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.

"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!

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...

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.

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!

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!

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

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.

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.