Sunday, October 31, 2010
Okay, not Christmas, but I'm not completely ruling it out either.
Oh, and just so you don't worry, leaking was expected. I guess all g tubes leak some, but his is just leaking a little too much for it to be safe for him to come home.
Along with getting his g tube under control, they also have to do another MRI on him. They tried to do one but he squirmed too much and couldn't complete it. So he will have to have anaesthesia for the next one, and they always keep babes 24 hours in house to make sure they wake up fine. Other than that, he's ready to come home.
Am I ready for him to come home? Yes and no. But I'm really scared. I'll write a post about that later, though.
Friday, October 29, 2010
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Do you know this song? It's A Minor Incident by Badly Drawn Boy. He wrote it for the movie About a Boy, which is based on the book by Nick Hornby.
The song is used as a suicide note written by a mother to her son, but for Hornby, whose son is severely autistic, it meant something else. He wrote once how the line "There's nothing you could never do to ever let me down" struck him and made him think of his relationship with his son. Hornby's son has a lot of things he'll never do, but none of them let down the author. In fact, Hornby (if I remember this correctly) is even more proud of his son for the things his son can do.
It's kinda like swallowing. I never knew that I would be bursting with pride when my son had one day where 100% of his food came from a bottle. And I never would have fathomed how disappointing, devastating, depressing it can be when my son would go back to his inconsistent feedings because of those two damned words, brain damage.
James will have surgery at 8:30am on Wednesday. A feeding tube will be put into his stomach, so he'll have a little tail in front for about 6 weeks. They will then remove the tube and put a "button" in its place.
Please pray for the anaesthesiologist, the surgeon, nurses, and James. Please pray for safety, swift and complete healing, no infections, little to no leaking, and continued, consistent success for James' bottle feeding.
Please also pray for healing to his brain.
Bennet's godmother is a Packers fan.
She buys him one of each of things so that "he can decide for himself who to cheer for when he's older." It's a nice thought, but since she lives in Wisconsin and he'll be spending every Sunday of football season of his life rooting for the Bears she's probably gonna lose this one.
So that, dear commenters, is why Bennet was wearing a Packers fan while he was playing outside.
Monday, October 25, 2010
Sunday, October 24, 2010
I definitely don't want to create in my kids a fondness for anything that is of the occult. But I don't know where to draw the line. I mean, I really like Harry Potter and Glenda and they're both witches. But Halloween has a stronger connection with dark magic than Quiditch and ruby shoes.
I like a certain kind of creepy. Bats, spiderwebs, jack-o-lanterns, full moons, spooky looking trees - don't mind 'em.
But I believe in ghosts and they scare me. If a loved one of mine dies I never want them to come back, not if they love me, too. That's not gonna reassure me, it's gonna force me to move.
And it's good to remember that we're always surrounded by an unseen spiritual world that consists of the good (our guardian angels) and the very bad (demons).
Beyond demons I don't believe in monsters.
I guess I feel like if it's cutesie then it can stay. Like Harry Potter witches, friendly ghosts, black cats, fairies. But anything too dark (a judgement I make based solely on my powers of Mom) can't stay. I don't want to get rid of Narnia, and it's entire population.
Saturday, October 23, 2010
A 24 hour stomach bug has been making it's way through our house. You may remember that Lydia fell victim to it Thursday night. Bennet, poor boy, succumbed last night during dinner. Both kids were well by morning. Today, though, poor Trav was the one who awoke to a stomach pain and inability to keep anything down. The bug is not accompanied by anything but fatigue and nausea. I really, really hope it doesn't come to me. I already have missed out on today's visit to James because of it, and will have to wait 24 hours after Travis begins to get better before I can go back.
Some friends won tickets to Disney's Princesses on Ice show and invited Lydia and I to attend. She wore her crown and glitter shoes, and borrowed her friend's Snow White dress. She didn't really like it. My daughter only watches Yo Gabba Gabba, Baby Einstein, Up, Sid the Science Kid, and Super Why. If it were Up on Ice should would have loved it. For my part, I was impressed with their props and the major editing they did to the movies to make the speaking soundtrack for the show. I also loved watching all the other kids oooh and awww over the beautiful princesses. So sweet.
A Bottle Champ
For the past two days James has taken 100% of his feedings by bottle!! As you know, he had been progressively getting worse - at one point nippling less than 30%. Then there was the stopping of all food because of the bloody stool, followed by all ng tube feedings. But then, after I went home and posted an "urgent prayer request" in my Facebook status about his feedings he began taking all of it. I am so proud of him! When I spoke with his nurse tonight and was told of his success and my needing to stay away for awhile I had to fight back tears. I wish I could hold him and tell him how proud I am.
