Darkness

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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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.

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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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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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.

Afterward

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.

Update

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!

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.

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...

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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Decision

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.

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.

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:)

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.

I need thee

ML has had a fever now for several days. In fact, I can't remember ever seeing her so sick. Thankfully Maggie does not have the same virus; she's just really congested. Despite my efforts to try and keep them separated, I had to take them to their GI follow up yesterday because Mary Lawrence's stomach issues have not resolved.

So off we went to the doctor yesterday, lysol and purel in tow. Mary Lawrence was traumatized by the doctor's visit and then she had to have an X ray of her stomach. Those X ray rooms at the hospital are so cold and dark and scary with a huge robot-looking machine arched over a bare table. It took three of us to hold her down on the table. I will never forget this as long as I live. I kept yelling over her screams that it was just a camera and it was just going to take a picture of her tummy so the doctor could help us. She was shaking and her lips were shaking and tears were streaming down her face as she grinned her teeth and cried, "Cheese" as she looked up to the machine. It was the saddest, cutest thing I have ever seen.

The doctor confirmed with the X Ray that there was blockage and we have a three day regimen to try and get it all out before they try anything else. He said she was going to be cramping and pain during that time so not to leave the house much. So here we are facing another self-imposed isolation. We were up all night with fever, congestion, cough, chills, and now also the stomach cramping. During all of this I am trying to teach her to pray when she is scared or hurting and ask God for help. That He loves her and is right here with her at all times. I keep telling her it is going to get better soon but I know that concept of "soon" is difficult for her to understand.

The whole thing just breaks my heart and I am scared of what the root cause of all of this is. The doctor said he may do some testing to see if she has any underlying issues. I pray that she doesn't and I have been praying that she does not have any long term complications from this. Because in the end, it is partially my fault for not attending to this issue earlier and pushing her doctor to take it more seriously. I feel so guilty about that and that is why I just hope we can resolve this and it will be the end of GI issues.

On to Maggie...I started crying in the office when the nurse weighed her and told me she lost weight over the past week. I just don't understand it. If someone will just please tell me what to do to get her to eat I will do it! But no one knows and it is just a process of elimination as most things are in diagnostics. We will get to start feeding therapy next week.

I am person that likes to prioritize and cross things off my check list. And I keep telling myself that if I can just get one child well and healthy then I can focus on the other one. I even asked the doctor in all seriousness which child I should be more worried about. He said Maggie. But when Maggie is happy as she can be and Mary Lawrence is moaning in pain, it's hard to grasp that.

The thing is, I can't neglect one for the other. They both need tons of attention and care right now. And I just don't feel like I can give them both what they need at 100%. Physically and mentally I am weak. But I am continually reminded by those around me that the Lord is with me and He is strong. And I don't mean to sound cliche when I say stuff like this, but I really mean it. After a rough few weeks of feeling sorry for myself and feeling out of control, yesterday I finally realized that for the thousandth time. I need to call out to Him when I feel this way, and pray without ceasing for my children. I need to read Scripture that reminds me that He is my strength and my shield and my portion. I need to use this experience to show my children how to go to humbly go to Him in prayer and how to praise Him for answered prayer. I need Thee, Lord, I need Thee, every hour I need Thee...

Sick!

As I was changing Maggie this morning I found myself staring at her for a long time, thinking something was just not quite right about the way she looked. Finally it came to me. . . she was wearing Mary Lawrence's size 4T pull up.

I got a good laugh at myself for that, but it didn't last long as Maggie started coughing and wheezing and I realized she was not well. Yesterday ML came down with a 102 fever and has had one ever since, coughing and sneezing and feeling awful. All day yesterday I tried to keep them separated but my efforts were obviously  futile. Right now Maggie doesn't have a fever but the congestion is getting worse and she is coughing. The doctor wants us to increase her breathing treatments to every four hours and if she starts having trouble breathing we have to take her straight to the ER.

Right now I have a minute to sit down because I got them both to sleep. One of us is taking ML to the pediatrician tonight. I don't' feel super worried at this point because Maggie doesn't have a fever and acts okay which I am so thankful for. But I have to remind myself that her lungs are weaker than other babies her age and her condition can worsen eerily fast. She has been sick before with a cold but it never went down into her chest. Praying for both my little ones who are so pitiful right now.

