Thursday, April 29, 2010

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...

Tuesday, April 27, 2010


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.

Monday, April 26, 2010

This picture made my day!

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

Saturday, April 24, 2010

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.

Thursday, April 22, 2010

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.

Saturday, April 17, 2010

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!

Thursday, April 15, 2010

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!

Wednesday, April 14, 2010

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!

Saturday, April 10, 2010


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...

Wednesday, April 7, 2010

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!
Click on "Gallery" and then select "Dallas" for location.

Now I Lay Me Down to Sleep Organization

Legacy Portraiture