Thursday, January 28, 2010

Our new normal

I haven't been posting a lot because it is really hard to find 20 minutes to sit down and do anything! I don't have anything of much importance to do but just basic things like returning emails, taking a shower (drying my hair is out of the question), returning phone calls, going through my mail and papers that have piled up over the past two months. I keep telling Justin if I could just get one thing checked off my list each day, that day would be counted a a success. But it's amazingly difficult to do!

Obviously Maggie requires almost constant attention. And when she's asleep, I try to spend time with Mary Lawrence, who we have taken out of Mother's Day Out for the rest of the year to minimize our chances of bringing home any viruses like RSV. I feel so guilty about this but keep telling myself it's the right thing. Poor thing, though, she has randomly announced a few times today that she wants to go to school. I know she's only two and she won't remember it in the long run but I still feel bad about it. Her life has been turned upside down this year and it's still not back to normal. It's not fair but we have to do everything we can to protect Maggie. So without school twice a week Mary Lawrence has volumes of energy that needs to be exerted. Thankfully she is good at playing by herself but I try to play with her or do something with her one-on-one every day. But I have to admit, it's hard to take 15 minutes to do that when I would sometimes rather organize her messy room or make a grocery list.

We are blessed to have a wonderful housekeeper a few days a week, otherwise Justin would come home to complete squalor. But even with a little help I still find myself not quite on top of things. I still haven't gotten a handle on our new normal. It's very strange to think that people's lives are buzzing all around us but our new life means being mostly home bound and trying to protect and grow this fragile little baby. It's so easy to forget that Maggie is so fragile because she seems strong and loud and feisty, but underneath that personality is a tiny baby whose lungs are still growing and very susceptible.

But you know, I keep reminding myself that it's really not that bad staying home all day. I am a homebody anyway. And the day goes by really fast because the action never stops. If I have the strength I'll get the girls in the car and go through the drive thru. But that's exhausting so I'll often go three or four days without leaving the house.

And poor Justin, by the end of each day I am so drained I don't think the words that come out of my mouth make any comprehensible sentences. So I often just go right to bed as soon as we get everyone to sleep and get all the bottles ready for the night. He is so sweet and let's me go to bed at 10 and then he does the 11 o'clock feeding so I get a solid block of sleep until the  3 am feeding.

So we obviously aren't getting to spend much time together as a couple since I am going to bed so early. Last Saturday we tried to have a "date night" and we rented a movie on "On Demand." It was a complete disaster. The movie would freeze every 30 seconds and we would have to stop it and replay it. We did this for an hour and only got through about 15 minutes of the movie. We were both so tired, but I was determined to finish it so we could say we really had a date night. Justin spent 20 minutes on the phone with AT&T but to no avail and then went to Blockbuster to rent the video ("The Hurt Locker" was the movie and it was excellent). So we watched a 100 minute movie in about 4 hours I think. It was midnight or one before I went to bed and the entire next day I was in a foul mood because I was so tired. Moral of the story is we might have to wait a bit longer for some quality time together. I know we will get there, but right now we have to survive and sleep is so important for survival!

Needless to say, communication between us is not great these days. I find myself making lists of things I need to talk to him about. So Justin, if you are reading this, I meant to tell you that I need to run a lot of errands this weekend since I don't get to during the week. Hopefully you can spare me a few hours this weekend so I can get my sanity in tact for another week. Thanks Hub. Love you.

Sunday, January 24, 2010

Adjusted age

We reached Maggie's due date - January 19th - and what a special day that was. We marveled at how our different our lives would have been if I had a normal pregnancy without complications. And how much we have changed, hopefully for the better. And we just gave thanks for having her home. We have to keep reminding ourselves that she is still technically a newborn at 6 pounds, 1 ounce. She has been alive for 2 1/2 months so we forget sometimes that she should be sleeping like a newborn, and not really doing anything much besides eating. Right now Maggie's adjusted age is only 5 days. So for all milestones we will not use her birthday of November 4th, but her due date.

