Friday, December 24, 2010

Merry Christmas to all!





Praise God! Neely is doing better and everyone is healthy and happy this year. Merry Christmas to all our friends and family!


Posted using BlogPress from my iPhone

Tuesday, December 21, 2010

Cell Phone Photos

I'm on the plane back to Little Rock and thought it'd be a good time to update with some recent pictures.


Mary Lawrence on assembly line throwing in mac and cheese mixes at our church's annual Christmas food packing drive. She loved it!




Mags watched in her stroller!




-going to church! It's still just Justin or me taking ML to church since we still can't take Maggie. Hopefully in the Spring we can start!




My sweet nephews (secret to making them go to sleep: put them in their Buzz Lightyear sleeping bags.)




Maggie getting ready to be covered in casting stuff (seems like paper- at Scottish Rite. I wanted to take a photo of her all casted up but thought that would be a tad cruel.




This is what my child looks like after being fitted for a brace for 3 hours today. Torture!! (And it didn't even fit right in the end so we have to go back!)




This is what my three year old looks like at the end of that appointment. She got so mad at the prosthetics lady bc Maggie was screaming so much. "Stop! She doesn't like that!" she yelled as she tried wiggling between Maggie and the awful looking brace.

More to come...
Posted using BlogPress from my iPhone

Monday, December 20, 2010

Update

So happy to report that Neely is doing better today. She's on heavy antiobiotics to fight infection. They are monitoring her closely for that reason. Hopefully the worst is over, the doctor said. That's our prayer, too.

Sunday, December 19, 2010

Sunday

Neely is not doing well today, high fever and pain, most likely an infection but they are doing tests to find out more. Please pray for wisdom for the doctors and complete healing. Also for her husband, Patrick, who has not left her side at the hospital and hasn't slept for days.

I flew back to Dallas this morning and am aching to be back. Might have to fly back tonight.


- Posted using BlogPress from my iPhone

Saturday, December 18, 2010

Neely, part 2

Neely is doing better today. She's going to be ok after two procedures yesterday to help
her. She's still in pain, but manageable pain. She'll be in the hospital a few more days recovering, but I knew she was on the mend when I walked in today and she was a) conscious and b) said in a whispered voice, "Is that sweater from Anthropologie?". Yes, it is, I said, and I got it from your closet.

Anyway, I feel so blessed to be able to spend such quality time with her boys. When you live out of town, it's visits like these that really cements your bond with children. Her boys are so precious- I wish we just lived right down the street and not five hours away!


- Posted using BlogPress from my iPhone

Friday, December 17, 2010

Neely

My sister has been suffering all week from a rare complication of the gallbladder removal surgery she had Monday. She's back in the hospital for the third time this week and has been in excruciating pain that not even morphine helps. I came last night from Dallas to help take care of her three boys. She'd probably be embarrassed if she knew I was writing about her on my blog. Even still, I humbly ask all you prayer warriors out there to remember Neely and Patrick tonight in your prayers...

Ever since I sat down in the terminal last night - waiting anxiously for my delayed plane- I have felt such a heaviness on my chest. It's like the Enemy is smothering me with a pillow and I'm gasping for breath, my hands flailing in the air for help...I've not yet succumbed to the lack of oxygen, but feel I am almost there.

Why, Lord, must my family keep suffering so? Why is this happening to my sister who has already endured so much? My poor mother who has watched both of her daughters suffer such physical pain?

I am praying for complete healing for Neely, wisdom for her doctors, and strength for my family. Thank to all for letting me share this with you.

- Posted using BlogPress from my iPhone

Thursday, December 16, 2010

Pump it up!

Funny story - Maggie's feeding pump runs constantly at 39 ml/hour (which is a little more than an ounce an hour). Last night in a slumber I accidentally set the pump to 391 ml/hour! How in the world I have no idea! I woke up so confused an hour later when the alarm ran to tell me the pump was already empty again.  Poor little thing! I know that was quite a shock to her system to be pumped up like balloon full of milk like that!

We did go back to Scottish Rite last week and the doctor willingly acknowledged he doesn't know why Maggie's neck is so bad. He said he'd like to take things slow because of that and assured me that scoliosis would not be a problem for her. He promised me that Maggie would not graduate from high school with her neck like that. Not sure if that is good enough, I told him, but if that's the only option then that's what we'll do. And after some pushing from me, he agreed to do a brace that Maggie's OT had suggested. So we spent five hours at Scottish Rite meeting with him, the PT, getting pictures taken and being casted for a brace. Fun, fun.

Then two days later we went to a craniofacial plastic surgeon. After looking at her medical records, he simply said that it makes total sense to him that her neck was not able to stretch properly in the womb and that is why it is so bad. (What I've been saying all along!). He said he could do surgery cut the muscle (to lengthen it) and then could put on a soft collar for 6 months and hopefully that would help her. He said it would be much less traumatic than the brace Scottish Rite is making and he said he would be very worried about scoliosis. Hmm...what am I supposed to think or do when two of supposedly the best doctors in Dallas totally disagree in their treatment plans?

We were supposed to go to the neurosurgeon yesterday but the surgeon had an emergency surgery and had to cancel, so we postponed until the 31st. I am anxious to get his thoughts on her neck, her spinal cord, and to see if there are any other missing pieces we have not thought about yet. Once we talk to him, we can get a game plan going for Maggie's treatment.

On a different note, we did go for a weight check this week and I was so frustrated to hear that she hasn't gained any weight in the past two weeks - what?!! How can that be?? She is hooked up to the pump constantly and now I am even taking out the backpack pump and attach it to the back of her stroller when we go out (I'm sure people will give us strange looks!). But I mentioned to the dietician that Maggie is now sitting up for almost 30 seconds by herself! And she is standing and holding on to things with a little help (thanks to her awesome Occupational Therapist). Finally she is starting to do some more physical things, but that of course means she is burning more calories, which explains why she is not gaining weight. I was hoping to start weaning her off of the 24 hour feeds now that her stomach has gotten used to 39 ml/hour. But since we have to increase her feeds to 45 ml/hour, the continuous will have to continue. G-tube babies are a fine science to figure out!

Today we are going to get her second RSV shot - called Synagis. Preemies/CLD babies get this antibodies shot once a month during cold/flu season and boy am I thankful for them. It is not a vaccine so it won't prevent her from getting RSV, but if she does get RSV hopefully it won't be bad enough that she would have to be hospitalized or put on a ventilator. I panicked on Tuesday - exactly 30 days after her last shot-because the clinic called and said they didn't receive her shot from the manufacturer. So the past two days I have been so paranoid about taking Maggie out and "Purell-ing" everyone that gets near her! But we're off this  morning to get it and I know Maggie is not going to be happy. Usually she doesn't mind shots but this thing is huge!

Sorry for all the boring medical updates - I do thank you all for praying. I have to say, now that Maggie's reflux is under control (which will probably start back up now that we are increasing her feeds!) she is much more delightful. She still hates the car and screams constantly in it, and she is still frustrated because she can't crawl or walk and really wants to. But other than that, she is hysterically funny with her huge four new front teeth and giggles with joy and lifts up her arms every time I walk near her...

Monday, December 6, 2010

'Mystery Diagnosis'

The thing about having a rare or mysterious medical condition is that you need a doctor who's got your back. Thank you, Lord, that we do!

Maggie's primary pediatrician is amazing. He called me last week because he, too, was frustrated that Scottish Rite wasn't seeming to help Maggie or realizing the urgency of the situation. He said that we may have to take Maggie to Houston or out of state to get help because it doesn't seem like they are going to help her at Scottish Rite(probably cause they don't know what's causing the problem in the first place).

We are still going to see the neurosurgeon and craniofacial plastic surgeon (both who are supposed to be "the best" in Dallas). And I have hope that maybe they will have the perfect solution. But if not, it is nice to know her pediatrician is going to talk to his colleagues and try his hardest to find the perfect doctor for her. I told him that we will take her any place we need to go and we will. I don't know how, but we will figure it out!

And just as I am writing this I got a call from Scottish Rite and the doctor there wants to meet with us this week after her pediatrician called this morning. Hmmm...wonder what we said that all of a sudden he has time for us:).

Monday, November 29, 2010

Quick update about test results

The nurse called today and informed us that the tests were "inconclusive." She was not very willing to answer my questions, but here is what I do know...

They found something in her spinal cord that is like a fluid build-up (I could have this totally wrong because, again, I wasn't given that much detail). The doctor doesn't think this is causing her torticollis but definitely needs to be checked out.

