Saturday, May 29, 2010

We're Home!

We were so relieved to get Maggie home yesterday. We felt since the feeding therapists aren't there on the weekend and Mary Lawrence coming home we needed to get her back to her own environment. It felt good to bring her home from the hospital the second time and Maggie's face when she saw her big sister again was priceless.

Not surprisingly once we got home Maggie reverted back to not eating enough. Honestly, Justin and I are more frustrated than ever. They really should let parents have a full night off before taking their child home. Justin and I were so exhausted from waking up every three hours for the past two weeks and so I'm sure that didn't help our stress level. And even though we knew it might be hard for her to change environments, it still was so discouraging after two weeks of intense therapy to see her refuse to eat. I was so upset this morning at 5 am when she wouldn't even let the bottle touch her lips. The usual questions arose from my tears, "Did the past two weeks do nothing? What about me makes her hate eating? Why can't I get my baby to eat?"

Justin tried to comfort me by saying that if we can't get her to eat we still have the option of the g-tube. I know he was trying to help but that just sent me over the edge. I know I shouldn't, but I think getting a G-tube means failure on my part. People can tell me all day long that it's not my fault and there's nothing I could have done, but I will still think that of myself if that's what ends up happening. I pray it doesn't.

(Sorry this posting is such a downer. I really don't always want to post such discouraging news; I really wish I could have a posting saying "she's eating like crazy!" Maybe someday!)

Please pray for Maggie to be calm and focused on eating, to take all of her bottles, and also for patience for Justin and me as we feed her.

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Location:We're home!

Thursday, May 27, 2010


Being here reminds me how blessed we are to have Maggie doing so well. Yes, her feeding issues are serious and scary, but things could be so much worse. The hospital that we are in now is a stopping point for children with severe injuries or impairments. They are stable, but not stable enough to go home. The children have intensive occupational, speech ,and physical therapy all while being monitored by a doctor. A lot of these children have been in accidents or suffered near drownings in the bathtub or pool and have traumatic brain or spinal cord injuries. Some children's injuries stem from abuse and they have been taken from their homes and their families don't visit them. Then there are the premature babies - some born after Maggie was - who are still on ventilators. For some reason they just could not wean off of them. I met a dad of triplets yesterday born at 26 weeks. The two girls are doing great, but the boy is still intubated and has a g-tube and has a long road ahead of him. How that family is managing have two babies at home and one in the hospital is hard to imagine.

Then there is the feeding program which helps children who have oral aversions start to eat again. Some have trachs and, because of prolonged time on ventilators, have negative associations about things touching their mouths. There is a two year old boy down the hall who had leukemia and the potent chemo made him throw up constantly for nearly a year. He had to have a feeding tube to get nutrition and now the feeding team is trying to work him off the tube. Another twelve month old baby girl down the hall never had a feeding problem until she went for an MRI back in March for another issue. She came out of the MRI and would not put anything to her lips. She stopped eating and drinking completely and they don't know why.

All day long as I hear stories all I can think is, "these poor parents." And, let me tell you, you haven't seen exhaustion until you've seen the faces of some of these parents with severely impaired children. Exhastion from sleeping in horrible pull-out chairs for months. Exhaustion from the mental stress of managing their child's hospital and insurance needs. Exhaustion from trying to be strong and positive for their child while dealing with the deep sadness over the loss of the life they had dreamed for their child.

Someone told me recently that it's not good to compare your situation to someone else's much harder situation because it can often leave you feeling worse (i.e. I shouldn't be so down about Maggie's feeding issues when so-and-so has it so much worse than me.) but seeing what these other children and families are struggling can at least give perspective.  As Justin said yesterday, it's hard to be upset about little things anymore after you've seen what we've seen here in this hospital. I am convicted that I need to live in the moment and not always be anxious to get out of this season of life. There are many precious moments and blessings in this crazy life. We have our daughter, who is alive and vibrant and joyful. And no matter how hard things get, at least we have hope that Maggie will have a normal and healthy life. Not many parents here have that hope.

P..S. Maggie has been doing so well that we are planning on going home tomorrow if she does well through the night. It makes me nervous but I know we need to bring her home into her own environment. Thank you for your prayers.