At her doctor's appointment this week her doctor told us that she would be followed closely for the first year to catch any developmental delays. I immediately went home and downloaded an iPhone app to keep track of all of this stuff. All day I worried about it and feeling like I was going to worry every day until we got safely through this first year, and then by the end of the day I realized that maybe that I hadn't changed that much! Have I already forgotten that God is here with his hand over Maggie? That He has taken care of us through all of this and He is not going to stop now? That He hears our prayers and answers them all according to His perfect plan?

I was reminded once again about how healthy Maggie is right now and how far she has come. We are daily pinching ourselves that she is here and alive and doing so well. Her doctor even said right now he has no reason to worry about her development, rather it's just something that they have to watch in all premature babies, especially with mine because of the lack of fluid. So as my grandmother says, "Don't borrow trouble." So I'll try not to. I will try to enjoy every single day of this first year, giving thanks for my precious little angel and will not cease to lift her up in prayer.

Tuesday, January 19, 2010

Most piercing sound you've ever heard

Note to self: when you've just spent 2 hours at the doctor and have spent the majority of your time there making a bumbling fool out of yourself getting the cords caught in the door, stroller, etc, and all you want on the way home is a large sweet tea with lemon from Chick Fil-A to relieve your stress, think twice about making that 10 minute detour. I found out today that the monitor only stays charged for about 2.5 hours and so as we are pulling out of the drive thru, on came the louder-than-smoke-alarm sound right into my poor baby's ear. I didn't know if I was more worried about her losing her hearing on the way home or the battery actually dying and then I wouldn't know if she stopped breathing while I was frantically driving home. It was so loud that a police officer stopped next to me at a light looked over and made a questioning face to see if everything was ok. Mortifying.  Mark that down for another stupid thing Lee does with Maggie. Oh well, we made it home without incident and I have to say, the sweet tea was not worth the near heart attack I just experienced.

PS Eye doctor wants us back in  weeks to check again but so far everything is okay.

Monday, January 18, 2010

Jan 18

Maggie is doing great. My mom just left so tomorrow it is my first real day to do it all by myself. Thankfully my mom got my house in order and spiffed it up a little for Spring. So although I am home bound, at least I have a happy home to be bound up in!

It is definitely hard to stay on top of everything else in our house because it seems the day is a continuous cycle of the following things : pump, feed Maggie, give breathing treatment, put Maggie to sleep, spend time with Mary Lawrence and then it starts all over again preparing medications and taking her temperature, oxygen saturation, etc. In between there is always the occasional alarm going off where I have to figure out what is going on with Maggie, usually it is just a false alarm. It is all exhausting but I don't dare complain (ok maybe I do sometimes but I always want to slap myself when I do). And thankfully I have a sweet husband who helps me a lot when he is home. I keep telling myself I will get more efficient or figure out a better routine but haven't gotten there yet. It doesn't help that Maggie has her days and nights mixed up. She is wide awake in the middle of the night and screams a lot. Then she is exhausted the rest of the day and sleeps all day! If anyone has any suggestions on how to get her switched back around, I am open to suggestions. But overall, she is making great progress. We are going back to eye dr. tomorrow and pediatrician on Wednesday.

We went for our first walk today since the weather was so warm. I think the fresh air was good for all of us!



Thursday, January 14, 2010

Wednesday, January 13, 2010

Update

Maggie had her first checkup today. She's now 5 pounds 14 ounces! Bigger body = bigger lungs so that's good! He didn't change any of her oxygen stuff but  said maybe next week he will start weaning her down. It was my first time out in five days and the highlight was driving through Taco Bueno. At least bed rest was good practice for being homebound!

We go get her eyes checked again on Friday at a pediatric opthamologist so praying for good results. My mom's here so Justin and I are enjoying the extra help the rest of the week.

