Lorena's Adventures

It has been two weeks since my last blog post.  Lots has happened since then.  Lorena has been out to the doctor and a few other places but we are still keeping her at home 99% of the time.  We still don't let many people hold her yet because we don't want her to get sick.  I am back to work and my mother-in-law Cindy is taking care of Lorena when I'm on the road.  I am so thankful she can come watch her since Lorena is still too susceptible to germs and can't go to daycare yet.  It is good to be back to work.  I know I have mentioned this multiple times but I am so thankful to work for DCIS.  I have great bosses and  co-workers that have stepped up and worked overtime to help me this fall/winter.  I hope they know how much I appreciate them.  I couldn't ask to work for a better company.

On Tuesday (December 11) Lorena weighed 8 pounds 3.5 ounces at her checkup with Dr Linda. She is growing steadily, as she has gained about a pound every two weeks since she has been home. She is now 20.3 inches long. She seems big to me but I know a lot of babies are born this big! We are thankful that she has been healthy since we have been home.  Lorena won't be visiting Santa this year which makes me sad but she will get to see him next year for sure.

Not much time to write as I am trying to make some Christmas presents, cook Dan supper, feed Lorena, pump for Lorena, keep the house clean and tidy, keep myself looking presentable, etc....but here is a quick update on our little Lorena's life.



Lorena got to meet one of her Great Grandmas - Elsie Hiesterman

Lorena had visitors from Illinois! My Mom, Aunt Becky and Uncle Danny came to help me with some housework and take care of Lorena. It was so nice to have them here with us. They didn't want to leave Lorena because they love her so much  Her is a picture of Uncle Danny, Aunt Becky, Mom, and Lorena Ruth



Aunt Kate got to hold Lorena for the first time!  She was even wearing her husband's favorite baseball cap that day! :-)



Lorena tried on some Christmas dresses.  This one is from Grandma Cindy



I bought this one for her.  We have decided she looks good in purple.



Lorena with her wonderful Doctor - Dr. Linda Warren.  She is wearing a Kansas Jayhawk shirt though.



Lorena playing with her animals.  She doesn't really play with them per say, but she will someday!



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

So they call her a Diva

How can it be Halloween already?  On September 6 I couldn't imagine being here already.   Lorena has been in the NICU 55 days.  It has flown by so fast.

Lorena weighed just over 5 pounds on Saturday night, 5 pounds 1.9 ounces on Sunday night, 5 pounds 2.2 ounces on Monday night, and on Tuesday night she weighed 5 pounds 2.5 ounces.  She has been gaining steadily but not at the rate they would like.  Therefore, the nutritionist (Rachel) decided to change feedings to 4 bottles of formula and 4 bottles of breast milk a day.  She receives vitamins in some of the feedings but is no longer getting protein supplements in the milk.  They are hoping this formula will help her put on more weight in the coming days.  She is still taking about 1/2 to 2/3 of feedings by bottle and the rest through her tube.  Her meals are increasing and she is now getting 49 mils (about 1 2/3 ounces) each feeding.

I had been mentally preparing for the day that my milk supply would fail to keep up with her but it was hard to take when it finally happened this week.  I have a condition which causes low milk supply, (also the same condition that made it harder for us to conceive).  This condition is called Polycystic ovary syndrome (PCOS) and about 10% of women have it.  It causes a hormonal imbalance that may lead to cysts on the ovaries, trouble getting pregnant, weight gain, and apparently low milk supply!  Some women with PCOS overproduce milk, some have normal supply, and some (like me) have a relatively low supply.  I know I have done everything I can to help my supply:  fenugreek tablets, mother's milk tea, lots of water, brewers yeast tablets, actual brewers yeast from drinking beer (I may have over done this one a few times), eating more fruits and vegetables, oatmeal (cookies mainly), but nothing seems to help.  I have also tried two prescriptions (reglun and domeridone), and domperidone actually has doubled my milk supply which I am very thankful for.  But all the frozen milk has been used in the NICU and we are now relying on my current supply.  It just makes me feel like a failure not to be able to supply food to my baby.  All of the nurses have been supportive and are proud of me for pumping this long, and I will continue to pump for a while.  My sister Maria reminded me today that I have a beautiful healthy baby girl and that it isn't the end of the world if I have to give her formula.  I need to be reminded of this sometimes!

She is going to do things on her own time (as she always has done).  So she will be able to go home once she takes all her feedings with a bottle.  The nurses have called her a "diva" recently because she likes to cry and fuss a lot.  I hope Dan is prepared for having a daughter like Lorena. ;-)

her tiny hands

sleepy girl

sleepy girl again

Busy Day including a trip to the Topeka Police Department

Lorena continues to grow.  She weighed 4 pounds 14 ounces on Friday and on Saturday she was up to 4 pounds 14.9 ounces.  We were there all day today but I forgot to ask how much she weighed.  Nonetheless, I'm sure she is almost to the 5 pound mark.

