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


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.

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Tuesday, October 19, 2010


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


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.

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