Monday, January 11, 2010

First Bath Video

Thought it would be interesting for my family and friends to see how we give her a bath. The NICU bathes them in a blanket to keep them warm. If preemies get too cold it can be dangerous. You just unfold a corner of the blanket and then wash that area and then fold it back over her body so it stays away from the cold air. She loves it!


video

P.S. Mary Lawrence did not end up having a cold. But yesterday about 4 pm she did throw up. I freaked out for about an hour thinking she was getting the stomach flu and how awful that would be if Maggie got it. But about an hour later Justin and I recounted what she had eaten that day and realized neither one of us had given her lunch (we both thought the other had taken care of that). So all she had to eat all day was frosted mini wheats, a frosted pink donut, and a hershey bar. How awful are we! The hershey bar I gave her yesterday afternoon because we were trying to get some cute pictures and I had to bribe her by breaking off pieces of the bar to get her to do what I wanted. But I ended up using the whole bar, which is what she threw up an hour later. So put us down for the worse parents ever. I am embarassed to write all of this but hopefully other new parents out there won't feel so bad when they neglect their older children like us!

Saturday, January 9, 2010

Second Day Home

video

(Video of sisters meeting for first time)

It's been a good first full day home. Justin and I were exhausted this morning after our first night tackling all the medications, breathing treatments and monitor false alarms. We are still figuring out the best place to put Maggie. One thing I didn't think about is that since she is constantly attached to the atom bomb sized oxygen tank in her room we can't move her easily around the house. We have all tripped over one of the three tubes or cords that are attached to Maggie. Thankfully we haven't jerked her too hard yet. Blue, our gignatic labradoodle, wants to be in her room so I have to find ways to keep him out, but since Mary Lawrence is all of sudden quite attached to him, she cries every time I kick him out. So it's been kind of a crazy past 24 hours but we are managing okay and trying to figure out a good routine. Tonight we have a genius new strategy : one of us will sleep while the other does baby duties.

Only problem we are dealing with now is that Mary Lawrence just woke up from her nap with a snotty nose. She has been around Maggie all day and although I have tried not to let her get right in Maggie's face, it is sometimes hard to avoid. But now that she might be getting sick I especially need to keep them apart, which is going to be difficult because Mary Lawrence is very interested in her little sister. She keeps asking her if she wants to play!

So right now I am praying that Maggie stays healthy. The doctor told us no visitors for now to minimize the risk for germs, so hopefully her big sister won't be the one to get her sick for the first time. If she gets sick, it probably means going back to the hospital. So we don't want that!

Friday, January 8, 2010

A Sweet Homecoming

Praise and glory to the Lord above for He has answered our prayers. Six months ago Justin and I drove home from the hospital in the sweltering July heat after receiving the most devastating news that parents could ever hear: our baby would probably not live. But on this frigid 19 degree day we drove our precious baby home from that same hospital. She's been fighting for her life for six months and now she can finally rest easy at home with her family. Well done, Maggie. We love you so much. And thanks to all who have shared this journey with us. We couldn't have done it without all of the love and support we have received from so many out there!



One last breathing treatment before we left the hospital



let's get out of here!



loved the car...



Sweet friends decorated our house for Maggie's homecoming






ready for baby!







first time for sisters to meet






Someone is really interested


Okay we might have some issues here
(Don't worry, Maggie was not in the bed)

Thursday, January 7, 2010

Tomorrow's the Big Day!

I can't believe it. Our little miracle is coming home tomorrow. The tests came back normal and so the doctor is letting her come home. Yesterday we were trained on how to use all of her equipment - the oxygen tank, her monitor, and her breathing treatment. It's a lot but after watching the nurses take care of her for 2 months I feel confident than I can do it, too.

Last night we had a full circle moment. Sorry for the Oprah jargon but it is really true in this case. The NICU makes parents room-in at the hospital with their baby before you bring her home to make sure you are capable of taking care of such a vulnerable and high-maintenance baby. So we did that and what was so neat was that we stayed on the antepartum floor. We got to see a lot of my old nurses and show them the little girl that they help keep inside me for so long.  Justin and I reminisced about the whole experience and cringed at thinking about how miserable it was sleeping in the hospital every night -Justin on the pull out chair and me on the hospital bed with the plastic mattress that was so uncomfortable. It's funny how we look back and just can't imagine how we survived it.

I couldn't sleep last night, of course, so as I looked around the room I thought about those difficult nights I experienced in the hospital where I would cry and sob and pray for my unborn baby's life.  The reason I put that Lamentations verse on this site is because that's what I did every night : Cry out in the night and plead for the life of my child. And  it is was such an amazing thing - a full circle moment - to look over at Maggie sleeping peacefully in her crib and say, thank you Jesus. He heard our cries and he lifted us out of the miry pit we were in for so long. And He gave us a precious little girl that is perfect in every way.