Thanks be to God for this gift of food!
Friday, October 22, 2010
In high school we had a few classes together, and because it was a smaller school I'd see her in the halls and such. I'd chat to her before the bell rang, say hi in the hallways, ask her about her weekend. It wasn't very much. But when voting happened for all four Homecomings and both Proms she would pull me aside, look me dead in the eye, and tell me she nominated me for court. One year I was the only one she nominated.
I realize this is sounding like a bad, warm-fuzzy, forwarded email that ends with asking you to pass it on to ten people. Stick with me.
I've thought about Meg in the ten years since we graduated. I would always think about how I barely did anything and it meant so much to her. I can talk to anyone, and especially in high school when I was much more outgoing, it wasn't stepping out of my box to talk to the people others ignored. Plus, I had no reputation to uphold, I mostly floated in the happy middle of liked but without all the pressure. Nothing was at stake for me to sit by her in class and talk about how cute Prince William was.
So I could have done so much more. I could have asked her to hang out some weekend. I could have invited her to sit with us at lunch. I could have invited her to Bible study. I could have shared the Gospel with her. I realize that I wasn't really mature or thoughtful enough to have thought of those things then, at least not the way I do now, so I don't beat myself up about what I didn't do.
But I have tried to live my life mindful of her. Every once in awhile I wonder if Meg would still find me worthy of being nominated to Homecoming court.
And now, now I think I know how she felt. Some one brings my family a meal. Someone slips us a $50, or mails us a gas card. For some of these people it's not that big of a deal, it's just what they do, a normal reaction. But to me, to me it is huge. And then, when people with tight budgets give to us we get a glimpse of how God must have felt receiving the widow's two small coins in the Temple. How beautiful! What love! And then, 5 weeks later, to still have families praying for my son! People pleading on my behalf... I hope some day you, too, will experience what it is to be loved like this. It makes us feel so small, but in such a lovely, tender way.
So maybe it's okay that I didn't do more for Meg. Maybe what I did, as little as it seemed to be, was huge. I hope so. I hope I was able to do for someone what is being done to us. What a gift! I never knew it before, but it really, truly is a gift.
We are all related, children of the King. We may not have much, but what we have we bring.
-JJ Heller, "Little Things"
Thursday, October 21, 2010
1 - Some day I will sleep again. I had hoped that day would be last night, but instead Lydia's stomach decided to not like her supper and she threw up four times. The poor girl told her daddy, "I don't want to do that any more."
2 - Bennet is adorable. Like really, really, super duper cute. Oh my goodness! One of these days I'll get my act together and upload pictures and videos. You've gotta see this kid!
3 - Why do my kids insist on sitting on my lap while I type?! Do other moms have this problem?
4 - Today I had an hour long massage. It was pretty much awesome. Blogger friend RCM recently went through a tough time and had weekly massages to help her with the stress. Taking a cue from her, and some encouragement of my mom and husband, I went to a massage therapist to treat myself. She spent a lot of time working on all the bumps in my shoulders and upper back. In the end there were two knots, one on each shoulder blade, that she had to push on while I breathed deeply. It was pretty cool to feel them dissipate. It was also cool to feel the headache I had arrived with disappear with her touch. The bad part is that I already feel tight again.
5 - Today we spoke with James' physical therapist. She wouldn't say that he was improving, but she did say that he was progressing developmentally at a good rate. I told her that for us, that translates to, "He's improving." She gave us a few things to work on with him and explained that his next goals are to support himself on his elbows during tummy time and then to reach for things and begin to explore with his hands.
6 - James will not eat from a bottle. His only food has been from the ng tube for the last two days, and before that it was tapering off. We do not know why, and this is not good. I tried giving him a bottle today. He was calm, happy, hungry, sucking, in good posture, holding my hand with his, yet he didn't take in a single ml. I'm pretty worried about this because, as I understand it, he's still in the window of time for losing the ability to eat completely. Can you imagine a life without birthday cake, homemade pizza for Bears games, root beer, ice cream cones, Christmas cookies, and Thanksgiving dinner? Please pray for the feeding therapist, doctors, and nurses who care for my son, that they will quickly discover what is troubling James. And please pray that he will again take a bottle, becoming better at it with every feeding.
7 - Today we also spoke with the developmental pediatrician. He wants James to be home now and politely seemed annoyed that he didn't have a g tube yet. Next week he will look at James' second MRI (which will also happen next week). At that point the damage that is done will be done. The brain will be what it is, although there is still the opportunity for other parts of the brain to pick up the tasks the damaged parts were supposed to do. I therefore see this week as our opportunity to pray hard for some major miracles.