In her cute skeleton Halloween onesie

with Mommy.  I look tired today.

with Daddy.  Note she is crying and he is doing great with her :-)

Lorena is doing well.  Deb says she may be able to go home end of this week at the earliest!  I'm trying to not get my hopes up but I can't help it...I think she will be home this week. :-)  The day she was born, the doctors and nurses told us that she would have many ups and downs in the NICU.  I remember Dan and I shaking our heads (after the doctors left) and saying that Lorena wouldn't have any downs.  It has been over 7 weeks and she honestly hasn't had any down days!  She stumbled at first to digest food, breathe without support, etc., but she has always surpassed each milestone with flying colors.  The first few weeks she did have an infection though, but Dan and I were too naive to realize how sick she really was.  I am thankful for being naive for once!  Lorena was very festive today.  She had a pink Halloween onesie on when we got there and we changed her into the adorable pumpkin outfit that Sarah Neely (a good family friend) gave us.

Lorena had an echo done on her heart on Thursday to check on the murmur she has had since birth.  The heart valves in a full term baby usually close soon after birth. Most preemies have heart murmurs from being premature, and most will heal without intervention.  Lorena still has a slight heart murmur which the doctors will continue to watch.  She will need a checkup with the pediatric cardiologist in a month (we may have to go to KC for that) to see if it closes on its own.  She also has a umbilical hernia which is common in preemies.  It will probably heal itself but if not, she may have to have surgery down the road.

Lorena had visitors today too.  Dan Hoffman (my co-worker who has been AWESOME and taken over a lot of my claim load) and his wife Jenni stopped by to meet Lorena.  They are going to have a little boy this December and are naming him Heston (such a cute name!).  I can already tell they will be great parents.

Lorena didn't like breastfeeding too much but took most of the bottles I gave her today.  She gets about 45 mils every feeding, which is about 12 ounces a day.  She gets vitamins and some protein powder in several bottles.  2 bottles are formula and 6 bottles are breastmilk.  She is doing well being off the caffeine too.  She also got a new crib today.

New Crib today

We brought our car seat in today.  She will have to have a "car seat test" before she can go home.  Lorena will be required to sit in the car seat for 2 hours.  Her heart rate and oxygen will be monitored and they will watch how she holds her head for an extended period of time. If she doesn't pass, she will have to go home in a car bed.  Let's hope she passes this week!

Today was a good day...until we got in our car to leave.  Someone had hit our car in the parking garage!  My front passenger side blinker light was knocked out, as well as scratches and dents on the bumper.  A security guard saw the accident but the car drove away.  They are going to go over the security video tomorrow.  We had to go to the Topeka Police Department to file a report.  Dan and I have definitely realized the importance of insurance this fall.

Thanks Sarah Neely for the Halloween pumpkin outfit!

Close up of sleepy baby

7 Weeks

Lorena has had a pretty good week.  She has had lots of tests this week.  She passed her hearing test on Tuesday (she didn't pass it the first time several weeks ago).  She also had another head sonogram to look for bleeds and it looked good.  She has had several sonograms during her NICU stay, and all have been good, but they just like to repeat tests to be sure.  She also had another eye exam.  Lorena still has slight ROP (her eyes just aren't developed yet) and will get it re-checked in a week.  She has been off caffeine and has been doing well.  Just a few desaturations here and there but nothing to get worked up about.  She has also been off milk fortifiers for several days.  She weighed 4 pounds 13 1/2 ounces on Sunday night, but lost about an ounce on Monday's weigh in.  She regained that ounce by Tuesday night but didn't gain any by Wednesday.  So today she weighed 4 pounds 13 1/2 ounces.  Lorena has been on the diet she will go home on for several days (6 breastmilk bottles and 2 formula bottles).  But since she hasn't been gaining weight, they have decided to put protein powder in her feedings to help bulk her up.  Hopefully this will help her gain more weight. 

Lorena has had a slight heart murmur since she was born.  Deb ordered a echo for her today to check it again.  It isn't uncommon for preemies to have murmurs but they usually go away with time.  We will know the results on Friday so we are praying that her murmur has disappeared.

Lorena is also seen by a physical therapist to check her legs.  In the womb, babies kick and have resistance against the wall of the uterus.  Premature babies can't develop their leg muscles if they don't have anything to push up against.  The bottom picture shows the contraption that helps Lorena develop her muscles.  Lorena's legs kick up against the roll, mimicking the wall of the uterus. 

Dan's mom, Cindy, went with me on Tuesday and a friend (my Sigma Alpha sister in Kansas), Wendy, went with me to Topeka today.  It is always nice to have someone along for the ride.

I'm getting to the point that I just want her home!  I have been trying to work some, which is making the days go by quickly, but I also am feeling more guilty for not being with her.  We haven't stayed many nights in Topeka but she is getting to the point that I may spend a few nights there next week.  She still gets very tired when breastfeeding but is taking about 2/3 of a day's feeding by bottle.  She will go home on a combination of breastmilk and formula bottles and an occasional breastfeeding.  Hopefully she will catch on to breastfeeding as she gets older.

This week has been very tiring for some reason.  I'm just feeling drained tonight.  It will be so nice to have her home.  Things are just unsettled with her being in Topeka and us being here.  We finally got her room ready though.  And we did get great news this week.  Deb, our nurse practitioner, said Lorena may come home next week!