the state, from the doctors and nurses and dentists to the medical suppliers and offices professionals, risk losing their livelihood, worsening the state's already bad economic situation and high unemployment rate, Cooper said.
"We're certainly trying to explore all the options out there," Cooper said, adding "I don't know what that all means yet."
Covering the politics of the Lowcountry, South Carolina and the nation.
Likewise, Deputy State Treasurer Scott Malyerck said late Tuesday that outgoing Treasurer Converse Chellis is mulling over the situation. Chellis is reviewing information from the Health and Human Services Department and crunching the numbers.
Comptroller General Richard Eckstrom, who just won re-election to another term, said the state constitution makes it clear that the state cannot spend more than it takes in. He sees the only option as working with the agency to find ways to push the spending back into the black.
"This is going to require us to make tough choices because spending beyond our means can't be an option," Eckstrom said, noting that the federal stimulus money that he opposed was never "free."
Wednesday, November 10, 2010
Tuesday, October 26, 2010
Thursday, October 21, 2010
Maybe I'm just needing something to blame. It's just really hard anymore when Lily gets congested because she has a hard time tolerating anything that we feed her through her tube. In the past two days, I've dealt with vomiting in her car seat, on the living room floor multiple times, and in her bed. It's never fun because I'm usually holding the syringe when it happens. First comes the cough or the sneeze, then the mess.
It's also heartbreaking to see our little girl who's usually so full of life to be so lethargic. She's slept off and on all day long. She did stay awake long enough to watch Barney (her favorite show) with Gabriel. Then, this evening, she ate a little by mouth and stayed awake while we went for a stroll. But as soon as her bath was over and she was dressed, she was out. Poor thing. I guess she's really trying to get over this cold.
But here's the kicker. Lily was denied the Synergist (spelling?) vaccine. This is the vaccine for RSV. I consider it a much-needed vaccine, especially for children with T-18, because I've been through RSV with Gabriel, and trust me, it's not fun. When I talked to the receptionist at the doctor's office yesterday when I was making Lily's appointment, she told me about how Lily was denied, but then she said, "Well, if she gets to a point where we have to put her on a breathing treatment, we can appeal the decision." I told her that Lily was having trouble breathing, so she said that we would just have to wait and see what the doctor found. Lo and behold, he heard wheezing and prescribed a breathing treatment for Lily. (May I add that Lily did not see her usual pediatrician at this appointment.)
When we went in for her recheck today, her usual pediatrician looked at her file and said, "God works in mysterious ways." I was a little perplexed because he sounded so happy while I'm sitting there with my sick little girl. He explained how the information about the denial had been sitting on his desk and he was wondering how we were going to handle it, and here's Lily with a diagnosis of wheezing. He felt that was enough to appeal the vaccine.
I've seen time and time again with Lily that God does work in mysterious ways. I've also seen that most of those times, I begin mad because something didn't go the easy way, but I reach a point, humbled, because I wasn't patient enough to see it through, to see that God's mystery has been there all along. I can be so blind sometimes.
Now, Lily might still be denied, but at least if she is,this episode is the beginning of what Lily needs to convince whoever needs to be convinced that Lily can definitely benefit from this vaccine.
Friday, October 1, 2010
Thank you for following this week. It has been fun sharing these videos of Lily. I hope, in some way, that they can be used to slow down the "incompatible with life" mentality that others are so quick to assign to our children. I know, I know. . .the statistics. They are there and they are real. I do not deny that. But we never truly know. After all, they are only statistics. And on the other side of them, well, that's where our miracles reside.
Thursday, September 30, 2010
I grieved in both ways. I think most parents are terrified of having a child with special needs. Autism, down syndrome, and the like--no parent wishes this on their child. I will admit it: I was terrified. But now that I have Lily, I can understand that joy that a child with special needs brings to those who love her. Had I not had Lily, it's a joy I would have never known. To me, that is special.
This video is of Lily right before bathtime. She LOVES getting a bath. She thinks that any time we take her clothes off, bathtime is near, for she gets so happy and excited.
Wednesday, September 29, 2010
When Lily does something developmentally new, I feel this joy I've never felt with my other children.
That does not mean that I don't feel joy with my other children. I certainly do. It's just more intense with Lily. I think it's so intense because I've always had an expectation for Rani and Autumn and Gabriel. I expected them to smile and roll over and sit up by themselves and laugh and to have all those other appropriate developments at various stages of their lives. With Lily, I have no idea what to expect.