This picture made my day!

(Doing some of the OT exercises at home and putting her in a laundry basket helps her neck muscles)

Lessons Learned

I wasn't going to discuss Mary Lawrence's current problem because I can hear the sheer horror in her voice as as she reads this in about 10 years when she's a teenager. But I decided that maybe our experience might help some other parents of toddlers out there avoid this conundrum so here it goes....

Around the first of the year Mary Lawrence started getting really constipated. It got so bad that she was only going every 4-5 days and when she would it was so awful and painful for her. I kept thinking more fiber would solve the problem and I overloaded her with fiber in everything she ate, fiber gummies, tons of fruits and vegetables. But it didn't help. At the time I didn't know which way was up or down because I was dealing with Maggie at home on oxygen and, well, it was rough time. I was also trying to potty train Mary Lawrence and getting so frustrated because she just couldn't get it (now we know why).

Over the next few months, it didn't get any better. We tried laxatives, suppositories, yogurt, and enemas to no avail but just could not get her "regular".  Several calls to the nurse and their advice unfortunately yielded no good results. We finally took her to the doctor in March and have been three times in the past month. We were shocked that first visit when he told us that her constipation had led her to be scared to go and therefore she was trying not to go. He said that children who go through traumatic experiences (mother hospitalized, sister in NICU - check!) often feel they need to control something in their lives. And the only two things children can control are eating and pooping. (I told him I was unfortunate to be experiencing both of those things right now). He told us that many toddler go through this and the worst thing we could do is potty train right now because she will associate it with bad experiences and be in therapy until she's ten. Great.

So the doctor told us to give her miralax every day. He said we would needed to give her just enough to make her bowel  movements soft enough that she won't hurt anymore and be terrified to go. He said that after a few months of good bowel movements she would be ready to potty train. Well, the miralax made her go more often - she'been going about 8 to 10 times a day and bursting out into tears every time - but she didn't feel much better. About three weeks ago she started complainig her tummy hurt all of the time. She was very lethargic and would only want to get on the couch and watch t.v. and hold her tummy and wince in pain. She also began throwing up every other day or so. "Momma, I spilled," she would cry out in the middle of the night.

Back to the doctor we went. He immediately referred us to a GI doctor. But, of course, we couldn't get in for over a week (and it was not the same doctor we had already scheduled for Maggie). Her condition got so bad last weekend that I seriously wanted to take her to the ER, especially after looking up on the web what all her stomach pain could mean. But Justin said no, that would only traumatize her even more. So all weekend I just cried and prayed and felt so guilty for neglecting this poor little child and not getting her the proper attention sooner.

Anyway, Maggie's GI appointment was at 10:30 this past Wednesday. Even though I called every day asking if this same doctor could also see Mary Lawrence since we were already going to be there, they kept telling me no, that he had a three month waiting list and he was only seeing Maggie on his surgery day as a favor to her doctor. But I said a prayer that maybe, just maybe he would take pity on Mary Lawrence and help her anyway.

Well, he did! I think after telling him all of Maggie's medical history - the lack of fluid, the bed rest, the placental abruption- he was so moved by her story and all we have been through. He commented that he couldn't believe that not only can she breathe but also that her arms and legs formed normally without any fluid. He said, "you know, they usually don't let women continue pregnancies lihe that." It was so sweet - he said it was the most inspiring story he had ever heard. And so he obviously had compassion on us. So during our discussion about Maggie, when Mary Lawrence started grunting in pain and grabbing her stomach and collasped to the floor like she often does, he scooped her up and began asking me a ton of questions about her.  I told him I didn't know what child I should be more worried about - one child was practically starving and the other child's bowel system could be seriously messed up.

He was so kind and gentle to both of my children as he examined them. And he gave me game plans for both of them. He is going to fit Mary Lawrence in next week to check her more thoroughly and check Maggie's weight to see if she is gaining. I just wanted to give him a huge hug! I really started crying when we got back to the car after our 3 hour appointment because I finally felt like ML was getting the proper care she needed.

