Some days are great. Some days are ordinary. And some days are like this. Elizabeth had a good day, but her momma had a pity party. I can usually find all the positive things going on in our life, but there are times when I can only focus on what's wrong; when I can't stand one more alarm; when I've fallen over one of the cords again; another hiccup episode... In those times, I have to step back and remember everything God has done for us and through us. Sometimes I have to keep stepping back to remember, especially if Elizabeth isn't showing the progress I think she should. Thankfully these pity parties don't last very long and only come around when I'm really tired.

Like I said, Elizabeth had a good today. She was a little fussy this evening, but was fine after her daddy picked her up.

The carnival is here! It's Pioneer Days Weekend here in Guymon. Stacy will take the girls to the parade on Saturday morning and then to the carnival. The girls have such a good time... if you don't make them ride the "Spinning Strawberries." That's the ride we pick when we're ready to go home!

Today was just an ordinary day. I like those. However, the gremlins are back in the pulse ox as of this morning. The PT called today and confessed that she forgot the appt. on Friday. I'm glad she forgot and not me. Some days I feel like I am losing my mind! We are rescheduled for May 12th at 3:30.

Stacy is going to a revival here in town. The girls and I are on our own for supper. Looks like cheese sticks and chicken strips. (We get to eat junk when he's gone. hehe)

Today I subbed in my class. It was great to be back with my kids. They received me well. However, someone posted two pictures: one of Stacy and Elizabeth and one of Baby LizBeth in the hospital. They were placed right under the Bible, so when we said our pledge to the Bible, I spotted them. It was hard to keep my emotions under control after that. To hear little five and six year olds request prayer for your baby is awesome. To hear them ask how Baby LizBeth is breathing and if she is growing and doing better is just about the sweetest thing in the world. What a blessing today was!

When I came home from school, LizBeth was in the floor playing. So I went over to talk to her, and, Stacy might not admit it, she smiled so big at me! Talk about feeling good about coming home!

She is trying so hard to turn over. She can get up on her side now, but she can't quiet stay there. I took one pic of her rolling over and then the camera went dead.

Katelyn threw her garden in the trash. Evidently, it didn't produce enough flowers. She and Sarah are wanting a fish aquarium. I wonder what might happen to the fish if they don't' meet Katelyn's expectations?!

It seems that so many things have happened in the last few days.
I took the big girls to the doctor on Wednesday: Katelyn has an ear infection and Sarah has an upper resp. infection. Thankfully, Elizabeth is still well.

On Thursday, I worked on Kindergarten Graduation stuff at school.

We were supposed to have PT on Friday, I think. She didn't come, so I'm wondering who had the dates mixed up; the PT or me? But, thankfully, LizBeth's personal trainer lives with us. Stacy had her doing squats and head control exercises.
Friday night was also Katelyn's Art Show. Her art teacher really does an excellent job setting up the shows. She picks a theme, decorates and serves homemade appetizers. The children display the art they've made this year and answer questions about it. It is really neat. The show is two hours, so Stacy and I went in shifts. Sarah stayed for the entire time.

Saturday we had "Clean Up the Girls' Room Morning!" They were so excited! And then we had "Pick Up All the Hair Stuff in the Bathroom Afternoon." They really enjoyed that too. But, you can walk in both places now. Mission accomplished.

Today, everyone went to church, and Elizabeth and I kicked back in the recliner for a nap. She is such a cuddle bug! When she woke up, she smiled at me twice! It was so sweet. After her noon feeding, I put her on her pallet in the floor with some toys. She wiggled herself off the pallet, pulled an elephant on her head and slapped a teddy bear. She was making noises (sounds a bit like Darth Vader) and having a good time. She played like that for about 45 minutes.

We had a freeze warning here last night! But it's already warmed back up today. I will be glad when summer gets here... all the time!

The last two days have been busy, busy, busy. I think I say that a lot. Tomorrow is looking like the same busy schedule. Elizabeth has REAL PT (I think) at 1:30 pm, I have a meeting at 3:00 and Katelyn has her art show from 6:00-8:30.

Elizabeth is still doing well. Her tummy seems to be hurting her a bit more. And the hiccups are back. They are not always "dangerous", but they are sometimes.

Sarah lost another tooth. She pulled it herself! But she did drop it down the drain in the bathroom sink. Her tears stopped when I assured her that the tooth fairy would still come even without a tooth under her pillow. That's when big sister jumped in to tell her that mom and dad were the tooth fairy and mom keeps all the teeth in her jewelry box. Sarah said it wasn't true, but the tooth fairy forgot, so "she'll" have to leave the dollar tonight.

It was another gorgeous day! Please continue to pray for LizBeth and our family. Thank you.

The last two days have been busy. The girls had a music program tonight. Stacy went and I stayed home with Elizabeth. However, I was able to watch them practice today at school. They sing so good! There is just something about children singing that puts a huge smile on your face.