I rejoice when she smiles and rolls over and holds her head up. I can't get enough of her sweet laughter, even though it sometimes sounds like she can't decide whether she wants to laugh or cry. I have hope that one day she'll be able to walk in some sort of way. That hope lightly floats in my heart like a bubble on a soft wind.
Lily laughs. And my heart laughs and sings and rejoices with every laugh she makes. Enjoy, as I do.
Tuesday, September 28, 2010
Then I went online and began looking. And I found children like Annabel and Zoe and Vera, to name a few. I heard from Sarah with her little girl, Alice. I began to realize that children with Trisomy 18 could have quite the life. No, it might not be easy, but these children could be happy, life-loving children. And my hope for Lily Grace, child with Trisomy 18, began.
Here is a video from later that day. If she's not sleeping or sucking her thumb and just chilling, this is how Lily is--playing with Gabriel, cooing, lifting her fat legs, rolling, and lifting her head. She has a blast doing this!
Monday, September 27, 2010
I know that there are doctors out there who immediately suggest termination upon seeing that their patient's baby has Trisomy 18. I understand their reasoning if they are protecting themselves, but what I don't understand is how those doctors can't see beyond the label.
Yes, I am very aware of the statistics. They have stared me down EVERY day since Lily's birth. I KNOW how fortunate we are that Lily has made it this far and that she is doing well considering. I also know that others aren't as fortunate, and my heart breaks for them day in and day out.
But the alarming phrases and statistics make it seem as if our babies can't have quality of life, and to that, I beg to differ. I think about Lily, our two little Annabels and Rebekah and Kaitlyn. Akaiya, Vera, Nolan, Alyssa, Mikayla. . .this list is bound to go on! These little rebels shake their fists at those statistics! And while I'm sure not every day is easy, these little ones smile when they hear What about quality of life?
So I'm creating for my blog a Quality of Life Week. I usually don't post a whole lot of videos, but this week, I'm posting videos that show Lily throughout the day, enjoying life to the fullest. I begin with a video of how she is first thing in the morning. Like her brother is and was when he was a baby, she is a bundle of joy and so happy. My heart beams to see her this way.
Thursday, September 23, 2010
Three months ago, when Lily's PT did her evaluation, Lily was not able to bear weight on her legs while being held. She would just collapse. Some time along the way, she started to love standing while being held, so her PT decided about a month ago to put Lily against one of our chairs and see if she would lean against it and stand. Lily wouldn't do it.
Today, because Lily has improved so much with her standing time, the PT decided to try putting her against the chair again. This time, Lily did it! Then we got out the small ball that Lily stands against to practice her standing. Gabriel asked if he could hold her hand. The therapist let him. During this time, the therapist pulled Lily back a little so that she wouldn't rely on leaning on the ball. Gabriel continued to hold her hand. The therapist pulled her back a little more, so she was standing up straight.
So there they were, Lily and Gabriel, standing beside each other, holding hands. Lily was looking up at her brother, admiring him. I teared up.
Sometimes when we're in the grocery store and Gabriel is in a shopping cart that has room for two to sit in it, he'll say that one day Lily is going to sit beside him. I just keep on agreeing. It breaks my heart because I just don't know if she ever will or not. That doesn't keep us from trying to get her to that point--boy, do we try--but we're not guaranteed anything with this little one. So I was thinking about how Gabriel wants so badly for Lily to sit beside him in the shopping cart and how he's also said he and Lily are going to run beside each other some day. Seeing them standing beside each other like that today was as close as we've come (even though she was still being held up) to realizing that dream. I wish I had my camera close by. It was such a touching moment.
It's something we deal with every day when we're working with Lily to try and build her muscles. In our head, we know she may never have the muscle tone to walk on her own or even with a walker, but in our hearts. . .well, we just keep on believing that this little girl will one day move mountains. She's on her way! You just wait and see!
I have another prayer request. I got an email yesterday from Kristina. She is due on October 25, and her baby, Layne, has Trisomy 18. Layne has a VSD and her left kidney isn't emptying all the way. She is six weeks behind in her growth. Kristina is afraid that Layne will be here soon because both of her other children were early. If you will, please pray for Kristina and Layne and their family. Thank you.