So here is the game plan for both of them:

Maggie: he doesn't think anything is seriously wrong with her organs. Her reflux is awful and so he prescribed an antibiotic to help in addition to her prevacid which is sort of a new treatment for severe reflux (the pharmacist had never even heard of it). He also thinks she needs to stay on this really pure, broken down formula because she probably has a milk protein allergy. While there I met with his dietitian and his speech (feeding) therapist and will go back there for more therapy since he can get us in sooner. He will monitor her closely but said that if babies don't grow at the proper rate their brains don't develop properly). So if he doesn't see good results, she will  need a GTube. But right now that's not a serious risk.

Mary Lawrence: She has an obstruction of compacted bowel that is causing pain and vomiting and it needs to come out. If not, it can very serious. He told us to give her about 8 times as much miralax as we are giving her in order to get her all "cleared out.' So basically the next week is going to be horrific for her. I have been trying to prepare her for what's to come and I know she probably will be traumatized even more. But the doctor says if the compacted stuff doesn't come out they will have to do more invasive measures. I didn't ask what that meant.

So if you have seen us out recently or in the near future and wonder why Mary Lawrence has such odd behavior, now you know. I am trying to keep it together, too. I told Justin that I feel like I constantly smell like poo poo, and my house smells like it, and at least twice a day I find it somewhere on my clothes or body. Hopefully we can get this resolved soon and I just pray that the poor baby will not be traumatized to go to the bathroom for the rest of her life.

So the lesson here is: don't ignore a minor issue as it can quickly deteriorate, don't hope that it will go away on it's own, don't neglect your older children when you bring home a new baby, don't pressure potty training when they are not ready, and don't trust that your pediatrician's recommendations for solving the problem will eventually work if you keep trying them. I have learned that if the problem has not drastically changing in a matter of hours or days, call back and keep calling until someone takes your child's problem seriously. Otherwise it's just a huge mess. Literally.

Pity Party

You know in Office Space when Peter says, "Every day is worse than the day before and so that means that every single day that you see me, that's the worst day of my life."  Well, if you replace "worst" with "hardest" that is me in a nutshell right now. It really seems like the days keep getting more difficult and I just don't know how much more I can take and stay sane.

I know, I know. It sounds like I have a terrible attitude, and I guess I do, but I just had to let my normally positive attitude go on hiatus for a bit. I mean no normal person can let all of this stuff roll off their backs all of the time, can they? I just feel so frustrated and tired and sometimes just want to go in another room and scream. Seriously, if I gave you the blow by blow of my day and what it all entails you wouldn't even believe it. I would write it all out because it is probably comedic to some. But I just can't relive it. I don't even tell Justin the full details about our day because it's so exhausting just to explain it. And it's every day.

The reason I am on the verge of losing it is because right now both of my children are having health issues (I'll explain about ML later) and I just can't seem to make at least one of them well. On Monday I had to figure out how I was going to get through nine appointments this week. Each day (at 5:30 when my children wake up) I have to take a deep breath in order to face the day. And throughout the day I just whisper quiet prayers asking for patience and endurance because it's so demanding right now. And what's even harder is that I feel like I am the only one dealing with stuff like this (don't you just hate when the Enemy does that?). I look around me and it seems like everyone else has it all together: their children have no major issues or illnesses, their husbands don't have absurd work hours, they have family close by who can help so they don't have to drag both children all over town to hospitals and doctors offices, they don't have horrific pregnancies, and they have time for things like Bible Study or even the gym. I know no one's life is really easy, but it sure seems that way sometimes.

The reality is that I am so tired of myself. So tired of our family having issues, and problems, and one thing after another. I know my friends must be tired of me, too. They have done more for me over the past year than most families do for each other. And they haven't stopped. When they see a need, they do whatever they can to help me. And I just don't want them to have to anymore. Or I guess I should say that I am tired of always being the friend in need. Like I said, I so tired of me.

As you can see, I definitely have been throwing myself a perfect little pity party for myself.  I know as I write all of this down that I don't at all sound thankful for the precious moments we are experiencing amidst this trial  or the amazing things we are learning about God's goodness and faithfulness. And that's wrong. Because God has not abandoned us and has given us the strength to make it this far and He will continue to do so. But today I have just have to vent. And writing it all out allows me to do that ( and maybe someday my daughters will read this and smile at the thought of their mother losing it). I guess you could say I am giving myself a pass today. Because I mean, really, a person can only take so much.