We are being referred to a neurologist and neurosurgeon for further evaluation about that as well as her torticollis. I asked her if I should be encouraged or discouraged about not finding any specific cause for her torticollis and, surprise, she didn't really have an answer. And I asked her if they could provide a brace or something for Maggie's neck in the meantime, and she said no, because they need to know exactly what's wrong first. I understand that, but at the same time, it seems like we could do some "management" while we are waiting. The poor child is suffering and bored and cries all of the time because she can't do anything on her own.

Anyway,from my deduction it sounds like it is not a skeletal nor a muscular problem, so perhaps it is something neurological?

Needless to say, while we are so thankful they didn't see anything life-threatening like a tumor, I am still discouraged. Two more doctors added to our list of physicians who can't seem to figure out what's ailing my child. I am praying that we don't have to wait months to get in to either one. And I'm praying for solid answers to help our child.

Thank you so much to all who are praying and keep up with Maggie - I really do pray that God blesses each and one of you.

Monday, November 22, 2010

"If we didn't laugh, we'd all go insane..."

Amen, Jimmy Buffet. Thank you MKW for ingraining that song in my head in the 10th grade because who knew how much I'd be singing it when I was 29!

Well last night we made another trip to the hospital - this time for Justin. At 5 pm we were enjoying a tree lighting festival (thinking we were doing something so "normal"). An hour later I was speeding down the Dallas tollway with Justin in the passenger seat moaning in pain and me praying that I wouldn't get in a wreck and that Justin's appendix wouldn't explode before we got to the hospital. We made it safely, thank God, but it turns out it wasn't appendicitis, but a kidney stone - which, according to the nurses, is about the same pain level as having a baby.

Poor Justin. I mean, really?! As we are sitting in the ER late last night, Justin feeling better after being shot up with a morphine cocktail, we both just looked at each other and started laughing.What  else could we do?

Today I am so thankful it wasn't something more serious, and now we are back focused on getting Maggie's tests results back.  So sorry to always write about our craziness, but I feel like I need to record it because when we're old and gray we'll never remember what all we have been through. And we need to remember!

Thursday, November 18, 2010

Rough day

Maggie's Chronic Lung Disease has not really been an issue until today when it reared its ugly head. This morning I was allowed to walk Maggie back to the MRI room and kissed her sweet head as she fell asleep under the gas mask. What I didn't know is that after I was escorted out of the room and the doctor started putting anesthetic into her IV, Maggie's lungs kind of went into shock or something, and her vocal cords closed up and heart rate dropped.

Thankfully they were prepared and had medicine on hand to open up her vocal cords, so they could then quickly intubate her with a breathing tube. The whole thing lasted about a minute, they said, but the doctor and nurses were a shaken up when they came out to tell me. They called it Maggie "misbehaving" but it was very serious and such a reminder of how serious anesthesia can be, especially for these small babies with lung issues. So after that, I had to wait three hours not knowing what to expect when they took her off anesthesia.

Thankfully she came out just fine, but cried for two hours and started coughing up blood where they had scratched her throat during the emergency intubation. And her nurse told me she is probably really sore not just from her neck being forced to stay straight during two hours of MRI scans, but also the way they manipulate her neck during the intubation probably hurt her. We got home after eight hours at the hospital and she cried for four hours until finally she fell asleep.

Honestly, I feel like I just went through one of the hardest days of my life. But then I realize that we haven't even heard the results yet. I honestly hope we don't hear for a little while- I need a few days to recover from today...

Wednesday, November 17, 2010

MRI and CT scan tomorrow

Last week we had some encouragement news about Maggie. At her one year developmental checkup she tested right where a normal 9-10 month should be for fine motor and cognitive skills (technically she is really only 9 1/2 months). The doctor thinks cognitively she is going to be just fine and that was so good to hear. However, he did not even bother testing her gross motor skills (crawling, rolling over, etc) because she is obviously very delayed because of her neck. Overall he was very encouraged but prepared me that whatever is going on neurologically or with her skeleton might be something that we will be dealing with for several years or longer.

It is funny how your perspective changes as time goes on and you deal with harder and harder things. I remember being so upset about them putting a permanent tube in her stomach. Now I see that was really no big deal. Who cares about a tube if Maggie can otherwise function as a normal child? Now I am just praying that whatever it is, it can be fixed and Maggie can live a normal physical life. Her doctor said to make our goal for her to be ready to go to kindergarten. I'm fine with that!

I don't know when we will get the results of her tests, but I admit I have made myself so sick after reading on the internet the things that could be causing her torticollis. Some articles talk of life long pain; other things I have read are much worse. I am praying and pleading that this baby won't suffer any more. That she can be fixed to lead a healthy, normal life. She so badly wants to as she watches her older sister prance around the house in her ballet shoes, holding her princess CD player in hand. Maggie smiles like I've never seen a child smile when watching Mary Lawrence.

Thanks for praying for the anethesia tomorrow - I'm praying that Maggie can come home soon after and not have too many lingering affects from it.

Tuesday, November 9, 2010

Finally...

Maggie is starting to make strides in her weight gain. She has been hovering around 13 pounds for about six months now, which is quite scary if you ask me. With the vomiting under control and now the 24 continuous feeding, she finally gained weight! She is now up to 15 pounds! That's more than a pound in two weeks. Woo hoo!

Now I know that is still really small, but I am so encouraged we finally have a plan that works, no matter how annoying it is to lug a feeding pump around all day. So by my estimates she will be 18 + pounds by Christmas! Yes, most twelve months don't gain an ounce a day but Maggie is catching up big time. And I'm adding fat to her diet wherever I can. She likes apple juice so I offer it all day long! And I will add corn oil to her baby food or just shoot up a syringe of olive oil into her feeding tube. Let's just say constipation is no longer a problem!

Anyways, her pain is much better thanks to Nicole (her old nurse) who came over last week and showed me how to tape her tube up better so it doesn't pull or rotate. She still screams when I touch it so they are starting her on antibiotic's in case there is an infection going on.

I am praying that Scottish Rite gets us in sooner rather than later for the MRI and CT scan. Of course I am anxious to know the results although I am not too hung up on it. I realize it is not in my hands and so why spend energy worrying about it? I have gotten back into the habit of praying over my children after they go to bed and through that the Lord has given me a renewed peace that He is going to watch over my children and help us through whatever we may face in the future.

Thanks for the continued prayer!

Sunday, November 7, 2010

Photos

A few photos from the past few weeks ...Halloween, the sweet party my friends had for Maggie, and pictures of Mary Lawrence as a flower girl last night.


Strawberry Shortcake

and her pink kitty cat



I have the dearest friends ever...
So much fun!
Finally a night of fun for weary parents - although ustin couldn't do  many of his signature moves on the dance floor due to his back.
thanks lolly for coming in town to help again!
She thought Whintey, the bride, was Cinderella!


Thursday, November 4, 2010

Happy 1st Birthday Maggie!

Today my mom recounted the story of exactly one year ago when she ran through the labor and delivery doors at Baylor, right past the check in desk, to get to me as fast as she could in my hospital room. The nurse stopped her to make her sign in and she said, "I can't. My daughter is in labor and they don't think the baby will live!" The nurses then hugged her and let her through. She and my dad found me in my worst state- heavy contractions, no epidural, and having difficulty breathing. Maggie's heart rate was dipping eerily low and the doctors were scrambling. As a mother she must have felt so helpless, watching her daughter being rolled into the O.R., not knowing what would transpire inside.

She said my dad, my sister, and her waited for what seemed like eternity in the waiting room until finally they couldn't take it any more and my dad went and begged a nurse to check on our status. My mom said he walked back in the waiting room crying (which is a rare sight, if ever). She thought his tears meant Maggie didn't make it. But she was wrong! They were tears of joy. Maggie was born and she was alive! God heard our pleas for her life. He gave us a miracle in plain sight, for all to see and for all to know that He is the true author of life and that He is not bound by what He created.

So on this very special day I want to glorify God for what He has done. There is no medical explanation for why Maggie has lungs after 15 weeks of little to no amniotic fluid, but she does. And when I wake up in the middle of the night and hear her rhythmic breathing, I am reminded again of those quiet nights in the hospital when I would pray for just that very sound. And one year later, the very sound of her breathing moves me to tears.