Wednesday, May 26, 2010


Thank you for all your prayers. I felt very desperate yesterday, so frustrated that Maggie was doing worse than any other day since we've been at the hospital. Yesterday afternoon I was venting to a friend about it over the phone and heard Maggie gagging in her bed. I run and look down into the crib and, yep, she had pulled the tube out again. But not all the way out  - it was about halfway in, dangling somewhere in her throat and making her choke and gag. I tugged it to get the rest out and told Maggie that she better start eating or else they would have to put it back in. Well she listened! She took the next bottle in three minutes! And then every other bottle through the night. Go Mags!

But this morning at 8 am (which is usually her worst feeding) she was back to refusing it. Like always the therapist tried many techniques to get her started - darkness, swaddling, sidelining her - the usual. But Maggie started getting very angry (she senses we are pressuring her to eat) and so I took her in my arms and started gently patting her as I walked around the dark room. After a few minutes, I sat back down and started trying again. I held her closely to me and breathed deeply so she could feel the rhythmic nature of my chest going in and out. But, as usual, she just spit it out,  pushed the bottle away, and started arching her back as if to get away from it.

Usually at this point there is no hope. We have to be so careful not to push the bottle in her mouth when she doesn't want it because she will develop a major oral aversion (I have met toddlers here who have to be completely tube fed because they won't let anything touch their mouths so we have to be so careful not to let her develop negative associations with the nipple). Anyway, I stayed very calm and just sat with her in the sidelined feeding position and patted her again. She started sucking her hands, which is a good self-soothing thing for babies. So I stealthily stuck the bottle in between the fingers she was sucking in her mouth, hoping she wouldn't mind and just move her fingers and let the bottle stay in. She jolted a few times but I didn't push her. The third time I tried this she immediately started sucking like it was no biggie and took the whole bottle! A HUGE BREAKTHROUGH. I have never been able to do this in the two months since this feeding issue began. I was soooo happy! She has taken every feeding since 8 am. If she continues to do well we can go home soon...

I am so thankful that God heard our prayers and allowed her to start eating again. Yesterday I felt hopeless and today I feel like we might just be able to do this! It just requires a ton of patience, work, and quiet! And I have learned that Maggie is going to have setbacks, and so I cannot be devastated if she gets sick again and we have to start all over. She can eat and that's what I have to remember.

Tuesday, May 25, 2010


Sitting in a hospital room all day is just not fun. Maggie requires darkness when she sleeps and darkness when she eats. Since she is a good napper and her feeding sessions last 30 minutes each it's pretty much a dark cave in here all day long. I have some borrowed books from
a friend and I guess I could be doing lunges across the room for some exercise, but I just can't muster up the energy to do anything. Those who know me know I can't take naps so I sit around most of the day browsing my iPhone or watching the news on mute. Shouldn't I be using this time to do something productive or learn something new? I'm rather disgusted with my apathy. All I can think about is how I want Maggie to eat so we can go home.

As for Maggie...the Ng tube is in and it has made her more congested unfortunately. So now that breathing is harder for her (because of tube blocking one nostril and the other nostril clogged up) her eating has gotten worse. You know it's going to be a bad eating day when she won't even put the bottle in her mouth at 8am, which is what she did this morning. It's just a seemingly vicious cycle of setbacks and frustrations.

The therapist said it might take a while before she gets back to where she was. This, of course, made me want to scream. I know she will eventually get better but I just don't have "a while," I wanted to say. I have one day and then I am going to just meltdown and someone is going to have to peel me off the floor and take me to probably the only other hospital one of our family members hadn't been to in the past six months!

Okay, I know that's the wrong attitude but this is how I feel about 70% of the time. Sometimes I wonder if the reason there are so many children in this hospital that never have a family member with them is because it's just too hard for the parents to watch their child struggle and suffer and feel so helpless and useless? As one nurse put it, "some parents take this time as a vacation from caring for their sick child." It's rather disgusting that any parent would do that, but you know what, how can I judge? I have no earthly idea what another parent has been through or is facing. Maggie probably has the most minor problems in this hospital and I can barely make it through each day. I have 100% conviction that couldn't make it through each day if I didn't have the the hope and the strength that comes from knowing Jesus. I wonder all of the time how other parents are coping, if at all...

I guess today is a day where the indefinites ( "a while," "soon," "most likely," "probably") are just too much for me. I need a date, a time, a goal to be met- something that will tell me that we will someday have some normalcy or calmess or ease in our lives.

Okay sorry for the rambling, back to watching talking heads report the same "breaking news" stories every 15 minutes...