Elizabeth and I stayed home and sorted through baby clothes. She needs BIGGER summer clothes. Since she wears the HME, her clothes do not necessarily need snaps up to the neck. Of course, she has some new clothes just for her, but we also like hand-me-downs. It's hard to believe the clothes LizBeth is wearing now once fit Katelyn and Sarah.

She is trying to try to roll over. She will throw one arm and one leg over her body, but can't quiet make the turn yet. She's having a little trouble with air in her tummy. We "burped" her for about 15 minutes last night. (We burp her by hooking a tube up to her g-button and attaching a large syringe to the top of the tube. This allows the air in her tummy to rise.) It really does make a burp sound, which we all find amusing. We are burping her a lot more now.

The weather has been gorgeous here. Today I took a long walk on accident. I locked my keys in the van at the Post Office and had to walk home to get Stacy's keys and then walk back. The whole day pretty much went like that!

Well, yesterday flew in and out very quickly. LizBeth had a very good day again. She no longer bradys after the hiccups, and she didn't even have any last night. She has a new toy to play with and prefers to lay on her pallet rather than her bed.

Summer weather is here. I finally turned the air on last night. It was 81 degrees in this house! (Too hot for Stacy, I mean the baby.)

We met with LizBeth's pediatrician today. She had a good check-up. She weighs 13.10# and is 23 1/2" long! That's a gain of 1.6# and 1/4"! Her lungs sounded clear and she had no fever. Our doctor told us we didn't have to come back and see him for a month. (But he said I could call anytime I had questions.) LizBeth's thrush is pretty much gone. We have a few more days of Niastatin left.

Today was gorgeous! We have daylight until after 9:00 pm during the summer. The girls think we are such mean parents for putting them to bed while the sun is still up. Mind you, they go to bed at 9:15.

No more doctor's visits until May 7 and 8th when we go to OKC. Please begin praying for these visits. 1. The two tests (CCHS and Pompe's) will come back negative; 2. Stacy and I will make the right decisions if other tests are to be run; 3. Elizabeth will get her trach out soon.

Today's doctor visit went well. He said her stoma looked good. She handled everything well. However, on the way home the girls and I were chatting a little to loudly, and disturbed the Princess. She cried all the way home... and then some! Anyway, after changing, feeding, suctioning and a little cuddle time with her sisters, she was okay. LizBeth had a bit of a temp this afternoon, but not this evening. We go to her pediatricain tomorrow morning.

Please pray for a little boy by the name of Ryley. He was one of Elizabeth's "neighbors" in the NICU. His momma emailed me today, and said he wasn't doing well.

The weather here was cold and nasty today. Tomorrow is supposed to be better. I hope so!

Elizabeth had a great day! While wearing her mist collar, her O2 sats were 97-99%. No breath-holding spells or temper tantrums. Whoo-Hoo! Because of her thrush, she hasn't been eating as much from the bottle, but that's improving. She was awake so much today. She had the hiccups several times, but NO BRADYS! She's not desatting every time either. Thank you for your prayers about the hiccups. Tomorrow we go to the doctor here in town that cauterized LizBeth's stoma two weeks ago. He wants to check on her. So, we'll start getting ready tonight!

The tooth fairy came to visit Sarah last night. "He" gave the dollar and left the tooth. Sarah didn't mind. She took her tooth to school today for everyone to see.

Katelyn's garden is two days old now. She's very diligent in her care for it. She's also pretty good about helping me take care of her baby sister. A few days ago, she was playing with LizBeth and said, "Mom, I think she needs to be suctioned." She also primed the feeding pump tonight and helped with the bath. Sarah likes to hold the baby and go get things for me. They are good little helpers and Elizabeth thinks they're great!

Today seemed so hectic. Maybe because it was tax day, trach change day and driver's license renewal day (for Stacy). We should all sleep good tonight.

Elizabeth had a great night last night. The monitors behaved too. This morning, however, the gremlins came back. We have to put the probe on her hand because her foot is too chubby, but her fingers aren't big enough. So when she's awake, and moving around, the machine just goes nuts! Oh well, better the monitor than her.

Sarah pulled her tooth tonight! She lost two on the bottom earlier this year. But, today she pulled one of her top ones. She was so excited. I was going to take a picture and post it, but she went to sleep at 7:30.

Katelyn is growing a little flower garden. It's so cute. We're going to post pictures of its progress on here too. I hope she doesn't inherit her momma's flower ability. It seems I can only grow weeds.

PT came this afternoon. More paperwork! Elizabeth tolerated them well this time. No hiccups. She tried to eat from her bottle, but we noticed she has thrush again. So , I called the doctor and he prescribed Niastatin. She's had that before in the hospital and responds well to it.