Thank you for all the birthday cards, emails, calls, gifts. It means so very much. Thank you to my dear friends who threw Maggie a little party because her mother was too exhausted to do anything. Thank you to my family and husband who have held me up through this past year. And thank you to all for the prayers for Maggie. No doubt it's been a hard week, but what a reminder I have today, on her first birthday, of God's faithfulness and goodness. Happy first Birthday to my Maggie! We are so proud!


- Posted using BlogPress from my iPhone

Wednesday, November 3, 2010

Prayers and Praise

Our visit to Scottish Rite was not what I had hoped for. In fact, I was shocked when the doctor told me that her torticollis was not a muscle issue. What?!! So you mean to tell me that all of this stretching, therapy, and torture of my child has been for nothing?  The doctor believes that Maggie's torticollis is due to either a neurological issue or a skeletal issue. Either way, it is much more serious than we thought. He didn't elaborate on either but ordered a CT scan and MRI, which we will have in the coming weeks.

Of course  I am beyond upset. I called her pediatrician/neonatologist first thing today and discussed it with him. He reminded me that Maggie did not have any brain bleeds as a baby, and cognitively she is right on track. Yes, her gross motor skills are delayed in that she can't sit up or roll over.  And that's why the Scottish Rite doctor was worried about something neurological. But it just seems like someone would have noticed something before now. And maybe I am in denial - and someone tell me if I am - but I just feel like it is really hard to sit up when your head is off balance. And it is hard to do tummy time when your stomach has a valve coming out of it that hurts constantly for some reason. And doesn't it seem logical that not gaining weight for six months would have something to do with weak muscle tone?

I am just beyond frustrated. And my heart just aches. I love my baby so much and I don't want there to be anything wrong with her. I don't want her to suffer. And knowing that I've probably been hurting her for all of this time kills me. Here it is her first birthday tomorrow and I want to celebrate, but I have this worried feeling deep in my chest. And I don't see any relief in sight.

So I am asking for praise and prayers tonight. Again, I don't know why I feel bad asking for prayers. Like I am hogging people's prayer time. But Maggie is so dear to so many people and I know that many of you love praying for her so this is what I humbly ask:

Praise for her life, that she is here on this Earth with us, and praise for how far she has come in the past year.

Prayer that she does not have anything seriously wrong with her brain, spinal cord, or bones. That this doctor is wrong and that whatever she has can be fixed easily and painlessly. Pray that Maggie will have a normal childhood and healthy life. And that God will be glorified through it all.

Thank you.

Monday, November 1, 2010

A wreck

Yesterday Justin had to go work for a few conference calls (yes, Sunday morning conference calls). I felt physically awful because I have a bad cold/cough and couldn't sleep well. Maggie's screaming had not been relieved by the new button. It was 11 am and all I was thinking was, "how am I going to make until nap time?" I know every mom has days like that where you nerves are just shot and you think, "I'll just load the children up in the car and run an errand just to get out of the house." I mean, either she's screaming in the house or in the car, might as well get something done, right?

Well, Maggie's crying escalated due to fatigue and Mary Lawrence had a meltdown because I wouldn't buy her a toy. As we are driving home, I am at the end of my rope. I just want to get home and put them down for a nap so I can have some peace. I don't remember much of what happened next, except that I was trying to talk to ML about why we didn't need another toy and then the next thing I know we are in a bad wreck. The road curved and trees line the street. I guess I had turned to look over my shoulder at Mary Lawrence right when the road started curving and my car grazed the curb then lost control and went up on right into a tree and then kept going and hitting the other trees. Or at least that's how I remember it.

The next thing I know people are running up to the car and asking if we are okay. I didn't realize how bad it was until I got out...
Just when you think you can't take any more....

The rest of the day I felt so guilty. I still do. I have always been a good driver and never gotten in wreck. I could have seriously hurt my children and I would never have forgiven myself. I am just adding to my husband's stress level - like the constant medical bills aren't stressful enough?

We moms in our big SUVs think we are invincible, trying to drive while reaching back handing our children toys or talking on the phone (which I wasn't!). I thought if I wasn't texting then it would be hard for me to get so distracted that I would get in a wreck. But I was wrong. Like we've all heard before, life can change in an instant. Never again will I take driving my children around in the car so lightly. And I will always try to avoid driving in the right hand lane when there are potholes and trees so close to the street like that. That tree came so close to Mary Lawrence's door. I am just so thankful to God that are all safe and were not hurt. But I don't know if I will ever be the same in the car again.

As for my mental state (because I know you all are wondering!) I pretty much sobbed all yesterday afternoon. Poor Justin is probably regretting his decision to marry such a basketcase. (He was so sweet and understanding about it all, he even brought me flowers last night when he got home from working).  Anyway, you know how celebrities check themselves into the hospital for "exhaustion" and "fatigue"? I'm sure that's probably Hollywood code for "drug overdose," but right now it would be really nice just to check into the hospital and just sleep! An have someone else take care of me and everyone else.

Obviously that's not going to happen. I just have never felt at such a low point of helplessness and exhaustion in my life. Maggie cries the majority of the time she is awake (although last night trick or treating she did pretty well- I think distraction is good for her!). But at home the only thing that makes her somewhat calm is to be put in her bed. It's like she knows no one is going to mess with her in her bed. Frankly it's just pitiful and it makes me feel like I am neglecting her, but I don't know what else to do. I said earlier in the Spring that I don't know how I would deal with all of her medical issues if she was a fussy baby and how thankful I was that she was so sweet. Well those days are over. I felt like I handed the doctors my sweet, happy, but malnourished baby, and they gave me back an unhappy, miserable, and still malnourished baby.

I have never been more frustrated in my life. I don't care about the car, I don't care about anything material at this point. If we have to sell everything and move into an apartment I would do it if it would mean having a stable, happy, normal, and healthy family.



This is the tree that I hit. It is hard to believe that a medium size tree like this one could do that much damage to a Tahoe, espcially when I going less than 30 mph. Imagine what a tree could do going 75 mph...If your children are screaming, so be it. It is more important to focus on the road and get them home safely...let this be a lesson to all of us moms.

Wednesday, October 27, 2010

A little swticheroo

We spent two hours at the GI doctor this morning. Maggie screamed the whole time. Now, usually this would really stink. But I was actually glad the doctor could see her misery in action. I told him that she cries constantly. And it all started after we got the g-button two months ago. I told him that (thankfully!) the vomiting has stopped since we put her on a new formula at a 24 continuous feed. And he told me that her barium fluoroscopy test from yesterday came back normal.

So we brainstormed for a while as to why she could be in pain. My instinct is to think her esophagus must be horribly burned after such terrible reflux, but he thinks the Prevacid she's on should prevent that. He suggested that he could do an endoscopy under anesthesia so he could look down her throat and see if he sees any problem issues or an ulcer. But as we were talking, I told him that every time I touch her button, she winces and cries. And she refuses to do "tummy time," I assume because it hurts her. He told me that a button should not hurt and, after inspecting it, suggested we try a different sized button.

So you would think after all I have seen and experienced over the past year I could handle him casually popping out her current button and putting in a new one. But I have to say, I really thought I was going to hit the floor when I saw through the corner of my eye what it looked like. I know it doesn't bother some moms, but it just makes me so weak to see a perfectly round hole in my daughter's stomach. It sounds strange and awful but it looks exactly like a little bullet hole that's not bleeding. And, is it just me, or is it really strange that they can just pop those things in and out like so routinely like that? Seems like they would at least need a nurse in there to assist (especially in the case of a fainting mother!).

So the plan is to keep feeding her continuously and hope that the button replacement helps her pain. If not, we will do the endoscopy. He agreed that with all of her medical issues we cannot assume that she is just going through a fussy phase. Thank God for good doctors who promise to keep trying to help your children until they get it right. It means so much to me. And they are going to order a portable feeding-pump-in-a-backpack (lovely!) so I don't have to lug around that tripod thing.

I just hope that I can have my happy baby back soon. Although I did tell him as we left that I can deal with anything - even constant screaming - if my struggling child would just start gaining weight...

Friday, October 22, 2010

Morning Surprise

Well Maggie has been screaming pretty much any time she is awake the past few days. I know she is teething, but is it something else, too? It is hard to know. The GI ordered another test that puts barium into her tube and sees where it goes, to find out if there any kind of blockage or something else. That's on Tuesday and our GI appointment is on Wednesday.