Eternal Father, You alone grant us every blessing in Heaven and on earth, through the redemptive mission of Your Divine Son, Jesus Christ, and by the working of the Holy Spirit.
If it be according to Your Will, glorify Your servant, Fulton J. Sheen, by granting the favor I now request through his prayerful intercession - that James Fulton's brain be healed completely, that his muscles function normally, and that he is able to take a bottle safely and successfully.
I make this prayer confidently through Jesus Christ, our Lord. Amen.
Wednesday, October 20, 2010
James is going to be in the hospital for his first Halloween. This makes me sad, but at least he'll be home for Thanksgiving.
Last night James had streaks of blood in one of his diapers. So they quit his feedings and gave him an IV. No more blood since, and they've since resumed his feedings, but here's hoping he doesn't have an allergy to a milk protein. He's already on soy formula, which is something I requested because of Bennet's allergy and Lydia's sensitivity when she was under one year. But if he has the allergy then we'd have to switch to a prescription formula and/or stop giving him breastmilk for his tubed feedings. Hopefully that one bloody stool was just a fluke.
This is completely unrelated to James but Arwen has a great post at Faith & Family about Catholic mom blogs. I have a couple friends whose blogs I cannot read because of how bad they make me feel about myself. (I mean, really, can't they just own "pretty"? Why do they also have to be good at the things I am borderline good at, too?) I hope I never seem to present just the most attractive version of my life, and I especially hope I never make someone feel bad about themselves. I'm pretty honest, though because I'm hoping people will relate, not compare.
It's 8:30pm exactly. I feel like it's midnight.
Thank you for your prayers! They are working - God is listening to us!
Pray for: continued healing of brain, success with bottle feedings, normal muscle tone, no acid reflux - ever.
Praise God for: all the healing He has done so far, the Body of Christ that is lifting my family up through this difficult time.
Go to bed. I am. Good night.
Consider the above music to read to. :)
I haven't called the hospital to see about the EEG. They might not even know yet, but I'm too nervous to find out.
I am on my second iced chai of the day. Sometimes, when the Tazo concentrate is on sale I buy it because, sometimes, I feel like I deserve it. Even if it costs $4.35 on sale.
Bennet's vocabulary is still pretty limited, or ya know, non-existant. He's 13 mo and has a sister who speaks for him. He kinda says "yeah" and "mama" and "dada". He claps when he's happy, and makes the most pitable face when he's sad. Lydia could point to most body parts, name most farm animals, and make a bunch of animal noises at his age. Whatev.
Last night Lydia came running into our room*+ screaming. She sounded absolutely terrified. Trav and I both jumped up, me also screaming. Trav scooped her up and we sat with her, holding her, calming her. She couldn't explain to us why she was so upset, though she might have awoken and called for us and we didn't hear her because we were both in such deep sleep.
All I could think of was that stupid new movie Paranormal Activity II. While catching up on Glee on Hulu I had to watch a commercial for it over and over. So when Lydia came running in screaming, her heart pounding, it scared me and all I thought was we're gonna have to get a priest over here.
Today, though, I think that it was because she wasn't able to spend any time with her daddy yesterday. She acted fairly similarly in the first couple of weeks after James was born and Trav and I were gone most of the time.
Tuesday, October 19, 2010
Thanks be to God, James does not have acid reflux.
His bottle feeding is still inconsistent.
His g tube will be surgically placed a week from Wednesday (which is probably "today" for most of you reading this).
After the surgery it could be 2-7 days before he comes home. ([big parenthetical break coming] They've been telling us 7-14 days for about 25 days. That's kinda frustrating because I no longer trust the doctors when they give me a time frame, but I also think that 25 days ago they thought James would be home with a blank stare, monitor, ventilator, limp neck, and tightly folded thumbs. My little boy with big blue eyes just keeps wowing 'em.)
Sometimes babies with neurological problems (ie James) who have the g tube end up developing acid reflux.
Tomorrow we learn the results of the thrid EEG, which James had today. As you may remember, EEGs tell us about brain wave activity. His first was done while he was on the cooling pad. As an NP said, "It's telling us he's cold," meaning no activity. His second was done shortly after he was warmed. It showed "quite abnormal" activity.
I hope to God this third one shows much improvement.
