Baby Ella

2011-09-13T06:34:00.000-07:00

Ella & AJ's first visit to the beach and they LOVED it! Of course, Mom and Dad loved it too.

I call this Ella's vacation hair. : )
We spent July 4th with the cousins in Oklahoma and Ella and AJ were so-so about the fireworks...hahaha

Miracle Miles

2010-11-03T19:07:00.000-07:00

I am giving Ella's testimony in chapel tomorrow at my school and so I was looking back on the blog to get inspiration and I am reminded of how much road we have traveled. It is so easy for me to go through the days and not remember how small she was when she was born or how many times God held her in His hands. Ella is now 2 years old and comprehends so much and runs around the house like she owns it.

A miracle took place in our lives when Ella was born, and again took place in our lives when A.J. was able to be carried full term. Life is now full of wonder and laughter with A.J. crawling around everywhere and Ella letting everyone know how it is. Our preemie is now a healthy, vivacious toddler.

Walking Tall

2010-06-07T09:30:00.000-07:00

Our big girl is now walking!! It's hard to believe that Ella will turn 2 in just a few months...wow...where has the time gone. The Jeson clan is doing great, Ella is walking and talks nonstop (even though no one understands her), and A.J. now outweighs big sister by 5 pounds. Nothing wrong with having a BIG Little brother. Summer is here and Ella enjoys swimming (after she gets used to the water)and would stay outside all day long if we would let her. Gotta go since the girl is taking out the trash for me (even if I don't need this kind of help). Love to all.

Big Sister? Little Brother?

2010-01-28T09:14:00.000-08:00

Well, it has begun. People are now asking if Ella and AJ are twins (never mind the fact that she sits in a high chair feeding herself and he is sitting in a carrier with a passy in his mouth). I have no doubt that Ella will remind him and the world, that even though he is bigger - she is still the big sister. Our miracle girl is showing her personality more every day.

I get reminders all the time to update the blog, and our computer even reminds us since her blog is our homepage, but it is hard to carve out any time for showering(I know too much info) much less typing and loading pictures. Even now as I type this, Ella is under the desk emptying out the trash can for the fourth time. (she must have lost an important paper...hahaha)

Overall, the Jeson family is doing great and big things are just around the corner...Ella will be getting a prosthetic hand soon (yipee), and AJ is growing up fast. Thanks for all the kind words and for continueing to pray for our miracle girl. Love to you all.

Baby Brother

2009-12-02T17:56:00.000-08:00

Our newest bundle of joy has arrived and big sister is very happy about it. Ella thinks that A.J. (Aaron Craig Jeson II) is the greatest thing ever and takes every opportunity to touch him and be close to him. Little brother was 6 pounds 7 ounces when he was born on November 12th and now weighs 7 pounds 10 ounces, soon he will be little big brother. : )

Life in the Jeson house is a little crazy now and sleep is something that I remember fondly but don't get much of but this season will pass. Here is our princess Ella preparing for cold weather and all the cousins together at thanksgiving. The picture shows how big our boy and girl are getting. : )

Pumpkin Patch

2009-10-31T14:36:00.000-07:00

Yesterday we took our 13 pound bundle of energy to the pumpkin patch and got some great pictures which I had to share with you all. I have been reminded lately (I think it is the time of year which takes me back) of how far God has brought Ella and our family.

Aaron had to get a new cell phone, because Ella chewed on his old one and it died, and he sent me some pictures to save that he had taken the first two days Ella was in the NICU. She was so tiny and sick and now she is crawling all over the house getting into everything she can get her hands on...thank you God for bringing us this far.

I have also been thinking about my time in the hospital after she was born because I will be there again in a couple of weeks with little brother, and I have been thinking about how different the experience will be for everyone. Having two kids in the house is going to be lots of work, but having healthy children is priceless. My doctor has been bragging on me because I am following all of her recommendations and don't complain when I have to see her twice a week. I told her I would rather see her every day than spend 5 months in the NICU beside my child's bed.

Thank you Jesus for a healthy family.

12 Pounds 8 ounces

2009-10-09T19:32:00.000-07:00

Well, I am finally posting Ella's birthday pictures as promised, sorry it has taken so long to post them. We had a birthday party for her and Aaron, who turned 30 the day after Ella turned 1 and everyone celebrated the bday peeps. Our big girl is now 12 pounds 8 ounces and continueing to thrive, she is now crawling (well sometimes scooting, but getting around very well) and sitting by herself. Needless to say she is now a hand full, quite a personality. (but we knew that before she turned one).

Next month Ella will be getting a little brother, and I am sure he will probably be her little-big brother. I have no doubt that she will remind him that she is boss (since day one she has been a fighter), even though he will be bigger than her. Because of what we learned in the NICU with Ella, I am taking it much easier with this preganancy and also have taken medicine to help control my blood pressure and such. Our little man, Aaron Craig Jeson II will be born in November and at times we will probably be asked if we have twins... because at Ella's size AJ (what we will call him) will undoubtedly outweigh her within a couple of weeks. Keep our family in your prayers we will soon suffer from sleep deprivation : )

Birthday Girl

2009-09-12T12:45:00.000-07:00

Our girl Ella turns 1 year old this week...we can hardly believe it. She is doing amazingly well is very, very, active (loves jumping and dancing) and is now sitting up by herself. She is very close to crawling and gets frustrated that she can't get to her toys when she wants to.

She has come so far, and the NICU is becoming a distant memory. Ella weighs a big 11 pounds 8 ounces now (sorry to all the hospital folks, don't know what that is in grams...hahahaha) and is a big heap of personality.

I will make sure to update the blog after Ella's Birthday and put up her one year old pictures.

10 Pounds 11 Ounces

2009-07-23T19:34:00.001-07:00

Ella is now 10 pounds 11 ounces and growing by leaps and bounds every day. As the pictures show she is quite a personality now (of course, we always knew that even at one pound in an incubator) and keeps us on our toes. She can roll over now but is not quite sitting up by herself ....almost. She wants to stand up all the time and is very strong, which surprises everyone because of her size. Our big girl will actually turn 1 year old in September which seems unreal to us and our time in the NICU seems so long ago.

Everyday when I hold Ella in my arms I thank God for the miracle He gave us.

Big Girl

2009-06-20T15:56:00.000-07:00

Our big girl is now 9 pounds 12 ounces (we go back for a check-up next week and hopefully she will be 10 pounds) and ready to get into everything. Her favorite thing now is grabbing glasses, pulling hair, and checking out jewelry. We went to visit her cousins in Oklahoma and they enjoyed entertaining her and taught her to grab Ben's glasses.

On Sunday, I sang a solo at our church and they showed pictures of Ella in the background. I don't think there were any dry eyes in the house especially after Aaron walked her onto the stage at the end of the song. Our miracle girl is a testimony to the power of prayer.

Success

2009-05-26T07:19:00.000-07:00

Ella's surgery went off without a hitch! Praise the Lord! The anesthesialogist was amazed that she didn't have any major problems, in fact he asked me a number of times if she had any heart conditions or such. Our little miracle tends to scare new doctors because of her size and things she has gone through, but she always surprises them.

They did find a piece of the broviac IV still in her chest and it was surrounded by "goo" (I'm quoting the surgeon) which meant it was working on another infection. Once again, she surprised them with the fact that she had no fever or other symptoms of infection - She is a MIRACLE!! She is once again thriving at home and if I could figure out how to get her to take a nap in her bed during the day, life would be perfect. Thank you for all the prayers and kind words.

More pictures to come.