As for her feeding, she did great on the pedialyte for 48 hours. Yesterday we started a new elemental formula at 15 ml (or half an ounce) an hour through her feeding pump. I slowly worked her up to 25 ml an hour by eight pm and thought she was doing great. Well about two am she started vomiting and wretching again like she was doing before- the whole episode lasted about 10 minutes and was really scary. And it looked like she spit up a gallon of milk so I don't know where that left us with our daily volume count.  Frustrated, I turned off the pump and decided to let her stomach rest until morning.

The thing is, Maggie needs to eating a lot more in order to gain or keep any weight. So here we are fighting to keep less than an ounce down, knowing that is not sufficient. But as someone said, "baby steps." So my plan since then has been to go back to 20 ml/hour and just go up little by little. Although this means she has to be connected to the pump 24 hrs/day in order to get as many calories in her as possible, meaning I have to carry the pump with me anytime I go out.  As I was jamming the tripod-like contraption into my car this morning, holding the carrier in the other arm with Maggie screaming as I accidentally tugged on the tubing, I thought, "Haven't I been here before? Oh yes, 8 months ago when I was lugging that oxygen tank and monitor around...". It wasn't until after a couple of times getting in and out of the car, I realized it was probably easier to temporarily unhook her from the pump, rather than trying to lug everything at the same time and risk dropping it or her and then rushing to the ER because it pulled her button out. Duh!

But there has been some good news, and I need to always include that because prayers are being answered and I want everyone to know. First, Maggie got accepted into Scottish Rite as a patient for her neck! We go in two weeks and I couldn't be more excited to have the best ortho docs come up with a plan for her. Second, Maggie has been saying "Bye Bye Bye" and "Da da da" which is so great because that's what a typical nine month old would be doing verbally. And she's getting her first tooth! These little things mean so much to us - anytime she does anything "normal" we have reason to celebrate!

Anyways, thanks for all the encouragement over the past few difficult days. I read my emails and blog comments this morning after I woke up to find that Blue (our huge labradoodle) had thrown up five times during the night in Mary Lawrence's room. Not only that, but you know how dogs eat grass when they are sick? Well, since Blue couldn't access any grass, he just ate big chunks out of her PB Kids rug. I mean, seriously, Blue? I wanted to just go back to bed and pull the covers over my head. Instead I opened my computer to send some emails and laughed so hard at my friends who made comments to that same effect. Like, "Really, Lee, how do you get out of bed anymore?" I had a good laugh at the ridiculousness of it all, too, And I am so glad that people can be honest and say, "Your like really stinks right now"! It's true. There is no sugar coating it.

I say all of the time, but it's only by the grace of God that we are able to laugh amidst our circumstances. Without His strength, I promise I would not get out of bed in the morning!

Wednesday, October 20, 2010

Unbelievable

I wish I had more time to record the happenings of each day. The absurdity that fills our days sometimes would make a great movie or book. I mean, no one could make some of this stuff up.

Take yesterday, for example. As I wrote that last blog post, ML was laying in my lap because all morning she had been complaining her stomach hurt. That's nothing new with her bc of her potty issues, so I just kept encouraging her to go relieve herself. But when the complaining turned into screaming I decided to call the pediatrician's nurse line. She said to bring her in immediately in case it's appendicitis. So we rush to the doctor. Mary Lawrence is screaming hysterically the whole way because she hates the doctor and she feels horrible. We get there and she continues to scream uncontrollably. It's obvious she's in pain and so sick and I have a gut feeling she's about to throw up. So I ask the receptionist if we could please be taken back to a room because I fear any minute she's going to explode. The lady basically ignores me and I watch as she checks out three families with bouncing, healthy newborns. Tears creep into my eyes as I, myself, am about to explode with frustration.

So there I am walking around the sick waiting room holding my screaming daughter, her legs wrapped tightly around me and her head in my chest. Then it begins...five rounds of vomit in between bouts of screaming. People watched in horror as ML soaked the both of us- all down my shirt, pants, shoes and everything she was wearing. Horrible, just horrible.

Thankfully, some nice nurse took us back and cleaned her off. We stripped her down and since they didn't have any blankets, I had to hold my feverish child against my soaking wet clothes. And we waited, and waited, and waited for the doctor. For an hour!!!! The whole time I'm thinking about how I need to get home and take my other baby to her doctor bc she too is suffering.

We finally saw the doctor, who confirmed the stomach bug is going around. I carry my naked daughter out of the office and drive her home. Run to CVS to get supplies. Drive home and pick up Maggie (thank goodness I have help on Tuesdays!) and took her downtown, sobbing the whole way there- really, this is just too much. I mean, it just broke my heart to leave my sick child at home with a babysitter when she needed me.

Anyway, Maggie's doctor is stumped about why she is unable to keep anything down, but we are going to try a few things over the next few days. One thing we are trying is 48 hours of just pedialyte to let her stomach rest. She did lose weight and I about broke down when I told him that the whole reason we got the darn g-tube in the first place was so we wouldn't have to worry about her eating. She may have a valve in her stomach, we thought, but at least she's going to turn into a chubby, healthy baby. Wrong!

So on the way home we stopped by CVS to get pedialyte. As soon as I walked in our back door, it hit me. Yes, I also got the stomach bug. Within minutes ML and I were in her bed throwing up in the same bowl. She'd throw up, then it would make me throw up. Justin later said it was like a mini version of that scene in "Stand By Me." Like I said, you can't make this stuff up!

About 4 o'clock I called and begged my mom to get on the next flight to Dallas. I just can't do this alone (poor Justin can't help much in his condition). Thank God she came immediately and we are so grateful because ML was up all night delirious with fever and, yes, screaming constantly.

Today we are feeling a little better, just weak. We're happy Maggie is keeping down the pedialyte and hoping that she can keep the formula down tomorrow.






- Posted using BlogPress from my iPhone

Tuesday, October 19, 2010

Suffering

It's been a really hard few days. On top of everything we are dealing with, I got the news of another pprom baby who passed away. I did not know her mother; I began following her blog after she posted on a pprom message board. Our stories are similar - pprom very early in pregnancy, bed rest, NICU stay. Except her daughter had a much harder fight than Maggie. She was in the NICU seven months and on the ventilator the whole time. Every day was an up and down for this family - desatting, oxygen scares, infections - nightmare after nightmare. Well, a few days ago I saw an unexpected and heartbreaking post - their baby girl died in their arms at the hospital after contracting a virus her tired body just could not fight.

How I sobbed for this family I don't even know! It is not fair that I have Maggie, and they don't have their Natalie. I can see how so many people love Maggie who have never even met her. Praying for someone creates a love and connection that is so tangible.

Since hearing this news fear has overwhelmed me, reminding me that we are not promised any amount of days with our children. And seeing Maggie so sick scares me.  We are dehydration watch at our house. Maggie is not keeping anything down. She looks sickly and pale - and we are counting her wet diapers. If we don't get 4-5 each day, we have to go to the hospital. We have tried so many different things and nothing is working. Her GI doctor is out of town for another week; and he doesn't want to prescribe anything else until he sees her. We are going to see her pediatrician/neonatologist today - perhaps he can give us some answers. Maggie is crying nonstop  - what happened to my happy baby? She is suffering and I can't bear to watch it. I can't bear for her to lose weight, although I know that's a given. Not having any body fat coming into the cold/flu/rsv season scares the living daylights out of me. She has no "reserves" to help her fight anything like that.

Justin is still hurting; he looks like an old man hobbling around the house . I know he is suffering, too, but is going to work and surviving on pain medicine. He is getting a second opinion hopefully this week.

Thank you for your prayers, emails, and thoughts.

Friday, October 15, 2010

Starting Fresh Each Day

Well we had some "firsts" around here yesterday:  the first time I let my daughter leave the house to go anywhere with her pajamas on; the first time I gave her candy for breakfast ( I had forgotten to give her breakfast when we left the house at 6 am and all I had in my purse was a Kit Kat); and the first time I gave her a haircut because I didn't have time to wait an hour at Cool Cuts only to have them do a horrible job. Well, lucky me, I didn't have to go anywhere for that this time because we had another first:  while I went to check on Maggie, Mary Lawrence grabbed the scissors and started cutting chucks of hair away from her head.

Yes, things feel like they are just a little out of control around here. That's why I haven't blogged. I can't stand to complain and always write about what's going wrong in our life. But just in case my friends are wondering why we've fallen off the face of the planet here's what's been happening:

1. On Sunday Justin threw out his back. He has been incapacitated for six days now and is still in excruciating pain every time he moves. He had a cortisone shot but it wasn't the quick remedy he was hoping for. This is very serious and we are not taking it lightly, but I really feel like I don't have much "nursing" left in me. Poor Justin is in so much pain, and it's been scaring Mary Lawrence to see her daddy like this. I hate to be a prayer hog - always asking for prayers for my family - but I just don't know if we can take much more. Please pray for Justin's back to heal and for him to avoid back surgery.