The other day a different doctor did rounds with James. She had met him when he was first admitted, and when she saw him looking around, tracking things, finding her when she spoke, moving his body, and lifting and holding his head she was very impressed. "That's very good," she told me with a firm nod of her head and a slight smile. I've learned that's a pretty strong statement coming from doctors on our floor.
He is such a little miracle boy. I'm sure I don't seem like it, but I'm very grateful for all that God has given back to us. I always talk about wanting more and more but I recognize that we have already received much.
But now I'm gonna ask for more. Please pray that God heals my sons brain. Please ask that James be spared acid reflux and that his surgery goes well. Please pray for success in his bottle feedings.
And if parenthetical isn't a word, just let it slide.
At 5pm today we meet with the gi surgeon. We'll discuss the placement of the g tube (feeding tube to the belly). Also, if James has acid reflux the surgeon would like to wrap some of James' stomach around the top so it can't reflux. I lack a lot of info on this surgery, but I'm a little iffy on it. Anyone have any thoughts? Pros? Cons?
I would appreciate it if you'd pray for Travis, the surgeons and I as we discuss our options for Little Boy Blue.
And prayers for James to do better with the bottle would be appreciated, too. They just upped the amount of food he needs to take - he's such a big boy! - but that means it's even harder for him to meet his goals.
Saturday, October 16, 2010
And to be honest, without sounding like some over-the-top, hyperbolizing egomaniac, with that realization came a feeling that I shouldn't be surprised if one day I too would have a special needs kid. Of course we don't yet know how James will turn out. My Little Boy Blue could be a NHS quarterback who is well liked because he's kind, honest, and hard-working. But his bottle feedings are getting worse and worse, and I don't know why. I want to give him every opportunity to prove himself but I also want to just let him rest. I want to push him, to ask him to push himself, but I already feel like I've asked too much. And I know I've said it before, but this limitless list of possible outcomes for my son are overwhelming. Too overwhelming to think about and live my life. To think about them is to break down in tears, and a fat woman crying all day is no good to anyone.
I can and will keep asking for a miraculous full restoration. But in the meantime I also have to be prepared for God wanting James to be who James is, not who I want him to be. And who he is, is someone with brain damage.
Us pro-lifers like to say that every person has dignity, is made in the image and likeness of God, is beautiful. We say that even those who seem to have lesser lives actually have lives filled with beauty, joy, love, and goodness. We talk about the lessons they can teach us. I know that all of this is true.
But where I stand right now, it all sounds like a bunch of bullshit. I don't want my kid to be someone else's lesson. I want my son to be normal. I suspect that in the future I will know much more fully the truth of those pro-life statements. I suspect that they won't be rhetoric, they will be a part of my testimony. But for now, for now, they just smack me in the face and rip out of my hands all the hopes and dreams I have for my son, my family, and myself.
Kind people have told me that I'm strong, but I am not. The truth is that if you were in the same situation as I you would do what I'm doing. You'd do what you have to do to keep the plates spinning, knowing that the only reason any of them are up at all is because you have Help.
God didn't pick me because I was big enough. I think He picked me because I was little enough.
Friday, October 15, 2010
Actually, I don't know how much that was affecting him when he nippled and such, but "it didn't help!" in the words of his nurse practitioner.
You should have seen him, though. He cried if he didn't have his pacifier, but he also looked around, listened to me sing, held my hand, and was just so cute. He is so precious. Adorable. Wonderful. Miraculous.
In other news, Lydia spent a long, fun day with her Daddy at work. Today was Homecoming for the Grey Ghosts, and she had lunch at school, drew on his whiteboard, saw the Homecoming parade, went out for pizza, and went to the football game. She had a blast.
Also, Bennet is cutting another tooth. He's grumpier than usual, but still so cute. He is so expressive with his hand gestures, grunts, and babbles. Also, I'm pretty sure he says, "tickle, tickle, tickle" "mama," "dada," light," "dia" for Lydia, and "ah dah!" means he's happy.
Lastly, about the breastmilk. I have quite a bit in storage, and James gets it in his feeding tube, which is what we'll continue to do at home until the milk is gone or he's no longer feeding through the g tube. I cannot put him to breast because milk is too thin for him to handle. In fact, the only way he is able to take a bottle is if he has a mixture of rice cereal and formula. Breastmilk contains an enzyme that breaks down starches so a bottle of breastmilk and cereal would be one consistency at the beginning of a feeding and another, unsafe consistency at the end.
1. It's 4:40am and I've been up for a little while. That kinda sucks. Also, I should be working on something else, if I'm gonna be working on anything, but I'd much rather eat Frosted Flakes and type this.