Our monitors had gremlins in them today. Out of the blue, they would alarm. I would check on LizBeth and she would be perfectly fine. This went on for most of the morning. This evening has been better.

I think I am getting a sty on my eye. Sarah told me it looked a little swollen this morning. I was thinking of getting a pirate patch to wear over it. Katelyn was horrified that I might take her to school wearing one.

It was a beautiful day today. After taking the girls to school, I went walking on a nearby track. It felt good to be outside. I took Elizabeth outside once. She wasn't too impressed. The Princess seems to prefer looking outside through the window. She acts like it might be windy out there.

Today was bath day! All three Ross girls are squeaky clean now.

Stacy finished up his sermon series, "Life Lessons From the NICU." I was able to read them before he preached. Talk about hitting close to home!

Tomorrow is the actual Physical Therapy (PT). We start at 1:30. I'm wondering if Elizabeth will participate or "go to sleep."

Only 24 more days of school! The girls are so excited. They are planning the summer for us. I'm not sure we'll be travelling much though. Going somewhere with LizBeth requires us to take the apnea monitor, the pulse ox, the suction machine, trach care bag and feeding pump bag. We put all these things on a suitcase dolly. Stacy's job is to carry the baby and pull the dolly. My job is to carry the real diaper bag (meaning it has diapers and bottles in it), pull the portable O2 tank and open the doors. We have a pretty good system down, but a cross country vacation trip may be a bit much.

Laundry, laundry, laundry. Who would have thought one more little person would make so much laundry? And make it pile up so quickly! We have had yet another good day. LizBeth did have one brady after the hiccups today. But only one!

She has been staying awake quiet a bit the past two days. She likes to lay on her pallet in the floor and play with her sisiters. I know she would be "talking" if she didn't have the trach. Sometimes she can make a squeak around her trach. It's so funny.

She's been eating really well. Can you tell by the cheeks? She's taking her bottle about five out of eight feedings... and eating it all.

Oh, to bed we must go. The girls are camping out in the living room with Elizabeth and me tonight. We're blowing up the air mattress. Whoo-Hoo! God has given us the greatest girls in the world. They are all little blessings from Heaven.

Today has felt like Saturday. The girls were home with us today. The weather wasn't too nice, so we spent our time watching movies and doing an occasional bit of housework.

I'm afraid that Stacy and I are getting sick. Please pray that we will get well. All three girls are doing fine. Elizabeth has been awake practically the whole day. She loves to take a bath. Katelyn and Sarah like to help.

Lizbeth will finish her antibiotics tonight at 11:00. She's stil on Iron and Polyvisol (vitamins for babies). I have no idea how babies without a g-button can take Polyvisol. Have you ever smelled that? Whew. In Amarillo, Elizabeth was put on caffeine to help with her apnea episodes. It was suggested that we put the caffeine in about 5 cc's of formula and give it to her that way. So we did... once. This was her reaction:

I can only imagine how she would feel about the vitamins.

Today was another good day. No bradys! Not even following the hiccups!
Elizabeth woke up to play from 10:30-12:00 this morning. She likes her Prayer Bear. Today she reached out and grabbed it all by herself. It was so precious.

No appointments this week. The girls are out of school tomorrow. We plan on having fun and cleaning house. They do make awesome babysitters, too!

Yesterday Elizabeth's heater for her trach collar came in! Whoo-Hoo! In the hospital, she was on a heated trach collar (it just fits around her trach and blows in heated and moistened air), and tolerated it just fine. When we got home, she didn't have a heater, so the air was moist and cold. She kicked her feet and held her breath and turned her head to get away from it. Now that we have her heater, she will wear her collar. At 2 1/2 months old, she decides if she's going to wear a trach collar or not? What are Stacy and I in for?

She's been pretty sleepy today. So have I. We had monitor errors galore last night. She also popped her HME (Heat and Moisture Exchange) off several times. The HME fits over the end of her trach and looks like a little bow tie. It does the same thing as the trach collar, but offers her more mobility.

Elizabeth likes to wake up at 12:00 and 3:00 am to play. We've had to have the talk about days are for playing and nights are for sleeping. I think she's ignoring me.

Katelyn and Sarah have informed me that there are only 26 days of school left! Wow!

I went to visit at the school today. Boy, do I miss teaching. I don't know if there is any other place in the world, besides home, where you can be greeted with leg hugs. I'm hoping to help with Kindergarten Graduation again this year.

Well, it's Stacy's night tonight. I think I'm going to bed. :-)

I apologize for using NICU (Neonatal Intensive Care Unit) abbreviations in my previous posts. Prior to living in the NICU for eight weeks, I didn't even know they had their own language. Now I talk like I've majored it.

