What's today? My due date! How could I forget...

Today is the day I was supposed to give birth to Lorena.  I had it planned so perfectly!  I had done my research and picked Dr Thompson to be my ob/gyn.  We would have Lorena in Clay Center KS, just a short half hour drive from home.  I would have her on a Friday and bring her home on the weekend. That's how it works for everybody right?   God did have other plans.  If you need to know details refer to my first post from Stormont Vail hospital on 9/1/2012. 

Lorena is 87 days old today and her adjusted age is now 1 day.  She finally fits into the onesie we got from the hospital the day she was born.  She weighed 7 pounds 4 ounces on Thursday, 3 times the size she was at birth.

Lorena at birth 2 pounds 7.9 ounces

Playing with her animals

Onesie from Stormont Vail  7 pounds 4 ounces

His plans are not what we always want them to be.  I wish we wouldn't have needed extra help to get pregnant, or had a miscarriage earlier this year, or had Lorena 3 months early.  Dan and I want Lorena to have siblings, but will be scared to try again.  We will cross that bridge when we get to it.  Right now we are enjoying having Lorena at home.  Having a preemie changes you.  We are very over protective.  If Lorena gets RSV, a cough, or flu, she could end up back in the hospital on a ventilator...so we are constantly worried about her getting sick.  Lorena is starting to look like a "normal" baby but her immune system is still weak from being premature.  I never thought much about getting vacinations before I had Lorena but now I understand the importance of them.  Vacinnes protect those that are vacinated and also protect those who can't get vacinated, like small children and those with weakened immune systems.  I also never thought much about germs...this is especially true for Dan.  We have both become obsessed with hand sanitizer and agree that it is a big reason we have been healthy this fall.  We are so thankful for a healthy month at home.  Eventually we will get Lorena out more but she is still under house arrest for the time being.

Posing for the camera

Crazy eyes

We had to take Lorena to Topeka and Kansas City yesterday for doctor appointments.  She had her second round of Synagis.  It is prescription medication that is used to prevent serious lung disease caused by RSV (respiratory syncytial virus).  She will get a shot of it each month for the next 4 months.  She is such a trooper when she gets shots!  She only cried for about 5 seconds max.  Then her second appointment for the day was with her eye doctor.  She saw no signs of ROP and Lorena's eyes are developing normally!  We don't have to go back for 4 months.  Preemies have a higher risk for being near or far sighted and having cross eyes, so the doctor wants to evaluate her next spring.  I'm not too worried about her...I already assumed she would need glasses since I am extremely near sighted and have had glasses since age 6.  Then we headed to KC for her cardiologist appointment.  Lorena has had a PDA, patent ductus arteriosus, since birth.  If the ductus arteriosus (which is the connection between the pulmonary artery and aorta) doesn't close at birth, it can cause a heart murmur.  Her echo showed a heart murmur but Dr Parthiban couldn't hear it during the exam.  She said that it is so small that she thinks it will close on its own and really wasn't too concerned about it at all.  We go back in 6 months for a checkup.  I think she is just taking after her Grandpa Ernie who had a heart murmur most of his life. :-)




Purple outfit from Grandma Cox

First Thanksgiving

Lorena spent her first Thanksgiving at home.  Dan and I decided it was still too early to get her out of the house.  We will eventually start taking her places but for now we are pretty much homebound except for doctor's visits.  Her Aunt Maria, or Auntie Maria as she would rather be called, visited us from Illinois. Maria had never seen Lorena before and was super excited to get to stay with us for a few days. Maria was holding her one night and said "isn't she precious." Then Lorena proceeded to spit up her entire feeding all over Maria's lap. I thought it was pretty funny but Auntie Maria didn't think so.

 

Playing with Auntie Maria



Family Picture

 

Lorena has been gaining about an ounce a day!  This is very good weight gain.  Her visit with Dr Thompson on 11/20 had her at 6 pounds 10.5 ounces.  Today at Dr Warren's she weighed in at 7 pounds 2.3 ounces.  She is 19 1/2 inches long.  Lorena is starting to develop a personality.  She still likes to fuss and grunt sometimes, but for the most part she is a great baby. 

Dancing in her sleep

Lorena had her first visit with the Infant Toddler Program today.  They evaluated her and will make periodic visits to check on her development.  One role of the Infant Toddler program is to set goals and see if the infant meets these goals.  Her goals for the next few weeks are to sleep and gain weight!  Should be pretty easy for most infants (and probably something that some parents take for granted) but so very important for preemies.  I haven't been too worried about setting development goals for Lorena.  I am still treating her like a newborn (even though she is almost 3 months old).  I have decided not to compare her to a 3 month old that was born full term because there is no need to compare.  All preemies meet their milestones at different times so there is no need to compare her to other preemies either.  Each step a preemie takes is a miracle no matter when that step occurs.   Lorena will meet her goals when she decides too! I have always had high hopes for her and will continue to do so.  For now, we have a baby girl who is continuing to exceed expectations of her parents and doctors and we couldn't be more proud of her. 