2. I'm in the midst of Operation Dry Up, but someone hasn't told my milk ducts. The only way I know to dry up is by getting pregnant and that's not gonna happen right now (mental note: begin charting). I am still pumping because I don't want mastitis, but I am not emptying the breasts. I was hoping to notice a drop in output after 3 or so days but no luck.
3. The reason for Operation Dry Up? James will be coming home very soon and I don't think there's any way I can pump and take care of all the kids and not go crazy. And I'm not being flippant about the crazy part. I remember post partum with Lydia and so I know it's within my realm to have a very, very ugly, difficult time adjusting. Taking one thing off my plate, even something as good as breastmilk is simply the right thing to do.
4. Bennet had an appointment with an allergist earlier this week. As was suspected, he is allergic to dairy, eggs, peanuts, dogs, and cats. The good news: his allergy to dairy and eggs manifests itself only in itchy rashes and dry skin so there's a chance he may outgrow those. Yay for ice cream and French toast! The bad news: his peanut allergy is more severe and so we should begin reading labels and removing all peanut-y things from his diet. More bad news: the dog and cat thing he may also outgrow but it often morphs into seasonal allergies, pollens, trees, etc. He is also more likely to develop asthma. Because of this my in laws will have to do some major pet hair removal before his arrivals and my dad will have to quit smoking forever. Okay, so the quit smoking thing is really good for everyone, but it'll be hard for Dad. And really, he wouldn't have to quit, but we're going to use Bennet's condition as another reason why he has to. But don't tell him that!
5. A lot of friends have been bringing us meals. I just want to thank you for doing that. It's soooo nice to not have to budget meal prep into my days. It leaves more time for kids, which is something I really need right now (so do they!). It's also wonderful - and I mean really, really wonderful - to not have to exert the mental energy for meal planning and grocery shopping. And, of course, it's also nice to get to eat really good dinners every night. :)
6. Today James gets an upper gi test to see if he has acid reflux. If he does they will do some stomach surgery to correct it while they put in his feeding tube. (I encourage you to google "g tube" to see what it looks like.) So yes, James is getting a feeding tube. Basically he is having problems nippling his entire feedings and is still at risk for aspirating. I have a very strong feeling that he will improve with these things when he's home, being fed by the same 2-4 people, not on a feeding schedule, not interrupted from his sleep for various reasons. However, I also know we will be using the g tube to make sure he's getting all the calories he needs, especially as he continues to heal and get stronger. I am not as scared or sad about the g tube as I once was, though I do pray for healing of James' brain and throat so he will eat safely and normally.
7. Yesterday I went shopping for a few new pieces of clothes. For at least a year I've been wearing hand-me-down jeans from a friend with a different body type than mine. I finally got a new pair - and from a real department store - not Wal Mart or Target! I also bought a new pair of black flats since my old flats are now too small for my pregnancy-grown feet. I looked at shirts, too, but only felt affirmed that if you're large chested and all around fat there's not many choices available unless you want to wear things that are too small or have the same wardrobe as your mother. Mom's clothes look great on Mom, but they're not my style. This is why I looked like crap in high school.
Tuesday, October 12, 2010
Now then, there's a few things I wanted to mention:
First, we're not sure when James will come home. We get asked that a lot - and it's a good question - but I don't know what to tell you. It all depends on how he does and if he gets the g tube or not. His eating is the only reason he's still in the hospital.
Second, part of me is really sad about leaving the staff of the NICU. I really, really like going in every day and chatting with the nurses and other staff members. Everyone's so kind (and fun) that I look forward to seeing the different people. J and S and J and L and M and the local gym teacher's wife - why can't I remember her name?!! - they're good people. Plus, they have loved and cared for my son at a very precious time in his life. I feel like they are connected to my family forever now. (Does that creep them out, do you think?)
Third, I hope you are still praying fervently. It isn't so urgent feeling now, but please know that when I think of your prayers I literally, physically feel better. We're in this for the long haul, and I hope you are, too. Sincerely, your support means a great deal to Travis and I. I honestly think it's the reason we're doing as well as we are.
Fourth, I've gained almost 30 new followers since the proverbial shit hit the fan a few weeks back. Just to warn you folks, I will be returning to boring blogging again, talking about things like Halloween costumes, cute things Lydia and Bennet do, the fact that Travis is growing his beard out and I like it. I'll also probably start posting youtube videos of songs I like again. You'll also hear me complain about being tired. Oh wait - I've been complaining about that all along. Well, you know, just be prepared for the return of the everyday. I hope you stick around though. And I hope my great aunts keep reading! I love that you're reading! :)
Yesterday when I went to the hospital to visit I ran into the doctor in the hall. She told me that James was not nippling (taking his bottle) as well as he had been. When I asked why she thought it might be, she told me because of the brain. The feeding therapist had met with him and was concerned. James has always been a "disorganized eater" where his arms start to move and he doesn't know what to do and he "forgets" to suck and swallow. Usually if he is swaddled he does much better but yesterday he just seemed "lost" as he ate.
