Thursday, June 30, 2011
Tonight's visit was a bit calmer. We still had a couple of moments where her alarm sounded, notifying the doctors and nurses that she needed help, but for the most part, it was a pretty quiet evening. Linda and I took turns as usual sticking our hands through the incubator and holding our precious one, quite literally covering her with our hands. But today for some reason, we didn't do too much other than that. We just kind of sat there and stared. We marveled at this beautiful child sleeping so peacefully before us, and our hearts were full. Halfway through the visit, Linda turned to me and said, "I could sit here and stare at her for hours." Which is funny, because quite literally right before she said that, the same thought ran across my mind.
No need to play, poke, pat, or anything, just sit and watch. Made me think, is that how Daddy God is with us?
Does he just enjoy sitting and watching us? It's kind of different than the usual picture of "religion" that we're fed, isn't it?
We're taught to read the bible, pray, sing songs, serve. We're constantly in a flurry of activity. But I wonder, as important as those things are, maybe sometimes Daddy God just wants us to just sit with him, just to be.
Could it be that we don't have to do anything and Daddy God just enjoys being with us, just because we are his? I mean just like Alicia, all she was doing was sleeping. She didn't open her eyes. She didn't look at us. She didn't smile, cry, speak, nothing. She just slept. And we were content just holding her, covering her with our hand, and watching. Just being with her.
Sometimes when I'm praying, I like to imagine curling up in Daddy God's lap and just letting him hold me. It brings me lots of comfort. But I can't usually hold that for more than a few minutes. A few minutes of that and I'm off and running, doing something else, checking Facebook, e-mail, or whatever. I really find it hard to sit still.
But after tonight and my experience with Alicia, I'm definitely going to try to sit still some more. And you know what, I'm going to try to stop striving so much. I know there's balance. But if I as an imperfect father, can love my child who has pretty much not done anything except for be alive to bits, then what about our perfect Heavenly Father? Am I better than he?
So great news about Alicia, her last IV was removed today! =) So she's got one less thing sticking into her, and she is becoming more and more free! The removal of the IV is also a huge indication that she's doing well. Doctors and nurses don't want to prick these kiddies any more than necessary, so if there was a high probability that they might need it again, they wouldn't have taken it out. So, them taking it out, at least, I think is a huge indication that they believe she won't be needing anymore IVs. Praise the Lord!
Now we just need to just get her weight up, and her breathing on par, and we'll be good!
Doctors say it might be a few more weeks before they take her off the ventilator, but they're definitely weaning her each day. Problem is that right now her breathing is really unsteady during and after her feeding times. I think I mentioned yesterday, that doctors suspect that this is because her stomach is expanding and taking up room that would otherwise be used by her lungs for breathing. To help with this problem, they decided to try using a machine that will time and spread out the amount of milk that gets injected into Alicia at one time. They're hoping that with the slower feeding, Alicia's stomach can digest as it goes so that it won't expand as much. It seemed to work pretty well today, although she still had a few moments of low oxygen, but for the most part, she was more steady with her breathing than in the past.
It was cute, as I said earlier, Alicia was sleeping pretty well during our visit. It wasn't until towards the end of our visit when she opened her eyes and looked at us. And of course, when she did, Linda and I cooed and talked to her. We were so excited that she was awake, until we realized what may have awoken her. Her feeding machine was beeping because it was done. And being that the machine was inside of her incubator, I'm thinking the beeping was probably echoing about, creating in essence an alarm clock. So our daughter was probably looking at us like, "Could you turn off that noise?" And we're all, "Hi, sweetheart! Oh, look at you. Can you see us?" haha.
Today begins our second month with Alicia. Another day, another victory! Praise the Lord!
Wednesday, June 29, 2011
Ever since Linda got pregnant last December, God's been speaking something to me again and again. Actually it started earlier than that.
Some of you know that Alicia is actually Linda and my second child. Linda was pregnant back at the end of 2009. Unfortunately, we lost that kid 8 weeks into the pregnancy because of miscarriage. Needless to say, the journey to parenthood has not been easy for Linda and I.
Early on during Linda's pregnancy with Alicia, we had another scare. One day, after work, I noticed that I had gotten several missed calls from Linda. I called her right back sensing that something might be wrong. When Linda picked up the phone, she had her, "I'm really scared, but trying to remain calm voice." Apparantly, she had started to bleed fresh blood, reminiscent of the time when she miscarried. She told me that she was on the way to the doctors and would stop by the office to pick me up.
On the way to the doctors, we sat in silence in the cab, holding hands and just praying and pleading with the Lord to save our baby. I really wanted to talk to Linda and comfort her, but I had no words. When we got to the doctor's clinic, we sat and waited while the doctor prepared. Finally, after what seemed like an eternity we were escorted into the examining room. Linda got onto the examination chair, and the doctor began to do a sonogram. He moved the probe around trying to find the baby's heartbeat, and at first there was nothing. Then there it was, the little blip on the screan. The baby's tiny beating heart. I had never been more happy to see anything in my life. Our baby was alive! And from what the doctor could tell, it wasn't in any sort of distress. His guess was that the bleeding was coming from elsewhere in Linda's body and not the baby, the gestational sac or the placenta. But as a safety measure, he gave Linda some pregesterone (an anti-abortion horomone) and put her on a week of bedrest.
After the week of bedrest, things stabilized somewhat, but we still had moments where we worried for the viability of our pregnancy. But in the end they turned out to be nothing to worry about. That is until the day before Alicia's birthday, when we faced our biggest test of faith yet.
And you know what God kept speaking to me through it all? "Don't worry." Sounds so trite and pat. The life of my child hangs in the balance, and I'm not supposed to worry?
Today, as I was e-mailing a friend of mine, God reminded me of something Jesus said while he was here on Earth. These words are recorded in the book of Matthew and the book of Luke. Jesus said, "Do not worry about your life ... Can anyone of you by worrying add a single hour to your life?"
I've heard these words often, but today, I began to realize that these words not only applied to my own life, but also to the life of my child. Can anyone of us by worrying add a single hour to our children's lives? The answer sadly, and maybe even frustratingly, is no. We can't. Worrying does not add to our lives. In fact, worrying, it seems, takes life away from us. It zaps our strength and paralyzes us. It steals our joy and our peace. It's a terrible thing.
But what is the root of worry? I think fear. We fear for our children’s safety. We fear for their welfare. We fear losing them. We fear having to face permanent life altering disabilities. We fear that we may never hear them laugh. We fear we may never hold them in our arms. We fear that they might get hurt. We fear that they might get sick. We fear...you fill in the blank. And believe you me, friend, I understand this fear. And as much as I want to be strong and pretend like fear never affects me, it does. So many times when I tell Linda not to worry, I’m telling myself too. So often as I'm reasoning with her and giving her all the logical reasons why we shouldn’t worry, why we shouldn’t be afraid, I’m trying to convince myself too.
The truth of the matter is though, that our children are not our own! Our children were created by our Heavenly Father for a purpose. That purpose might be here on Earth or maybe they have a greater purpose that can be served better by going straight to heaven, whatever it might be, they are our Daddy God’s children. And it’s for his kingdom and his purposes that they have been created. Those of us who are blessed enough to be parents, well, I like how a close family friend of ours put it, we are merely foster parents. God has given us the privilege to raise these children, but we must trust that he knows what’s best for them, and that he has the best in mind for them.