2. Maggie is no longer the happy baby she was before the G-button. It's hard for me to admit that because she is so sweet, but something is bothering her big time because she is constantly fussy. Ever since they increased her feeds (because she only gained a few ounces in the month after her surgery) she has been projectile vomiting nonstop. Even with doing a slow, continuous feed at night, she still wakes up soaking wet from all the reflux. It is quite alarming and I'm now sleeping her in room because I am so scared she is going to choke at night and we won't hear her. At the same time, she has to gain weight. It's not an option not to let her gain weight. During the day we feed her 3 ounces over an hour and she still spits it all up as soon as we move her or put her in the car seat. Of course, this doesn't help her oral aversion. She has completely backtracked and won't even touch the bottle to her mouth. Every time I hear her coughing I just think, "Oh no!" and run over to her to try and "catch" the vomit - literally. It's totally out of control and I can't take it anymore. We have calls into the doctors but she is on the maximum meds she can be on for reflux so not sure what else they can do.

3. As for the torticollis, the therapist told me yesterday that they want to explore other options while we wait on Maggie to get into Scottish Rite. She said there are some other things that can cause her to be off balance - like the fluid in her ears may not be in equilibrium and that may be causing her to tilt. There are some other things she wants to research and it just stresses me out to write about - there's always something for me to stay on top of...

4. Helmet - Guess who needs another one? Although the first one did wonders, there is still a lot that can be done and she has grown out of her first one. I really don't care that she needs another one, I just wish insurance didn't consider it a "cosmetic: procedure. I mean, really, is it her fault that she was smashed up against my ribs for four months without anywhere to move and then flat on her back for two months in the NICU?

I know God is using all of this strife for His good purposes. It's just hard to see what those purposes are when you feel like your family is crumbling apart right before your eyes. Two things are clear: One, God is using me as the glue to hold this family together and, two, I stink at doing it. I cannot do it alone. I need His help to get through every hour and every day.  I need His strength, His patience, His gentleness, and His love so I can be a mother whose husband "has full confidence in her" and whose children call her "blessed." (Proverbs 31). Honestly, I don't think they would say those things about me right now. But due to the grace of God I can start afresh this hour and that is what I am going to do....

Monday, October 4, 2010

Oops

Well, we learned this weekend that the helmet is good for more than one reason: when your three year old pulls your baby off the bed by her feet you are no longer annoyed by that piece of plastic around her head.

Yes, this is what happens when there is major miscommunication between husband and wife. After hearing an awful thud, I ran into the room - my hands covered with raw meat, mind you, because I was making meat loaf - to find Maggie crumpled face down on the floor. (Justin had left her face up at the top of the bed so ML had dragged her down the middle of the bed and then let go as she realized she couldn't possibly hold her).

So all afternoon we dealt with screaming (including me), pacing, worrying, guilt (me), and every emotion in between as we contemplated going to the ER. The sad thing is that if Maggie were a normal, healthy child we'd have probably rushed her immediately to the hospital for our own peace of minds. But because we have frequented so many hospitals, we just weren't that motivated to go. If she didn't have her helmet on, sure, we would have been there in 5 minutes. But after a few bone checks, she seemed just fine. No lethargy, no abnormal crying, so we just shrugged our shoulders and got to talking to ML about the dangers of dropping babies on the floor.

Yes, we opted out of an afternoon at the ER and instead went on a stroll to Eatzi's to get some French bread, Brie, and Pinot. Ha ha- is that terrible? I guess we've learned to enjoy ourselves as much as possible in the short times we have when someone is not either screaming, projectile refluxing, or requiring some kind of immediate attention - which, sadly, is not very often.



ML loves getting in her sister's crib and so was actually trying to do something sweet (or at least that's what she told us!).


This morning before school- she's already excited about Halloween.

Posted using BlogPress from my iPhone

Thursday, September 30, 2010

Update

Well I haven't updated on Maggie in a while because I've been so discouraged this past week about her progress, particularly her torticollis. I have been beating myself up lately for not doing her stretching and strengthening exercises more often. But the more I've thought about it, the more I have come to believe (in my own humble opinion) that a normal child would have shown a lot more improvement after six months of intensive therapy like Maggie's had. Which is why I've convinced myself that her torticollis could is probably more related to how she was in the womb with no fluid. (Perhaps her muscle didn't grow properly as she could not move around much? - I mean, it makes sense to me!). I am just praying we get approved to go to Scottish Rite so we can get a better opinion on that. Perhaps she will need surgery sooner than we think. And the Physical Therapist recently mentioned using Botox as well on her neck muscles to help loosen them up (I know it's the opposite of what you'd think Botox would do!)

The truth is, what we are dealing with is not overwhelmingly serious, but we still have to deal with it. And the sheer amount of time needed to devote to her issues is overwhelming to me. On top of that, in the past month we have gotten a new Occupational Therapist, Speech Therapist and Dietitian. It was very frustrating to deal with that because I spent about a month earlier in the summer figuring out our "Fall" schedule - managing school, Maggie's appointments, Mary Lawrence's dance, doctors visits, and so on. But, lo and behold, that was a big waste of time! In addition to her Occupational Therapist leaving Baylor, insurance issues have forced us to find a new Speech therapist.

I had a poor attitude about all this change at first - I mean, I worked so hard to get the perfect therapists for Maggie at the perfect times! But you know what, it all ended up being okay. Having fresh sets of eyes looking at all these issues has really helped. And these new people are truly motivated and excited to help Maggie. Sure I was discouraged when her new Occupational Therapist told me that in addition to the original issue of torticollis, I needed to start thinking about the problems it is causing in other parts of her body. For example, since she can't sit up yet (because of her torticollis and weak muscle tone) she is not learning how to do the pincer grasp (picking up cheerios). Another issue is her eyes muscles - they are going to be very weak on one side since she is always looking to the left and that could affect her vision later on in life (and I had two eye surgeries as a child for similar reasons so that makes her more at risk). I just don't want to think about stuff like that right now!

But at the same time I'm glad she is aware of these things and helping me to stay on top of working with her. She seems to think outside the box, which I like. She is going to help make a special chair for Maggie that will allow her to sit up while hopefully holding up her neck. She also suggested using a simple Ace bandage to hold down her right shoulder so she can more easily look to the right.

The new Speech Therapist (feeding therapist) I found comes to our house, which is nice, and seems really motivated to help Maggie work her way up to eating more solids. And she is going to work more closely with our new dietician at Children's (who I also love!). We met with the dietician on Tuesday and I was very discouraged to hear that Maggie had only gained 4-5 ounces since her surgery. So she increased her daily intake a lot. Which I am happy about it because I've been thinking she needs more for a long time. But now we are battling major projectile vomiting from the increased volume - ugh! So we are trying to balance feeding her at a slow enough rate to avoid spit up, but not too slow where we never have time to sit her up and do her exercises. Ah, if we were only dealing with one issue it would be so much easier...

So that's about all for now. Sorry for the listing of problems - but I also know people have been praying for us and want to know how Bunny is doing. (Yeah I've gotten in the habit of calling her Bunny (like she needs another nickname!). She's just so cute and little like a baby bunny and for some reason I sing "Little Bunny Foo Foo" to her all of the time, which is probably not a good idea since it is kind of a violent song for little babies!

Wednesday, September 29, 2010

Continuing Education

You know, for a long time I felt guilty that I really wasn't using my education for anything that useful. I mean, really, I worked so hard all during high school and college to make good grades and pad my resume with all sorts of wonderful experiences. But for what? To play pat-a-cake and dress up for pretend tea-parties? Don't get me wrong, there is nothing more than I wanted than to be a stay at home mom and do those things. I just find it interesting that women are so groomed to be competitive in school and the work force, but are left feeling sort of confused when they encounter motherhood and realize that in all their studies and testing, they did not learn one iota about what it means to run a household or be a mom.