Maybe he was just having a tough day. We all have bad days.
But news like this, and especially any mention of the word brain in relation to damage, brings on a whole new cycle of guilt, fear, and grief.
My mom says that God has healed James and that He will continue to do so, if only in His time. She says that James improved so rapidly for so many days that it's easy to feel like a one day set back is a set back, but it's not. Mom says that the healing of the brain may take awhile, but it will happen.
But I am so afraid of the long process. I feel inapt to parent him once he is home. I'm afraid of him coming home and I feel overwhelmed when I think of how hard it will be with Lydia, Bennet, James, and James' special needs. The nurses and doctors speak so warmly and positively about getting James home. I picture myself lying on the living room floor, sobbing, surrounded by my 3 crying children.
In something that is not a coincidence, the Church's recent Sunday readings have been about faith and healing:
Naaman went down and plunged into the Jordan seven times at the word of Elisha, the man of God. His flesh became again like the flesh of a little child,and he was clean of his leprosy. 2 Kings 5
As he was entering a village, ten lepers met him. They stood at a distance from him and raised their voices, saying, "Jesus, Master! Have pity on us!" And when he saw them, he said, "Go show yourselves to the priests." As they were going they were cleansed. And one of them, realizing he had been healed, returned, glorifying God in a loud voice; and he fell at the feet of Jesus and thanked him. He was a Samaritan. Jesus said in reply, "Ten were cleansed, were they not? Where are the other nine? Has none but this foreigner returned to give thanks to God?" Then he said to him, "Stand up and go; your faith has saved you." Lk 17The apostles said to the Lord, "Increase our faith." The Lord replied,"If you have faith the size of a mustard seed, you would say to this mulberry tree, 'Be uprooted and planted in the sea,’ and it would obey you." Lk 17
Blessed he who keeps faith forever,...
The LORD gives sight to the blind.
The LORD raises up those who were bowed down; Ps 146
When I hear those above passages I feel guilty because I am surrounded by people who believe, yet sometimes it is so hard for me to hold on to hope. I fear that my faith is not the size of a mustard seed and my son will lack because of it. I have to keep coming back to Peter's words, "Lord, I believe. Help my unbelief." I suppose that's all that matters in the end, though - that I keep coming back. I don't know.
The Sunday after James was born gave us this message:
The person who is trustworthy in very small matters is also trustworthy in great ones; Lk 16
It makes me think that, if nothing else, God has found Travis and I to be trustworthy in the very small matters.
Please pray that God will heal my son's brain. Please pray for continued success with bottle feedings. Please pray for normal muscle tone and no more tremors.
And please pray for me, Travis, our marriage and our family. The stress and emotions are often overwhelming.
Sunday, October 10, 2010
Let's start with being tired. That's how yesterday started for me - waking up tired.
And add to that a CPR class I had to take at the hospital in preparation for James' discharge. The class, which was well taught by a very friendly woman, made me feel anxious and afraid that I won't be able to care for my son. Which, let's be honest, is a fear I've had since the ambulance came.
So that's tired + anxious + fearful.
Then there was a fiasco in James' hospital room about how I was getting home and what car I would drive. I was not prepared for this. Under normal circumstances I like a plan going into situations and with the stress and emotions of the NICU I need a plan even more. I suddenly felt majorly stressed. I was then sent home on a hot day in a car with windows I couldn't roll down and broken AC.
Tired + anxious + fearful + stressed + hot.
When I got home to a son who wouldn't nap and little time to eat, feed my kids, and get dressed in time to head out for a bridal shower I felt angry. And then trying to find something to wear that was appropriate and cute, well, that was impossible.
Tired + anxious + fearful + stressed + hot + angry + fat = a bad mood I didn't shake for the rest of the day.
Which really sucks because I went to a Sara Groves concert last night. $10 bought me a ticket to my favorite singer's concert just 10 minutes from my house. She was funny and sweet and honest - like her songs. She is a wonderful pianist, storyteller, lyricist, and singer. I was so confident that the concert would be this great release for me, but I barely heard her songs because I was so grumpy. In fact, through most of the concert I felt disappointed more than anything else. Disappointed because I wasn't enjoying her performance as much as I had wanted because I was in such a bad mood.