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Monday, May 24, 2010

Losing It

This weekend was the most frustrating weekend we have had with Maggie yet. She is no longer sick, which we thank God for, but back to having no interest in eating. She might suck on the bottle for a few minutes, but quickly loses focus and, before you know it, she is batting the bottle around like a punching bag, trying to get it away from her mouth. (Her dexterity is truly amazing).

Justin was at the hospital all day Saturday and by 5 pm he was asking for me or my mom to please come relieve him because he just couldn't deal with the stress and frustration of her refusing to eat. Sunday I stayed with Maggie all day and by 5 pm I made that same exact phone call for help. My mom was still in town last night so she came to my rescue and I left the hospital in tears and just sobbed (loudly) all the way home. Thankfully my windows are tinted because it was not a pretty breakdown.
We have seen Maggie make so much progress, and to see her now back where she was before we entered the hospital is so incredibly discouraging. I don't know why I thought we were immune from the typical "two step forward-one step back" progress of premature babies. We obviously are not.

Right now we feel she needs the ng tube again. Not because she's starving or dehydrated, but because last time it worked to well to get her back on a routine of eating every three hours. So we'll see. I hate that she has to have another one and pray it is only is for a short time. With all these setbacks her homecoming date is up in the air again. Thankfully Mary Lawrence is out our stressful and disjointed household for a while as she is being loved on by her grandparents and cousins in Arkansas,. It makes me sad to think that she has to go away from here to get the attention she needs, but it's the truth for now.  I didn't want her to go as I long for our family to be together, but I know it is the right thing for everyone.

Saturday, May 22, 2010

Update on Maggie

The swab test came back negative for all the "bad" viruses like RSV which is great. Her fever is gone, too. So we are so thankful she seems to be getting better. However, she is so congested and when she can't breathe well, it makes eating all the more frustrating for her. So she's not taking all of her bottles and has lost weight today so that's all discouraging. So every time we sit down to feed her we are so incredibly stressed because we know no eating = feeding tube. And we all know Maggie can easily sense stress, and that itself increases our stress! It is just a very stressful situation all around! I am sure it sounds so dumb to people reading this; I mean, really, how hard could it be to feed a baby? But trust me, this is by far one of the most stressful things in my life. I am surprised either one of us has any hair because all we want to do is pull it out.

As for the feeding tube, the doctor kind of left it up to us as to what to do about it for now. On one hand, we know a tube will only make her breathing/eating worse and might introduce infection. On the other hand, we don't want her to lose her hungry/full routine nor do we want her to get dehydrated. For now we have decided to hold off, at least through the weekend, since she is having wet diapers and also because we think we should push back on the tube as long as we can.

This experience has made me realize how quickly Maggie can revert back to her old ways and has me wondering what the heck I am going to do when she does this at home. I can't worry about that now, though. Got to feed her again soon...

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Friday, May 21, 2010

Poor Maggie!

I left the hospital last night feeling so upbeat, finally letting myself feel excited that we might just be getting over this hump. I came back this morning to find Maggie not eating and having a temperature of 101. I am reminded once again how quickly things can change on this preemie journey and, frankly, I am angry about it.

I knew putting Maggie back in the hospital put her at risk for more viruses and germs. But I have santitzed her room with Lysol and clorox wipes and even brought my own swiffer wet jet from home bc it grosses me out that they use the same dirty water to clean the floors. I also made a big sign on her bed to "wash hands before touching me," and I have even have had to remind techs and nurses who didn't "foam in and out" (with the antibacterial foam) just how important it was to keep Maggie well. I know I can't protect her from every germ but I do wonder how many people I didn't catch not using the foam and if I could have done anything else? She is so sick and pitiful it makes me cry.

They are going to have to put the feeding tube back in her nose if she doesnt take the next bottle because they don't want her to get dehydrated. But putting a tube in when she is sick can increase chance of a secondary bacterial infection so that's upsetting, too.

I am so discouraged. Primarily I am worried about what kind of virus she has and praying it is not too bad. Secondly, I am worried about how this is going to affect her feeding and where this puts us after she is well.

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Thursday, May 20, 2010

One more week!

Got news today that Maggie can go home next Wednesday if all continues to go well. She has been taking all her bottles and gaining weight!