8 Pounds 12 ounces

2009-05-18T18:59:00.000-07:00

Our Ella is now 8 pounds 12 ounces and continuing to thrive at home. We went to visit San Antonio 2 weeks ago, because Ella had a sore on her broviac site that needed to be lanced and the surgeon thought that there might be a cuff left and this is causing the infection and sores. We go back to see the surgeon this week and they will do surgery to see if something is still there.

Our girl is a wonder and is always laughing and looking at the world. Everyone is surprised at how aware she is since she is sooo small. She loves standing up and has started reaching for things - sunglasses beware : )

Pray for her surgery.

7 Pounds 12 ounces

2009-04-18T09:31:00.000-07:00

Our big girl is now 7 pounds 12 ounces...Aaron lost the bet, : ) he was hoping for 10 pounds (we are close!). Ella has a lot of personality now and every day we see more smiles and hear her stories...she loves to talk, but if you know me then you understand the apple didn't fall far from the tree...hahaha. The pics are just an example of her personality...first piano lesson with gram, and falling asleep with her penquin under her arm.

We are looking forward to taking her out into the world and meeting all the people who have held her up in prayer the past 7 months. September 17th (Ella's birthday) seems so long ago, when you look at how far she has come in that time.

Our prayers and thoughts go out to the Capers family who lost their dear mom & wife, Gayla. She was a follower of our blog and left many uplifting, encouraging words during our time at the NICU. She was an amazing woman who will be missed. Love to all the family from Ella, Christy, and Aaron

Happy Easter

2009-04-12T12:39:00.001-07:00

Here are some pics of our big girl on her first Easter. She is very aware of things around her now and loves to look at her toys. She didn't get to go to church on Easter, because she is still living in a bubble, but Mom and Dad watched the service via computer.

We go see one of her doctors this week so I should have an updated weight (we're placing bets on what it might be). Overall, she is doing great...eating well and growing like a weed...: ) in fact, she has graduated from preemie clothes into newborn and won't stay there long...yipee!!

Reading

2009-04-03T08:29:00.000-07:00

Aaron has started reading to Ella and she loves it, but at this point it's all about the tone of voice and not the content, as you can see from the engineering magazine. (we're starting her early...hehehe)

Everything is great, our big girl is growing (don't have an updated weight because we haven't seen the doc since the last time - which is a good thing) and showing off her personality. Our goal for the last two weeks is to get her to take naps in her bed instead of someone's arms because unfortunately, the NICU creates some bad habits. When it got to the point in the hospital where we could hold her whenever we wanted we just held her all the time and now we are retraining. I am not complaining because she is healthy and home, so all the other stuff is just that stuff and will be taken care of in time.

Our time in the NICU is starting to become a memory instead of thoughts fresh in my mind and I have to make an effort to remember all the things that happen while we were there. I admit that I didn't think this day would come when the NICU days would fade.

Ella seems to be adjusting well to being at home, but I am looking forward to taking her out and about. We are still keeping her housebound just to be on the safe side because of flu and RSV season. Once school is over and it is warmer outside we plan on carting her around and showing her the world, but until then she is still our little girl in a house bubble. : )

More Pics

2009-03-21T16:09:00.000-07:00

Our cousins from Houston came to visit and one of them takes photos so we got her to take some pics of us and our diva - so you guys can enjoy. If you want to see some of her other pictures here is the website www.chaptersphotodesign.com ...enjoy.

Everyday gets a little easier and I can now look back on our time in San Antonio with good memories. Shout outs to all our friends from the NICU - hope you are all doing well.

Tired of small

2009-03-20T15:35:00.000-07:00

The only time we take Ella out, is for her doctor's visits and without fail someone will notice how small she is and feel the need to make a comment about her size, and ask how old she is. This is a loaded question for me...if I tell them the truth, which is 6 months, they are going to ask what is wrong with her, because have you ever seen a 6 month old that is only 6 pounds. So, instead I tell them she is 2 months(her adjusted age - from her due date of Christmas day) which is still a stretch, because she is still smaller than most full term babies.

This was a comment that I detested while she was in the hopital but I have to admit that now I dislike it even more. : )

6 pounds 11 ounces

2009-03-20T15:26:00.000-07:00

We went to see Ella's endocrinologist this week and they weighed her at their office and she weighed 6 pounds 7 ounces, which scared me because that would mean that she only gained 1 ounce in a week. So, we went to her pediatrician the next day and weighed her on the scale that we have used since she came home from the hospital and it said she gained 5 ounces....yipee!! Just one more reason for me to not enjoy driving all the way to SA to see her specialists. This visit they seemed to focus on her growth chart more than her blood sugar...I think it is because she is healed...Thank you Jesus!!

I had spring break this week and it was nice to stay at home with the big girl instead of rushing around midmorning and jumping in the car for school. But, I can't believe how soon school will be over : ) Overall, our princess is doing great and we are starting to learn her signals...and cries...

6 Pounds 6 ounces

2009-03-14T10:36:00.000-07:00

Our big girl is now a whopping 6 pounds 6 ounces and I couldn't be happier! We are doing well at home adjusting to less sleep, not enough time in the day to get things done, playing catch-up at work after being gone for five months, and enjoying every minute of our time at home.

Ella is doing great with her development and is right on schedule for a two month old, almost 3 months. She keeps trying to roll over and any day now I think it will happen. She loves to talk, especially to her favorite toy, a bug. : )

Enjoy the new pics of our big girl!

5 Pounds 14 ounces

2009-03-06T11:02:00.000-08:00

Our princess is now a whopping 5 pounds 14 ounces...6 pounds here we come! Her preemie clothes are now snug and I can't wait to graduate up to newborn...sounds a little funny since technically Ella is 5 months old but not yet 6 pounds. : )

Her blood sugar is regulating itself so well that we have stopped the cornstarch and it is still good. We were able to stop one of the medications we give her and I am hoping to start reducing the other one as well....I think it will make a diffference when we don't have to give her sooo much medicine.

Life at home is amazing but hectic...there is never enough time to do everything you need to get done especially when the little girl only takes a 15 minute nap because of dogs barking or phones ringing...oh well...a clean house won't help cure world hunger or solve America's financial crisis.

Pics

2009-03-03T14:12:00.000-08:00

Here are some pictures of our big girl that now weighs 5 pounds 12 ounces. Yipee!!

I am hoping that we will be able to stop some of the meds this week since she is doing so great with her glucose levels. Overall, our big girl is doing great.

Updates

2009-03-01T19:24:00.000-08:00

Our big girl is now a whopping 5 pounds 10 ounces and doing great. We had a scare last week because her blood sugar was high (in the 90's and 100's but is normal for everyone else), and the last time this happened it was because she had an infection. After a blood test ruled out infection we realized that her body was starting to regulate itself and a visit to the endocrinologist gave good news. He lowered the amount of cornstarch that we give her and if this continues then we will remove it all together. The DNA test that we were waiting for to confirm that her blood sugar problem was the glucose storage in her body came back normal so now they are thinking that it was due to her pancreas being soooo small and her body not making enough glucose, but now she is bigger and able to produce more. Of course, prayer and miracles helped as well.

Right now we are dealing with a touch of bronchitis that the doctor noticed in a visit because she wasn't eating as well as she should. Any mom can tell you that their baby acts a certain way and when they act differently it sends red flags and with Ella I have to watch carefully so we don't end up back in the hospital. She is on breathing treatments now and is back to her regular eating habits...which is very good.