 



At the doctor today 11/27/12 - 7 pounds 2.3 ounces and growing

 

 

Growing like A Weed

Lorena is out of preemie diapers and clothes and into her newborn sizes! Some of the newborn stuff is still plenty big on Lorena, but she will fill out soon. She is growing like a weed which was pretty easy to do this year in Kansas. As most of you know, Kansas and most of the midwest was (and still is) in a major drought in 2012. We had little rainfall, scorching temperatures, and average to poor yields for our crops.  It is very difficult to control weeds in a drought year because herbicides don't work as well when there is no rain.  Many people get confused on how to pronounces Lorena's name.  It is pronounced Lo-ray-na...the middle sylable sounds like "rain"  Just remember that we had no rain the year Lorena was born and that way you will always know how to pronounce her name. :-)

I thought she had a cold on Tuesday so I kind of freaked out.  The doctor said everything was fine and just told me to suction out her snot a few times a day if needed.  She weiged 6 pound 1.5 ounces on Tuesday.  Lorena also had her 2 month shots on Wednesday.  There were many kids, toys, and germs in the Health Department when we went to get her shots so that was a new experience for me.  Lorena's carseat was covered at all times but germy places have a tendency to make me very anxious now!  She was a trooper and only cried for about 5 seconds after her shots.  It is very important to immunize  children and adults (read some of my prior posts) to keep Lorena and other babies safe this winter!

Thursday Lorena went to Topeka to her her pediatric opthamologist.  She still has slight ROP in one of her eyes so we will go back in a few weeks for another checkup.  She had a slight fever on Thursday from her shots but Tylenol helped that out quickly.  I got to see two of the other preemie moms I met in the NICU while at the doctors office.  Their babies are truly miracle babies...born 3 weeks and 5 weeks gestational age earlier than Lorena. 

Lorena had a visit from the Washington County Health Department nurse on Friday afternoon.  She was weighed again and was up to 6 pound 5 ounces!  She has been gaining about an ounce a day since she came home.  I can't believe she has been home for 2 weeks now.  The days fly by but the nights have a tendency to drag.  Lorena didn't sleep much during the night for about a week...we think her days and nights were mixed up. She was great for the first week home but her sleeping patterns were messed up the second week.   Dan and I are just willing to try anything at this point to get some sleep at night.  She would scream when we put her in her crib.  We tried running a radio, fan, nightlight, swaddle, etc but nothing seemed to help.  We have had her sleep in her swing (in the reclined position) for the past few nights and it seems to be working.  I just hope the transition back to her crib won't be too difficult but am thankful for the hours of sleep we are getting now. She is still up every three hours to eat. 

Tonight is the Linn Lutheran School Benefit Auction.  It is so much fun and supports such an amazing school that Lorena will attend someday.  I'm sad I will have to miss it but hopefully we can go as a family next year. 

Smiling in her sleep - Thanks Shawna for letting us borrow a preemie outfit

bright eyed again



Sleepy again in her outfit from Grandma Cindy

Swaddled and all cozy on her quilt from Grandma Penny

So far so good

Lorena has been home for over a week now.  Honestly, it is hard to believe!  It seems pretty normal to have her here with us so that tells me we are getting used to having a newborn in the house.  She eats about every 3 hours during the day and about every 4 hours during the night.  Sometimes she still has some problems with eating, but she is improving everyday.  I am tired but I guess that is to be expected with a newborn. 

We must still treat her as a newborn.  We haven't let anyone touch or hold her since she came home.  I will probably relax these rules in a month or so, but we just have to be extra careful because her immunities are still premature.  We want everyone to see her but it is best to wait to visit when she is older and stronger.

If you work with me or know me very well, I love following the rules, doing things the right way, or "doing things they way you are supposed to do them."  I wish Lorena had an instruction manual.  Not that I would read it though, I would have Dan read it and give me a quick version of what to do.  Dan loves reading instruction manuals (he reads manuals for all the tractors while letting the GPS do the steering).  This seems odd to me and would be very boring, but he truly enjoys reading instructions and knowing how to fix things!  I remember a few winters ago, Dan got a used oil burner for the shop.  He had to do some repairs but didn't have an intruction manual.  He took the whole thing apart and built a diagram of all the parts so he knew how to put it back together.  Dan found one dealer who helped him over the phone to get the burner going again.  In all his years dealing with these oil burners, the guy told Dan he had never seen someone put one back together without the intruction manual.  My husband is much smarter than I am at a lot of things.  I do have the Masters Degree in the household but I still can't understand some basic things that come easy to Dan.  Not sure how I got side tracked about Dan, must be lack of sleep...he has been doing a great job with Lorena and I wanted to give him some praise..even though he doesn't read the blog :-). 