Motherhood is something most women long for, yet feel so under prepared when they get there. Sure, instinct kicks in for a lot of things, but so many things it doesn't. I can't tell you how many of my smart, competitive friends got so frustrated with themselves because they couldn't breastfeed. They felt like failures when it really had nothing to do with their level or determination or commitment. Why is that? We are taught that with most things in life if your work hard enough, you can succeed. But motherhood is not like that.  For example, we have been working for so long on getting Mary Lawrence to listen and obey the first time we tell her to do something. Every day is a battle,  and every day it just doesn't seem to get any easier. I get screaming tantrums instead of "yes mommy, I'll get in the bath now." And with the feeding thing, I work so hard, yet it never gets any easier or better.  I am sure it will, but results are not as immediate as with other things in life.

But having said all that, while school does not help us at all with some of the important responsibilities of being a mother, it has helped me in several ways that remind me that my education was totally worth it.  For one, this former history major has used her research skills to aid in finding out more info about all the medical issues plaguing her family, in order to find the right questions to ask her doctor and make sure nothing is falling through the cracks. And I've really had to tap into my persuasive skills when our insurance refuses to pay for certain things.

Another thing is managing our crazy schedules. I finally switched over from my paper day planner to Outlook so everything is also in my phone. (I have even color coded each child and all their appointments).  I have taken over responsibility for all our medical billing and insurance stuff. We probably get 5-10 letters a day regarding this stuff- no joke. No one tells you that when you have a sick child that one-fifth of your day will consist of phone calls and bill paying related to this stuff. Yesterday I felt like I was in college again because I went to Starbucks with my huge bag full of folders and stayed for a few hours. But I was not studying for a big exam like the other students. No, I was filing and typing letters and making phone calls all in regards to Maggie's health stuff. I think that doing it while sipping coffee and people watching makes it a little fun actually:).

Furthermore, it sounds so dumb, but I really think being able to carry on an intelligent conversation with all these doctors make them respect you more and really listen to what you are saying. It's like some of them take you more seriously when you say something half-intelligent. Funny because several times I've been asked where I went to school. "Oh that's great," they say when I tell them, "What do you do now?" Umm...you're looking at it...

So all you moms out there that may be feeling that you're education was completely wasted, be encouraged. You are using your education when you don't even know it. I no longer feel embarrassed about saying what I do. Because I am truly using the skills I learned in school to make my family's life better and more enriched. Sure, the baby years are tough. But I look forward to sharing my learned love of art and museums and culture with my children as they get older. I love sharing my love for the library and bookstore (yes, I am a nerd).  I hope that my background in history and french will be of some use to them in the future. And I look forward to nightly homework sessions (again, Justin will confirm that I am a dork because I really do like homework).

But having said all of that, in closing this totally waste of time essay on my life, I would suggest that schools bring back 'Home EC.' Maybe it's sexist, I don't know, but I do believe I would have truly benefited from learning how to sew on a button or how to manage bath/dinner/cleanup/children's fussy time all while staying composed and looking pretty like June Cleaver. Those things would really be helpful in my life right now....

Monday, September 20, 2010

"We will tell of your good works..."




Margaret Lee was baptized yesterday. It was such a special day; words cannot describe. Let's just say when the choir opened the service, walking up through the aisles singing "We come, O Christ, to you," the tears came flooding out...
On bed rest I remember pleading with God that we would see this day. I envisioned us standing before our church, telling of God's healing, of His goodness, and His power. I prayed - oh how I prayed - for us to hold our baby in our hands and claim God's covenant to His people with her baptism.  

Yesterday the minister who visited me weekly in the hospital and prayed over and for Maggie and me was the one who baptized her. This is the same minister who encouraged us to seek God through it all, to trust Him, and to love Him though our trials. He and his wife lost a baby girl of his own a few years back and God hand-picked them to be part of our lives during our whole ordeal. But God is good. Yesterday, in addition to baptizing Maggie, he also baptized his newly adopted precious son. God is faithful; He is good!


We love you, Bunny...


With Mimi (justin's mom)
Wearing the dress her older sister wore...
You are a child of God, Maggie. It is our prayer that we will be able to raise you and your sister to know that. We strive to bring you up in a family that loves the Lord. Our hope is that we will teach you to walk in His way and to seek Him in all you do. God has truly blessed us in allowing us to be your parents.

Friday, September 17, 2010

Update

It's just a mystery- no weight gain since her surgery. So frustrating because we increased her daily volume and she's now getting everything and not spitting up a lot. I know it seems like we should ignore the dietitians and doctors and just increase her volume by a lot more ( I'd throw in some heavy whipping cream if it's wasn't for her milk allergy!), but we have to be careful about doing that. Too much fluid from too much formula can mean more fluid in her lungs and we can't have that.

It's a fine science figuring out how much she needs, trying to gauge how much energy she is using and figuring out how to make her gain weight at a steady, healthy rate. Hopefully she will start gaining soon and there aren't any other issues we don't know about.

On that note, we are adding one more doctor to the list....her doctor and myself are unsatisfied with the progress of her therapy for her torticollis (what we call "crooked neck"). She's had x rays and the doctor doesn't think she has scolliosis, but now he wants to get a second opinion. Thankfully we have the Scottish Rite hospital here with renowned orthopedic doctors so hopefully she can get in within the next month. Because with her torticollis so bad she will be delayed in sitting up and crawling, etc.because she is off balance. I'm glad we are getting a second opinion because I'm so tired of doing her exercises and stretches all throughout the day and never seeing any results. On top of that, our sweet baby has been so fussy lately and I truly think it's because she's so frustrated and can't do anything but lay there, which she has been doing for 10 months now.

At her post op appointment yesterday they took off all the bandages and we saw the button up close. I almost passed out when she started cleaning all the gunk that had formed around it and pressing her fingers all around it. Now each time we use it, we attach the tube to the button and then take it off when she's finished. Now that it's not taped down she can easily grab the tube if it's in reach- if she yanks it, she will pull the button out. "So you mean she'll just have a hole in her stomach?!" I asked. Yes, she will, she said, and we'll have to put it back in or take her to the ER. I told her I'm not sure I'm cut out for this. You see, having been surrounded by tubes and wires her whole life, Maggie is comforted by them. She can find them so easily, even reaching under her clothes or blanket to find one. So we have to be so careful. I really think I will faint if she does manage to pull it out (which they say is a when, not if). Hopefully I'm not by myself when it happens...


- Posted using BlogPress from my iPhone

Tuesday, September 14, 2010

Do I look like I'm getting bigger?

I can't tell. We are going Thursday to be weighed. She's not spitting up a ton, but every little ounce counts for her...we'll see!



- Posted using BlogPress from my iPhone

Tuesday, September 7, 2010

Rainy, Happy Day

The rain came down today in Dallas like is hasn't done in a while. It was so refreshing and a great day to stay  inside and cuddle up with my precious girls.  I was kind of glad that my babysitter called in sick today. I didn't have to rush around town today trying to catch up on dry cleaning and grocery shopping. My house is a wreck and toys are scattered everywhere, but I don't care. All I have wanted is for our lives to get back to a somewhat normal life and that is what I got today - time just hanging out with my girls . . . making lunch, playing on the floor, and cuddling up to Caps for Sale, Mary Lawrence's new favorite book. It is days like today when I just want to thank God over and over for my children. Nothing gives me greater joy than spending time with them.

Thankfully, Mary Lawrence is back to her normal self and Maggie has not come down with the stomach bug. She is a little sore and cries when you hold her in a way that is uncomfortable to her stomach, but other than that, she is healing great.

Funny thing is that she gulped down her entire bottle the past two mornings, leaving Justin and me chuckling. Really, Maggie, you just had a tube cut into your stomach because you didn't eat and now you decide to eat?!! I'm not really stressing about it because I know she is flaky when it comes to food and tomorrow she probably won't put the bottle to her mouth. Who knows...maybe the stress relief we have all felt with the tube has eased her up a bit. We'll see. I know we made the right decision, though, because of the pure satisfaction that we feel when we are able to pump her full of high calorie formula through the tube. Just knowing that she is going to be a little chubber in a few months brings a smile to my face. And knowing that if she does get sick this winter season, we have this wonderful thing called a g-button to feed her and give her medicines to her.

Sunday, September 5, 2010

Poor babies!

Before I had children I could not function unless I had a good 9-10 hours of sleep. No joke. I couldn't hold my eyes open past 10 o'clock and would easily sleep until 7 the next morning. I remember thinking, "how in the world am I going to survive those first few months of motherhood when my baby wakes up all through the night to eat?" Ha! How naive I was to think that the sleep deprivation only lasted a few months! I haven't slept through the night in over a year. But you know what? I am just fine. Tired, yes, but I'm still able to do my job as a mother. Pretty cool how God really does give women the strength we need to take of our children despite our fatigue. Lord knows most men couldn't do what we do for more than a few days! (just kidding, hub).