We love our kids and provide for them in the best way that we can. For the pregnant mommies out there, that means, eating right, resting, exercising, and taking care of you. For those who have living and breathing kids out and about them, that means loving them, teaching them, being patient, making sure their physical, emotional and spiritual needs are met. But beyond that, what can we do? By worrying, will we give them one more hour of life or will we only end up driving them along with ourselves crazy?
So what’s the solution? Trust and surrender. We trust that each of these children are gifts from God. They are his creation, and as many of you have reminded us, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. He’s the one that chose to create them. He will finish his work in his way. We must trust that he knows what he’s doing. And I’m talking to myself here too. Trust is the hardest thing, but so important if we are going to be living the kind of impactful life that I know many of us desire to live.
But beyond trust, we also must surrender - give up control. I'm realizing there is really only so much that we as parents can do. We must surrender, and let go. Give these children over the care of our Heavenly Father. So hard to do. Surrendering often feels like free-falling and losing all control, but there is a great freedom in that. Also, as my lovely wife reminded me of yesterday, each time we feel out of control, it's God's invitation for us to come to him and talk to him about it. It's his invitation for us to ask him for help. And it's a chance for us to know him more deeply.
It's a hard thing, isn't it? Asking for help? We are taught from a young age that we need to be independant and take care of ourselves. But with God, we don't need to act like we have it all together. He knows our limits and he invites us to come to him with our limitations and watch him work.
So we trust and surrender. We give Alicia over to our Lord, her Heavenly Father, the creator and author of her life. We trust in his plans for her.
Just a side note, a friend of mine recently sent an e-mail with a reminder that I thought was really poignant. The e-mail said, “Courage is not the absence of fear but the resolve to do the will of God in spite of your fear.” Or another version which states, “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” Whichever version you like, the idea is the same, having courage doesn’t mean that you’re not afraid, but you choose to focus on something bigger, and you choose to do something in spite of your fear. And It makes sense, doesn't it? If something isn’t scary, then you don’t really need courage to face it or do it, do you? Courage only becomes courage in the face of fear.
So we march forward with courage and we face tomorrow, knowing that our Heavenly Father has got our backs. And also, he’s got the best plan for Alicia, we believe that wholeheartedly.
Quick update on Alicia, as I mentioned in my previous post, she’s now a full one month old - huge milestone in the life of a preemie. If she’s made it this far, the prognosis for survival and living a fantastic life is great! =) Also, Alicia had her eye exam yesterday, and more great news! The eye doctor said that everything looks normal! She does have a minor case of ROP (for those of you who want to know what ROP is, I’ll let you look it up, I won’t go into it here). But it’s only Stage 1 ROP which is the mildest form of this condition. And for 90% of kiddos with Stage 1 ROP, it goes away on its own without any sort of damage to their eyesight. So we are so completely relieved. Praise the Lord for the great news, and thank you all for praying. Please do continue to pray that things would continue to progress smoothly for her eyes and all of her other organs, muscles and senses.
She’s also continuing to fill out and gain weight. She’s up to 666 grams today, gaining 12 grams from yesterday’s 654. More, Lord, more!
She’s been struggling a bit with her breathing, especially after she eats. We had a bit of a scare this morning during our visit. She in essence passed out, and doctors and nurses had to work on her for a few minutes to get her breathing and oxygen levels back up again. Her heart rate dropped significantly too. Not fun. But thankfully, the doctor was able to help her to get back on track. We pray that she’ll just continue to get better and better in that area.
No news yet on the brain damage, but we’ll keep following up on that and let you know if there are any further developments.
Keep walking friends. And please, please, do keep in touch with us. Write us e-mails, text us, call us, whatever. We want to hear from you, and I’d love to chat. If I can’t pick up, or don’t want to talk, I won’t answer. =0) Other than that, please do let us know what’s going on with you. As much as we value our own time and our own space, I do believe it’s very important for us to remain in community.
Tuesday, June 28, 2011
So what shall I write about for the 29th post? Well, I think first off we can start off with some updates on our little girl.
She is doing fantastic! Today we got the great news that she's up to 654 grams today regaining her original birthweight! YAHOO! =) But this time the 654 is all meat, none of this water weight that might get lost. Go baby, go!
Also, she's breathing better and better. Today her ventilator settings were pretty low - 15 breaths a minute at about 30% oxygen saturation. She had a few moments of oxygen deficiency during our visit this morning, but she was able to get herself back on track without too much prompting or help from Mommy and Daddy or the nurses, so this is good. =) We continue to pray for her to continue to start breathing better and better on her own. The goal is to get her off the ventilator ASAP, which we hope can maybe happen by next week. But that's up to the doctors.
Can I say that I just love my daughter more and more each day. Mommy had to use the ladies' room today during our visit so I got a few minutes by myself with Alicia today and it was so precious. After Mommy left, I sat down, stuck my hand through the incubator and covered Alicia with it. Then I began to sing. As I was singing, she opened her eyes and just looked at me. My heart melted. I better be careful, or she's gonna get spoiled rotten. But my daughter is absolutely beautiful. She's got these big eyes just like her Mommy and whenever she looks at me, my heart just swells.
The nurses all really like her too. It's cute how they call her Alicia, and then talk to her as they're helping her out. Like when the monitors start beeping, they'll come over and say, "Alicia, what's wrong? It's OK, Alicia. Be good, Alicia." Some of the nurses will even watch Alicia from across the room and check up on her even if she's not their assigned baby. She's already got this attraction about her that draws people to her. Love it!
Alicia will also have an eye exam today, and we'll find out the results tonight when we go to see her. The opthomologist will dilate her eyes then use a special scope that will allow him or her to see through to the back of Alicia's eyes and her retina. They're checking for any abnormal growth of blood vessels that may affect her vision. We pray for good results and that Alicia's condition will be good. Please continue to pray and we'll keep you posted on that.
We've been on this journey for nearly a month now, and it's been quite a trip. We've had our ups and downs, bumps and dips but through it all God has been our steadiness. Having all of you walking with us and journeying with us has been a huge blessing as well. I'm so thankful for all of the words and love that all of you keep sending our way. Please keep them coming.
One thing that has kept our spirits uplifted and joyful through this time is music. Over the past month God has brought song after song to mind that we just continue to sing over ourselves and sing over Alicia. Songs of encouragement. Songs of promises. Songs of joy. Music that has delivered powerful messages and strengthened our souls.
A couple of weeks ago a sweet friend of ours sent us this song. As I listened to it, I felt my heart soar, and I could sense God smiling down and giving us a huge hug.
For those of you who don't know the story that the song refers to. Back in the early days of the Christian church there were two missionaries called Paul and Silas and long story short, one day they were arrested, then flogged and beaten for sharing their faith. Sometime around midnight while they were in prison, instead of moping and complaining, Paul and Silas decided to pray, sing songs and worship God. Suddenly, there was a huge earthquake that shook the foundations of the prison making the prison doors fly open and everyone's chains come loose, setting them free. The amazing thing is that they didn't immediately run out, they stayed behind and shared their faith with the jailer, leading the jailer to come to faith in Jesus Christ. Amazing story.
Growing up in church, I've heard this story many times before, but of course once again, Alicia's birth gave me a new perspective on it. God wants to hear you sing. Amazing to think that the God of the universe could find joy in his children singing, even though he's got angels singing all around him every day. I've never heard an angel sing, but I have to imagine that it has to be a million times better sounding than any human voice. And yet, when we sing in the midst of trials, we bless the Lord.