Lorena has a busy week coming up.  She is getting her 2 month shots tomorrow.  The NICU suggests keeping preemies on the same schedule as full term infants.  We just have to to the Health Department in Washington for these vacinnations.  On Thursday we have to go to the pediatric opthamologist in Topeka to check out Lorena's ROP (retinopathy of prematurity).  She will look at Lorena's retinas and hopefully things will check out ok. 

Thanks again for all the thoughts and prayers along the way.  Lorena has come so far in her short life and is a blessing to our family. 



Love this outfit but it is getting too small



Love this face

Love this face too



Getting ready to eat

Getting ready to eat again...basically that's all she does is eat!

High Maintenance Girl

I was talking to my co-worker Dan on the phone this morning about how Lorena is a high maintenance girl already.  Jokingly, Dan replied "aren't you (meaning women in general) all?"  He's right, most of us are high maintenance at least once in our lives.  I think of myself as low maintenance for the most part but mu husband found out this summer that I needed a lot of support and encouragement (basically I was high maintenance emotionally).

It's true, Lorena does have a lot of needs right now.  She sleeps pretty well and is eating more each day.  She eat about 16 ounces a day now (half preemie formula and half breast milk).  On Tuesday at her checkup, Lorena weighed 5 pounds 10.5 ounces...so she had gained about an ounce a day since she left the NICU.  Dr. T thought this was excellent weight gain.  Her immunities are still premature.  Her NICU doctor and Dr. T suggested that everyone get the flu shot and whooping cough (pertussis) shot if they wanted to be around her.  Whooping cough is really scary.  There have already been 500 cases diagnosed in Kansas already this year.  At this time last year there were only 150 cases.  There have been outbreaks in Abilene and Marysville so it is already in our backyard.  Also, once you get the whooping cough vaccine, it takes several weeks to start working.  Whooping cough can sound like a slight cough in an adult but can have deadly consequences to a baby.  Therefore, I can't encourage all of you enought to get your vacinations...not just for Lorena, but for all the babies out there.  I also have this sign hanging on our door. 

Just in November, I have to take her to two checkups with her local doctor, health department to get vaccines, Topeka to see her eye doctor and get her RSV antibody shot, and Kansas City to see her cardiologist (to check her heart murmur).  She will get the RSV shot every months for 4 or 5 months.  I don't mind all the running around, I just hope there is good weather (and I sound like my Mom and Aunt Becky when I say that, they always worry about the weather).

I have been busy taking pictures of her all day it seems.  These are some of my favorites, including the last one...her first smile caught on camera.

Wide awake

Looks like a glow worm to me

wearing her hat with a purse on it - from Joyce and Julie

ready to eat

outfit from Sue

Her first smile caught on camera! 

HOME

Lorena is home!  We spent Friday night in the family room at the NICU to get used to taking care of Lorena.  We did get some sleep and the night went pretty well.  Saturday morning was filled with paperwork, final checkups with doctors, and cleaning out her room (I don't know how Lorena accumulated so much stuff..I guess she overpacks like I do whenever I'm going somewhere).  I will never forget Room 239.  We had many good days (and a few bad ones) in that room.  I'm so thankful for all the nurses in the NICU.  They were all pretty amazing.  Lorena's stay in the NICU lasted 59 days.  She has been such a trooper this whole time.  Along the way the nurses have given her several nick names.  At first they called her a "fiesty girl" because she liked to kick her legs and arms.  Just last week they called her a "diva" because she fussed a lot and liked talking in her sleep.

Dan's cousin Mary brought Lorena an angel figurine the day I went into labor (and didn't know I was) and it stayed in Room 239 with her.  Guardian angels have been with Lorena even before she was born.  The nurse yesterday told us that they say babies "talk to angels" when they are talking in their sleep.  That made me smile.  Besides guardian angels on her side, Lorena has had so many warm thoughts and prayers from so many people.  Prayer truly works and has helped keep us strong (and sane) throughout Lorena's stay.  Dan and I truly appreciate it.  We are so blessed to have great family, friends, neighbors, co-workers, and even people we have never met that have prayed for Lorena.

Dan and I feel pretty lucky to have a courageous, fiesty diva like Lorena to call "ours."  It's a whole new life with Lorena home but Dan and I are loving it so far.  ~ Lydia, Dan, and Lorena

Getting ready to leave

Picture with Mommy

After Diaper change in Manhattan in the Walgreens parking lot

Ready to go