I am so excited but of course it also makes me nervous to bring her home, back to a normal environment with sounds, noises, distractions that she is not used to. I keep telling the therapist that feeding in a quiet, darkened room every three hours is not our reality. She responded with, "if you don't want your daughter to have a g-tube, then this is what you have to do." Okay then! We are so happy that she is eating, though, we don't care what we have to do to accomplish that.

I have to say, there has been nothing more satisfying than putting her on the scale each day and watching the numbers creep up. Of course she still struggles sometimes, but I am having more success at getting her to accept it when she wants to refuse it. Thank you for your continued prayers. She needs to keep doing this well in order to go home so we are praying for her to keep eating and thriving.

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Full Circle Moment

Every day Justin and I both  insist on being the one to spend the night with Maggie at the hospital since it's nearly impossible to get any rest when you are sleeping on a hot, plastic hospital mattress and waking every three hours to feed Maggie. He wants to stay so I can be at home with Mary Lawrence more and, he says, he's already up all night working anyway so he might as well be up with Maggie. I insist on staying so he can get a stretch of good sleep after he finishes working at two or three am.

Last night I won the argument and stayed with Maggie and I'm glad I did. I've said before that the hospital brings back awful memories for me, memories I want to wash out of my brain. Six months after leaving the hospital I often still wake in the middle of the night in a panic - checking to see if I am massively bleeding again and then trying so hard to be perfectly still to see if I can feel that reassuring movement of the baby in my stomach.  Last night I woke up in a sweat with that same fear hovering over me. I heard a screaming down the hallway and running just like I used to on the antepartum floor. I froze.

But then I heard soft breathing next to my bed. And I look over next to me and there is a metal baby bed, and in it is my baby, who is alive and well and sleeping as peacefully as any baby ever has slept. It was the most surreal moment of my life. How many hours and weeks did I llie in the hospital bed praying for her life and longing so badly for her to be here with me? How many times did I pray that God would heal me and save her? How many times did I pray for those darn "leaves"?! And begged to one day be able to hear that precious sound of breathing like I did next to me last night?

I am still in awe of what God has done in our lives. He has been so good to us.

Wednesday, May 19, 2010


I am posting this devotion not to make it seem like I am so wise to be reading 19th century English preachers' writings all the time, because I'm not. I've downloaded several Bible and devotional apps to help me be able to read wherever I am - therapy, hospital or home. Yet even with my phone constantly in my hand or clipped on to my hip (dorky, I know, but I was missing too many calls from doctors!), I still neglect to read God's word on a daily basis - even though I know it is the sword I need against these daily battles of discouragement and frustration and sadness. Anyways I did read this in bed last night and thought I would share these uplifting words with those friends who are also suffering or struggling out there right now...

"For the moment all discipline seems painful rather than pleasant, but later it yields the pleasing fruit of righteousness to those who have been trained by it."
Hebrews 12:11

How happy are tried Christians, afterwards. No calm more deep than that which succeeds a storm. Who has not rejoiced in clear shinings after rain? Victorious banquets are for well-exercised soldiers. After killing the lion we eat the honey; after climbing the Hill Difficulty, we sit down in the arbour to rest; after traversing the Valley of Humiliation, after fighting with Apollyon, the shining one appears, with the healing branch from the tree of life. Our sorrows, like the passing keels of the vessels upon the sea, leave a silver line of holy light behind them afterwards. It is peace, sweet, deep peace, which follows the horrible turmoil which once reigned in our tormented, guilty souls. See, then, the happy estate of a Christian! He has his best things last, and he therefore in this world receives his worst things first. But even his worst things are afterward good things, harsh ploughings yielding joyful harvests. Even now he grows rich by his losses, he rises by his falls, he lives by dying, and becomes full by being emptied; if, then, his grievous afflictions yield him so much peaceable fruit in this life, what shall be the full vintage of joy afterwards in heaven? If his dark nights are as bright as the world's days, what shall his days be? If even his starlight is more splendid than the sun, what must his sunlight be? If he can sing in a dungeon, how sweetly will he sing in heaven! If he can praise the Lord in the fires, how will he extol him before the eternal throne! If evil be good to him now, what will the overflowing goodness of God be to him then? Oh, blessed afterward! Who would not be a Christian? Who would not bear the present cross for the crown which cometh afterwards? But herein is work for patience, for the rest is not for to-day, nor the triumph for the present, but afterward. Wait, O soul, and let patience have her perfect work.

-from the Morning and Evening Devotional, by Charles Spurgeon.