Guess, Linda and I will keep singing then. =) As I said earlier, music has been a powerful medicine for our souls over the past month. It's helped us to stay positive and keep our eyes on the Lord, and it's given us strength. God has used music to help us find strength to press on through the dark days. It's nice to think that as we were singing, not only did we find encouragement for oursleves, that we were also able to bless our Heavenly Father. There is no greater desire for Linda and I than to make our Heavenly Daddy smile.
I look forward to hearing Alicia sing one day. I'm sure she's going to have a beautiful voice.
We keep moving forward friends! Alicia makes progress each day and each day that passes is one more day closer to the day that we can bring her home. I can't wait.
P.S. Just to recap. 1. Please continue to pray for her breathing that it will continue to improve. 2. Pray for her eyes that they would develop well. 3. Pray for her brain that any damage would take care of itself. 4. Pray that she continues to grow and get stronger. Thanks everyone!
Sunday, June 26, 2011
One thing that I've been really sensitive about are the words that I say and the words that other people say about Alicia and about our condition.
I may be a bit oversensitive, but I really believe that the words we speak out carry power. When we speak, we make proclamations. The proclamations can bring about blessings or curses over our lives.
If you think about it, it makes sense. In another part of the bible it says, "Out of the overflow of the heart the mouth speaks." The things we say come from what we believe in our hearts. What we believe becomes our personal "truths". And we interact with our environment based on what we think is ture. This brings about the results that we see day to day in our lives.
To drive the point further, the Bible also draws a connection with the tongue being like the rudder of a ship. It's a small part of the whole, but it can steer the entire body. The words we speak can influence how we see things, and therefore influence the direction we head with our lives.
A few weeks ago, I was speaking with an acquaintance of mine about Alicia. And she casually said, "It's OK, Campbell. She's a little weak right now. But she'll get stronger." And immediately, I stopped her. I said, "No, she's not weak. She's strong. She's a fighter." Perhaps, I was a bit harsh with her. But as Alicia's Daddy, I felt very protective over her, and I refuse to allow someone to speak such words over Alicia.
Linda and I are very careful not to say things like, "Poor, little girl." Or "Oh, look at her, it's so sad." Or "Oh, she's so sickly." I feel like these words are proclamations over our Alicia that bring about a curse. That's why Linda and I are very careful to proclaim life and health over our little girl. Things like, "You're growing so well!" "You're so strong." "You're powerful." "You're beautiful." "You're doing great." We want to make positive affirmations over her life.
Linda and I do not treat Alicia as if she were sick, or lacking. We do not go about our days moping about because we don't believe that she is weak. Did she come out in the way that we had hoped or expected? No. Does this mean that she's at a deficit from other kids? Heck no! Do we have to fight a bit harder in order for her to stay healthy and strong and for her to maintain her life? Yes. But that just makes her all the more precious to us.
I don't know if I'm making any sense. But it's just a deep sense in my heart, and I want to encourage all of you to examine your language. Not only about us or about Alicia, but about yourselves.
Are you constantly saying, "I'm no good. I'm ugly. I suck. I'm so tired. I'll never succeed. I'll never get anywhere. etc…" Check yourself and change your speech. You may be inadvertently pronouncing a curse over yourself.
Now I'm not saying that you start speaking positive things and that like magic everything will turn around. But as I said earlier, I do believe that the words you speak come from what you believe about yourself and what you believe about the world, and that influences the way you act and behave. And these behaviors therefore bring about results. So really watch what you say about yourself and others.
So we speak over Alicia the promises of God. That he has a plan for you, a plan to prosper you, not a plan to harm you. A plan to give you a hope and a future. He has come so that you may have life and have it abundantly. You are fearfully and wonderfully made for he created your inmost being; and he knit you together in your mother's womb. You are his work, and his works are wonderful. All of the days ordained for you were written in his book before one of them came to be. From birth you have relied on him. He brought you forth from your mother's womb. He will carry you even to your old age! Do not fear for he has redeemed you. He has summoned you by name. You are his. When you pass through waters, he will be with you; and when you pass through rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For he is the Lord, your God, the Holy One of Israel, your Savior. You are precious and honored in his sight. Do not be afraid, for he is with you. Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go!
Speaking of words, a dear friend of mine, sent me an interesting article from the Internet entitled "Ten Things Not to Say to Parents of Preemies." It was actually very interesting.
Here are the 10 things they mentioned:
WHAT NOT TO SAY
1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”
2. “At least, with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”
3. “He’s so small!”
4. “When will she catch up?”
5. “What did you do, that he was born so early?”
6. “Everything happens for a reason.”
7. “Now that you have her home and off all that medical equipment, everything will be fine.”
8. “You’re just being paranoid about his health.”
9. “She needs to be exposed to germs to build up immunity.”
10. “He’s how old? My child is the same age and twice his size.”
While some of these things don't bother me personally, I can see why they might be offensive or why they might hurt.
1. Yes. The end of pregnancy is hard. But you know what, we would be willing to face that if that meant our daughter wouldn't need to go through all of this medical treatment.
2. Uh. Yeah. This is something, maybe that is OK for the parents to say? But definitely not for someone else to say it. I think you'll remember me saying in an earlier post that I'd take sleepless nights and her crying any day, if we could have skipped the NICU.
3. Thank you, Captain Obvious. Although, this one, I don't mind personally. I'm proud of the fact that she's small, but strong!
4. Again, I don't mind this one personally as much. But I can definitely see why this would sound bad? I mean, "catch up?" as if she's falling behind?
5. This one bugs me. Or another variation, "How did this happen?" Uh. We don't know. Or how about my personal favorite was someone saying to Linda, "What's wrong with your body? This didn't happen to any of your sisters." Uh, thanks.
6. This one, I believe is true. But I can see how it is not very comforting. It's kind of a pat response. But since we do believe that God is control. We do believe that he's got his plan and purposes in place.
7. We haven't gotten her home yet, so I'll let you know how I feel when someone says this after it happens.
8. Again, haven't been home yet. But definitely can understand why this could be annoying. It's one of those things, unless you've been through it, it's hard to understand the concern.
9. This is just stupid.
10. Again. How insensitive.
And then there was the other well-meaning relative that said, "We of course hope for the best, but you know, she's so small who knows what kind of potential problems she may need to face in the future. If doctors say that she's going to have a lot of challenges, you may need to prepare your hearts and let her go." Thanks for the love. But what?
I mean I know it's not always easy to know the right thing to say in a situation like this, and I can understand wanting to show your care and we receive the love and concern, so most of the time I just laugh off comments like these, because, I honestly believe these people don't have any intent to harm or hurt us. They're just showing their care in the best way they can.
On a more positive note here are some things that the article suggests that you can say:
WHAT TO SAY:
1. Congratulations! (Though this is somewhat controversial: some parents are offended at being congratulated when their babies are very ill. Others are offended because no congratulations are offered.)
2. “Tell me about your baby.”
3. “How can I help?” (Or better yet, offering specific assistance.)
4. “This experience must be very challenging.”
5. “He’s beautiful — he looks like you” (or the other parent.)
6. “I’ve brought you a meal.”
7. “I’m available to talk” — indicating what you’re really offering is to listen.
8. “Can I drive you to and from the hospital?”
9. “Tell me what’s going on with her medically.”