Wednesday, September 22, 2010
Every month or so, we get a gift from you. We have no idea who you (all) are, but we are so grateful for your kind and giving spirit. We feel as if we don't thank you enough, but there are so many times I say a silent thank you. Moving to Charleston was not easy financially, even though now I think we're doing ok. But how many times have we needed diapers or gas or a date night or clothes, and the gifts you provided us with were there? Countless!
Today, an even bigger gift was given. It was the usual from one of our "friends," but the envelope had been ripped open at the very top of the envelope, as if someone had taken a knife right to the seam. Had it been ripped a fraction of a bit more, the cards could have fallen out. (I'm hoping you only sent three. . .that's what we usually get.) But they didn't! Even the prayer card was still in there, reading "God is my strength and power: and he maketh my way perfect" and "I can do everything through him who gives me strength." Is this a sign?!
So today, I send a thank you to you, my givers, but also to those who honestly handled our mail. How easy it could have been to take such a gift! I love it when I see evidence of good people in the world! Thank you!
On another note: There is a little girl out there, Lilly, who has Trisomy 18. She is in severe heart failure, but her parents have found someone to do surgery on her provided she gains enough weight. The little thing is at 4 lbs. 9 oz., yet the doctor wants her to be as close to 10 lbs for her surgery. They feel they are racing against time. With all the tests and hookups, her mother is wondering if she's chosen the right option. Please, please pray for this little girl and her family. While we never had to consider surgery for Lily, I can remember wondering if we chose the right life for her with our selfish love for her. Oh, what this mother must be going through! If you're interested, you can follow Lilly's story at http://pray4lilly.blogspot.com.
Saturday, September 18, 2010
I was thinking about science fiction/fantasy movies where the main character is walking through the woods, and all of a sudden, the trees come to life and one of them grabs the main character. He struggles, but the tree's grasp becomes stronger. Maybe the tree pulls him into the ground; its aim: to destroy.
Then my thought changed. What if, instead, the tree grabs the main character, but its aim is not to destroy. The main character doesn't know this, so he struggles. The tree's grasp becomes stronger, but only because all it knows is its purpose--still to pull him into the ground, but not to destroy. Instead, to share with him the connection that this tree has known all of its life. Its connection with the soil and the organisms, with what has lived and died. And in this connection, the main character would find peace. If only he knew. . .
I thought about it for a while. Then I took it a step further and related it to reality. What if that's how it is with God. Are we that blinded main character who struggles against all the bad that humanity has to offer, whether it be fear or anger or jealousy or worry? Are we fighting against God because life isn't going the way we define 'perfect'? Do we see Him as the tree trying to pull us under to destroy us? Or can we look past the struggle and instead find that our struggles connect us to that around us, with what has lived and died? Can we accept the peace that He is offering us beyond the struggle?
It isn't easy. I had an ultrasound the other day. This baby is weighing a little smaller than it should be. Only a week or so, and normally, that would be ok. But the fact that Lily has Trisomy 18 had them a little concerned. There are no markers that should give more concern, but when the sonographer was looking at the baby, we were talking about Lily and how she only showed the choroid plexus cysts and the missing digit in her pinkie. Those are the ones that scare me, she said, because you don't know. And they don't know. So we go back next month for another ultrasound to see how the baby is progressing weight wise.
I'd be lying if I said I wasn't a little worried. There are days when I stand in the shower and think about it in a worrying type of way. And every time, the song "Trust and Obey" comes to mind, and I hear this still small voice that says Trust me. Whatever happens is for my good. That puts me at peace. . .for the time being. So why can't I just go past the struggle and instead fall into the arms that don't want to pull me under as my struggle might suggest? These arms only want to offer me peace. Why can't I just accept that?
Friday, September 10, 2010
Lily got her 15 month shots last week. A few days after, she got a cold. Of course, we always worry with colds, so a lot of saline and nose sucks were under way. The little girl was miserable.
On Tuesday, Lily had an appointment with her new nephrologist. Our pediatrician sent her back to him, even though her next appointment with him wasn't until January, because Lily has had two urinary tract infections since June. He's considering putting her on a prophylactic antibiotic. Apparently, because Lily has the pelvic kidney and it sits lower than normal, UTI's just may become common. Hence, the need for always having an antibiotic in her system.