Monday, May 17, 2010


Mary Lawrence's procedure went as well as it could have. She was very traumatized after two days of a pre-clean out (no food/drink and lots of miralax and suppositories). She was so scared she wouldn't even let the nurses touch her.They finally gave her something to calm her and let me carry her back to the OR. I held the strawberry-flavored gas mask on her while she fell asleep. I know it wasn't a serious procedure but it still was so hard to leave that OR with my little baby on that cold, hard operating table!

Mary Lawrence is all cleared of all that blockage so hopefully her tummy will be feeling better again soon. She is probably still going to want to "hold" her bowel movements so we will have to be a strict regimen to keep her from getting constipated again so we never have to relive this. It has been so hard but I am so thankful one child is out of the hospital and praying that the other will soon be home too!

Thank you for praying for Mary Lawrence. She is a brave girl!

Sunday, May 16, 2010

Doing Well So Far...

Maggie never had her feeding tube put back in cause she's been eating all of her bottles - go Maggie! Each day they are slowly  increasing her required volume so the pressure is on to get her to keep finishing them.

We haven't changed much about how we are feeding her - except that instead of swaddling her with her arms down (like a newborn) we leave her arms bent up so her hands are around her face and she can self -soothe by sucking on her fingers or clasping her hands together. I think most of our success is due to being in a quiet, darkened room with little distraction. Sure the nurses and techs and therapists are all barging in throughout the day like they did when I was on bed rest and never really got to "rest." We have gotten very frustrated a few times as we feel like half of the stress we are dealing with is trying to protect Maggie from the around the clock monitoring and testing that gets her off her routine. We say "no" when people want to wake her up to give her meds or treatments and "no more" when they try  four times to get a urine sample without success and want to keep trying. She's just a baby; she needs a break.

Overall, though, Maggie is just as joyful as ever. She grins at every stranger that walks in her door. I wish I could be so joyful! Mary Lawrence has acclimated herself well here, too. Just like she did last Fall, as soon as she walks in the room she kicks her shoes off and makes herself right at home. I am keeping several of her toys in the room for her to  play with and we also visit the hospital's playrooms and a playground.

Justin and I are just trying to get through each day an hour at a time. As Justin said the other day, we have never been under so much psychological stress in our entire lives as we have been during this past year. And it just seems to never end!  But we know this hospital stay is just temporary and our prayer is that this intensive therapy will prevent Maggie from having to get a g-tube, and that itself will save us a lot of stress in the coming years.

Mary Lawrence will be admitted tomorrow morning to another hospital for her procedure. Praying for her not to be frightened and that I can explain to her in terms that she will understand why we are making her go through this. I also am praying that the procedure goes perfectly and she can go home tomorrow night feeling a million times better.

Friday, May 14, 2010

Back to Square One

Okay, not really. it just feels that way being back in a hospital room that looks just like the one I was in on bed rest - with the same bed, same remote control, same dinner trays. I did not have deja vu yesterday after we checked in to the hospital, I had a panic attack! Seeing all those familiar things brought back such horrible memories of my hospital days. And having that feeling again of being trapped and under someone else's control was just too much. It's hard when you are the patient and a nurse or doctor tells you want you can and can't do; but it's even harder when you're the parent of a patient.

Maggie got her feeding tube yesterday. Watching the nurse put the tube in was the hardest thing I've seen a nurse do to her. She was gagging and choking and then for the next few hours screamed uncontrollably and kept arching her back as to try and get away from that irrititating feeling of something going down the back of her throat. There is nothing more heartbreaking than when your children look up at you in desperation as if to say, "help me." But thankfully by last night she had calmed down and was acting like herself again.

Also yesterday the Speech/Feeding Therapist came up with a plan for Maggie. The plan is to feed her eight times a day, every three hours (again, back to square one!) and whatever she doesn't take in her bottle we will put through the tube. The idea is that she will get back to feeling what it's like to be full again and will want to repeat that feeling by sucking longer and staying more focused on the bottle. But if she can't finish it, we will not stress her out by pressuring her to take more and will instead give her the rest through the tube. The therapist will feed her three times a day and us the rest. Hopefully all those things will relieve some of everyone's recent stress and less stress has to have some effect on Maggie hopefully!

