Marleigh's shower

We are so lucky to have such great family & friends. Today, my sister Shannon, cousin Jenni, & friends Jami, Stephanie, & Kayla threw Marleigh a shower. It was so nice of them. Everything was perfect! They had it at Steph's salon & it looked so cute. They had pink flowers & a clothes line with adorable outfits for Marleigh! The food was great as well. I felt a bit guilty having a shower since everyone has already been so incredibly generous. However, many of the guests hadn't met Marleigh yet, so it was good they got to meet our little girl! Thank you to everyone for all the wonderful gifts! A big thank you to Shannon, Jenni, Jami, Stephanie, & Kayla!

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Shannon & Luke were out at my parents house last night, so Marleigh & I went out there for a couple of hours. Shannon was holding Marleigh & swinging in the swing on the front patio. Luke crawled up there & sat down beside them. He was talking about something then all of the sudden said, "high five, Marleigh!" He picked up her little hand & gave her a high five. It was so funny! He is such a cutie. Always wanting to help out by bringing me Marleigh's blanket or her bottle. Luke was also nice enough to loan Marleigh his little bouncy seat. (Although he had to get into it after Marleigh was in it. Kinda like "fat guy in a little coat..." name the movie) On the lowest setting Marleigh is barely able to reach the floor. She LOVES it. She was laughing & playing. She is starting to get the idea about being able to bounce as well.

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Marc's cousin Sarah got married Saturday. Sorry we couldn't be there, but congrats Carley & Sarah! Best wishes.

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Our niece, Brinley, was baptized today. Wish we could have been there! We still haven't met our two newest nieces! We are so excited for the end of September when we can finally meet them!

Marleigh continues to amaze me!

We got up this morning & headed to Wichita. I was sure Marleigh would fall asleep at some point on the way. Normally, she is only awake about 1.5 hours or so at a time. She woke up at 7:30 this morning & we left around 8:15. She stayed awake the ENTIRE two hour drive! Our first stop was the NICU. Marleigh was all smiles. We got to see Dr. Dorn, and many of our favorite nurses, including Holli, who is very pregnant. When the girls were born she was just a few weeks... doesn't seem like its been that long ago. We also got to see Linda. She told us that she recently got a kitten & named her after Marleigh! Seven months old & already has a namesake! It is always good to see everyone at the NICU. For so long, they were a part of our everyday life.

After we were done at the NICU, we met Eva, another of our favorite nurses for lunch. Marleigh's first time in a restuarant! By this time Marleigh had been awake for four hours straight. I was sure she'd be a train wreck all through lunch. Amazingly, she just looked around & took everything in. She was so good! It was good to see Eva again. We hadn't seen her since we left the hospital. Eva had Marleigh a lot at night. She was also the nurse that took care of Natalie the night she got sick. Eva is very special to us.

Marleigh caught a twenty minute catnap, then we were at the doctor. It took FOREVER at the doctor. Our appointment was at 1:15 & we finally left at 3:30! They pretty much told us what we already knew... Marleigh is amazing! They said she is around a 4-5 month old developmentally. Marleigh is only 4 months adjusted, so that is great. They were very impressd with how attentive & interactive she is. The doctor commented that she would never have guessed Marleigh to be a 26 week preemie. :) We are so blessed she is doing so well.

A guick twenty minute catnap again, & we stopped by Aunt Shannon's office for a quick visit. She hadn't seen Marleigh in two weeks & couldn't believe how much she has filled out in such a short time.

Another twenty minute catnap & then we were home. The only time she fussed during the entire carride was for about six or seven minutes when she had the hiccups. She HATES the hiccups. She only slept a total of an hour from 7:30am to 6:30pm & was so good. We're so lucky to have such an incredible little girl!

7 months old

Man, I'm such a good mom. Marleigh has a doctor appointment in Wichita tomorrow, & for the life of me, I don't know what it is for! When we left Wesley, they just gave us a list of doctor appointments. I want to say it is to check how she is doing developmentally, but not for sure. It might be an adventure... Marleigh & I are driving by ourselves. Marc has meetings in Wichita Monday night & Tuesday, so he'll follow us down. Wish us luck.