On Wednesday, Lily had an appointment with the pediatric surgeon to get her button changed to a bigger one. He wanted to wait until next month to change it out, but there had been a good bit of leakage that morning, so he replaced it--still with the same size button. We'll still change to the bigger size next month.
That afternoon, Lily vomited a little, probably because of the drainage from her cold. Then she spiked a fever of 102.4 that night and vomited as soon as I got her milk in her. While her fever was down the next morning, she was still vomiting.
The next morning, I made an appointment with the pediatrician and called pediatric surgery to see if this was common behavior that accompanied a g-tube replacement. It was not, so they told me to go to pediatric radiology after her pediatrician appointment and get a scan of the tube area done. The pediatrician could find nothing wrong with her, but prescribed an antibiotic mainly for what he deemed a sinus infection and then wrote a prescription for a chest x-ray (since we were already going to radiology) just to be sure no pneumonia had set in.
Three doctor's appointments in a row. Three times driving to downtown Charleston, which is at least a 30 minute drive. Three times interrupting the not-so-strict schedule of lunch and naptime for Gabriel, and if that isn't enough, making him sit in those sterile rooms, usually strapped in his stroller (unless there happens to be toys in the room for him to play with). I have to say he is such the trooper, though. Three times paying for parking that is not in our budget and humbling myself asking the doctors to sign a sheet for mileage reimbursement. It was more than I could handle that day.
When we got into the parking garage, Gabriel's VeggieTales CD was playing a song that we had sung at church camp, "Give me oil in my lamp." That song was a prayer in my heart. A plea, you might say. Especially the line, "Give me umption in my gumption help me function, function, function."
When we got to radiology, Lily was asleep. I was watching her sleep and noticed how labored her breathing looked. Fear set in. When they called me to check-in, the receptionist didn't know about her g-tube scan. She seemed to the point where she wasn't going to register us for that one, but she made a few calls. As she was making her calls, I was sitting there thinking, Woman, this is not my day to make a scene. If you don't let Lily get both of these procedures, you're going to hear about it. No, you're going to hear this little girl's LIFE story. And I kept thinking how I just didn't want conflict. I didn't want to be that crazy woman everyone stares at.
I don't like conflict.
I teared up and started crying. The lady at the desk asked me if I was ok. I nodded yes. Are you sure? Again, I nodded. Just overwhelmed? Yes, I nodded. So much for functioning.
Lily got both scans. And everything was ok from both. No pneumonia. No g-tube wrongly misplaced.
We came home and gave Lily pedialyte, which she kept down for the most part, and started the antibiotic. This morning, Lily woke up feeling so much better. The stuffiness is, for the most part, gone and she has kept everything down (even though I haven't given her milk yet). I'm not sure if the vomiting was a virus or just a reaction to the phlegm. I do know that every time she vomited, she either coughed or sneezed right before it happened. You'd think you could chalk it up to the sinuses, but she had a little diarrhea, too.
So many variables involved. Sinuses? Stomach virus? G tube? Trisomy 18 taking its toll? It's been a little bit of a scary situation not being able to pinpoint what's wrong with her, but it looks as if we're at the end of it. It feels good to know when you succeed in fighting a cold, especially when your child has Trisomy 18.
Saturday, August 28, 2010
I think we tickled the cardiologist pink. I think she was so happy that she was the one who was able to give us the terrific news that Lily's VSD is almost nonexistent, that it's so small that blood is not getting through it. I've been waiting for this news for almost 16 months, and finally, I got to hear it.
That news is so good, that Lily won't have to go back to the cardiologist for another two years. Two years!
The only reason we would need to contact this doctor is if Lily would need to have surgery for some reason. Lily still has two other trivial holes in her heart, but lots of people have them, and they go through their entire lives with them. Lily would just need a dose of antibiotics before surgery to keep infection from getting into these holes and spreading throughout her whole heart.
I was concerned with the damage the VSD may have done. None, according to the doctor. Her heart is a perfect size and sounds great.
In essence, Lily's heart is healed. What a miracle!
God has been so good to us!
Thursday, August 19, 2010
I don't know who you are, but I'd like to thank you. Thank you for the sweet comment, but thank you also for not even knowing that you would put a knot in my throat and bring tears to my eyes with the words you had written, and thank you for bringing such a beautiful thought to light at a time when I think I really needed it.