.

Monday, January 4, 2010

Not so fast...

"These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." I Peter 1:7

Just as I was washing and folding Maggie's clothes this morning I got a call from her nurse saying Maggie wasn't eating well again. Uh oh, I thought, here we go again with another setback. Poor little Maggie is either getting really exhausted taking all bottles or she may have a bigger problem. One theory is that she is aspirating milk into her lungs as she eats, which could be furthering her breathing issues. So tomorrow morning she will see a radiologist who will dye her milk and then be able to watch on screen to see where the milk goes within her body (pretty cool, right?). If it goes into her lungs then they will have to figure out how to fix it. It's not a terribly serious thing but may hold her off from coming home this week. We'll see.

Needless to say, I was really disappointed this morning. We had just spent all weekend getting ready for her to come home. But we just keep reminding ourselves that she is going to come home eventually and that is what we need to focus on.  I am just ready though!.

Today's our seventh wedding anniversary. If someone told me all the journeys, trials, and tribulations we would experience in just seven years I would  never have believed it and maybe would have backed out! (Just Kidding, Hub).  Someone once wrote and asked, "What if marriage isn't  supposed to make you happy, but to make you holy?"  I can see that. It is not easy to hide your faults and flaws when you are in the daily trenches of life with your spouse. It's funny how they just come pouring forth when things get tough. Or at least mine do! In marriage it's like our sinfulness is illuminated with a big spotlight. But that's when we really see our need for God's grace and forgiveness. And we see our desperate need for His help in our weaknesses.

No doubt the bonds of our marriage have strengthened over this past year and our love for one another has deepened. Two is certainly better than one, as I could never have gotten through all of this without my sweet  husband. A friend congratulated me today that Justin and I made it to the seven year itch - which I think is a non-scientific average for when marriages usually fail by if they are going to fail. Or maybe it's when people start getting bored with their marriages. I don't know but bored we are not! And as for failure, well that was never an option for us. It still isn't. God has shown us that with His strength we can get through anything. While we could definitely use a few "easy" years for a while, no matter what life brings I am so glad to be sharing it with the person that I am.

So I am off to celebrate... We've got big plans, too: putting together our bassinet, installing a car seat, and probably having a glass of wine. Now that's what I call romantic!

Sunday, January 3, 2010

Almost Home!

The doctor has given us the ok for Maggie to maybe come home this week. It seems too good to be true! We were told this on Friday and all weekend long I just kept waiting for the call that he changed his mind. But we didn't get that call! So today I have been scrambling around to get everything ready for our sweet baby. You would think we would have it all ready but I guess there was this tiny part of me that just couldn't believe this day would actually come. As we were hanging the curtains in her room tonight I was looking around and remembered how I stayed in that bed this past August when our A/C went out and I just prayed and prayed that we would bring our baby home to that room. And here we are getting it all ready for her. It is just too amazing that this is really happening!

Over the next few days Justin and I will be learning about how to care for our preemie baby at home. She will come home with supplemental oxygen so we will definitely need some training on that. While a few weeks ago I was very nervous about bringing her home with oxygen, now I am more confident as I truly believe that she will thrive when she is home with her family. And hopefully she won't have to be on oxygen very long.

We are so excited!!

Friday, January 1, 2010

Hello 2010!!


Loved taking a bath yesterday - she's 5 ounds, 3 ouncces now.


No tubes on! (they were changing them out) and she did just fine without them for a litlte while.




Uncles Will (aka "Buddy") met her for the first time


Big Poppa and Maggie



Mary Lawrence's experience with Santa on Christmas Eve


She did get on his lap after being bribed sucessfully with a candy cane


You can't see it but it started snowing as we left the downtown Neiman's and snowed the rest of Christmas Eve. We had a white Christmas!


video

A Video of our little munchkin after her bath. The little 'stickers' on her chest monitor her vital signs. (sometimes it plays and sometimes it doesn't - can't figure out why.)