We had a pretty uneventful weekend. Marc was supposed to go to Manhattan to celebrate Monica's 21st birthday, but he came home Friday afternoon not feeling well. He thinks he had a sinus infection. He was really dissapointed he couldn't help Monica celebrate. Happy 21st, Moni!!! Don't worry... Marleigh chugged a bottle in your honor! Ha!!! Probably not the same kind of bottle, though.

Marleigh continues to do well on her formula, but doesn't nap well. Her max nap is 30-45 minutes. She wakes up arching her back & squirming. It is obivious she wasn't ready to wake up yet. Not sure if her little back hurts or what the problem is. I'm ready to try anything to help her sleep better. She does sleep for up to about 5hours at night, but she should be able to sleep clear through the night by now. I guess preemies just do things on their own schedule!

Marleigh is really getting chunky. I mean we're talking thunder thighs. They are ADORABLE! Her weight last Thursday was 13lbs. 12oz! She's also really trying to sit up on her own. She thinks she's a lot bigger than she is. We did try to feed her a litle rice tonight. I'm not ready to call it a success... she was too hungry & trying to load her pants, so it didn't go so well. We'll try again in another day or two. It was a two person job!

Happy 7 month birthday, sweet baby girl!

Tragic loss

I know a couple that always seemed to be happy. They have one small child & the wife was about 8 months pregnant with their second. I was horrified to learn that the husband committed suicide on Sunday. When I learned of the news there was instantly a pit in my stomach. I can not imagine feeling that things were so bad, that there wasn't a way out. Especially when you have children. He seemed to love his family. How awful must he have felt to disregard what this would do to them? I am saddened that he couldn't rely on his faith to get him through. My heart is breaking for his wife. I heard that the stress sent her into preterm labor & that she had the baby less than 24 hours later. That is all I know. What should be one of the most joyous moments in her life is completely tarnished now. She has an incredibly tough road ahead. His poor children... it is a tragedy to grow up without a father, but to know that he took his own life... to me that would be the worst.

For now, all I can do is pray. Pray for them to feel God's comfort. Pray that He gives them the strength to get through what lies ahead of them.

Hug your families a little tighter tonight & never take one day for granted.

Golf

Marc & I had so much fun playing in the tournament! It felt like I had a husband again! We did okay for both of us not playing much in the last year. I think we shot about 10 better than we did the last time we played in a tournament. I did make us skip the meal afterwards so we could go get Marleigh quicker (I know...ridiculous!!!).

Grandma took Marleigh to her church in Garfield. She said she was good as gold. Marleigh just loves church. She is always so good! She really likes the music. :) I think Grandma kind of enjoyed getting to show her off a little. I'm still overly cautious. They said Marleigh's immune system would be weak until she was over a year old. The only places Marleigh goes is to the doctor, to Grandma's, & to church.

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Marc left this morning for a three day work trip to Oklahoma City. He'll get home Wednesday night, then have to be back in Wichita all day Friday. He'll get home Friday night, then be in Manhattan for Monica's 21st birthday Saturday night. He'll get home Sunday & then leave on another work trip Monday. I think he should be back on Wednesday! Wow!!! That's a lot of traveling! We already miss him!

Randomness

First of all, I want to thank God for being so good! My cousin's little boy, Gavin has been very ill. He was in the pediatric ICU at Wesley for weeks. I am so happy to report that he is now at home!!! Gavin has a long recovery ahead of him, both emotionally & physically. I'm sure his parents, Darrin & Laura, will need some time to recover as well. Having a child that sick for that long has to have taken a toll. Please keep them all in your prayers.

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Marleigh has had three good nights in a row! We are thrilled she is feeling better. I was getting to where I would dread evenings. On Wednesday night, after I was taking the nasty pills to promote breastmilk, I was just so stressed & worried about Marleigh. Jenni offered to spend the night with us. Reluctantly, I agreed. I hate inconveincing anyone else. She assured me, that she wanted to. It was so nice to have her here. Thanks, Jenni! Also, thank you to Aunt Joan for keeping Jenni's boys! Sometimes it is just nice to have another female here.

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Speaking of the nasty pills... I quit taking them. They weren't kidding when they said they had side effects. Now that we know Marleigh can handle this new formula, I quit taking them. They were making me depressed, jittery, & upset my stomach. No fun at all!