I am sooo ready to be able to take her off all the meds that she is on because I believe that they are affecting her sleeping and that she will thrive even more when I don't have to dose her with 4 or 5 meds. Overall, the Jeson's are adjusting to life at home, but our princess needs extra attention so we don't get much done and since our priority is her then it all works out in the end.

New pics

2009-02-22T14:28:00.000-08:00

Here are some pictures of our big girl who now weighs 5 pounds 4 ounces. We are enjoying our time at home and everyday we learn more about what Ella likes or dislikes : ) and we adjust...

We are going back to San Antonio this week to see a couple of specialists for follow-up with the baby girl and if we have time we are going to stop by the NICU and show off our big girl.

Regular baby

2009-02-20T11:04:00.000-08:00

Now that the infection is cleared up and all the antibiotics are done our girl is starting to act like a regular baby...small, but regular. She has decided that it is ok to sleep at night, and her parents are thrilled : ) Also, her sugar levels have started to rise which is a great thing...at first it scared me because that is what happened when she had an infection, but our pediatrician(whom we think is just the greatest) did a blood test and it came back great so now we are wondering if her body is repairing itself. (prayer has a way of changing things) The blood test that was done when we left the hospital came back this week and her glucose storage came back normal, so we are back to the drawing board as to the cause. We should be going back to San Antonio soon to see her specialists, and perhaps then they will have another option for us.

I have gone back to teaching and it's great. My students seemed pleased to see me and I am pleased to be back to my life...I do miss the little girl when I am at school, but I only have 3 classes so I'm not gone very long. My mom is an angel and comes to the house every day and watches the babe, and we can't thank her enough...Ella thinks she is great already. We are house bound to a certain extent because of the baby girls immune system, but we are HOME and that is what matters.

Home again...home again...

2009-02-15T14:13:00.000-08:00

Our baby girl now weighs 5 pounds 1 ounce and is home again...and this time here to stay. The oral antibiotics are doing well except for the diaper rash, which is unfortunately par for the course.

We are adjusting to a house full of baby stuff, not enough time for all the things that need to be done, sleep deprivation, and more joy than we can contain. Life as we know it will never be normal again, but when I think about what we have been through in the past 5 months I am amazed and awed at God's mercy and the miracle of Ella.

Right now keeping Ella healthy is our number one priority. We will also be taking frequent trips back to San Antonio to visit the numerous specialists that were involved in her case. Pray for infection to stay away and for our little princess to continue to gain weight.

Tomorrow...Tomorrow...

2009-02-11T13:20:00.000-08:00

This post starts with upsetting news and ends on a happy note...the upsetting part is that the IV blew again yesterday, and after many tries(where Ella sobbed) they finally got another one started. This morning, the new IV had to be removed because it wasn't working any more. I thought that this would be the beginning of Ella having to endure the many needle sticks that accompanied the last try, but our pediatrician gave us the good news for today. He said that if they were not able to get the IV started with only 1 or 2 tries then he would put her on oral antibiotics, moniter her today, and then send her home...hopefully tomorrow...(this makes me want to sing just like little orphan Annie). She has had one dose of the oral antibiotics and is doing well, so pray that they don't cause any adverse reactions.

Our little princess is eating much better and is even sleeping in her bed...only about one and a half hours, but that is better than nothing. Also, pray for Aaron because he is feeling a little under the weather and had to go back to work nights, which isn't helping his immune system. This stay in the hospital has solidified the fact that germs are the enemy in the Jeson house, but it is hard to keep your immune system working properly when sleep is none existant.

Thank you again to everyone that is praying for our baby girl...we are coming home soon...in Jesus name!!

Good news

2009-02-09T17:28:00.000-08:00

Ella is still in the hospital here in Victoria but they almost sent us back to San Antonio yesterday. Because of the infection, she is on IV antibiotics and yesterday her IV blew, which means it wasn't usable anymore. Our little girl is a hard stick (a couple of nurses tried and couldn't get it), so they thought they were going to have to send us back to San Antonio to get a bigger IV. They got on the phone and called the nurse manager who was leaving church and came right over. Before she tried to get the IV, I asked her if she minded if I prayed over her and Ella, she was glad to have the prayer and I believe God worked a miracle, because she got the IV on her first try. This means that we are able to stay in Victoria, but we will be in the hospital until at least Thursday.

Through a course of tests, they found that the broviac site had bacteria and there was also bacteria in her blood. If there is a bright side to bacteria, it is that it is a light strain that responds to antibiotics (as opposed to the resistant strain). A cardiologist came to examine Ella's heart today and make sure there was no vegetation(from the bacteria) growing around or on her heart from the broviac, and he gave us an all clear. Praise the Lord!!

I was reminded today about how optimistic my blog was in the beginning of Ella's stay in the hospital and I am now reflecting on how far we have come. There are lots of things that I could be angry about or cry about or shake my fist at heaven over, but today when Ella was upset because of the 50 millionth(made up word)test she calmed down because I gave her kisses on her check and called her my baby girl. The smile on her face and laughter in her eyes reminds me that God knows her future and will help erase the past 5 months in her mind.

Pray for our baby girl to continue to improve and grow...grow...grow!! (when I get an updated weight I'll be sure to let you guys know.)

Back in the Hospital

2009-02-07T15:50:00.000-08:00

Our little girl started having fever on Thursday around 6:00pm and also her sugar levels were very high which was strange, so we took her to the emergency room and they admitted her. She is in a hospital here in Victoria, with an infection, and from a process of elimination it looks like it is from the broviac site. The baby girl has had to endure a barage of tests all the while being sick.

Unfortunately, they put her on the regular pedi floor instead of the nursery or NICU (they couldn't admit her to the nursery because she is too many days past her due date - technically she is almost 5 months old) and so this means we have to stay with her 24/7. I am not complaining about spending time with my beautiful daughter, but I have to admit that this is definately more exhausting than SA.

Right now the best case is that we get to go home after she has had a week of antibiotics but time will tell us more. If the broviac site needs to be lanced, because of infection build up, then they will send us back to SA.

Pray for Ella to be rid of the infection, rest well (hasn't been sleeping very good), strength for us (Aaron and my mom have been life savers), and protection from any other infection from the many people that come through her room(the hospital is not as protected as the NICU).

Homecoming!!

2009-02-04T21:20:00.000-08:00

The day that we have been looking forward to has finally arrived, Ella was released from the hospital. She weighs 4 pounds 10 ounces and is doing great. They took the broviac IV out Monday morning and also took blood to test for the glucose storage problem and then they sent us home. It was a very exciting day, but also made me a little nervous at the same time. She is doing well, but we have to test her blood sugar every six hours and still add cornstarch to her milk to help keep her blood sugar levels up.

Hospital policy says that every patient discharged from the hospital must be taken out to their car in a wheelchair. Since the babies can't sit in the wheelchair by themselves, then the mothers carry them while they are wheeled out. Here are a few pics of us leaving the hospital.

The first night home from the hospital, Aaron and I didn't get any sleep because our little girl didn't like being in a new place and wouldn't sleep in her bed. Every day gets a little better and since we now make sure there are noises and lights, like she had in the hospital, she is adjusting better. I see a few months of sleep deprivation in my future, but strange as it sounds, I'm excited about it. God has brought Ella such a long way in 5 months and the rest of her life will just get better.

I have much more that I could write about our time in San Antonio and what I have learned about God's provision, but I'll save it for next time. I am going to continue updating the blog with pictures of Ella and notes about her progress, so stay tuned for the exciting days to come.

