Tuesday, March 30, 2010

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.

Monday, March 22, 2010

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!

Monday, March 15, 2010

Friday, March 12, 2010

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."

Thursday, March 4, 2010

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!

Wednesday, March 3, 2010

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."

Monday, March 1, 2010

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...