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Tonight I was trying to Marleigh to go down. She was yawning & so tired. I rocked her for 45 minutes. She would almost be asleep, then her beautiful blue eyes would pop back open. She'd look around & yawn. I finally decided to put her in her swing. She rocked in her swing for another hour yawning the whole time, but never crying. I asked Marc to get her out of her swing to change her diaper while I made her a bottle. Little stinker was all smiles & laughs for Daddy! He was trying to keep her calm so that she would eat, then go right to sleep, but she was just laughing & cooing at him. It really was the cutest thing & both of us couldn't help but smile back at her.

I then fed her & she decided to fill her pants while she was eating. Of course, I immediately went to change her. Well, the aroma must have been too much for Daddy who was sitting about 5 feet away. He lost his dinner! :( Once he regained his composure, he asked how I could stand such a smell. I guess its just a Mom thing! Ha ha!!!

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Marc & I are playing in a couples golf tournament tomorrow. I'm excited, but nervous as well. It will be good to spend some time together as a couple. Grandma has agreed to watch Marleigh (what we would do without her?!?). I'm a little nervous because this will be the longest I have been away from Marleigh since March. I know she's in good hands, but I'm just so overprotective (with good reason, I think). Wish us luck tomorrow! We're just hoping to not come in last!

Prayers answered!

We found a formula! It is such a relief. God truly answered our prayers. I was getting pretty worried about what we were going to feed her. She has had two pretty good nights. She did fuss for just a few minutes, but I think her teeth were bothering her. She has one that is right on the verge of cutting through. I will gladly take 5 minutes of fussiness compared to the 5-6 hours straight. Last night she even slept in her bed! Since we started this formula saga, she would only sleep in her swing. She ate at 10:15, I had her in her bed by 11:00, she slept until 2:45. She ate, then went right back to sleep. She was stirring around 6:30, so I did put her in her swing. She slept until 8:15! I am so thankful that she is feeling better. We appreciate all the prayers!

I did take Marleigh to a chiropractor/kinesiologist yesterday. We decided we'd try anything! My cousin Jenni said that he really helped her two oldest boys. I guess they were colicky & after Mike worked on them, the were a ton better. Of course he didn't pop anything on her, but when we left his office, Marleigh feel asleep before we left the city limits of Great Bend. We fed her when we got home & then she slept for almost three and a half hours!!! She hasn't napped more than forty-five minutes in weeks! She was so relaxed, too.

I am just so thankful & relieved our sweet baby is feeling better!

Frustration

This morning Marleigh was extremely gassy, she was moaning in her sleep, was congested, & was getting a rash. I guess I got my sign. Marleigh can't handle the "liquid gold" either. Then around 1:15, my Uncle Bryan & Aunt Karen stopped by to say hi. I had just finished feeding Marleigh. About 10 minutes later, Marleigh just started screaming & crying. Her little tummy hurt. She was inconsolable. It just breaks my heart to see her like that. I immediately took her to the dr. When I go there, they mentioned all these "gentle" formuals to try. I went through Marleigh's whole history & told them that she couldn't handle any milk or soy based formula. Sometimes I feel like doctors & nursed think I'm stupid! I asked again about Neocate. The ARNP said they had never heard of it. She left for a few minutes to do some research. She came back & said that we should try it. It has no protein whatsoever. It just has amino acids. We ordered some from the pharmacist. I thought the alimentum was expensive.... whew!!! Like, I've said before though, I don't care what it costs as long as Marleigh feels better.

They put me on reglan to try to increase my breastmilk. It can have some not so fun side effects, but I'd gladly take them if it can help Marleigh.


Please pray for us. This is our last resort. I'm not sure what we're going to do if this doesn't work.

Still no formula answer, prayers needed!!!

This morning I called the pediatrician. Turns out that the ready to feed Alimentum is different than the powder. The powder contains corn starch. I guess a lot of babies can't handle the powder, but do quite well with the liquid. So, Marc went out & bought some today. $11 for 32oz! The nurse said it was called "liquid gold". Ha ha! We started her on it at 1:30 today, mixing it 1:2 with breastmilk. She ate it just fine. She hasn't curled into a ball like she did with the powder, but tonight again she was a wreck from about 7-11. The nurse said to keep her on it over night & let them know in the morning. I'm not sure if she was so fussy because of the formula, teething, or just a bad night. I wish I had a clear answer. We are almost out of frozen breastmilk & need a solution.