2009-01-31T18:28:00.000-08:00

Ella's blood sugars have continued to be stable and she did gain weight last night, but we need her to gain more. Pray that the sugars continue to be stable and she gains weight. Also, we need favor with the surgeon so the braviac can be removed early on Monday and then we can head south....YES!!

Here are a couple of smiley pictures of the big girl...sorry the photography isn't the best but I was holding her and taking her pic at the same time : )

Monday, here we come

2009-01-30T17:56:00.000-08:00

Our big girl is 4 pounds 9 ounces (2071 grams), but she needs to get bigger and we are hoping she gains lots of weight this weekend.

Dr. DeYoung has spoken with a specialist that thinks Ella might have an issue with her storage of glucose, which is causing the low blood sugar. They are going to draw blood for a test that will be sent off to Baylor and should return in about a week. The treatment for the glucose storage issue (not the technical name...hahaha)is cornstarch and if that doesn't balance the sugars then the other options aren't as easy. This issue is actually something that Ella was born with and has nothing to do with her prematurity, and I am calling it a blessing that she was here and they were able to find the problem. This is something that she will live with for the rest of her life, but it is very managable.

If Ella's sugar levels continue to balance over the weekend then they will remove the broviac on Monday and send us south Monday or Tuesday. I'm trying not to get too excited about leaving since we still have to make it through the weekend, but we serve a big God that didn't forget where we are and knows Ella by name.

Pray for the cornstarch to continue working and infection to stay away.

Big girl

2009-01-29T21:25:00.000-08:00

Ella has been doing well on the cornstarch, with only a couple of low sugar levels. They have removed the dextrose from her IV fluids and we are praying that her levels stay stable over the weekend. If all goes well, they will remove the broviac next week and the rest is history...at least our time in San Antonio will be history...YIPEE!!

Pray for Ella's tummy, because the extra calories and cornstarch make it upset at times and she doesn't sleep very well. Her upset stomach is another example of how the NICU is a double edged sword...she needs the cornstarch to regulate her blood sugar, but the extra calories in the milk make her stomach upset. Our big girl is now at the point where she wants to be entertained and isn't happy just lying in her bed. I know that she will thrive when she gets home and gets on her own schedule and has a whole house at her disposal instead of just a bed.

Cornstarch revisited

2009-01-28T10:50:00.000-08:00

They have started Ella on cornstarch again (if you are a follower of the blog then you remember the cornstarch issue in Dec) to help regulate her blood sugars. Last time they had Ella on cornstarch her tummy couldn't handle it, but this time she is 4 poounds instead of two and also taking all her feeds from a bottle so she is regulating how much she takes. Pray, pray, pray that this clears up the blood sugars because everyone is ready(I'm sure even you guys) for this issue to be finished. Also, pray for her tummy, that she is able to handle the cornstarch along with the extra calories that she needs because she has been losing weight without the extra help.

We are soooo ready to have this problem resolved so we can go home, but we also want our girl to be well! God has an amazing plan for Ella and if we stop and look back, we can see how she has changed lives already - I will be the first in line to say I am changed for the better. I have been preaching to myself lately that the end is near, but I don't need to forget everything God has done for us, and remember that He didn't forget where we are...He knows our circumstances even if we are far from home.

Many faces of Ella

2009-01-25T12:36:00.000-08:00

Here are a few of Ella's funny faces, thought you guys might enjoy. This week has been tough for us, Ella was having tummy issues and she wasn't sleeping more than 4 hours in a 24 hour period...this made for a very emotional mommy. Combined with the drama of not finding out what is wrong with her blood sugar levels, which are keeping us here, her not sleeping and tummy issues were very stressful.

Pray for her tummy because they are going to start her on cornstarch again because they are at the end of their rope in regards to her blood sugars. Last time they added cornstarch to her milk she had stomach issues and they stopped her feedings all together, but she was much smaller then so we are hoping it doesn't have the same effect.

Weekend Cometh

2009-01-23T17:28:00.000-08:00

Ella's tummy is doing much better (thank you, Jesus!) on the lower calorie food and she got a little sleep today, but I know she will thrive at home.(I'd get bored too if all I did was lay in my bed) The tests came back today, but the specialist didn't get back with Dr. DeYoung so that means we won't find out until Monday. At the hospital, the weekend means coasting so we will have to wait until Monday to find out when we are going home.

Pray, Pray, Pray that the new specialist can find out what is happening with Ella's blood sugar and we can go home soon. Our poor little girl's heals are all marked up from the blood sugar checks that they do every 3 hours...my only comfort is that she will not remember this part even if she has the scars.

Tough Day

2009-01-22T18:02:00.000-08:00

Our girl is even bigger today, 4 pounds 7 ounces (2018 grams), but her tummy is full of gas from the high calorie milk and it makes her very cranky. Because of her tummy issues, Ella didn't want to eat today so they lowered the calories but it still takes time for her to get the air out. I didn't leave her today, because all she did was cry...she wouldn't sleep and barely ate. I'm sure all of you that are parents understand what I was going through today...not a good feeling when you can't fix what is hurting them.

The growth hormones don't seem to be working on her blood sugar levels so now they are trying other tests.

Pretty in Pink

2009-01-21T16:41:00.000-08:00

Our big girl now weighs 4 pounds 5 ounces(1955 grams). Her blood sugars have been stable on the new medicine except for the one at 6pm yesterday and today...UGH!! They are still trying to figure out what is going on...pray that the answer comes quickly so the broviac can be removed and we can go home.

She hasn't been eating very good today because she has a lot of gas (from the calories they add to her milk) and reflux. They started her on zantac for the reflux and it is helping but I am praying that she gets back on the level of feedings that she was on before.

Thank you to everyone that has been praying for me, things are better but I am anxious to go home. Imagine giving up your life for 4 months, being away from your home, family, and friends. At the same time that you give up your life, you put yourself in a stress situation that you have no control over. The Jeson girls are ready to go home.

Another Monday

2009-01-19T18:31:00.000-08:00

Today we have been in the NICU for four months, and I can definately tell. I am still feeling the pull of home and the hospital is not making it any easier to want to stay...lets just say we had a disagreement, and leave it at that.

Ella is now 4 pounds 3 ounces and has been taking the growth hormones for two days. I met with the specialist today, and he is hopeful that this will straighten out her blood sugar issues and I am in agreement with that. Pray that the medicine begins to work and they are able to remove the broviac so we can drive south : )

Please pray for me, because this has been a bad day for me and I feel very uncomfortable here at the hospital. In a normal time, I wouldn't share this with you guys but I really need your prayers because Ella needs me, so we can go home. Thank you...

New medicine

2009-01-17T18:34:00.000-08:00

Ella is still 4 pounds 1 ounce but has gained 20 grams...still growing (although slowly). The tests came back about her blood sugar and it showed that her growth hormone levels were low so they started her on them today. We are hoping that this will fix the blood sugar levels and not only that, but will also help with her growth....go figure - growth hormones helping with growth(hahaha). The hormones are given as a daily shot and we will still have to give them when she gets home, but I figure after 4 months in the NICU I can do anything...even give my daughter a shot. She also got an MRI yesterday to look at her pituatary gland, and they said overall it looked great but we are still waiting for the specialist to give his analysis.

Keep praying for our big girl to get bigger, breath easier, growth hormones to work(yes!), and go home!! They are going to do some more tests on Monday just to check things out so pray for great outcomes.