I suppose that under the circumstances I am now living in having a terrible, horrible, no good, very bad day once a week isn't so bad. Right?
I think I need more sleep.
Friday, October 8, 2010
Thursday, October 7, 2010
At the last minute a friend offered to babysit Lydia and Bennet so I could be at the test and speak with the feeding therapist. I also got to talk to the nurse practitioner, the doctor and James' nurse. My little boy is doing really well and I'm so proud of him!
They'll be starting him on bottles right away.
Please pray that he will continue to do well with bottle feedings. Once he is taking 8 full bottles a day he will be able to come home. That's our next goal.
Funny incident of note: James is now in size 2 diapers because he weighs 11lbs 8oz. His nurse had to go up to the pediatrics floor to get diapers big enough to fit him because the NICU doesn't stock diapers bigger than size 1. Come on, that's funny.
Wednesday, October 6, 2010
If it be according to Your Will, glorify Your servant, Fulton J. Sheen, by granting the favor I now request through his prayerful intercession - that James Fulton successfully take a bottle during his cookie swallow test at 8:45am Thursday and that he have continued success in transitioning from a feeding tube to a bottle.
I make this prayer confidently through Jesus Christ, our Lord. Amen.
I understand that not everyone who reads my blog is Catholic and so they are not comfortable asking dead people in Heaven to join us in praying for my son. That's okay. Just pray this prayer minus the part about Fulton Sheen. ;) For more details on the cookie swallow read the "good doctor" post below.
Dr. C is also the one who ordered this third cookie swallow, believing that this third time just might be the charm. Technically she is no longer James' doctor since they rotate every month, but she met with Travis and I yesterday to discuss possibilities for our son's future.
We discussed the swallow. James will need to take at least 20-30ml of a mixture of rice cereal and formula with no aspirations and no more than a few "shallow penetrations" of food into the "at risk area" of the windpipe. A full bottle for him is 80ml. The rice cereal - formula mix is like a thick milkshake. He'll have to be on formula because breastmilk breaks down starches and would thin down the rice cereal by the end of the feeding - dangerous for James. Right now the options that stand before us are:
A) James does well tomorrow at the test. He then does well throughout the weeks, slowing moving from two bottles of 80ml to eight, weaning off the feeding tube that currently goes down his nose and into his belly. He then comes home taking all this feedings with a bottle.
B) James does well tomorrow at the test. He begins taking two bottles a day but has trouble finishing them because he tires out or doesn't work up to all eight feedings through a bottle. They would then surgically place the g tube into his belly and he would be sent home to continue on his bottle / tube feeding schedule.
C) James does not do well at the test. They immediately schedule surgery for the g tube and once it is healed he comes home. About three months later he'll have another cookie swallow to see if he is ready for a bottle then. However, as I understand it, the chances will be smaller then.
Holding James tonight, Travis and I talked about going to high school football games to watch the E------m boys play. It felt like a real possibility.
I don't know what will happen tomorrow. I feel nervous for James and the results. I didn't line up a sitter to be with Bennet and Lydia and I don't know if that's good or bad. I don't know if I can watch the test with so many hopes and fears tied up in it.
Please pray that James will pass. Please ask God for another miracle and pray that he will pass with flying colors, continue to improve, and not need a g tube.
Monday, October 4, 2010
That's what you all wanted to know, but now I'm going to make you read through a long post to get all the details.
I have been praying so much, requesting over and over again that God will heal James and that today's cookie swallow would go well. Over the past two and a half weeks my prayers have morphed from a small, scared "please God, help him," to a confident, "In the Name of Christ Jesus, heal my son." I spent some time after that praying, "what is You will what is Your will what is Your will WHAT IS YOUR WILL?!" That turned into, "Oh my God oh my God I'm so scared Oh my God please heal him my God I'm so scared so please heal him oh my God heal him heal him heal him my God just do this just do this just do this please!" And today, exhausted, scared, overwhelmed, and distraught, I said, "I come to you in the Name of Christ and I confess that I am scared. I have doubts. I have doubted. But I am giving You my doubts and fears and I am asking You to fill that space with trust. I believe. Help my disbelief."