Recent Photos

Despite all of the recent stress, we've had some good times over the past few weeks for which we are so thankful. And the fact that Maggie is here makes it all even better!

With Cousin Noah at a Easter Egg hunt in Little Rock

This is the dress Mary Lawrence wore when she was 1 week old; Mags is 5 months- oh well; she'll catch up we just know it!

I know we are just cruel to do this, but I just couldn't resist!

First time to meet her beloved great-grandparents...

Mary Lawrence loves her Nanny and  Pop and wishes she could see them more often.

with cousin Pierce at the playground (they had just bumped heads)

at her birthday party last week - she had a blast although you'd have to know her facial experessions to know that this means she is having a good time!

Snow White and Snow White

Picnic at the Abroretum - Mary Lawrence was so happy to be doing something together as a family

She loved going "over the bridge" a thousand times just like Dora...

Maggie has a matching dress but I forgot to get a picture of them together!

Daddy and Maggie recovering from a long day!

Baby Whisperer

As usual getting in to these places to get therapy is not easy and there is usually a really long wait list. It seems when your child is on the verge of dehydration it would put you at the top of the list for "feeding therapy" but then again I guess you only qualify for feeding therapy if you are not eating.

Yesterday I was quite frustrated about the whole thing but then my grandmother had a genius idea: ask Maggie's NICU nurse to come show you how she feeds Maggie. (Her nurse is an angel and has babysat for us a few times and this past Sunday she got Maggie to eat 3 ounces!). Anyway, the angel that she is, she came over right away and showed me how she fed Maggie.

Interestingly she still puts Maggie on her side while she eats, just like she did in the NICU (I thought that she was old enough not to do that but with the reflux she thinks it is a good idea). She cupped the back of her so she wouldn't stretch back (she is always trying to "get away" from the reflux). She held her bottom and legs close against her side so she couldn't kick away. The lights were dim. Mary Lawrence was asleep so that helped as well. She burped her laying down - who would have thought?! If she stopped sucking she just rubbed her head to get her to restart. She didn't talk and I didn't either. And, guess what, in 10 minutes the bottle was empty! I couldn't believe it. Either I am a really incompetent mother or she truly is a baby whisperer. She just said that she has babies that are in the NICU for 6 months or more and have these same feeding issues and she has just learned really good techniques for getting them to eat.  Still, I was in awe.

A few hours later I couldn't get the same results by myself, but it was a little better. I have been making the room completely dark so she can't be distracted and holding her on her side just like her nurse did. I had to have a talk with ML about how we need to be really quiet when Maggie eats (good luck with that, right?!)While she's not eating the full amounts, she is eating more than last week, which is huge. And I praise God for that encouragement. And I feel like I have things I can work on until we can get to the doctor and to the therapist.  If only I could hire our baby whisperer full time to show me how to deal with all these hiccups in a preemie's life!

You can't make a child eat...

Maggie has lost weight over the past five days. I kind of suspected it but a visit to the doctor yesterday confirmed it. I don't think I have ever been so stressed out in my life. It is really scary to see a child get dehydrated and refuse to eat, all the while smiling and cooing and acting like everything is just fine! A friend jokingly suggested I get her chocolate formula to make her eat. Little did she know that we are giving her vanilla flavored formula because that is the only thing that she will put in her mouth.

Anyways I sat with the doctor a long time yesterday and we discussed the issue. He thinks it is a combination of two things. First, her acid reflux is beyond terrible. Second, her sucking reflex has disappeared. Which sounds bad but really it happens to all babies. All babies are born with reflexes (you've heard of the Moro reflex where they throw their hands up in the air if they are startled). Well the sucking reflex is one God gives them so they don't starve to death I guess. But after a few month of learning what it means to be hungry and then how to satiate that hunger, they no longer need that reflex. Well some NICU babies who had feeding tubes never learned what it was like to be hungry because they had a feeding tube that automatically fed them every three hours no matter what. 