4 Pounds

2009-01-15T17:12:00.000-08:00

Ella is now 4 pounds 1 ounce (1843 grams). Yipee!!! Our girl is getting bigger and I have to admit it could happen a little faster for my comfort. I am sick of San Antonio and not living my life. Ella's blood sugar is still fluxtuating and the last test they did should be ready tomorrow, and I am praying like I have never prayed before, that it gives them some information they can use. We have gotten all of the things done that we have to do before they will discharge her, because I wanted to make sure that when they are ready we can be out the door.

Pray for Ella's blood sugar levels and the test that we find out about tomorrow. Also, pray for her to continue to eat lots of milk, hold her temperature, and GO HOME!!

Monday

2009-01-12T17:24:00.000-08:00

Monday is here and with it came some changes. Ella is now 3 pounds 14 ounces (1776 ounces) and has been moved to the IMC (Intermidiate Medical Care) which takes us closer to home. Her blood sugar still seems an issue and hopefully the specialist will have some ideas tomorrow after he looks at the results of the lastest tests they ran. Pray for the healing of her blood sugar issue so we can go home.

Crazy week

2009-01-09T16:52:00.000-08:00

On Wednesday, Ella had a test to try and find out what is making her blood sugar fluxtuate and she had a bad reaction to the medicine that was used. Her oxygen level went way down (so much that we had to keep the oxygen mask over her face), she got fever, and was overall sick. I have to admit to being very scared, I haven't felt this scared since September when Ella first came to the hospital. Our big girl has soo much personality now that she didn't seem herself and that is what made me scared. By 3 o'clock she wanted to eat and when we gave her a small amount of milk, she wasn't satisfied until she got it all. At this point, we knew that she was doing much better.

She was on the oxygen the next day and by today she is breathing on her own again. In fact, our big girl is now in a crib AND taking all her feedings from a bottle.

However, we need your prayers for the sugar issue. All the tests that they have given Ella have all come back normal but she is still having fluxtuating blood sugars. Because of the blood sugar they can't remove the broviac or send us home. I'm believing for a miracle because our little girl needs one...she has come sooo far and will still have to conquer things in her life. Thank you for praying for our girl, that was the thought in my mind on Wednesday, I knew that all of your guys were lifting her up in prayer.

3 pounds 12 ounces

2009-01-05T16:55:00.000-08:00

Ella is doing great and now weighs 3 pounds 12 ounces (1690 grams). Today, they lowered the glucose in her IV fluids and her blood sugar was good, so as long as her sugar level stays good tonight they should take out the glucose in the fluids which means we can take the broviac out this week....YIPEE!! We turned off the heat in her bed today and just put her in her pj's and blankets and she held her temp well...today was a red letter day for our super girl. If she continues to hold her temp tonight then she may get to move to a big girl crib tomorrow....YES!! These are all signs that we get to go home soon. She is doing good on her bottle feeding but still has a little way to go.

Here is a picture of the big girl wrapped up in blankets snoozing and I'm sure she's dreaming about hanging out in her new nursery. : )

Pray for weight gain, temperature levels, blood sugar levels, and continued good health.

Back to 3 pounds 10 ounces

2009-01-02T18:11:00.000-08:00

Ella gained the 30 grams back and is now back to 3 pounds 10 ounces. Her blood sugar levels are doing great and hopefully they will be able to drop the dextrose soon and get rid of the broviac. Our big girl drank her full bottle at two feedings today and I continue to pray for her to want the milk every day. She still can't hold her own temperature but 4 pounds isn't far away.

Pray for her continued weight gain, blood sugar levels, and overall great health.

Happy New Year

2009-01-01T12:39:00.000-08:00

Ella lost 30 grams yesterday which brings her down to 3 pounds 9 ounces, but this is normal since she uses more calories drinking from the bottle. Her blood sugar level was good last night and we are praying it continues to be normal so we can get the broviac out. She drank her whole bottle this morning which is exciting and I can't wait until this is the rule instead of the exception.

Happy New Year to all our blog followers, someone remarked this morning that they couldn't believe it was Jan 1st and I said I couldn't believe we'd been here since Sept 18th. The start of the new year brings with it a new hope that we are soon going home because the Jeson's are ready to be back home in Victoria. I'm tired of calling San Antonio home.

I'm having fun playing dress up with the little Ella doll, here are some more pictures, this time she's wearing pajamas...heeheehee.

3 pounds 10 ounces

2008-12-31T14:58:00.001-08:00

Our big girl gained 50 grams yesterday to make her 3 pounds 10 ounces (1650 grams). Yipee!! Four pounds should be here before we know it...that is the size that most babies can hold their own temperature. They lowered the dextrose in her IV fluids today and her blood sugar level were great. Her bottle feedings are still hit and miss...she takes one but then is asleep for the next one. Aaron took these pictures when I was trying to keep her awake before her feeding but she fell asleep anyway...but we got some great pictures of the baby girl.

Pray for her continued weight gain, blood sugar levels to continue to improve, and overall good health.

Big yawn

2008-12-30T16:20:00.000-08:00

Ella is now 3 pounds 8 ounces (1600 grams) and we're still working on her bottle feedings...when Aaron and I pray over our food we always pray that God will bless her food as well and lately I have included that she have a hunger for it. The specialist came by today that is working with her on her blood sugar levels and said in a couple of days he wants to do a test to see if her patuitary gland(don't know how to spell it) is communicating well with the rest of her body (making the right amount of insulin and such). Pray for her blood sugar to level out...I know she is a miracle and that God's hand is on her.

Many faces of Ella

2008-12-29T17:32:00.000-08:00

I got a little camera happy today and captured some of Ella's expressions and I thought you guys might like to see them and we also put her in a onesie for the first time and she is sooo cute(if I do say so myself). She is still doing ok (about half of the full feed) with the bottle feedings and gained 20 grams yesterday. They are wanting to remove the broviac next week hopefully Monday as long as the surgeon is available. (it has to be removed surgically)

Pray for her glucose levels to stay stable, a surgeon to be available when we want to remove the broviac, weight gain, and overall health.

Bottle feedings

2008-12-28T12:10:00.000-08:00

Ella is now bottle feeding every other feeding and takes the whole amount some of the time and other times takes about half. She lost 20 grams last night but it is expected because of the increase in bottle feedings which use more calories than tube feedings. They are weaning her off the IV fluids and hopefully by the end of the week she will be off the glucose and holding her sugar levels steady. (pray for her glucose levels to stabilize on their own) If she is stable without the IV fluids they will remove the broviac IV which has made a sore on her chest(possibly from friction because she was sooo small when they put it in) and it's time for it to go.

Overall, our little princess is doing well and every day brings us closer to home. Pray for her continued weight gain and overall good health.

Christmas due date

2008-12-26T12:08:00.000-08:00

Ella's due date was originally Christmas Day and on the 25th, I was filled with wishful thinking about what it would be like if she was born that day instead of in September, but I realized I can't look back at what might have been. I have had the priviledge of getting to know Ella in a way that I couldn't had I not been standing by her bedside for the last 14 weeks, I can talk to her and it calms her down because she knows my voice since she hears it everyday. I also know exactly how to calm her down and I know what makes her mad and in this way I am blessed that I have had the chance in get to know her in her new womb.

Our big girl is now 3 pounds 7 ounces (1550 grams) and is eating from a bottle every other feeding. The projection is that we will get to take her home in a month (which is now 3 more weeks) and we are busy getting everything ready at the house. I have to admit that I am getting excited about the prospect of going home with our princess and getting back to our life. I have learned so much about myself, Aaron, and Ella since I have been in SA and now I am ready to start the new chapter in our lives....

Pray for Ella's liver, lungs(they are still sick even though she is off the oxygen), feedings to go well(this will determine when we go home), and glucose levels(she will be taken off the sugar in her IV fluids and needs to hold her own).