Speaking of fatigue, right now it's 5 am and I'm laying in Mary lawrence's trundle bed. She's thrown up about 12 times throughout the night so I figured it'd be easier if I just stayed in here with a bowl at my side so maybe, just maybe I won't have to keep changing her sheets. I am so tired but my mind cannot clear enough so I can sleep in between these 25 minute throw-up intervals. Probably because I am making myself sick thinking about what will happen if Maggie gets this stomach virus. It would be really bad and I'm so mad at myself for not washing Maggie's hands yesterday after ML got home from Little Rock and touched her. I'm usually so good about that. Now all I can think about is how I'm going to keep this three year old quarantined in her room tomorrow. And what I am going to do if our poor baby starts vomiting when her little stomach is already hurting so much.

Praying for a quick recovery for my little angel....and for strength to make it through what's looking to be like a long day.


- Posted using BlogPress from my iPhone





Friday, September 3, 2010

Going Home

Maggie had a really good night and is now taking full feeds through her tube. Her stomach looks really good and she hasn't had any vomiting (something that happens often with g-tube placement). So we are going home this afternoon! I am so thankful for that everything has gone fairly smoothly and now we just have to  watch to make sure the area around her button heals properly and does not get infected.

Thank you to everyone who prayed us through this hospital stay. We are so blessed to have such committed friends and family.

Thursday, September 2, 2010

More Drugs, Less Clowns Please

Maggie is doing much better today. Thank you for praying. Yesterday she was in rough shape. I told my mom that it's different when you are watching your baby in the NICU because they are so small they don't really cry or show much pain. Yesterday was much harder. Maggie looked at me in tears as if to say, Help me!" It just broke our hearts to see her hurting.

The only hiccups we've had is that yesterday the NP was really hesitant to give her morphine because of her lung issues, but I kept insisting that she was in pain and needed more than Tylenol and ibuprofen. (They gave her codeine in the recovery room but the rest of the afternoon was just the Tylenol and ibuprofen.) I'm sorry, I know I am not a doctor, but if I had stomach surgery I think I would need more than over-the-counter meds. The child was screaming all day and the NP kept insisting it was just her waking up from anesthesia. Maybe so, but I know my own child and I have learned to trust my instincts and they were right on this one (with a little encouragement from my doc sis-in-law). By four pm I guess I had harassed them enough that they started giving her morphine every two hours and when the surgeon came in this morning he couldn't believe they didn't give her any all day yesterday. So that was upsetting to say the least. But she's happy now and I'm glad that all our hospital experiences have taught us to really stick up for your child, even if you get push back from the staff. Because in the end we were right - she needed more meds. And she was much happier for it!

Second, and this is kind of funny and tragic at the same time, after we met with the surgeon post operation, we were sent back in to the waiting room until we would be called back to Maggie's room. They said it might take 30 minutes or so. But an hour passed and I got nervous and Justin went and asked the person at the desk what was going on. They called up to recovery who told them Maggie had been awake for 20 minutes screaming. They said they sent someone down but since there wasn't any staff at the desk, they didn't call for us. So we rush up to the recovery room and find Maggie writhing in pain. And to make matters worse, standing over this poor baby was none other than the resident hospital clown , who was making silly faces and singing loudly in an attempt to calm her down. I mean, seriously? You can go find the clown but you can't find her parents who are sitting in the waiting room with baited breath? Oh well. If in a few years Maggie screams horrifically at the sight of a clown, we will all know why...

Besides that, this is a wonderful hospital, I promise. Our hospital expereinces have also taught us that there are incompetent people at every hospital and that they shouldn't take away from the really wonderful and talented people that do work there. We have had great nurses and the NP (nurse practitioner) is much better today. Everything is so extremely organized and coordinated which of course I like. They have these wound ostomy nurses that come teach us how to care for her button and how to feed her. And we are very blessed that God led us to such a respected pediatric surgeon. If anyone ever needs a general surgeon for their child, Dr. Murphy is incredible. I can't tell you how many people have told us how great it is that he was our surgeon.

We are near the Troy Aikman wing where there is a huge playroom with video games and Foosball, and a whole hallway of all this Dallas Cowboy memorabilia. Mary Lawrence would love it all but she's in Little Rock all week with her grandparents. And there are these volunteers (mostly endearing old ladies) who come ask you what your needs are and push around a toy cart and hand out toys and activities to the older children. It's really neat to see what all they have going on here and how they serve the families who are going through difficult times. As much as I have an aversion to hospitals, I am so thankful that they are so wonderful to my child.

I took this video a few hours ago - you can see she is feeling much better. She learned how to wave "Bye Bye" last week so she likes to do it all time. I don't want to be an obnoxious mother who thinks every little thing her child does makes him or her a genius, but I can't help being so proud of her. A milestone so insignificant to most is so huge to us:




video

Wednesday, September 1, 2010

Surgery Over!

Maggie's surgery went well- so thank you so much for praying. The only complication was that it took them a long time to get her sedated because they couldn't get the IV in so she has little prick marks all over her hands and arms. (Reminds me of when I was in the hospital and four different nurses and NPs tried to stick me until finally the anesthesiologist had to be paged to do it). Other than that, the button was placed and her lungs did great so that's an answered prayer.

However, she has been in more post-op pain than I thought she would be. I thouggt they would give her a lot of pain meds to keep her comfortable but she's definitely not comfortable and they don't want to give her any more morphine cause of her CLD, I think because it can cause respiratory distress. But it's been really hard to watch her suffer and I haven't been able to comfort her very well.

We will probably be here 2-3 days depending on how well she heals. We also will have some education on how to care for her button and wound; it takes about 8 weeks to heal completely.

Poor little baby is so sweet just laying here in her hospital bed, waking herself up every few minutes to cry or moan. I just can't wait to take her home....


- Posted using BlogPress from my iPhone

Waiting ...


Maggie and her daddy waiting





Right before she went back...







We just saw her into the OR, and now are in the waiting room - it should take an hour or so.

Thanks for praying for a complication- free surgery.


Tuesday, August 31, 2010

"That feeling"

I've had "that feeling" in my stomach all day. That nervous, butterfly-ridden feeling I got when I was younger when something big was about to occur - like starting a new school or waking up at four am to get on a bus for my first overnight class trip. Or the night before I had to leave my grandparents after two weeks with them at Christmas Break, knowing I wouldn't see them for several months. When my sister and I were anxious about something as children - and it often happened when it got dark outside - we would tell my mom we had "that feeling" and she knew exactly what that meant. And she knew exactly how to make us feel better.

I tried to hide the fact that I still got "that feeling" as I got older, but it still came with the big things in life. I definitely felt like throwing up the morning my parents drove away from the Vandy parking lot, leaving me at college for the first time. I had it laying in the hospital bed in the hours leading up to our first daughter's birth. And I had it just yesterday as I stared for hours at the huge pile of beautiful clothes on my bed. They were not my clothes but my friend Anne's whose mother sweetly gave them to me because we are the same size. But I couldn't help feeling like I just wanted to throw up as I carefully put them away in my closet. This is just not right, is what I kept thinking. Pit in my stomach - check....

The other day I asked Justin if he got that feeling growing up. "Nope," he said. I wonder if it's a girl thing, or just a me thing. I don't know, but I definitely feel it right now as I think about them wheeling my little baby into the operating room tomorrow morning. Although I keep telling everyone that this is routine and everything should go fine, who am I kidding? This is my child, and no matter how routine or uncomplicated the surgery is, it is still surgery and they are still cutting my daughter's perfectly formed stomach and sticking a plastic button in there. I am so thankful they can do this, but it still is hard to give them permission to proceed...

I have been praying over Maggie all day, asking God to protect her and keep her strong and healthy through the surgery. As it gets dark tonight and "that feeling" starts to take hold, I will remember this verse:

"Arise, cry out in the night, as the watches of the night begin; pour out your heart like water in the presence of the Lord. Lift up your hands to him for the lives of your children..." Lamentations 2:19



Here are our specific prayer requests if you think about her at 8:15 in the morning:

-Because she has Chronic Lung Disease she is at increased risk for asthma attacks or breathing complications while she is under anesthesia. Pray that she has neither, and that her body will remain healthy and strong through the surgery
-For the surgeon, Dr. Murphy, to do a perfect job
-for a quick healing around the "button" and a quick overall recovery.

Thank you to all for keeping up with us - it means so much!