The therapist also watched me feed her yesterday. Maggie did great for about the first ounce and then, as usual, she began getting distracted and sloppy and then just stopped completely. She told me that I was already doing everything they would have taught me in the first week (thanks to a therapist friend who came to the house and worked with us!) so that was good and bad to hear. Bad because it means that we are already doing all the proper techniques at home and that oviously hadn't made much of a difference. Afterward the therapist flatly told me that her issue was a sensory one and when feeding problems are a result of sensory issues then they can be much harder to overcome. Sometimes it takes years. Therefore, a G-tube is a real possibility as an NG tube (the one she has in her nose now) can't stay in more than a month or two. Of course I was very discouraged hearing this and cried a lot the rest of the day, second guessing myself if we made the right decision. I mean, what is the point in being here if there is not much hope in solving this problem immediately?

Today , however, I feel better about our decision after seeing that being on a strict schedule with not much distraction really has benefited her. She has had two full bottles and nearly finished another one. In between feeding and napping, Maggie willalso have physical and occupational therapy and some play time. Mary Lawrence was up here this morning and you can tell it just makes Maggie so happy to see her. And it makes me happy to see her happy!

Maggie has "beaten the odds" before and so I am going to try not to be discouraged about the prognosis. Even though most babies with these sensory-feeding issues struggle with them for years, that doesn't mean Maggie has to. I am still going to pray that she is able to eat completely on her own by the time we leave here, with no tubes whatsoever. And also am praying that she is assigned skilled nurses and therapists who come to love Maggie and take wondeful care of her. I feel like a prayer hog asking for so many prayers but I would appreciate continued prayers for Maggie:)

Gotta go now - less than 24 hours and Maggie has already ripped her tube out. I don't think I can watch them put it back in...

Wednesday, May 12, 2010

Recent Photos

                           At the hospital before her last x Ray - surprisingly she's not afraid of clowns.

My little baby had a sleep study done last night-they hooked up 30 different electrodes to her head and she really didn't mind at all. She really is the happiest baby I've ever known.

Mary Lawrence and I went on a picnic for lunch yesterday. It's her favorite thing to do and I wanted to spend some one-on-one time with her before chaos breaks out tomorrow.

And the whole family went out for Mexican - first time ever since Maggie was born!I wanted to do something normal before Maggie was admitted. I don't know why I am being so sentimental but I am!

Maggie will be admitted tomorrow and Mary Lawrence on Monday. I am sure I will cry a lot over the next few weeks not having my girls at home together but I have hope that we will all be happy and healthy and together soon.

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Tuesday, May 11, 2010


Based on a variety of factors, we have decided to do the in patient program. I know it is the right thing. Being there 24/7 will allow these highly trained therapists to get her on a routine. Right now that's been impossible because we are constantly driving back and forth all day. And that's really hard on ML, too. I am hoping this intense therapy will jumpstart her eating again and she can come home without any tubes in 3-4 weeks. We think she will be admitted in a few days.

This has all happened so fast and Justin and I both feel like our heads our spinning. Despite knowing this is the best thing for everyone, I have this thickness in my chest and knots in my stomach. I feel like our life is rolling back up to where we were four months ago. I am fearful about handing my daughter over to be cared for my complete strangers. I am so worried about how this is going to affect Mary Lawrence. Praying for guidance on what to tell her about this whole thing. The horrible thing is that ML is going to have to be hospitalized, too, and get a nose tube as well in order to flush out her system. I don't want her to think we may decide to ship her out, too.

This whole thing is just a nightmare. I just want to lay down and sob but there is no time! I know we will get through this. It just seems that normalcy is so far off.

We keep praying for God to protect these girls, make them healthy, calm their fears, and make His presence known like He did before. Most of all, we ask for strength as we become a fragmented family once again.

Sunday, May 9, 2010

Prayer Requests

I feel very overwhelmed right now with the decisions we have to make about Maggie and ask for your prayers. We met with her doctor on Friday and talked extensively about the issue at hand and the recommendations of the Feeding Therapist. We have made the decision to try the NG tube (feeding tube that goes down her nose) temporarily. We are  still going to feed Maggie through a bottle but whatever she doesn't eat in the bottle we will put through the tube, that way she won't be stressed out by me pressuring her to take more. Hopefully that will buy us some time as we start intensive feeding therapy soon, which will try to get her to take a whole bottle without being distracted. The doctor has given us 4-8 weeks to try the NG tube and feeding therapy. If she is still not progressing at this point, then he wants to do the more permanent G-tube, which requires surgery and she will have for a more extended period. Anywhere from 9 months to three years.