Great report

2008-12-23T17:51:00.000-08:00

The eye doctor came by today to look at Ella's eyes and he said that they looked great and only wants to see her one more time before she goes home, and our nurse Pat commented that it was about time that we got a great report. Our little girl lost 30 grams but gained them back last night so we are back to 1470 grams (3 pounds 4 ounces) and are praying for 1500 grams tonight. Ella needs to gain weight so she can regulate her own temperature (still has to be in the heat of the isolette), have a balanced glucose level, and all her internal systems be balanced(liver, etc)

Just chillin'

2008-12-21T14:05:00.000-08:00

Ella is now a gigantic 3 pounds 4 ounces (1470 grams). She is doing well on her feeds, but is still on the IV nutrition to help her continue to gain weight. She is drinking her milk from a bottle twice a day and drinks the whole feed about half the time, which is a start. Our little girl is becoming a big girl now and yesterday was chillin' with daddy while resting on the boppy pillow and soon will enjoy the swing that we bought her today. She enjoys sitting up in her bed and looking around if someone is talking to her (she wants to be the center of attention, just like any princess would) and gets bored in her bed. We were looking online for some car seats today because they have to put her in it and she must pass the car seat study before we are allowed to put her in the car and head for home(no irregular heart beats - brady episodes, and very little desating - oxygen going low). Our homegoing is getting close (I made up that word...hahaha) and we are excited about bringing our girl to Victoria.

Pray that she continues to gain weight and her broviac stays free of infection because we don't need any set backs.

Santa visits the Nicu

2008-12-19T10:54:00.000-08:00

Santa came to the NICU today to take pictures with the babies and Ella wins the award for best outfit which I bought at the Build-a-Bear workshop(the contest is only in my head). : ) She was Santa's favorite elf.

She is still 3 pounds 1 ounce but gained 20 grams (1400). They raised her feeds to 22cc over an hour and we now work with her bottle feeding twice a day. The bottle feedings are going well but hit or miss, sometimes she takes the whole feeding and other times just a few cc's. It's a start.

Today was a busy day for our elf and she is currently crashed out in her bed. Pray that her feedings at the new level go well and she continues to grow.

Much Thanks

2008-12-18T18:01:00.000-08:00

Many thanks to Mary Thomas and her band of helpers - Melody Bohac, Sharon K, Haley, and Courtney (and anyone else I haven't mentioned) for working sooo hard to make Ella's nursery a thing of beauty. I haven't got enough words to express how much it means to have her nursery ready for her to come back to and I wanted you guys to know that we send blessings and love for your hard work and gifts.

I can't wait to share the blessings that we have received with someone else in need. Thank you again Mary, Melody, and Sharon, we love you!

Canula go bye bye

2008-12-18T17:49:00.000-08:00

Ella is now off the nasal canula (no more oxygen). YIPEE!! She is doing great without it and is showing us that she is a big girl. She is still on 17.5 cc of milk and the IV nutrition but when she gets to 1400 grams the doctor will take away some of the IV and increase the feedings. I am anxious for the feedings to increase because this will mean we are closer to going home on full feeds. She is now 3 pounds 1 ounce (1380 grams)and I am ready for her grow...grow...grow!!

Here are some pictures of the big girl without her nasal canula, pray for her nose to go back into shape after the weeks of wearing the canula and for her to gain weight so everything else can fall into place

Loud day

2008-12-16T11:47:00.000-08:00

Ella is now 3 pounds 1 ounce and doing great. Today the bed next to us was a loud game of musical beds. There were 3 babies that came and went in a matter of 2 hours(transfered to another area since they were doing good) and the noise level kept our princess awake. She is also down to half a liter on her oxygen and that meant she had to get a different canula which means removing the tape from the old one and putting on a new one and that means more irritation. Then, the therapist came by and worked with her on bottle feedings...so...all of that together made our little girl fussy (no nap before noon feeding). She is now sleeping well in her bed and the neighbor next door is there for the time being so hopefully the noise level stays low. She is used to a certain amount of noise here in the NICU because there are always alarms going off, oxygen machines making noise, phones ringing...well...you get the picture, but today it even made me fussy. : )

I am having fun hanging out with the little girl because she has times where she interacts with me and acts like a full term baby instead of a preemie. The light at the end of the tunnel is getting brighter. Pray for continued health, growth, and for the bowels, and liver to thrive.

3 Pounds!!

2008-12-15T18:37:00.000-08:00

Ella is now 3 pounds!! Yeah!! Today our little princess looked soo beautiful and healthy and it was the fantastic thing that I had been hoping for. She is really starting to fill out and is acting like a big girl. When we worked with her on bottle feeding she drank the whole thing. (now she just needs to do that for every feeding but it's a start) Everyone that came by our corner of the NICU couldn't get over how far she has come but we know that God has his hand on her and isn't letting go. Here is a picture of her when the therapist was working with her bottle feeding. (I put a shirt on her today since she is a big girl now.)

Pray for her to continue growing, more bottle feedings, and overall health.

Little girl

2008-12-14T17:51:00.000-08:00

Our little girl is now 2 pounds 15 ounces and counting...yipee!! Ella is doing good they have lowered her oxygen liters to 1.5 which is great and hopefully she will be off of it soon...(i look for it to happen this week). She is now having more times of alertness and is proving that she is a big girl even though she may be petite : )

She gets to take a picture with Santa in the Nicu and I'm sooo excited because it might be the first time she wears clothes. This probably sounds strange to most of you guys but because of all the tubes, wires, and such she hasn't been able to cover them but now she is getting bigger.

Pray for Ella's lungs,liver(the IV nutrition isn't good for it), digestion, and for her continued growth.

2 pounds 14 ounces

2008-12-13T12:42:00.000-08:00

Yeah!!! Almost 3 pound!!! Our girl is now 2 pounds 14 ounces (1310 grams) and is doing well. They are still giving her the iv nutrition along with the milk and today they added MCT which is an oil that provides more calories but without the bulk of the nutrition fortifier. We need her to continue to gain weight so all the other problems can go away.

I got to go home for a baby shower and the question everyone wanted to know is how much does she have to weigh before she gets to go home and that is a tough question. There isn't actually a perfect number, it is more about how she is doing in all areas: can she drink enough to grow, breath on her own, stable blood sugars, liver functioning well...just to name a few. So, there isn't a magic number to look for - there is an overall wellness to achieve. I do see the light at the end of the tunnel and my daily prayer is that Ella continues to improve so we can all go HOME!!

Pray for her continued digestive health, lungs to get stronger (we may be off the canula on Monday), and for her to grow...grow...grow.

2 pounds 11 ounces

2008-12-11T12:32:00.000-08:00

Our girl is now 2 pounds 11 ounces (1230 grams) which is 3 times her birth weight(396 grams)....wow! Her feedings have been increased again (yipee) and she is still on the TPN (iv nutrition) so the weight gain should continue. Her oxygen has been lowered again and I am starting to see the light at the end of the tunnel...hopefully we will be off the canula soon.

Someone came by our corner of the NICU today and in the course of conversation asked when we were going home, and our response was "who knows." We have hopes for certain days but here in the NICU it's not a good idea to set your sights on a date because it can lead to disappointment...so...for now we are praying that it is soon.

2008-12-10T11:32:00.000-08:00

Ella is now 2 pounds 10 ounces (1190 grams). She is doing well on her feedings but they are keeping her on the TPN (iv nutrition) for now to help her gain weight. We began working with her on her bottle feeding again today and she is doing good but will just need to get back in the swing of things. They are working on lowering the flow on her oxygen so maybe we can take the canula out of her nose (I can't wait).