10. “I don’t know what to say, but I am thinking of you and your baby.”
I think these things are great. Two big thumbs up from me. =)
Anyway, so just my thoughts for today. Check your words! Not just about us, but about yourselves too!
As far as Alicia goes, she's doing really great! =) She's three days away from her one-month birthday and she's up to 648 grams today - nearly gaining back her birthweight. =) Yahoo! Straight up from here, Alicia! Go! =) We claim it. She's eating so well and we're so thankful. She's taking 10cc per feeding now and hasn't seemed to have any problems digesting and excreting. Hallelujah. Good girl! Pray that she can continue to do so!
Doctors said again that her condition is pretty stable now and right now the focus is to grow her and get her bigger and stronger then a lot of problems should resolve themselves.
A few prayer requests.
1. Doctors are trying to wean her off the ventilator. And she's been doing pretty well except right after she eats and when she has a lot of mucus. Right after she eats the stomach gets bigger and presses on her lungs, so they don't have as much room to expand. When this happens she has a harder time taking in air. Also when she has mucus it's harder for the air to get into the lungs. But the good news is that the mucus is not as thick as it was in the past. They used to have to drop some thinning solution down her throat to thin out the mucus so they could suck it out. But now they don't need to do that as much. Improvement! So pray for more and more improvement in the breathing department and that she can be off the ventilator soon and stay off. She also still has apnea where she forgets to breathe. It is improving, but please continue to pray over that.
2. Pray that any damage caused by the use of oxygen would be minimized. Oxygen causes oxidation (think rusting) which is damaging to our bodies. So extensive use of oxygen causes a lot of problems. Unforunately without the oxygen she can't survive at this point. So pray again that she can get off the ventilator ASAP.
3. She'll have an eye exam on Tuesday. The day before her one-month birthday. Pray for the development of her eyes. That they can be healthy and that she can have perfect vision.
4. Pray for her brain development. The doctor confirmed today that she does have some brain damage along the part of the brain that controls motor skills. He said that in a few months when she's older, he's going to have a physical therapist come in and look at her and start her on some physical therapy to develop her motor skills. Usually the earlier they can intervene the more successful the results. It's better to do it while she's flexible and can move about more freely.
Alicia continues to delight everyone in the nursery. Apparantly, she likes attention. The nurses say that when they walk away for awhile, something usually happens to Alicia where she forgets to breathe or something that forces them to come back to her. They're kidding of course, but the nurses say that she likes to have someone watching her. Hmm… takes after Daddy? She's also pretty active and moves around a lot. During this morning's visit she was pretty awake and alert, and was moving her arms and legs a lot. She was sleeping on her side and did this funny twitch thing like a dog with her top leg. It was really cute. Haha.
Also, yeah, no doubts that this girl is mine. Every time we go back to see her, and I mean every time, in just the few hours that we don't see her, she grows a bit more. She's really filling out and we can see her features more and more clearly. And man, does she look like me as a baby. I really feel like I'm looking at a mini-me. Heehee. So cute.
Anyway, thanks for keeping up friends! =) More updates soon.
Friday, June 24, 2011
Over the past few days, God has been reminding me to look for the silver linings. And the more I look for them, the more I see them everywhere!
Alicia's doing really well. During last night's visit we got the great news that her scalp IV has been removed! Yay! The scalp IV is the little antennae-like thing sticking out of her head that you may have seen in some of her pictures. Silver lining - the fact that they've removed it means that her condition is stabilizing, and they feel that they probably won't have need of it in the future. Of course, if her condition changes and there is need of it again, they will probably insert it again. But as of now, we rejoice that it's out! =)
Last night, Linda and I also signed off on some new medication that the doctors want to give to Alicia. Now we're not 100% sure, but based on what we read in our preemie book, here's what we think they're giving her. Here's our new word for the day, 10 points if you can pronounce it, because I can't. =) Erythropoietin or epo for short is a hormone that stimulates the production of red blood cells. (Why do medical terms all have to be so hard to pronounce? It would be so much easier if it was called Big Red or something. haha) Anyway, this is a hormone that we all have, but for small preemies because of various factors their levels of erythropoietin are lower than in term babies. This results in anemia or low red blood cell count. When kids have anemia, they don't have enough red blood cells or more specifically hemoglobin to carry oxygen to the organs and tissues. Doctors can treat anemia in two ways, one way is through blood transfusions and the other way is through this new medicine.
As I said earlier, this hormone stimulates the production of red blood cells so the hope is that with it, Alicia won't need as many blood transfusions in the future. So far there are no known serious risks or side effects, but it's a relatively new medication so no one is sure how babies who get it end up doing in adulthood. We pray for God's covering.
Silver lining - the fact that their giving her this medicine is a sign of improvement. Production of red blood cells requires iron, so preemies who go on epos also need to take iron supplements. Iron can upset the stomach, and may make feeding problems worse, so babies aren't usually started on epo until they are stable and eating well. Alicia's been eating well consistently and she's also been taking iron for a couple of days now and hasn't had any problems, all positive signs.
Speaking of eating, Alicia's been taking in 9cc per feeding and she's been digesting very well. Doctors say that for a child her size 9cc is a good amount. So for now they'll keep her on that until she gets a bit bigger. She's also gained weight today. She's up to 618 grams. Doctors hope she can gain 10 - 20 grams a day at this point, so she's doing pretty well.
At the hospital today, Linda had a conversation with one of the other mom's at the NICU. Her baby is a couple of weeks older than Alicia and weighs about 1000 grams, but he's only eating about 11 cc per feeding. He's had a lot more surgeries than Alicia in his time at the NICU and he's had some problems digesting, which made me think that we need to be really thankful that Alicia has had good digestion from the beginning and that she hasn't had any problems. There's another baby that has been eating for a couple of weeks and he's still only on .60 cc per feeding. I think in circumstances like this it's so easy to focus on the negative and to constantly be filled with anxiety or worry over the "problems" and then to dismiss anything good as something that's just "expected".
But what I'm realizing is that when things are going well, that's a huge silver lining. And when there are no problems and things aren't going badly, that's also a silver lining. You might think, "things going well" and "things not going badly" what's the difference. There's a huge difference.
Sometimes she's not improving, but she's stable. That's huge!
One thing that I've been over looking as a blessing is the fact that Alicia is eating well. That's a HUGE blessing. Not every child eats well. This is something to rejoice over. The fact that Alicia recovered pretty quickly from her PDA litigation and pneumothorax, again, Praise the Lord! And as I flip through the preemie book, I'm realizing there are a host of problems that we haven't faced and probably won't need to face, again, thank you Daddy! Alicia's situation could easily be worse than it is now, and the fact that it isn't isn't something to take for granted, it's something to rejoice over!
Also, something else to give praise for, Linda's been working really hard to provide milk for Alicia, and thankfully, her milk has been coming in very consistently. Again something that I originally took for granted until I realized, not every mom has enough milk for her kid. In fact, there's a whole section in the book about milk supply that as of now we can skip over, because it's not been a problem.
So what I'm realizing is that while we're walking through this journey, I can focus on the problems and focus on the bumps in the road, or I can focus on the blessings, not only the successes, but also the problems that we don't have to face.
There are so many things that we can take for granted. But I think to survive and to thrive we need to learn to be thankful for even the small things. We need to be thankful that we're still alive each day, that Alicia is still alive. Each day she's alive is another day that she can grow stronger and thrive, and these days, they're not promised to us, and they're guaranteed. So we give thanks.