Most NICU babies figure out how to eat when their reflex disappears and do fine but Maggie is having trouble. She wakes up hungry and takes about an ounce real fast but they she feels somewhat satisfied so stops eating and wants to smile, play, look around. She does not understand that she needs to feel completely full. The reflux also plays a big part in making her stop after an ounce, too, because the milk starts coming back up and she doesn't want it anymore. So we have two things going on that need to be addressed.

Her doctor told me that he treats this issue aggressively. He said he even conducted a study on this problem I am so thankful we are going to him. We will go to a GI doctor to see if there are other issues going on or how to more effectively treat the reflux (the highest dose of prevacid is doing nothing) and then do feeding therapy. (Seriously, how many types of therapy are there??) We will try several things but the last resort is a gtube.

On a positive note, the doctor was so impressed with Maggie's development. She was intently staring at him the entire appointment and following him around the room with her eyes. He said he was not worried about her brain development because her head measures normally and  she is very alert. He told me that mentally challenged babies rarely have feeding problems because they never lose the sucking reflex. So I feel good that hopefully this is just a preemie issue and not a brain issue.

I just pray that I can have more patience with both of my children and also get on top of everything I need to right now. It is all just so overwhelming but today I am just going to focus on getting my outlook organized so I don't cross book appointments and also make lists of all the people I need to call and emails I need to send. I feel like I used to be an organized person but for some reason I just can't keep all of medicines, treatments, therapies, doctor appointments straight!

Update

Well it's by far been the hardest week since we got home from the hospital. After getting the ok from our doctor we drove to Arkansas to see our family for Easter. I was so excited because I had not been there in over a year! We followed the same guidelines - no visitors outside family, bathed ourselves in purel and kept Maggie away from any children. But even still, all of us, including Maggie, got sick with colds and coughs. Nothing has been more scarier than when Maggie got her first illness, even though it turned out to be somewhat mild (and thankfully not RSV). Now I now why some nurses in the NICU told me not to take her out for a year. It is just too scary when these little babies get sick and can't breathe. It is even scarier when you are away from home and your trusted doctor.

But after 36 hours of her being sick, we felt she was strong enough to take the four hour drive home and get her to her own doctor. About 5 minutes into the drive, though, Mary Lawrence vomited all over the back seat and herself. My mom and I just wanted to cry. I did! Poor thing had the stomach virus for the next 24 hours but thankfully didn't throw up again until we got back to Dallas.

During the drive Maggie's apnea monitor alarmed twice (meaning she stopped breathing) but we made it home safely and took her to the doctor the next day. I was worried about the cold so was really upset to find that we had much deeper issues going on. As you know, Maggie's feeding issues have been going on about a month now. After trying different reflux medicines, thickening her bottles, every other thing that was suggested, the doctor finally said that he wasn't worried as long as she was gaining weight. Everyone kept saying it was a phase, and after pushing back on that a lot, I finally accepted it. I shouldn't have.

Her weight gain has slowed down significantly so much so that she has hardly gained any over the past two weeks. And she has more and more dry diapers ( which means she is dehydrated). On Friday she only ate about 4 ounces all day. And she should be taking about 16-24. It was really scary.

But the doctor gave us a new game plan and we are trying some different prescription formulas (something having to do with a protein). I am not so sure but we'll see. I kind of feel like if I hadn't listened to the dietitian and doctor, and had just breastfed her like Mary Lawrence without all of this pumping and adding supplement to it, maybe it would have all turned out differently. But I can't second guess I know.

I keep asking why she was such a good eater and then just stopped. I haven't really gotten a clear answer other than as some preemies' brains get more developed they become more discerning and it could be a taste thing, or a reflux thing that is hurting her. Either way, she has decided she does not want to eat. And nothing is more frustrating and scary. There are several things we can keep trying but the last resort is a feeding tube but we are not even thinking about that right now.

Thanks to all of those who have asked and kept up with us about that. I haven't blogged about it because I didn't want to make a big deal out of nothing. And I am tired of always having some crisis! But we would appreciate your prayers as we try to resolve this issue. Many thanks as always...

A wonderful organization

                                                                                   photo:Legacy Portraiture

When I was told that most likely Maggie wouldn't survive birth or at most maybe a few hours after birth I started contacting photographers to find someone who might be willing to be "on call" to come to the hospital to photograph our family. A photographer referred me to the organization, Now I Lay Me Down to Sleep, which is professional photographers who volunteer their time to capture the precious babies who did not survive birth or whose life-threatening conditions will not allow them to live very long after birth.