Here are some photos of the big girl...my favorite is her Elvis lip : )

Status quo

2008-12-09T08:53:00.000-08:00

Ella weighs the same today which is actually a blessing because she was sooo fussy at the hydascan that I thought she would lose weight. Her feeds have been increased by half a cc and hopefully she gets more tomorrow.(I would rather she get more today :( Overall our little girl is doing well just needs to grow...grow...grow...

I have to admit that I am weary. Weary of the same...status quo. I'm ready for some fantastic changes and big improvements. Pray for Ella's bowels, lungs, and infection to stay away.

More please

2008-12-08T15:40:00.000-08:00

They have increased Ella's feedings to 6.5ml and so far she is doing well. The reason the feeds have not been increased more is to find the balance between the iv nutrition and the feeds so she can grow...grow...grow. They did a hydascan on her liver today and she was not a happy camper about it because she had to lay there for an hour or so. There will be a follow-up scan tomorrow that will take about 10 minutes or so and we should get the results in a few days. She also had an eye exam and the eye doctor said everything looked good and doesn't need to see her for another two weeks(which is a good sign).

Today was a very busy day for our little girl and she is sleeping like a log after her field trip for the scan. Pray for a good report from the scan, her bowels to continue to clear, and her lungs to get stronger.

Hungry girl

2008-12-07T18:44:00.000-08:00

Ella is still getting a small amount of milk because her bowels still have air in them. Hopefully when her doctor comes back tomorrow he will increase the dose because she is a hungry girl. She definitely has her spunk back and is letting us know that she is hungry.

Pray for her bowels to clear and lungs to get stronger.

Feeding begins

2008-12-06T22:07:00.000-08:00

They have started Ella's feeds again and she is doing well with it. Her belly is soft again today and she is back to herself again...hungry and letting us know about it. Hopefully in the morning they will increase her feeds and get back to where she was before they stopped the feeds. The doctor increased the liters on her oxygen because the x-ray showed that her lungs were smaller and the increased liters will help. The lungs could be smaller because her belly was swollen but he didn't want to take that chance. She also lost 30 grams today but it was expected since she is only getting a small amount of food.

Pray for her lungs, belly to continue to improve, and for her to gain weight.

Where's the beef?

2008-12-05T18:21:00.000-08:00

They stopped Ella's feeds today...again. :( She is still a little girl and we have found that her stomach can only handle certain things before it becomes bloated and tight and they stop the feeds. This time, it was the cornstarch which was being used to level out her sugar levels but also made her bloated. Our fiesty girl was not quite her normal self today and when her nurse took her blood sugar she didn't complain which is not like her at all. However, by the end of the day she was cranky (which is actually a good sign) and fussy whenever I changed her diaper and took her temperature. Hopefully, they will start the feeds in the morning and our doctor is going to continue the IV nutrition even after the feeds are started because she needs to gain weight desperatly. Also, the glucose in the IV will regulate her sugar levels until she gains weight and her body is able to produce it on her own. Unfortunatly this is a double edged sword, because the IV nutrition (TPN) causes problems with her liver but without the extra nutrition she is not gaining weight like we want her too. (also, the extra calories in the TPN shouldn't cause her to bloat like calories added to her milk)

Pray for her liver that it will bounce back after the TPN and that her belly and bowels go back to normal. Also, pray for her to gain weight and grow...grow...grow

Preemie day

2008-12-04T13:39:00.000-08:00

Ella has lost 40 grams and is having a preemie day. Her belly is big again and they are taking x-rays and watching it closely but have not stopped the feeds (thank you Jesus). They are thinking that because she is drinking from the bottle twice a day she is using more calories and this is why she lost weight. This is a preemie day.L Life in the NICU is a roller coaster ride and we look forward to tomorrow.

Old hat

2008-12-03T18:56:00.000-08:00

Ella is now 2 pounds 8 ounces!!!(1120 grams) She is drinking from the bottle twice a day and so far drinks about half of what she eats over the hour, which makes her fuller faster and a little cranky(because her belly is full faster) but still growing. Her blood sugar levels are doing better just keep praying that they continue to be stable.

The chaplain of the NICU came by our little corner of the world today (he comes by and visits often) and we were talking about how we have now become old hats at the NICU spouting out the lingo like pros and discussing things like bilirubin, broviacs, Q3,CBC, ROP, etc...etc... The 11 weeks (can you believe it) that Ella has been in the NICU so far have been an education, and also an eye opening experience to see how far God has taken her and us, and in faith to see forward and know that she is going to have an amazing life that is built on the mountains that she has already climbed.

Baby girl

2008-12-02T18:05:00.000-08:00

Ella is still the same weight but has not lost which is a silver lining. Her blood sugar levels are still fluxtuating and it's frustrating because that means she gets her sugar tested every three hours before she eats. Because she did so well with the bottle feeding yesterday, they are going to bottle feed (or nippling as they call it) her twice a day. This morning she took 10cc from the bottle which is half of what she gets. Ella is 37 weeks even though she is still small so this is what she should be doing.

Our little girl has gotten used to having us around and likes being held when she gets fussy so when she gets home we will have our work cut out for us.

Another Monday in SA

2008-12-01T18:47:00.000-08:00

Ella is now 2 pounds 7 ounces (1090 grams). Today, she drank 15cc from a bottle but exhausted herself in the process so tomorrow we will take it slower. Her blood sugar levels are still in flux so they have started giving her cornstarch so the sugar will stay with her longer and help regulate her levels. Every day in the NICU brings us closer to going home.

Pray for her lungs to get stronger, broviac IV to stay viable and free of infection, digestion and bowels to work well, and to gain weight and get bigger.

Still growing...

2008-11-30T12:48:00.000-08:00

Ella is still 2 pounds 6 ounces but gained 10 grams so she is 1080 grams. Her glucose levels continue to fluctuate but they are managing it well. Overall she is doing good but just needs to grow, grow, grow!!!

Here is a picture of Ella chillin' in her bed with the giant pacifier that she uses to get used to the size of the bottle's nipple. Also, you will see that her hand is gone on the right arm but is healing very well and looks good. Sometimes I see it and think about the future and what it will hold for her...will it be difficult when she goes to school, or will she be as confident as I hope in my heart. All of the nurses that pass through our corner of the NICU always comment about how much personality Ella has despite her small size and this gives me comfort. I know God has given her talents and gifts that will sustain her through the difficulties that will arise from missing her hand and my daily prayer for her is that she continues to shine her light and touch others just like she does now from the NICU(via the internet :)

2 pounds 6 ounces

2008-11-29T17:06:00.000-08:00

Ella is now 2 pounds 6 ounces (1070 grams). Her feeds are up to 20ml and she is doing well on them but her glucose levels are still up and down. The tests to find out why her levels are up and down came back normal and they are now thinking that it is due to her prematurity. After she grows, this should be normal because her body will be able to keep up with the glucose levels on it's own. Her oxygen levels are doing well and every day she seems to be more grown up in many ways. Today she decided that she needed to be held because she was fussy and it was the only way to comfort her. (this is a big girl thing to do and I didn't mind doing it at all)

Here is a picture of me holding Ella while she is wrapped in a blanket sporting her dad's favorite college team.

Pray for her lungs to keep growing, her glucose levels to straighten out, for her to gain weight and grow!