Another thing to be thankful for? God's wisdom. Today, again we were told about her mucus situation. And I started to worry, but then I thought, what if . . . what if, there is a purpose for all the extra mucus in her lungs right now? I'm no doctor, so I'm not 100% clear on the purpose of mucus in our body, but isn't it there to catch bad things and keep it from getting into our body? So yes, I know that right now mucus is making it hard for her to breathe. But what if all that extra mucus is preventing something else from getting into her body, something more deadly? I honestly, don't know, but what if? Made me think. So often we get mad, frustrated or disappointed with God because he doesn't answer our prayers in our time or in our way. But what if, him not answering the way we want is a greater blessing than him giving us what we want? What if, by doing exactly as we requested, it created a bigger problem? Isn't it a law of physics that every action causes a reaction? So what if by removing one problem, it creates a greater problem?
Reading this, one reaction might be paralysis. Because, well, we don't want to pray for the wrong thing right? What if what we pray for ends up creating a bigger problem? Well, thankfully we have a wise, sovereign and loving God. One who listens to us, but knows the bigger picture and knows the consequences of each action. The question is are we willing to trust him and go with him, following his direction and accepting his guidance? Or do we want to just go at it on our own, because we don't like the way he's doing things. Because if we do choose to go our own way, and we insist on doing things our way, then he'll let us. He's a gentleman and not going to force himself on us. But for me? I'm going to believe the promises of the Bible that the Lord blesses those who trust in him. And he will prosper, and direct the paths of those who walk with him and follow in his ways. Of course, because his ways are higher than our ways and his thoughts are not our thoughts, we are not going to understand everything that he does. In fact, sometimes I think he's down right crazy. But when it comes down to it, I think God has a bit more knowledge about the intricacies of my daughter's life and body than I do, so maybe I should just leave the job of healing to him.
Of course, this doesn't mean that we don't pray. This is the amazing thing about our mighty God. He's all-knowing and all-powerful. He doesn't need us. Yet he chooses to humble himself and he invites us to partner with him. He invites us to be in conversation with him and dialog with him about everything. He doesn't need to ask our permission for anything. He's God! Yet he allows us to work with him and partner with him through prayer to accomplish things here on Earth. It's amazing.
But when we pray, we must never presume to know better than God. Ever work with someone and maybe because you have more experience you know that a decision that they're making or something that they're doing may end up causing more damage than good? You try to tell them and suggest other ways, but the person insists? Well, I think sometimes that's how it is with God and us. He knows best, but we insist on doing it our way, and then end up making a mess of things. The funny thing is, then some of us turn around and blame God for the consequences of our choices. Well, thankfully, God's mercy is new every morning and his grace is more than enough to cover for our mistakes.
So we keep walking ahead, friends. We thank God for the progress - the things that go well and the things that aren't going wrong. We ask him to give us the strength to get over the humps in the road. And we trust him that when it seems like he's not answering our prayers the way we want to, that he's got some greater plan and purpose in mind.
So it looks like our clouds are quite silver-lined. And you know what? Sometimes clouds bring rain. And with rain comes water. And water gives life to the earth. So how's that for silver lining? =)
1. Next Wednesday, June 29, Alicia will be one month old! Praise the Lord! Time really flies. Sometime next week, I believe Tuesday, Alicia will get an eye exam. Standard procedure for preemies. They'll be checking for a condition called "retinopathy of prematurity" or ROP for short. In this condition blood vessels in the eye don't grow the way they should and can cause vision problems. Ninety percent of preemies of Alicia's size and age get some form of ROP, but we pray that Alicia would defy the odds. The good news is that most cases of ROP are mild and usually go away on their own over time, so it's not something to be too worried about. Pray that Alicia's eyes will be perfect and that she'll have perfect vision and not need any kind of corrective therapy.
2. Continue to pray for Alicia's breathing. She's doing better and better although she still has bouts of apnea. Right now her ventilator settings aren't super high which is a good thing. She's usually at about 40% oxygen saturation, except after she eats. For some reason after she eats she needs a bit more oxygen. I think it has something to do with the blood rushing to her stomach to help her digest verses actually getting circulated around the body. Anyway, the doctor said that over the next couple of weeks, they're going to try to wean her off the ventilator more and more and see how she does. We pray that she can be off the ventilator and the ventilator tube can be removed.
3. Pray that Alicia will continue to eat well and pack on the weight. She's been growing well these past few days, and we pray for more growth! More, Lord, more! =)
4. Pray for her other senses as well. So far, we think she doesn't have any hearing problems, since she does seem to respond to our singing and talking. Also, her sense of touch seems to be OK. No idea about her taste and smell, but yeah always good to pray for. Pray that everything would develop in a healthy way and that they would be protected from any potential damage.
5. Pray for her brain development. We asked the doctor today about any potential brain damage, and she said today that there does seem to be some brain damage based on the last scan they did, but she's not really sure about the extent or severity of the damage. Also, just because there is damage in the brain, it's hard to tell just how this will effect the baby. Our brains are such intricate things. As we know different parts of the brain control different things, so it's hard to know just how the brain damage, if there is any, will affect her. Sometimes kids have brain damage, but they develop completely normally and the brain damage doesn't affect them at all. We just pray for completeness in her brain, that there is no damage whatsoever.
6. Pray for finances. Thankfully, insurance will cover her stay at the NICU and the incubator usage. But there are several self-pay medications like the PDA medication used early on, and also this new epo that they'll be giving her. Plus we've got our regular living expenses to think about. We're not worried. We know the Lord will provide, but always good to pray. =)
7. Pray for divine relationships. We've been sensing that as members of the NICU, we have joined an exclusive club. Granted, I doubt that anyone would ever choose to join this club, but we're in none the less. So as members of this unique club, I feel like we have a unique opportunity to connect with and bless other families in similar situations. So we pray that God would show us who to connect with and how we should connect with them.
Thursday, June 23, 2011
In Your Hands (So Close)
I'm so secure
You're here with me,
You stay the same
Your love remains,
Here in my heart.
So close I believe,
You're holding me now
In Your hands I belong
You'll never let me go
So close I believe
You're holding me now
In your hands I belong,
You'll never let me go
You gave Your life
In Your endless love
You set me free
And showed me the way
Now I am found
All along you were beside me
Even when I couldn't tell
Through the years
You showed me more of You
More of You
Alicia's in our Daddy God's hands. Actually, we all are. And there's no more secure place than that. He's holding us close.
This song along with others have been a huge comfort for us, and every time we sing it, it's a reminder for us and for Alicia that we're in good hands. There's no need to worry.
Tuesday, June 21, 2011
Hmm... maybe that's what I've been experiencing.
You see over the past couple of weeks, ever since Alicia's birth, I've been struggling with . . . I don't know, a lack of direction? Or is it motivation? I don't quite know how to explain it. I just feel like I don't know what to do with myself. Somehow, this blog has provided me with an outlet and talking to Linda has helped a lot of course, but other than these things, I spend a lot of my days just kind of aimless. It's frustrating.
I come home from the hospital, and I tell myself not to watch TV, but what do I do? I sit down and I turn on the TV just for "a few minutes", and then I end up sitting there for an hour watching some mindless movie or TV show that adds no value to my life.