Sunday, August 29, 2010

VACATION!!



We feel so blessed to have spent two weeks at the beach for some much needed family time before Maggie's surgery this coming Wednesday. It was so much fun for us all to be together without any of our normal stress. Maggie's former NICU nurse came to help us out for part of the trip and the girls just adore her (and so do we!). Oil-free beaches, crystal clear water, and 85 degrees - it couldn't have been more perfect!

Wednesday, August 18, 2010

Helmet time!










It took a few days for Maggie to get used to the helmut (or "band" as they call it). Besides smelling horrendous (poor thing sweats profusely in the thing) it's really not that bad. She has to wear it 23 hours a day, the 24th hour we can give her a bath and wash the inside of the helmut out.

I've had a few curious people brave enough to ask me what's up with the helmut - so I guess I'll explain it here, too. Some parts of her head are flat from a combination of not having fluid and being pressed up against me, and also being positioned the same way in the NICU everyday. The reason it is open on the right side of her head is to let that "flat" part fill in while keeping the left side put, since that part bulges a little. It's the same thing in the back of her head. We will go in every week or two and they'll shave out the inside of the helmut to keep up with her growth. Hopefully she'll only have to wear it 10-12 weeks, maybe more, depending on how diligent we are at keeping it on.

I bought some stickers to decorate it but I'm not as creative as some other moms who paint, decoupage, or stencil stuff onto it. We'll see...she already looks so cute in it - but I definitely need to jazz it up a bit!

The only thing difficult is getting her clothes on and off over her head. Last night was not my best mothering moment (you could say it was downright cruel) because it was late- I was exhausted and she was fussy - and I was trying to change her out of a onesie she had spit up on. It was dark in the room and I tried to do it too quickly. I thought the onesie was stuck on her helmut or something because I couldn't slip it off very easily. I kept tugging, harder and harder, thinking it just had a small neck opening. Finally it pulled off with such a force that it slapped me in the face as I heard a terrible ripping sound followed by uncontrollable shrieking. Um, yes, the reason she doesn't have a ng tube in this picture is because her mother ripped it out of her while impatiently removing her onesie. (I guess I didnt't consider the tube could be what was caught- duh.)

I stood still in shock as the tube dangled from my hand last night, too afraid to turn the light on to see what damage I had caused. When I did, I realized the tearing sound was the tape I ripped off her cheek along with the tube, which is completely raw right now. I felt so bad and was so worried all night long that I had hurt her or her stomach. But she is fine ( thank you God for protecting her from her incompetent mother). But I just thought we'd leave the tube out for today just to give the poor baby a break...


Posted using BlogPress from my iPhone


Wednesday, August 11, 2010

Torture all around...

In addition to our usual six therapy appointments and one weight check this week, we also have an appointment tomorrow to get her helmet fitted, a doctor's appointment for ML on Friday, and two pre-op surgery appointments for Maggie, whose surgery is thankfully now scheduled for September 1st.

Yesterday was her appointment with the radiologist to do an upper GI study to make sure as the surgeon said, "her stomach is in the correct place when I cut her open". When I made the appointment the scheduler told me not to feed her after 5 am the day of the procedure. Note to self: make a note to self to remind self of this important matter,otherwise you will be stuck watching back-to-back episodes of Hannah Montana in the radiology waiting room surrounded by screaming children (including your own)for two hours until enough time has passed to do the procedure.

Also, why didn't anyone tell me that an "Upper GI Study" is so awful that it would be an effective torture device against our terrorist enemies? At first I thought it was so cute when they straightened her legs and strapped them down on the gurney. She was cooing and smiling  - she looked so sweet and little that I took a picture of her:




But then the stretched her arms above her head, strapped them down and levitated her up in the air and started jamming a tube down her nose and into her esophagus and stomach. I could see on the screen the tube moving all around her upper gi organs - the whole time Maggie was gagging and screaming. But it gets worse - the table she was on rotates (see that blue circle) so the whole time the radiologist is flipping her all around trying to get different angles. I told Justin she reminded me of a rotisserie chicken on one of those rotating ovens you see at Costco. And it didn't last a few minutes. The  horrific screaming lasted over 30 minutes as I stood watching helplessly in the corner.

And today we were back at Children's Hospital for another pre-op appointment. The anesthesiologists have to do a physical on her to make sure she is okay for surgery.  You would think the child has had more than enough tests to give them complete medical information, but no, I had to sit there for 30 minutes and go through her medical history from bed rest on (which I have already told to about 40 people at the hospital but oh well).

So I have no idea what a physical on a nine month old entails (they didn't, as Justin suggested, strap a sweatband on her and make her run on a treadmill) because they took her temperature and I found out it was 101.3.  I had no idea! Of course the guilt kicked in, and I started babbling about how she didn't have any other symptoms and maybe it was the car seat making her hot. After all, it is 103 degrees in Dallas today and I am dragging this poor baby all over the place. I asked them to try another thermometer beause those temporal scanners are so inaccurate. But the hospital office didn't even have an old-fashioned thermometer so we tried three different temporal scanners. Two said 99.9 and one said 101.3. The nurses and NP debated for 30 minutes whether or not they should do the physical or reschedule.(If it turns out she has an infection the physical is rendered obsolete and we'd have to do it again anyway). Finally they said they would just go ahead and do the physical - but at that point I only had 15 minutes before I had to leave to pick ML up at camp, so we had to reschedule anyway. Bummer. But I did ask the Nurse Practitioner to at least check her ears to make sure she doesn't have an ear infection (which she didn't).

I also asked her to look at this red spot that has appeared between her eyes on the bridge of her nose last week. At first I thought she scratched herself or maybe the tape from the ng tube irritated her nose. But it hasn't gone away. So I started getting paranoid it was another hemangioma. She has one on her right cheek that appeared a few weeks after birth. You've probably seen a baby with one and wondered what it was and were scared to keep looking at the large growth on the child's skin because you were worried you would offend the mother (trust me, they are used to it, you are not going to offend them and you don't have to pretend it's not there either). Anyway, let me educate on what a hemangioma is because I had never heard of them before Maggie: it is not a birthmark, but a vascular thing, sort of like a blood vessel on the outside of the skin. Girls, preemies, children on oxygen, are all at higher risk for them. Someone told me that trauma at birth can also cause them. Check, check, and more checks for us then!

Thankfully Maggie's on her cheek is just a "strawberry hemangioma," meaning it will stay small for a year or two and then disappear completely. Other kinds, however, can continue to grow and can be as large as a baseball or can grow all over a child's skin. We went to a pediatric dermatologist several times to make sure it was the smaller kind and she watched and measured it and determined that it's not going to get any bigger. So when I saw this new thing on her nose, I started freaking out that it's another one (I mean this week has been tough enough - I don't have the energy to focus on one more thing). And no matter how superficial it is, I just don't want her to have this huge growth on her face. I can deal with a little thing that will go away eventually, but I just can't deal with a huge growth that covers her face. (I know, I know, I am overreacting but it's just the state I am in right now!) Anyways, the NP told us to go back to the pediatric dermatologist again because if it is something other than the strawberry hemangioma, they may have to give her something to treat it - which basically means add multiple more appointments to our crazy schedule. Ugh!

So I left that disaster of an appointment and because I left my stroller in the driveway I had to run with the car seat carrier banging against my already bruised thighs. I raced through the lobby and across the steaming parking lot, sped to school, and found her Mary Lawrence all alone with her teacher waiting for her mommy. No big deal, you say. But it is to me. I am so worried she feels like Maggie is more important than her. Besides, something is definitely going on with Mary Lawrence this week because she has completely reverted back to "holding" you-know-what. (If you don't know what, look back at my older posts!) And that stresses me out beyond belief because I have had to give her extra Miralax so she can't "hold" it, which makes her leak you-know-what, which makes her technically not potty trained, which makes the whole starting preschool thing in a few weeks a little stressful. And she no doubt senses my stress and so, yes, it's a vicious cycle.

Needless to say, it is only Wednesday and I already want to take an emergency chute out of this week! Sometimes I think it'd be so much easier to escape under the covers of a deep depression than to deal head on with what I deal with on a daily basis. But my children's well-being and health are infinitely more important than my own self-pity. Like other moms, I have no choice but to keep marching on...but hopefully it will be with a more joyful heart in the future:)

Update: Maggie does not have a temperature on any of my thermometers Could it be that the combination of extreme heat and the car seat carrier raised her temperature? If so that is really scary...