Of course all weekend I have been in tears. I keep trying to figure out how we got here, what we did wrong, what else we can try - anything to avoid the G-tube. I feel sick to my stomach and sad at the same time. I feel so helpless and so frustrated. Praying that she would just start eating again so we didn't have to go through this. We have several decisions to make right now and so I humbly ask for prayer for these things:

1. In patient versus out patient feeding therapy treatment- Initially I refused the possibility of a month-long hospital stay for Maggie while she undergoes treatment. Mary Lawrence just doesn't need any more turmoil in her life and having her baby sister disappear and her mom at the hospital all day just wouldn't be good. But the more I think about it, I wonder if Maggie would get more intense therapy, more often if she was a patient and if that would help her avoid a G-tube, wouldn't that help our family more in the long term? Driving back and forth every day for feeding, OT, and PT therapy prevents us from getting Maggie on any kind of routine and that can't help her eating I think. And I can't take Mary Lawrence to feeding therapy like I can take her to the other therapies so I have to figure out what to do with her. I am torn and praying that God would lead us in the direction He would have us go.

2. Mary Lawrence - her second X ray shockingly showed no change whatsoever to her blockage. She is still uncomfortable and suffering. And all I have been thinking about (besides Maggie) is how hard it is going to be to get her not to be scared to go to the bathroom. I wake up every morning at 3 am and just start browsing the Internet on my iPhone, doing research about her issue and it scares me how sometimes is takes years to resolve it and get them potty trained. And if Maggie has a tube or is hospitalized, what is that going to do to her mentally and emotionally?

3. Extra help - As much as I don't want to admit it, I realize that we need it. I have someone who comes a few times a week to clean and help with Mary Lawrence, but I need someone who can feed Maggie and take care of her while I spend time with Mary Lawrence and give me a break from always being the one to try and get her to eat. I am so tired and overwhelmed I am not sure how to find that person, how much I want them, or what. I am thinking maybe a few afternoons or few mornings a week. Obviously they would need to be qualified enough to handle Maggie, hopefully with some kind of nursing background. I know they have home health care, too, but I am not sure we qualify for that. And, again, I want to find the right person for our family.

Thinking of all the wonderful moms on Mother's Day.

Wednesday, May 5, 2010

Six Months Old

Yesterday was Maggie's six month birthday. We did nothing in particular to celebrate, which I felt bad about, but we did make it through another day. It sure doesn't seem like it's been six months since she was born. And she sure doesn't look like a six month old!

Anyways, we've been through seven of the ten appointments we will have this week and all are still fighting colds. I say this not to invite pity but to explain why I might not have responded to an email or text or phone call. I love getting all of them but I really am so brain dead that I just know I am not being a good friend right now to those who have been so good to me. And I am so sorry for that. One day, I keep telling myself, I will be able to serve others like they have served me.

To sum up, Maggie is listed right now in her chart as "failure to thrive." When the therapist read that to me today I was taken aback because no one has said that to me yet. To me she is thriving, considering where she came from. But compared to all other standards I guess she is not. And even though I know it is not my fault, as a mother to hear that of course all your "what ifs" come into play. The good news is that it's not that Maggie can't eat or doesn't know how to eat. She is just choosing not to, and most likely because something is hurting or bothering her. Over the past two months of us trying to get her to eat when she didn't want to, she has slowly developed an aversion to eating. On top of that, she is a very alert baby and anything can distract her (today the therapist put a cloth over her eyes to see if that would help her eat). NICU babies commonly develop sensory issues - they are touched before their skin is supposed to be touched, they listen to loud sounds and beeping and alarms way before their ears are supposed to hear - and so it is no surprise that Maggie has some sensory issues as well.

So in the coming weeks we will have to make some big decisions about how to best treat this problem. Some options are in-patient hospital stay, out patient intensive treatment with a feeding tube, or some other less drastic options if in the next few weeks she starts to eat and grow. We have three different doctors weighing in and a feeding therapist, which is good, but I think the ultimate decision falls on us. Praying for clarity and wisdom as we move forward because we want to do the best thing for Mags in the long run.

On another front, Mary Lawrence is still having pain so we are having another X ray tomorrow. Hopefully it won't be as scary for her. I just keep praying that these girls will feel better soon.