And as I'm doing these things, and I watch myself just letting time slip by, I get frustrated with myself. There's so much that I could be and should be doing with my time. And yet, somehow, I don't really want to. But I do want to. So there's this constant tug-of-war within me.
What's wrong with me?
As I was discussing my frustrations with Linda yesterday, she gently reminded me, "Honey, give yourself some grace. We just went through a life-altering, traumatic, stressful event. Our daughter was born 3 months early and she's in the NICU." And as she said that, part of my heart received her words with relief, while the other half struggled within me, "Yeah, but, what about the family? I need to provide! I need to work! I need to do SOMETHING!"
Even as I write this, it's hard for me to put into words everything that is going on in my mind and heart. I don't know if it's because I've tried to block it out, but sometimes I forget or just don't realize how much our lives have been altered by Alicia's early arrival. I mean, I don't know how I could forget such a thing, considering that our lives have been disrupted, our family has been uprooted from familiar surroundings and loved ones, our days are now regulated by visiting hours and pumping, and we're constantly wary of phone calls for fear that it might be the hospital with more bad news. And yet, perhaps it's because I'm a man, I can somehow shut all that out and forget about all that's happened and tell myself that I need to stop slacking off.
Last night, I was flipping through the premie book. By the way, the premie book I keep referring to is "Preemies - The Essential Guide for Parents of Premaure Babies: Second Edition" by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, M.D. Great resource if you ever meet another parent of a preemie - apparently it's the "bible" of preemie care for parents.
As I was saying, last night, I was flipping through the premie book and found a whole section devoted to "The Father of a Premie." And it was really good. Again it was reassuring that I'm not crazy, and it helped for me to hear what I was going through from another person's perspective. In this section they shared some words from a father whose triplets were born extremely premature. He's an army officer, but he said that he's never been as afraid as when his babies were in the NICU. He said, (and this is quoted from the book) "Those days in the NICU are still the hardest of my life. I would relive the toughest moments in Iraq every day to never have to experience the NICU and see my girls struggle like that again. Rest assured, the NICU is combat. It is not like combat, it is combat. The difference is that in combat people are shooting at you, while in the NICU the bullets are the roller coaster of your own emotions. In combat, you're worried for the lives of the soldiers you trained. In the NICU, the soldiers are the children you created."
Maybe this is why I'm going through shell shock? I can't decide what I want to do with my time. There are so many things that I know I should do, but I really don't want to do them, and I can't decide what I should do first, so I just don't do anything.
Disconnection from one's surroundings? Yes. I've got that. I sit here and somehow, I am numb to the fact that we've just given birth to a girl. I mean again, I know that in my head we've just given birth to a daughter. But sometimes between visiting hours as we sit at home, somehow, I need to remind myself that we're going through a really intense situation.
And I'm ashamed to admit that as cute as my little girl is, and as much as I love her, I have fleeting thoughts while I'm in the NICU of "What if this isn't my girl? What if they mixed her up at birth? There were three other babies who came into the NICU that night. Maybe there's another girl in here who is my real daughter." Crazy thought. I know. She is my daughter. No doubt. But this just gives you a glimpse into my jumbled mind.
And thinking back on previous blog entries, I'm realizing just how real that "emotional roller coaster" is. I mean, one day, I'm up, one day, I'm down, the next day I'm all twisted up and confused. I wish things could just be normal.
But then again what is normal? We've really had to redefine normal over the past few weeks. I mean PDA litigations, pneumothorax, brain hemorrhaging, ventilators, blood transfusions, not normal for term babies. But for a preemie? Quite common. Tubes, incubators, wires, monitors and alarms? Again, not something you'll see too much of in the nursery of a baby born at full-term, but for us, normal.
And what I'm realizing is all this emotional chaos floating about in my psyche - normal. Again in the book, it talks about "coping emotionally" and as I read through the list of feelings that parents of preemies typically have to deal with, I couldn't help but marvel how I identified each one within me. Worry - check. Regret - check. Uneasiness - check. Guilt - check. Confusion - check. Sadness - check. Anger - check. Shock - check. Helplessness - check. A sense of spinning - DOUBLE CHECK. (Isn't what this whole entry is about?)
In a way, writing this blog is cathartic, it helps me to acknowledge and process the emotions. And yet, there's still a lot of confusion. It's almost as if I'm on the outside looking in. It's as if it's all happening to someone else, to another family.
But thankfully, as I've said in the past, we have a rock. A firm foundation that steadies us as the craziness circles about us. He is our anchor and when I feel completely out of control, I can return to him and he steadies us. When I fear that I'm being too lethargic, I know that his grace can cover it. I know that he will provide for our family, he's promised it and he always keeps his promises.
I'll end this post with a couple of things that God has been showing me.
First, numbers. Linda's birthday is November 29 (11/29) and she's always had this thing where anytime she sees "1129" on a clock, a license plate, a sign or anywhere, she feels that God is sending her a message that he is thinking of her and that he loves her. I'll admit when she first told me about this years ago, I thought it was a load of poppycock. But then I thought about it, and realized, well, why couldn't God speak to us in this way? It's his own private message for her. And that's sweet.
Well, for some reason lately, I've been seeing a lot of times like 10:10, 5:55, 2:22, etc... and it's been happening a lot, too often to be mere coincidence, and when I asked God what it meant, I felt like he was telling me that it was a message of "fullness" and "completeness." Some of you may think "that's just cray talk." Well, maybe, I have been kind of crazy lately. But you know what, I don't care of it's coincidence, or if it's crazy or whatnot. I will receive the message of fullness and completeness and I will say thank you, Lord. Bring fullness and completeness to your healing of Alicia. Bring fullness and completeness to our family.
Second, yesterday in the middle of the night, I woke up and had a hard time falling back asleep. While I was lying there in bed, I was kind of talking to God about all that was going on, and my struggle of not knowing how I was going to provide for our family. And I saw an image in my mind's eye of me in the midst of a storm. It was a lightning storm and what I saw was that I was standing there like a lightning rod and the lightning was striking me continuously. But it wasn't hurting me, in fact it was charging me up and filling me up with power. And my sense is that this "storm" that we're walking through right now is being used by God to give me supernatural strength and power for some greater purpose ahead. And again, this isn't me trying to get all puffed up and say that I'm going to be all powerful. I'd readily pass up on this "power" if only my daughter could be healthy. And I know that in and of myself, I am nothing, completely weak and wrecked. But if I'm willing to submit to God and what he's doing in my life, I believe some great things can be accomplished, so bring it on Lord.
Onto Alicia, as of this morning's visit, she's doing well. From what the doctor can tell, they've been able to suck out all the excess air from Alicia's chest, and there doesn't seem to be any more leakage, praise the Lord. So they're going to observe her today and if all goes well, they're going to pull out the tube from her chest that was helping to remove the extra air. So it seems, at least for now, the pneumothorax is gone. Phew.
Her color was pretty good this morning and she continues to eat well and has even gained 20 grams since the last time they weighed her two days ago. Yahoo! =) Only a few thousand grams more and she can go home. (Funny, but I'm not exaggerating.)
When we arrived at her incubator this morning and removed the cover, her eyes were wide open and it was as if she was waiting for us. She even had this perplexed look like, "Where have you guys beeen?! I've been waiting?!" Of course, the look could have just been a reaction to me pulling the covers too quickly, and her eyes needing to adjust to the light. But as we visited with her, she watched us for about a minute, then she started to fall asleep. It was like, she saw us and felt like she could finally relax and rest. It does a father's heart good to see the comfort that we bring.