It is such a delicate matter to invite a complete stranger into a tiny delivery room for the most precious and most devastating moments of your life. But if Maggie didn't survive I wanted those precious portraits for myself - a reminder to all that she was a real little girl who fought so hard to live, whose life had worth and meaning, and who had the distinct features of her mama and daddy.  I found a photographer on the list whose pictures I loved. I emailed Legacy Portraiture with my story and request and the photographer, Christy Lafferty, emailed me back and happily agreed to help us. Only then did I realize that she was the wife of one of the dear pastors at our church who had been ministering to me in the hospital.  My how God works things out harmoniously.

Anyways, as many of you know I went into labor in the early morning hours and it was horrendous and we didn't even have time to call Christy. I think someone must have told her from reading my late night blog postings and she came to the hospital that morning without us even asking - not really knowing the outcome like us. They were working on Maggie all morning and at the time wouldn't let anyone in the NICU except the parents because of the swine flu . So we didn't get the pictures we wanted but that was okay because Maggie survived and we would have time to take lots of pictures.

But I have not forgetten this amazing organization and what a gift they provide for so many grieving families across the country. And I will never forget what Christy did for us that morning. That's why she was obviously my first choice to come take pictures of our family that first weekend we were all home together, which is when she shot the photo above.

Anyways, Christy submitted this photos of us (and others!) for a fundraiser that raises money for the NILMDTS organization. You can go online and vote for the "Cutest Family in America" ($1 donation). And you don't have to vote for us - there are lots of precious families!


http://www.sandypucmodels.com/
Click on "Gallery" and then select "Dallas" for location.

Now I Lay Me Down to Sleep Organization
http://www.nowilaymedowntosleep.org/

Legacy Portraiture
http://www.picturealegacy.com/

Patience, patience

This picture I took yesterday at yet another doctor's office. It pretty much sums up what each week - me carting both girls to a doctor or therapy appointment and Mary Lawrence trying her best to be patient with it all. It seems like we have an appointment nearly every day.

And so I have become Mary Poppins in the diaper packing department - stuffing everything from food to juice to library books to new toys in there so it is overflowing with activities to keep this nearly three year old entertained why we wait and wait.

Yesterday we waited for nearly an hour and she sat there quietly on the steps playing with her princesses. I wish I could enjoy the good behavior but the whole time I am overcome by immense stress wondering when Maggie is going to wake up, praying she doesn't start crying and I have to take her out of the veiled car seat where she is protected, thinking any minute Mary Lawrence is going to hit her breaking point and hoping I packed enough anti-bacterial wipes to get through the office visit?

And then no matter how well things are going, something always happens to throw the relative calmness into complete chaos and my mounting inner stress turns into tears running down my cheeks. Whether it is a huge diaper explosion and I forgot an extra outfit or Mary Lawrence busting her knee on the sidewalk outside the office and I don't have any band aids , it seems no day ever goes really smooth and as I often find mysef in tears and praying for endurance and patience to get through the day.

I know I am kind of feeling sorry for myself. I think I have just come to the realization that even though Maggie is healthy and doing great, our normal daily lives are very different than other families with young children and will be for a while. Maggie is going to need occupational and physical therapy twice a week and speech therapy as well. She has a developmental specialist that comes to our house twice a month. That's not including the pulmonologist, opthamologist, dermatologist and I sure there will be other "ologists" along the way. Am I sounding bitter? I am not. I guess I just had this impression that once we got through RSV season we could get out more, but getting out consists mostly of these appointments and then me stressing to fit in some "fun" time for Mary Lawrence. I always thought as a young mom I would be going to story time and Bible Study or MOPS or planning or day around the arboretum or some fun museum. And that's just not the case right now. I am trying to make the most of it, but honestly right now I am just a little overwhelmed.

I pray often to God that I don't know if I can do all of this well enough. I'm too impatient. Too short-tempered. Too selfish. Too tired. I just feel like I am not strong enough to deal with it all. But each time I feel so weak and incompetent I remind myself what he has already empowered me to endure. And I hear him saying to me, "Lee, you can do all things through me, who gives you strength."