Too many years ago, I lost my "Nana." She was like a second mother to me, and I miss her dearly. Upon seeing your comment, my first thought went to my nana. I know, without a doubt, that she is up in Heaven, and I couldn't help but imagine that she was saying this to me: OMG'osh! God is soooo good! She would know, wouldn't she!?!
I've always wished that she were alive to meet Dave, because I know she would love him and be so happy for me, knowing that I have such a great husband. I believe she would be so proud of Rani and Autumn for their accomplishments, and she would delight with me in seeing them become such beautiful young women. Then there's Gabriel. She would think he is so precious and smart, and I can hear her laugh right now at all the funny things he does and says. And Lily. Oh, how she would have so much praise for our little miracle, and she would be so proud of all of her accomplishments. I've always wished. . .
You wrote your comment, and I imagined her saying to me Your family is just simply beautiful...
I needed to hear that from her.
Wednesday, August 18, 2010
Quitting work to stay at home with Lily (and Gabriel) has definitely been worth it, but it has not been super easy financially. We make do, but not without sacrifices. Luckily, we had a little money in savings, along with frequent "surprises" in the mail to pull from during those months when we went "over budget." I try to have a positive attitude about it, recognizing that it's all for the very best, but there are days when I bemoan not having the courage to buy a pair of shoes or not really needing to buy a maternity outfit.
Then, just the other day, I hear about families living here - a child's room having nothing but a bed in it. A bed without sheets - just torn remnants of the plastic liner that comes on a new bed. I heard about roaches crawling around in broad daylight and broken pieces of furniture littering rooms in the house. I think the worst, though, is the concrete floor. I imagine this dull, hard flooring and wonder how much joy you can pull from that.
Yet I sit here in my carpeted, three bedroom, two and a half bath, two-story apartment. The one that has a dishwasher, a washer and dryer, our beds with sheets, more space than I need even when it might not be the amount of space that I want, and I wonder What in the heck am I complaining about?
I guess complaining about what we have (or don't have) is easy. . .until we see what life could really be like. If I think about it, I have everything I need, and even though it may not always sound like it, I am thankful. But when I certainly know it could be worse, that thought causes me to look around, suck it up, and stop wishing my life away on all that unnecessary stuff my longing heart window shops for.
I'm sometimes in that same situation with Lily. I see children with Trisomy 18 who are sitting up or walking or able to eat "normally" or who are reaching for their toys, and for a very quick moment, my heart wishes for more for her. But I know there are other children out there with her condition who suffer their own problems, many that are more severe than Lily's. That's when I stop and remember that I love Lily for who she is, not what she does or doesn't do, and I stop my longing heart from window shopping again. What AM I complaining about?
PS--I spoke to Dave about how we might provide families in difficult situations without hurting their dignity. We worry about the balance of helping others without insulting them. We have just received so much from friends and family, and we want to pay it forward to others who are less fortunate.
Monday, August 16, 2010
Over the weekend, we met some friends of ours at the beach. They recently moved to the Charleston area, and it was such a nice time to be around these friends of ours--Sarah, Ward, Ethan, Wyatt, (twins) and Sylvie. Sylvie is around three months old, maybe a little closer to four, but seeing her beside Lily really puts things into perspective. (Note: Sylvie is a cute, big baby, but she's not THAT big. She is THAT cute, though!)
Saturday, August 14, 2010
Lily doesn't like the bright sun, but she loves the water. The waves scare her a little, but she relaxes as soon as they pass.
I cannot describe how much Lily adores her big brother. And he adores her as well. He'll just go up to her and cuddle with her. "She wants my 'battention,'" he'll say.
We went crabbing for the first time the other day. I had so much fun. Truly, it's better than fishing! I can't help but think how much of a little beach boy my little boy looks in this picture.
The first time we went to the beach, Lily fussed the whole time we were there. That was pre-thumb. Now that Lily's found her thumb, she uses it to our advantage!
Friday, July 30, 2010
The sonographer said she'd give a look just to make sure. Sure enough, no kidney in the normal back area, but to my TOTAL surprise, she found that Lily has a pelvic kidney, fully functioning! I could not believe what I was seeing! Understand, Lily had an ultrasound when she was a few months old. There was no evidence of a second kidney. And now it's there! The sonographer said that she saw that Lily's known kidney was a normal size according to her age. That gave her reason to believe that another kidney was there. Otherwise, her kidney should have been bigger.