Please pray that Marleigh will give us a clear sign if she can handle it or not. And please pray we find a solution. Marleigh has been through so much in her short little life, I just hate to think that she isn't feeling well.

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On a lighter note, I played softball last night for the first time in 2 years! Let's just say it wasn't my best effort. Okay... it was horrible. We won & had fun, so that is the main thing. I joked that I gave Marleigh all my softball playing skills (which weren't much to begin with ). Marc watched Marleigh & watched Gunnar, too. Or maybe it was Gunnar that came over to watch Marc & Marleigh! We're so lucky to such a great Daddy & hubby!

No hypoallergenic, either.

Well, after 2 days of fighting with Marleigh to eat the nasty stuff, she can't handle it either. Same results: snotty, fussy, won't sleep more than 30 minutes, curling up, just plain M-I-S-E-R-A-B-L-E! So, we'll call the pediatrician on Monday. I think next is to try Neocate, which is even more expensive, but at this point, we'd pay anything. It is by perscription only, or I'd go buy some right now.

Sometimes I wonder why everything we do has to be so hard. It seems to never end.(And, yes, I am having a little pitty party right now. I'm sure I'll be over it by tomorrow.)

My happy baby is back!!!

Getting Marleigh off the soy did the trick! For about 5 days while she was on soy, Marleigh would only sleep for about 30-45 minutes at a time! Plus, I would have to fight her for 30 minutes just to get her to sleep. To make matters worse, Marc was gone for work for 3 of those days. From 6pm-11pm she was a trainwreck! The weird thing is other than in the evenings, she was all smiles.

The last two days, we've fallen asleep within 5 minutes. Our naps our lasting 1.5-2.5 ours & here's my favorite... she's slept from 10:30pm-4:30am! We are so lucky to have such a happy baby! I just feel bad that she didn't feel well for a few days.

No soy formula, either!

When Marleigh was in Wesley, they tried to give her formula. I was convinced she had an allergic reaction to it. Dr. Dorn had told us the only way to tell for sure was to put her back on it again. Of course we said no. I'm pretty sure we were right.

Well, at Marleigh's 6 month check up, I asked Dr. Williams about soy. Since Marleigh had so many meds when we came home, she got to where she didn't eat very well nursing, so I have been pumping, then bottle feeding her. Here in the last few weeks, I haven't been able to keep up with our little chunky monkey, so I thought I better introduce some soy slowly before our deep freezer full of milk ran out. Dr. Williams said to try it or to try the really expensive hypoallergenic formula. I think we can offically say that Marleigh doesn't like soy formula either. While she is teething, I think the formula has been the reason for her not sleeping, fussiness, & tummy troubles. I was reading on the internet & it said that somewhere between 35-50% of babies that can't tolerate milk formula won't be able to handle soy, either. Thank goodness she was only getting small amounts for a few days. She was getting a total of 4oz of soy a day & 32oz of breastmilk. It would have been a nightmare if we would have went cold turkey on the breastmilk. I guess we'll get some of the hypoallergenic stuff & give it a try.

Teething

Not a whole lot going on, other than Marleigh is really teething. It is her upper two teeth on the sides, not her front teeth. She has been a little fussy, but not too bad. It is obvious they are bothering her. She isn't sleeping & chewing on her hands constantly. I've tried teething rings, but they are too big for her little mouth. Tried the cold washcloth, but she ends up sucking on it until she gags. Dr. said we can't use teething tablets because they have something in them that suppresses the respiratory system. So, we're trying Tylenol. We finally did break down & get orajel. It was only as a last resort. She just wasn't able to sleep at all. Poor little thing was just exhausted.

Grandpa & Grandma Johnson were out to see us the first of last week. Of course Marleigh was full of smiles. It was good to see them again. They hadn't seen Marleigh since she was 5lbs! Now she's over 12!

I think I finally have all of our thank you's sent out. We tried to keep track of everything & write it down. Between home, Ronnie Mac, the hospital, & the funeral home I hope we haven't missed any. I did have a couple come back for wrong address. Please, please let me know if I have missed a thank you. We truly appreciate all the generosity so much & I would hate to have missed someone.