And that's all I have to say about that right now.

Is this a preemie thing?

Maggie has basically stopped eating. Not completely, but she is probably eating like 40 percent of what she was doing 2 weeks ago. It is scary and frustrating. We have brainstormed and tried many different things to try and figure out what is causing this drastic change in behavior but nothing has fixed it so far. She is not unhappy nor lethargic. So I although at first I feared she was getting sick, I no longer think that's not the case.

This morning, for example, she ate about 20 ml (she used to eat about 70 each time) and then just started pushing the bottle away. Then she started grinning at me and wiggling around like she wanted to play! She is so cute and happy it's so hard to be frustrated with her. But then I start to panic when I think about how much more she used to eat. We've been to the doctor and she has gained some weight so they are not overly concerned. We've changed medicines, increased the prevacid, thickened her formula, tried gas drops (I think those are worthless), gripe water, started not letting her sleep as long at night (ugh!) but nothing has worked. Many have said it's just a "phase" but I am just not sure. And I have learned that it's easy to get obsessed with the numbers with you are bottle feeding so I am sure I am being a but uptight. She has another appointment tomorrow so we'll see if they can tell me anything else I can do.

I keep telling myself that this is our first big issue since we've had her home so I should be so thankful that we haven't had to deal with much else besides this. I really am thankful to God for letting us have it so easy when I know it could have been so much worse. It is just hard to remind yourself of the blessings when you are so focused on one immediate but simple thing like getting a baby to eat!

Family finally gets to see Maggie!

No tubes!

(in the sweater and bonnet my grandmother knitted)

Off oxygen!

We slowly weaned Maggie off her last little bit of oxygen last week and she has been off completely for nearly a week. And she is doing amazingly well! We still have to check her oxygen saturation four times a day as she might get fatigued but for right now she is just fine. So all that is attached to her is her monitor, which makes it a little bit easier to maneuver her around. Justin says she looks like an entirely different baby without those tubes sticking her nose. I think so too. You just look at her differently without them in. And can study every little feature about her precious face more closely without that ugly tape on her cheeks. I wonder if she feels relieved not to have something poking in her nostrils for the first time in her life. I hope so.

Maggie's checkup this week went great. She weighs 8 pounds 8 ounces and the doctor says she is on par with a healthy newborn now. Unbelievable. He said we still need to be very cautious until at least April about taking her out, as RSV season is still in full swing. And we will do therapy for her neck and muscle issues, but otherwise she is in good shape. When I think about how much worse it could be all I can say is "Thank you, Lord."

Now a 29 year old wife and mother....

Justin is out of town so it's just me and the girls today. I told him I didn't need anything because I have the best present ever. But he did leave with me a dozen Sprinkles cupcakes ( yes, a dozen) and a card that had the picture below and read, "You're still alive - gimme five." I might take offense to it if it wasn't so appropriate.

And in honor of her four month birthday today, here is a video of MM reaching her first big milestone - smiling reactively to us. Something so small is so precious to us! We praise God daily for this baby.

And, finally, a priceless photo. Most babies have their fussy time at night and the only thing that calms Maggie is for Justin to hold her (a tradition that started in the hospital and can't be broken). So I have been encouraging him to use my sling so he can calm her and get some work done. A little snug but it works!

The D- word

“By wisdom a house is built, and through understanding it is established; through knowledge its rooms are filled with rare treasure.” Proverbs 24:3-4 

During our dating years and early married life I heard many talks and sermons about how couples should always place each other above their children. I remember making mental notes of the key points for when I had children one day:

- Children need to see their parents spend time together and show love and affection to one another
- Children need to feel secure in their home and a crucial element of that is seeing their parents get along and not argue in front of them
- Mothers are often tempted to give themselves entirely to their children, which often leaves husbands feeling resentful and left out
-And finally, children need to see a God-centered marriage so when they grow up and get married they will have a healthy marraige to model their own after.