As for prayer requests:
Pretty much the same things as yesterday.
1. The nurses keep reminding us each time that we go that she has a lot of mucus buildup. But that's completely normal in preemies of her size and age. It should go away as her body gets bigger and stronger and develops the ability to clear out the mucus on its own. Pray that this would happen in God's time and that the mucus wouldn't affect her breathing too much.
2. Her apnea. She still has bouts where she forgets to breathe. But according to the doctor, these bouts are fewer and farther between. That's good. Pray that the part of her brain that regulates breathing would develop quickly, so that she would remember to breathe without help.
3. Speaking of her brain. Continue to pray for its development. Young preemies like Alicia are susceptible to brain damage from various complications. Pray that Alicia's brain would develop well and that she would have no damage and no impairment. And in fact that her brain would be better than the average.
4. Pray that she would continue to get big and strong. Most of the problems that she faces are simply because she is really young and her body is immature. As she gets older and stronger most of these problems should and will disappear.
5. Pray for Linda and I to continue to have peace in our hearts and to have wisdom as we deal with all the new information that gets thrown at us. Pray that we will be able to process all of the emotions and thoughts that are circling within us. Also, pray that God would prepare us well for when Alicia comes home that we'll know how to take care of her and raise her.
Monday, June 20, 2011
Granted, I think I would have been just fine if I never had to learn these words, and I think I would have led quite the full life despite my ignorance. But God in his wisdom has given us homework to do and that includes learning about a bevy of medical conditions and vocabulary that I was completely oblivious to.
Since I am an English teacher and we are talking about vocabulary, allow me to change things up a bit and borrow a chapter from the magazine that I work for.
(disclaimer: the following has been slightly dramatized for effect)
What is wrong with Alicia?
(Campbell and Linda walk into the NICU.)
Campbell: I wonder how much milk Alicia is drinking today.
Linda: I know. Me too. Yesterday she was up to 8cc.
(arriving at Alicia's incubator)
Linda: Look, honey. Her ventilators back up to 25. I wonder what happened.
Campbell: Yeah. I wonder. Maybe they just suctioned some mucus. You know how they usually turn up the ventilator when they do that.
Linda: Yeah. That's true. (speaking to Alicia) Hi, baby! Oh, look at you. Good morning! Your eyes are open. Can you see us? Mommy and Daddy are here.
Campbell: Hi, sweetheart! How are you? Mommy and Daddy are so proud of you, little girl. You're doing so well!
Linda: Yes, baby. Good job! Keep going. Mommy and Daddy love you.
Campbell: (to Linda) Honey, does Alicia look a little pale to you? I wonder what's wrong?
Linda: I don't know. Is she breathing OK?
Campbell: Yes. Everything looks normal.
(A nurse comes over.)
Nurse: Good morning, Mommy and Daddy.
Linda: Good morning, nurse. How is our little girl doing today?
Nurse: Well, we just fed her 8cc. And she's eating pretty well.
Linda: How's her mucus?
Nurse: She still has a lot of mucus.
Campbell: And her breathing? How's she doing?
Nurse: Well, Mommy and Daddy, I'll ask the doctor to come over and give you more details about your baby's condition.
Linda: Is everything OK?
Nurse: I'll ask the doctor to come over and explain. In the meantime, enjoy looking at the baby. The doctor will be over shortly.
Campbell: OK. Thank you.
(The nurse walks away.)
Campbell: Hey, honey, look over there. What's that thing with the bubbling water.
Linda: I don't know. Is that attached to us?
(Campbell follows the tube with his eyes.)
Campbell: Yes. Look. It's connected to that thing on the floor that has a tube going into Alicia's incubator.
Linda: Hmm. That's new. I wonder what it is.
Campbell: I don't know.
Linda: Oh, look, honey. They took out that thing that was inserted into Alicia's surgical wound. But what's that new tube sticking out from there.
Campbell: Uh. I don't know.
(A second nurse comes over.)
Nurse: Good morning, Mommy and Daddy.
Linda: Good morning. How are you today?
Nurse: I'm doing well. Has anyone come over and told you what happened with your baby last night?
Campbell: (slightly alarmed, but trying not to show it) No. Did something happen? What happened?
Nurse: Oh, well, I'll ask a doctor to come over and explain it to you. Just wait right here.
(The nurse walks away.)
Campbell: Is it just me, or does everyone seem a little bit on edge today. What happened?
Linda: I don't know. Just pray.
Campbell: OK. Heavenly Father, we just pray protection over Alicia. We speak life and health over her. And we just proclaim that Alicia, you will live and have life. Father, we ask for complete healing over her body and that you would just bring completeness and wholeness to her whole body from head to toe. We pray for complete brain development, and that she would continue to receive the milk and continue to gain weight. Thank you, Father. In Jesus name we pray, Amen.
Linda: Amen. Alicia, honey, you're doing so well! Mommy and Daddy love you, honey. You are our precious girl.
(Twenty minutes later.)
Doctor: Daddy and Mommy, good morning. I'm sorry for the delay. I was doing my rounds.
Campbell: No problem.
Doctor: Has anyone explained to you what happened last night?
Doctor: OK, well, blah, blah, blah, lungs, blah, blah, blah air, blah, blah chest, blah, blah pressure, tear, blah, blah.
Campbell: (pretending to understand) So what you're saying is that Alicia has a tear in her lungs?
Doctor: Yes and there is air in places where air shouldn't be. And blah, blah, blah.
Linda: Is it serious?
Doctor: Well, we've inserted a tube that will help us to suck the excess air out. We need to get the air out or it may end up crushing the lungs and heart.
Campbell: Is she OK?
Doctor: Well, for now she's stable, we were able to get to the problem before it got worse. Sometimes when there is a tear in the lungs, it crushes the lungs, which then affects the heart and some people even die.
Linda: So what's being done now?
Doctor: Well, as I said, we've inserted a tube that will help us to suck out the extra air. And in the meantime, we'll see if the lungs can heal themselves. Once things are more stable, then we can remove the tubes.
Campbell: This must be something that is pretty rare.
Doctor: Oh, no. Actually, this is a common problem with premies.
Linda: Well, why did this happen?
Doctor: We're not sure. It could be from the tubing we had in there post surgery. Or there might be a leak somewhere from the ventilator. We're still checking it out. But in the meantime we do have something in there that will remove the excess air. We'll keep monitoring things to see how your baby is doing.
Campbell: OK. Thank you, doctor. Please let us know if there is any change.
Doctor: I will.
Question of the Day
What would you do if your doctor told you that your baby had a tear in his or her lungs? Why?
OK. So, that's kind of what happened this morning. I kind of paraphrased and condensed certain parts of the conversation and the dialog isn't word for word, but you get the idea.
Basically, at least twice this morning a couple of nurses came over and usually, they'll just greet you with the basic vitals. "She ate this much, she gained/lost this much weight, she's breathing pretty well, her blood pressure is stable, we had to suck out a lot of mucus." But today something was off. First, it was all the new equipment in and around Alicia's incubator. Then it was the nurses demeanor. Usually, when you ask a question, they'll answer you. But today, the nurses seemed extra cautious, and wouldn't really talk too much. Anytime we asked anything, they would respond with, "We'll let the doctors talk to you." Usually, that's a sign that something's up.