I have been told several times over the past few days that this stage we are in is only temporary and won't last forever. Although it doesn't seem like it right now, I know that or at least have that hope. And this blog is supposed to be about hope during trials so I will continue to have hope that the Lord God is working this all out for our good. Maybe I should have named Maggie "Hope" instead:)

Sunday, May 2, 2010

Please, Maggie, just eat....

Yesterday was sterilization day at our house. You know, when you throw open all the windows in your house and tie one of your husbands' t-shirts around your mouth and nose like a convenience store burglar so you clean up the "remnants" of your child's illness. Everyone has been sick at out house with the respiratory virus which is enough to make you want to douse your counter tops and doorknobs with Clorox. But on top of that we finally started seeing some "results" from Mary Lawrence's cleaning out regimen. Let me just say, it was the most awful thing I've ever seen. The past three nights she has been up all night crying, "Momma, please make it feel better!" Heart-breaking. I didn't know what to do except hold her and rub her tummy and tell her it would feel better soon. We did pray and ask God to help her tummy and it will be a good thing for her to see (hopefully) that He does answer our prayers.  I will say she acts so much peppier today and her once protruding, hard stomach is now a little softer, thank goodness.Overall I think Mary Lawrence is on the mend, although I'm sure she's so traumatized she won't be potty trained until she's ten!

Maggie is a different story. She went practically all day Friday without eating  and scared me enough that I was ready to take her to the ER because she was also screaming uncontrollably and her temperature was low. But before we went to the ER, Justin fed her and he got her to take three ounces. And Maggie calmed down and after warming her up with a bunch of blankets we got her to go to sleep. (I think that she has the same respiratory virus we all have had but it just is affecting her differently.)

The truth is she will eat so much better for Justin. He did five feedings on Saturday and she ate more than she has in six weeks! Frankly, it made me so happy and so crazy at the same time. Why can't I get her to eat like that?!! She can supposedly sense my stress, but I don't know how. I am so calm, or at least I think I am. But the doctor said that this is common among problem feeders. He said we need to break the cycle that she is in and if that means letting Daddy feed her as much as possible, then so be it.  But let's face it. He has to go to work. And the poor guy already has so much pressure on him. He doesn't need to feel like if he doesn't feed her she is going to starve! I am the mother, I should be able to feed my own baby.

It has been so stressful for us both to see Maggie take such a huge step back. It is frightening when a baby refuses to eat. And we have done everything we know how to do. For example, Maggie cannot have any distractions whatsoever while she eats so I to make her room pitch black dark and attempt to keep ML out. She also eats better when she is half-asleep. So we are attempting to carefully remove her from the crib and carry her to the rocking chair without waking her up so we can stick the bottle in her mouth before she opens her eyes and is distracted by something in the room. If she does eat, you can't stop to burp her because she loses focus. If she starts choking or coughing and the bottle comes out, it's over. No matter how long you sit there trying to get her to latch on again, it never happens. We've learned the milk has to be extremely warm for her to even think about swallowing it. We've also tried spacing out her feedings and putting them closer together but neither produced better results. And we have gone back to feeding her every three hours, four hours at night,which is frustrating because she would very well sleep through the night. We do all of these things with minimal success, but minimal is better than nothing, so we keep doing them.

As the doctor said, this feeding issue is the last big hurdle for Maggie's preemie journey. And I have to keep reminding myself that she has done amazingly well in all other areas. She is hitting all of milestones and is very social which is a great thing (although it definitely hinders her eating to the point that I can't make eye contact with her while she is eating because she will grin real big and the bottle will come out  - cute, but maddening!). Of course, we know things could be so much worse. And so we try to keep perspective of what all we have been through and how far we have come to encourage ourselves to keep going.  I keep pressing myself to read back over my blog, but for some reason I just can't. It's still too hard to relive all that right now, my mind is too tired to think about it, although one day I will.

I really don't want her to have a tube in her stomach to feed her, which is what will happen if she doesn't start eating asap.  And so I am praying that on Wednesday at our feeding therapy appointment they will have some ingenious tips to get this baby to eat. Nothing would ease our current stress more than seeing this child gulp down a bunch of milk and gain a few ounces! Thanks as always for those keeping her in your prayers.

P.S. My grandmother gave me great advice after I told her about this weekend. She said next time you have to clean up after your child has been sick, then put a little dab of Vick's salve under your nose and you will be able to clena up without gagging to death. Genius.