Anyway, today was a good day. The Physical Therapist, Speech Therapist and Therapy Coordinator came for Elizabeth's evaluation this morning. She starts physical therapy next Monday at 1:30, probably on a weekly basis. During her evaluation, Elizabeth acted honery. She closed her eyes and avoided them all. She got the hiccups and followed them up with a desat and brady. You know that makes everyone a little bit nervous. We all seemed to agree that Elizabeth does NOT like visitors. She has the "dangerous hiccups" more when guests are here. I read at Kid'sHealth.com that the hiccups can be triggered by being nervous or upset. So, I asked some other NICU parents about this. Was it possible that Elizabeth was upset, or was I just over analyzing again? Every parent responded that their child had an aversion to strangers when they came home. Anywhere from six months to a year.

We discovered that one of the new g-tubes (tube that connects to her feeding button) did not fit properly after we started the feeding. Formula soaked Elizabeth. So she had a bath, which is a long procedure, and we got another tube to finish her feeding.

We can't decide if Elizabeth is starting to brady (bradycardia- where her heart rate drops below 80) or not. In the past the only time she had a brady was when she had a desat (desaturation - when her oxygen level drops below 80%). Now we're not sure if the bradys are real or a monitor error. I changed several different things on the monitor. So now, we'll just wait and see.

The girls and I went out to eat with some friends tonight. It was fun. Stacy stayed home to babysit.

I have posted some new pictures with the grandparents in them. Can you guess which parents belong to me and which ones belong to Stacy? It's pretty tricky!

Monday. Mondays are hard on us. Katelyn and Sarah feel that school is an injustice. All they do is work and work and work... and play a little. School lasts for 20 hours according to Sarah.

Elizabeth had a good night. She's doing great right now. Yesterday she tried to hold her head up! She did pretty good. That' s one thing the neuros were concerned about was her lack of neck control. We start PT tomorrow at 9:00 am. I'm excited. I'm not sure if the Princess will be though. One PT in the hospital made her cry. He sat her up and had her to bear weight on her arm. She threw her head back, let out a wail (no sound came out, but she got her point across) and pouted until he left. Evidently, when you have the Princess Syndrome, you don't like PT.

Stacy is off to the gym. In the hospital, he was LizBeth's personal trainer. She bench pressed a tube of diaper cream and curled empty bottles. Sometimes he made her do squats.

LizBeth just had a case of the hiccups. No brady following. Only a small desat that she brought up herself with a cough. Whew.

Looks like it's going to be another nice day here.

LizBeth

Elizabeth Nichole Ross was born January 18, 2008 at 6:30 pm. She weighed 7.5 and was 20" long. She began having trouble at about 24 hours old. At 72 hours, we were transferred to a NICU. After a week, we were transferred to another one. After seven weeks of normal or negative test results, we were able to return home with a trach, a fundo and a g-button. For those of you familiar with LizBeth, thank you so very much for your prayers, gifts, cards and visits. God has been so good to us. He has blessed us through His people.

Since Stacy kept everyone updated during our hospital stay, I thought I would try to keep you updated from the home front.

We have been home for 19 days now. "Whoo-Hoo!", to quote Stacy. LizBeth is doing very well. Her room is currently in the living room. Her bed, monitors, humidifiers, O2 Concentrator, portable O2 tank, suction machine, feeding pump with IV pole and all-around baby care needs are in here too.

We went to the doctor on Friday and she weighs 12.4# and is 231/4" long. That's 1# and 1/4" in two weeks. Needless to say, weight gain is not an issue for us right now!

She's on Bactrim now for a possible trach site infection. She also had the area around her g-button cauterized. A rather large granuloma had formed. The button fits so much better now. No more leaking and no more redness.

She's trying to hold her head up now. She is very interested in her sisters too. They think she's pretty cool. Although, LizBeth does like to pull hair...especially Sarah's. We start PT on Tuesday.

She is eating well. Taking 20-60 ccs at about 1/2 the feedings. We do not need O2 for evey PO feed anymore. She's also up to 100 ccs each feed every three hours.

No central apnea since we've been home! And only one obstructive, due to her rather large double chin covering her trach.

Her hiccups are still considered "dangerous" by us. She bradys and desats when they are over. We have asked doctors and nurses for help. We've searched the internet. We've posted on message boards and no one knows what's going on. It seems that Miss Elizabeth is just being her honery self. We tried venting the g-button. We tried decreasing PO feeds. We tried postioning. We even made her hold her arms above her head, which she did NOT appreciate. Twice now I have held her in an upright position in the rocking chair and comforted her during the hiccups. No bradys afterwards and she only dropped to 84 in her sats.

Please pray that these hiccups will go away, or that we can find a way to help prevent the bradys and desats.

We meet with her City doctors in May. We meet with her Pulmonologist in July. Until then, we are going to our doctor every two weeks. Please continue to pray for our "nursing wisdom."

Thank you