All seemed easy enough at the time. Now, not quite so much. I don't think its a coincidence that both my doctor and Maggie's nurse have both made it a point to tell me recently how high the divorce rate is among couples with premature babies. Who would have thought? I always knew that the rate was high among couples with very sick children. But you would think that something life-changing like bringing home a baby that was so close to death would make your marriage so much stronger. But that's not often the case. After being home for nearly two months with Maggie I now can understand how the stress of caring for a fragile child can really affect an otherwise strong marriage. Resentment can build up easily. The "who has done more" game never really results in a winner. Two people that love each other deeply end can easily become two ships passing in the night.

Now don't read too much into this posting. Justin and I are hanging in there. But I am not going to lie - it is tough. We felt like we were closer than ever during the time I on bed rest. Justin spent many nights with me in the hospital, sleeping on that horrible pull out chair, and we had lots of good talks. We prayed together.  We laughed a lot. We cried often.

But now that everyone is home, it has gotten more difficult to focus on each other. I mean how can you ever spend any time together when your baby requires near constant attention?  And your two year old is needing extra attention, too, because she is suffering as well. Babysitters haven't really been an option. I feel like I need to get out on the weekends but he feels like he needs a break from working all week. Since we can't take Maggie out we take turn doing errands, so the four of us rarely spend time together. Even when we are in the house, we seem to be in different rooms. It is just not easy to follow Mary Lawrence around the house with Maggie attached to her equipment. The other night we tried to all sit down in the dining room for dinner and Maggie started crying in her crib. If she was a normal baby I would have just gotten her from her room and held her in my arms while we all ate. But since her cords don't reach that far (and I was too lazy to move everything for a 10 minute dinner!) our family dinner turned into a Justin and Mary Lawrence dinner. (We tried, right?) Now I know why at every checkup, Maggie's doctor specifically asks me how Justin and I are doing. At first, I thought it was just casual conversation. Now I see that he probably has seen many marriages fall apart before his eyes. It's so sad.

We feel so thankful that we were somewhat prepared for this hard time. It is no accident that we found ourselves at a Family Life Marriage conference last winter right before I got pregnant. (And, trust me, we are not the marriage conference types but boy am I thankful we went). While there we made a commitment to each other to start praying together every night no matter what the circumstances. While we haven't lived up to that commitment perfectly, we have prayed together this past year more than any other time in our marriage and I truly believe our relationship was stronger because of it. Inviting God into our marriage was the most powerful thing we could have done to strengthen it.

So to all nearly and newly weds out there, I don't mean to be a pessimist or anything but hard times, they are a comin'!  So now, when things are good and easy, is the time to build a strong foundation for your marriage. Pray together, built up a fortress of trust around your marriage. Treat the relationship you have with your husband as the precious treasure that it is. Protect and nurture it. So the day when adversity comes your marriage will be able to withstand it. And don't fall for the myth that just because you both are Christians you are immune to the common causes of a failed marriage.  Because tiny little cracks in the foundation of the so-called "house" you are building together can creep up on you when you are not looking. Deterioration of that house can come easily when times get tough.  And that foundation that you assumed was sufficient can actually collapse under too much pressure if you are not careful.

I was thinking, you know how at bachelorette parties a popular game is for all the ladies to write down a sage little tip for marital bliss. Like "never go to bed angry" or "always wear something cute to sleep." I wish we could play this game on the NICU floor and all give each other tips for keeping our marriages strong, since they are obviously at more risk.  My little nugget of wisdom would be the best piece of marital advice we have ever received and it is this: Don't ever use the word "divorce" in your home. Not while arguing, not even in casual conversation. Because once the D-word is out there, it is out there. And it is a dangerous word. And if it's in our vocabulary it can much more easily become an option if things get too tough. And we vowed that would never be an option for us.

In closing, I know things will get easier for us. For some families, they never get easier. And I will never take that for granted. I am so thankful for these trials because I know they are strengthening our family unit. And I am thankful because I know that one day we will look back on this time and be able to say,  "Look, we got through that, we can get through anything."

From the mouth of babe...

Mary Lawrence has two new favorite phrases. The first is "I don't want to stay here anymore." Meaning, she doesn't want to stay at our house anymore. I don't blame the poor child. From her perspective we hardly ever get to do anything fun. The second phrase is, "Mama, I'm so proud of  you." Which she says as she is either giving me a hug or patting me on the back (while melting my heart at the same time). How from such a tiny mouth of a toddler God gives me such encouragement to keep on trekking through the day...