On the way to the hospital and during the cookie swallow I prayed a rosary. I asked St. James, St. Linus, Mother Mary, St. Francis (it is his feast day, ya know) and Archbishop Sheen to pray with me, and I pictured them sitting around me, praying with me. Sheen in his cape and skull cap. Mary in her blue mantle. Francis in his brown robe... I asked Mary to beg her son to save mine. And then I prayed the Joyful Mysteries, thinking about how Trav and I said, "Let it be done unto me according to thy word," when we agreed to NFP. (Annunciation) I thought about all the people who told me that Trav and I were crazy to have 3 kids so close together but how we felt like God wanted each of our children to be. And I thought about all the people who have been supporting us during this difficult time. (Visitation) I thought about giving birth to my son, how beautiful, difficult, and then terrifying it was. (Nativity) I thought about James' baptism and confirmation and the beauty of the Church. (Presentation) I thought about finding out who James will be - finding him. (Finding in the Temple)
I felt better.
And then during the swallow James slept. No amount of tickling, cold, jostling, or talking would wake him. He was napping and would not be disturbed. So did he do well? No. He aspirated once on the honey milk and only took 10ml. He wouldn't take any of the rice cereal formula. And so the test was inconclusive.
I felt a peace when the feeding therapist spoke with me about how she couldn't make any conclusions based on how he ate while sleeping. And when I told Trav about the test he said he felt the same peace. It seems that God answered our prayers, just not how we thought he would.
And so James will most likely have another swallow later this week. This gives us more time to pray, and him more time to heal. 30ml of rice cereal and no aspirations = bottle feedings.
Thank you for your prayers!
Side note - I realize this isn't the best written blog post ever. But I'm sure you'll excuse the lack of transitions and what not because I'm physically and emotionally spent and it's 10:30pm. Thank you.
Sunday, October 3, 2010
As I understand it, the muscle coordination - the reflex - to swallow is something one has or does not have and it cannot be trained or practiced into being. It is something that can be regained but not because of therapy - it just happens.
I also understand that the window of time for regaining it is becoming smaller and smaller as James ages.
Please pray that he will regain the ability to eat!
Also, please continue to pray for normal muscle tone for my little boy.
And, of course, pray for no brain damage.
Thank you very much for your love, prayers, and support.
This picture is from James' old crib. The picture on the left was painted by Lydia for her little brother. The picture on the right was created by one of the third shift nurses. She got his hand and foot prints for us - which is awesome.
Friday, October 1, 2010
#1 I feel like I can no longer track the progress of James' muscle tone. His tremors and whatnot seem to be inconsistent. Yesterday they were getting better according to one, today the neurologist wasn't impressed. The same is true with his gag and suck. I guess we have now officially entered the waiting period that they kept warning us about. It's absolutely maddening.
#2 I am terrified of the feeding tube. I've been told it's not as scary as it seems, but based on the feeding therapist's body language I'm afraid that he might never eat normal food. In my small mind if he doesn't get the bottle now my chance for normalcy gets smaller.
#3 I am also terrified of a son who is mistreated and ignored by the people who surround him because he is special needs. You know what I mean. His mind might be there, but he can't run because of crippled legs. Or his body might look and work like normal but then you notice in his eyes that he's not quite all there. And so, in a society where undesirables are aborted and my special needs son is a member of a shrinking minority, he makes people uncomfortable.
#4 I'm sure I sound like a horribly selfish person saying these things, and it's true that I just want to put this all behind me - the guilt, tears, hospital, fears, prayers of almost desperate begging - but every parent wants to keep their child safe, happy, and pain-free, right? It can't be bad that I just want my son to be able to do whatever he wants - play with his siblings, join the soccer or football team, look forward to gym class, try out for the school play, dance with his prom date, graduate with high honors, get down on one knee or lay prostrate on a cathedral floor...
#5 Please understand that it's not that I doubt God's ability to heal. I believe that He still might completely, miraculously restore my son. I even believe that He may be leading us through all these unanswered questions and towering possibilities so the miracle will be, without a doubt, a miracle, to be attributed only to God. But it all depends on what His will is; and while God's will may be a miracle, it may also be for us to bear this cross for the rest of our lives. I doubt any serious theologians read this blog, but if there is one, by chance, please answer this question: Will God change His will, or set His aside, for the persistent pray-er?
#6 In more crappy news I know have a breast infection. I got a full blown case of mastitis with Bennet and it was like having a bad flu for a week. I would love to get over this quickly. Oy vey.
#7 Lastly, I need to ask that people no longer drop in for visits at the hospital. If someone would like to see James (besides grandmas) I ask that you call ahead several days and arrange a time and date. The reason for this is because between rounds, therapy, and visitors I have not been pumping enough while at the hospital (hence the breast infection) and I have not been able to do Kangaroo Care (skin to skin, chest to chest). We really have appreciated all the people visiting, but priorities have shifted with the infection and removal of the iv. Thank you very much for understanding.