I know this sounds unbelievable. I still can't believe it. Some may chalk it up to misdiagnosis. It happens. I know what I believe. Praise God! But here's the rub: Lily's main problems included a VSD that is healing and giving the doctors a reason to believe that it will eventually heal itself and one kidney. Sure, there are other smaller issues, but do you see what I'm saying?! It is possible that these main problems will not even be there. If that's the case, and everything else remains status quo, our only other worry will be warding off sickness. Now, T-18 scares me. There is always that fear that some major organ shutdown or some other drastic thing could occur. We've got it good right now, but I'm always looking over my shoulder for that to change. Then I turn around and see this beautiful little girl, smiling and growing and being so precious, and I focus on today and what we've been given to be so, SO thankful for. It renders me speechless.
On a different note. . .please pray for Erika and her unborn little girl Hannah Joy. While an amnio recently revealed that Hannah does not have T 13, 18, or 21, there are some concerns, including a two-vessel cord and heart defects. Erika's blog is http://psalm139wonderfullymade.blogspot.com/. Please pray for this family as they deal with the uncertainty of what's ahead.
Tuesday, July 20, 2010
Saturday, July 17, 2010
For fourteen months, we've been working with Lily to get her to self sooth. It's always been one of us rocking or me nursing or her temporarily finding her fingers, but nothing has calmed her. If we tried to help her find her fingers, she'd fight and fuss more. Those had to be on her terms. A pacifier never worked.
Tuesday, July 13, 2010
Saturday, June 19, 2010
I can't say enough about Dr. V. He spent so much time getting to know us, and he was so excited about Lily. Truly, the guy was practically shaking--he just couldn't believe that a Trisomy 18 child would make it to 13 months. It was just so nice to see him recognize and appreciate the miracle in Lily.
The appointment was only a meet and greet, but he asked when we planned to set up a regular appointment. I told him that actually, I was going to make one for soon because I wondered if Lily had a urinary tract infection. She had had a small wet diaper that morning. Dr. V, after telling us how crazily booked his day was for a Thursday, put his schedule on hold and did a routine checkup. Then he had his nurses cath Lily. Sure enough, Lily has a UTI. She is now on antibiotics, so hopefully, she'll be better in the next few days.
As for her g tube. . .what took us so long to agree to this procedure? Actually, I know what took us so long, but wow! I'm nursing Lily maybe twice a day. She's eating every four hours now, but even that will be changing soon. I was afraid that she would be dependent on nursing to get to sleep, but that's not even the case. She nurses at night, but she doesn't fall asleep. I hold her and rock her for a few minutes, but then she starts to fidget. Once she does that, I lay her in her crib, she rolls over on her right side (her favorite!), and she falls asleep. Thursday night she did wake in the middle of the night, but I think she either had gas or pain from the UTI (if there is pain from that). She's been sleeping all night long, too. Oh, how I've needed this for a long time!
As for eating, she's made such progress! She now will open her mouth and take her food. At first, she would just sit there with her mouth open and make this awful whining sound, as if to say "what do I do with this? what is this in my mouth?" She still doesn't take enough bites to make a difference, but there's such pleasure in seeing how much she's progressed! Her therapists would be so proud!
It's all such a breath of fresh air!
Friday, June 11, 2010
I'm just glad we're out of the hospital and Lily is doing well. Thank you, so much, again and again, for your thoughts and prayers. What a blessing you've been to our family!
Wednesday, June 9, 2010
Lily's oxygen levels are getting better. They dip every now and then, but again, she's bringing them back up on her own. She does have some oxygen for the extra help.
Her cardiologist came in today. The surgeon wanted to make sure the oxygen problem wasn't a heart problem. Dr. L. and his resident doctor listened to Lily's heart and determined that it wasn't a heart problem BUT. . .drum roll, please. . .they also were not able to hear Lily's heart murmur. According to Dr. L., the VSD may be closed! They are going to perform an echo on her tomorrow to verify that. I'm trying not to get my hopes up--as much as I'd like--because he said it could be from the surgery that they're unable to hear the sound. However, he feels pretty confident because of the sound he heard the last time Lily had an appointment. If this is the case, this is WONDERFUL news!
Lily gets her first feed tomorrow. I'm hoping all goes well, but I'm sure it's going to be an adjustment for her little stomach. As for now, I'm off to bed to get that sleep I was threatened I'd better get. Good night!