When the doctor came over and started explaining, seriously, I felt like she was speaking a foreign language. I was only able to pick up a few key words here and there, and so I kind of got the gist of what she was saying. I wanted to ask more and ask her to clarify, and I tried. But honestly, I didn't even know where to start. I mean I didn't even know what I wasn't understanding enough to ask for clarfication.
But what I did gather was that Alicia had some sort of damage to her lung, causing air to leak into the chest. When I got home, I looked up the condition in our premie book. I had no idea what to look for, so I just looked up air leak. And there it was.
Now here is our new vocabulary for today:
Say it with me:
Did you say it? Good.
A pneumothorax is a collection of air or gas between the chest and the lung. A pneumothorax can be caused by many things, in Alicia's case, doctors suspect she may have a small tear in her lung tissue allowing air to escape. The air is dangerous, because it presses down on the lungs and prevents it from fully expanding, and in more serious situations it can cause the entire lung to collapse. And since the lungs and the heart are so intricately connected, any lung problems ultimately also affect the heart, and if left untreated pneumothorax might even result in death.
Thankfully, it seems like the doctors have a handle on the situation. They're using some sort of vacuum equipment to suck the excess air out of Alicia's chest. Conveniently she already had an opening from her PDA surgery in which they could just insert the vacuum tube so they didn't have to open a new hole. And actually, I read in our premie book that pneumothorax sometimes is a complication of PDA litigation.
Once again, what I'm learning with all of these new things that happen is that all of these things are potentially life-threatening if left untreated. However, due to the advances of modern medicine, doctors are well-educated and trained to catch symptoms of these things and treat them before they become huge problems. So with the air being suctioned out, it's now up to Alicia's lungs to heal themselves. How? Well, the tear is similar to a small cut, so however our body heals itself after a cut, that's pretty much how the lung will seal up the small tear.
So doctors will be checking to see if the tear gets worse, if it doesn't, then it should heal itself in a few days and they should be able to remove the suction tube from her chest.
So here's the prayer request for today.
Please pray that the air would clear up, and that if there is a tear that it would heal quickly and that there would be no permanent damage or complications from what has happened.
We're now into week 4 and Alicia is 9 days from being one month old. How time flies.
We look forward to seeing her tonight and seeing if her condition has improved.
I'll keep you all posted!
Sunday, June 19, 2011
I mean what is it exactly that makes someone a "father"?
I suppose technically, one could say that contributing to half of Alicia's genetic code makes me a father. But there has to be more than that. I mean, there are plenty of children who carry the genetic code of men who are absent from their lives or don't even know of their existence. Would you call these men fathers? I guess, as I said earlier, technically.
What about being a provider? Does that make someone a Father? Maybe. I think most would agree that a good father provides. He provides food, a house, clothes, the basic necessities of life. He provides love and security.
Fathers also play with their children. Fathers change their children's diapers. Fathers comfort their children when they are scared at night. Fathers teach their children right from wrong.
But for me, I haven't done any of this. Thus far, my experience of fatherhood is one that I could have never asked for nor imagined. Before Alicia was born, as Linda said, we had all these grand ideas of what parenthood would be like. We prepared ourselves for sleepless nights, and diaper changes. I never imagined that I would spend the first three weeks of her life visiting a hospital every day, and having to make decisions that could mean the difference between life and death. This is definitely not what I pictured fatherhood to be.
Where are the days of rocking my baby to sleep, of holding her and talking to her and singing to her? What about the sweet kisses and hugs and giggles? Instead, I've got beeping monitors and tickling her feet so that she doesn't fall too deeply asleep and forget to breathe. Something's missing.
But even as I write these things, there is a gentle whisper in me that says these things are not lost. In fact, no, Alicia's first few weeks may not be how I imagined them to be. But, fact is, she's going to live, and we're going to take her home. And those days of sleepless nights, midnight feedings and diaper changes, they're coming. Rocking her to sleep, holding her and hearing her giggle, we'll get there. We have just taken a little detour.
And as my sweet wife just reminded me, I am a father. Alicia is my daughter. I may not "feel" like a father, but that doesn't change the fact that that's what I am now. It's a part of me and part of my identity.
And truth is, Linda and I, while we've been ushered into parenthood in quite a dramatic unexpected way, we are still parents. And while, we can't perhaps yet do the things that parents of a full-term child do, we do do things that only we as Alicia's mom and dad can do for her. Only we could sign off on that surgery and give permission for it. Only, we were allowed to go into the NICU and talk to her before she went under anesthesia. Our singing and talking to her, though sometimes it seems like she's unresponsive, does make a difference.
I think the important thing for me is to remember that this time in the NICU is temporary. While, yes, Alicia's hospital stay is a lot longer than I would have maybe anticipated, it too shall end, and we too shall take her home in a few months time.
And the days when she recognizes us, and calls me Daddy and calls Linda Mommy? Those days are coming. And besides, even if Alicia were a full-term baby, it would still be awhile before she recognized us as her parents.
The trick is to continue to sing to her, continue to speak to her, continue to visit her and touch her, and believe and know that these things are making a difference, even if right now we don't see it.
That's a lot of the challenge of life, eh? To keep going even when we don't receive immediate feedback or gratification.
One of the nurses told us today that she feels like Alicia is really aware. She says that she notices that right before morning visiting hours arrive, Alicia will go through motions as if to wake herself up to prepare for our arrival. And I do notice that when Linda and I are there, her heart tends to beat at a slower pace and she seems to rest more peacefully and deeply. Of course, we have to be careful not to let her fall asleep too deeply. =) So I do believe that Alicia does know.
I do wonder what my relationship with my daughter will be like? Will she really wrap me around her little finger as so many people predict? Only time will tell.
In the meantime, I just celebrate my new identity as a father, and I ask the greatest father of them all, our Heavenly Father, to continue to give me wisdom on how to be the best father that I can be for Alicia.
Some prayer requests:
1. Alicia has recovered well from her surgery. Her blood pressure, breathing, oxygen levels and heart rate have all stabilized. Pray that they would continue to stay steady and strong.
2. Pray for her physical growth. Now that her PDA has been taken care of, the next thing we need to concentrate on is growth. Alicia is now drinking 8ccs of milk per feeding. They've started to mix in some fortified milk with Linda's breast milk to give Alicia some extra calories to help her pack on some meat. Pray that she can continue to eat well and that she'll start to gain weight.
3. Pray for her lungs. She still continues to have a lot of mucus that they need to suction out. This is normal in premies of her age. So doctors aren't too concerned. She should grow out of it as she gets older.
4. Pray for her breathing. She still has bouts of apnea. Again, something that she'll grow out of as she gets older. Pray that her body would quickly learn to breathe steadily on its own.
5. Pray for her brain. Doctors worry that she may have some brain damage as a result of moments of oxygen deprivation and also her needing to be resuscitated after birth. Pray that her brain would develop healthy and whole.
6. Doctors haven't told us about this yet, but I read in the premie book that most young premies of ROP which is an eye disorder that can be pretty dangerous if left untreated. They'll probably do an eye exam in a couple of weeks for this. We pray that it won't be there. But if it is, that the doctors would be able to treat it and that it would not cause Alicia to have any sort of visual problems.
7. Just overall that there would be no lasting physical problems as a result of her early birth, and that she would thrive.
8. Pray that Linda and I would have wisdom to know how to use our time that God has given to us while Alicia's in the hospital. That we would be productive and use our time well.