Tuesday, June 8, 2010
Tomorrow we go in at 8:45 for Lily's g-tube placement. I'm quite nervous, so I'm just trying to put it in God's hands and let Him take care of our little girl. Still, fear wants to shake me every now and then.
Dave and I have no idea what to expect. I've had other mothers tell me that they were discharged the next day, but Lily's doctor said she could be in two to three days. Luckily, Dave's parents are down, and we have someone to watch Gabriel during the day. I'm expecting an exhausting couple of days to follow, but hopefully, over time, Lily's surgery will keep her little belly fuller longer, and she'll get better night sleeps. I'll try to keep everyone posted on how the surgery goes, but that will depend on computer access. Thank you for the prayers.
Saturday, May 29, 2010
Because Dave's parents are here, Lily is getting more opportunities to eat. Dave's mom feeds her most of the time before I nurse her, and Lily is getting at least three meals a day. The most bites I've gotten before the bananas today were fifteen, and that seemed like a lot. But here she took twenty and cooperated!
I wish I could say that we could cancel the g-tube surgery, but she's still not taking a bottle. I just can't continue to nurse her the way I've been doing. I'm too exhausted anymore. Maybe tonight I'll try her new "bottle." Think perm applicator with a tip on the end. Maybe I will post a picture of it soon.
I just can't help but feel like so many prayers have been answered here lately, and it looks as if the feeding prayer is gaining ground. Dear, faithful prayer warriors, thank you!
Thursday, May 20, 2010
There's another reason we're choosing the g-tube, though. Nursing every two to four hours is very draining, especially when you've done it for a full year. Since Lily won't take a bottle, I can't be away from her for more than three hours. I've gone to concerts and a movie or two and school productions of Autumn's with Lily. Any time she gets fussy, I nurse. It usually works, but it's not always comfortable nursing in public places. I'm probably going to have to take her to Autumn's graduation, which she isn't very happy about, but I can't be gone from Lily for more than three hours, and I'm afraid that is going to last longer than the amount of time I can be gone. So Dave and I are looking at the bigger picture--the whole family--and seeing how it will be a positive for us all.
I'm a little afraid of this surgery. I know other babies with Trisomy 18 have had it at younger ages, but I bet it was a nerve-wracking experience for their parents. It just didn't sound good when the cardiologist said, "You just have to worry about her breathing. She might not remember how to do it." Scary.
But I'm hoping. I'm not just hoping that the surgery goes well, but I'm hoping that Lily will be less fussy (she's really getting better, but she's still fussy at night) and that she's sleeps better throughout the night because her belly will be full.
I have the utmost confidence in the doctor who will be doing the placement. He, too, was amazed at how well Lily is doing.
If you are a mother of a child with Trisomy 18, and you've been through this procedure with your child, please, if you have any information, email me and share. I've heard of the bolus feeds and the continuous feeds. Which is best? (Lily will continue going to a feeding specialist to work on her eating issues, so we will continue feeding her by mouth as well.) Do you use a pump? Is it portable? What problems have you run into? Is this easy to care for? I know nothing! I know that I should also be doing some research in the meantime, but where is the time? I'm stealing a few minutes just to type this post. Then it's off to the garage to get things in order for our move.
Tuesday, May 11, 2010
Before we showed the video, Dave explained how the song was written by his best friend, Michael Ray, and his bandmate, Ilhwa Gallo--both of the band Eleventh Hour. Mike has told me in the past that this song belongs to me and Dave. What a gift! After Dave's explanation, I shared how the first time I heard the song, I could only think of how I've "held" Lily up to God, saying "Consider this lily, Lord. I'll try to understand and accept whatever you deem, but please, consider this lily." I can't imagine anyone mother of a child with special needs not feeling the same way. For that reason, I dedicate this song to all the mothers out there who have a child with special needs and who have said, "Lord, please, consider this lily."
Monday, May 10, 2010
He said that when you look at her heart from one angle in the ultrasound, it looks moderate, but Lily's tissue is closing the hole, so when you look at it from a different angle, you see the tissue there, blocking the blood from entering into the wrong chamber. Wow!
And we don't have to see him again for another six months. In the past, it was every three months. Way to go, Lily!
So thank you for your thoughts and prayers. And a special thank you for the prayers specifically for her VSD to close on its own.