Good news

2008-11-26T14:32:00.000-08:00

They have started Ella's feeds again (slowly) and she is having only a slight residual(food left in the belly). After checking her lab work for possible infections and looking at x-rays and everything that she has gone through in the past 24 hours they decided to begin the feeds again and watch her results. This was a great blessing for me because I could not stand the thoughts of watching the little girl hungry again. Now, she needs to gain weight because for the past 2 nights she has lost and since they stopped the feeds for a few hours it will take some time before they are able to increase the calories which will help with the weight gain.

Pray for Ella's bowels and digestion along with her glucose levels and lungs.

Big Belly

2008-11-26T07:43:00.000-08:00

They have stopped Ella's feeds again because her belly is swollen and there is too much air in her bowels. Once again she is having a preemie day and we are having a tough thanksgiving because the little girl doesn't get to eat any food. They are doing a complete round of tests to find out exactly what might be wrong because her color is a little off as well. They have started her on two antibiotics and in faith I am believing that any infection is stopped before it starts.

On another note, Ella's right hand came off yesterday and the skin underneath looks very good. She didn't seem to mind that it is gone as the picture can attest (it was taken right after it happened) but I did have some moments of mourning. Seeing her right arm without a hand attached to it was very shocking to me at first but now that I am used to it I can see that she will be just fine.

Pray for her to get back on the feeds and for infection to STAY AWAY!

1060 grams

2008-11-24T17:55:00.000-08:00

Ella is now 2 pound 5 ounces which is also 1060 grams. She is doing well however her blood sugar dropped below the number and they took the blood today for the tests. They ordered fewer tests so they did not need to give her blood to replace it and she did well when they were taking it so all is well. Right now she needs to grow and the systems in her body need to fall into place.

Pray for her ability to get her nurishment from a bottle (it will mean she gets to go home sooner), her liver function, glucose levels, lung function, and growth.

2 pounds 4 ounces

2008-11-23T07:15:00.000-08:00

Ella is now 2 pounds 4 ounces(1020 grams)!! Our little girl is growing by leaps and bounds and eveyone here is sooo excited. So far, her blood sugar has been higher than before and they still have not had to take the blood for the tests. Continue to pray that her glucose levels remain stable and they never have to take the blood (it means an additional IV line and giving her a blood transfusion because of the large amount needed). Lungs are doing well, but they still need to grow just like the rest of her. The tube in her throat has not been bothering her lately(thank you, Jesus) so pray that is stays this way until they can remove it. We are still working with her taking a bottle, but lately she has not been as excited as she was in the beginning, so pray that she gets stronger and is able to get her nurishment from the bottle or breast instead of the feeding tube. (this could delay her going home if she isn't able to do it).

Still growing...and growing...

2008-11-21T15:00:00.000-08:00

Ella is now 2 pounds 1 ounce today!! She is still doing well on her blood sugar and the level hasn't gone below the number where they have to take blood for the tests. They were able to lower the pressure on her oxygen and she is still doing well on it. We are looking forward to the time when she can get off the nasal canula. We practice with Ella drinking from a bottle or breastfeeding everyday and today we found out that we might have to feed her with an tube down her throat after she goes home if she is not able to drink enough from a bottle. My prayer is that she continues to improve with her sucking so we don't have to use the feeding tube.

Pray that she continues to grow, lungs improve, gets a good report from the eye doctor(Monday), improves her bottle feeding, and sugar levels stay stable.

Two Pounds!!

2008-11-20T17:52:00.000-08:00

Ella is now two pounds!! Our smiling girl is doing great with her feeds and her bowels are working well. Her blood sugars have been good so they have been lowering the glucose in her IV fluids and if the level reaches below a certain number they will be doing the tests to find out why. (I'm believing that she has leveled and won't need the tests) Right now she needs to continue gaining weight.

The therapists are working with her everyday on her sucking and today she drank 5cc from a bottle...she is a big girl now! Pray for her sugar levels to continue improving, her bowels to keep improving, and her lungs to get stronger.

Say cheese!

2008-11-19T17:07:00.001-08:00

You guys are lucky today because I actually got a picture of Ella smiling so enjoy. (I did) So far her feeds are going well except today she discovered her gag reflex and started spitting up because of the tube in her throat so now it is even more important that her lungs get stronger so they can remove her oxygen in her nose and remove the tube in her throat. We use the bottle today and Ella did very well but it will still be some time before she can get all her nurishment from the bottle or breastfeeding. Her blood sugar levels are doing well but in case they go down again they will do the tests to find out why.

Pray for lungs to get stronger, bowels to continue to function well, and blood sugar levels to stay normal.

1 pound 15 ounces

2008-11-18T17:50:00.000-08:00

Ella is now 1 pound 15 ounces and is doing good. Her blood sugar levels are still up and down and they will be running some tests to determine why if her levels go low again. This is one of the things that you deal with when your child is in the NICU the roller coaster ride of preemies. We tried breastfeeding with our little girl today and she did well, her sucking reflex seems to be working well. Her gestational age is actually 35 weeks but her size is still smaller than that. She now has a speech therapist, physical therapist, and occupational therapist that will be working with her each week on her development. Our little girl has lots of specialists : )

Here is a picture of me holding Ella before we tried breastfeeding. Pray for Ella's blood sugar levels, bowels, liver function, and lungs.

Full tummy

2008-11-15T19:09:00.000-08:00

Ella gained 10 grams but is still 1 pound 14 ounces. Last night they were worried about her girth (measurement of her tummy) being too big and so they changed her feedings instead of halting them. Thank you Jesus!! She is now eating 14ml in 1 hour and they vent her tummy (help the air escape) for two hours. They have also started her on medicine that will help her bowels clear. Our prayer is that she will not have to stop the feedings again since that has delayed her release from the hospital for another week. Her sugar levels have been good and hopefully tomorrow they will be able to lower her glucose level in her IV fluid.

Continue to pray for Ella's digestion, lungs to get stronger, and also her liver function.

1 pound 14 ounces

2008-11-14T14:42:00.000-08:00

The little girl is getting bigger everyday now that she is back on her feeds. All of her levels are starting to bounce back from the days of no food and she gained 40 grams and is now at 1 pound 14 ounces(840 grams). Today, the occupational therapist came to work with Ella on drinking from a bottle, look at her head for proper shape and arms and legs for joint movement. The therapist will continue working with our big girl because she still has a way to go but she was sucking on her new pacifier with gusto so that gives me hope.

Pray for Ella's liver function because the days when she was off of her feeds has sent it backwards a little, also pray for her continued feedings and her lungs to get stronger.

World still turns

2008-11-13T17:35:00.000-08:00

Ella is up to 13ml of milk every three hours, and they will increase it by 1ml every twelve hours. So far, she is digesting all the milk and our big girl is 1 pound 12 ounces now (800 grams) and I'm sure will be up to 1000 grams in no time.

Today Ella and I had a visit from some pastor friends of ours from out of town and their prayer over her was a blessing and a balm to my tired soul. I know that I sound melodramatic, but here in the NICU we have made new friends but they only know the Christy that has a daughter in the hospital. The prayer for Ella today was my past touching her future and it made me believe even more that she is going to have an amazing story that will touch people in ways that I could not. God has given our super girl a ministry and she is only 1 pound 12 ounces.

Breathing easy

2008-11-12T09:24:00.000-08:00

They have taken Ella off the ventilator today and will start feeding her again at noon. They have to start slowly with only 3cc of milk because her bowels were also asleep when they did the surgery but we are believing that this is just the beginning and she will be back up to regular feedings in no time. Our little fighter is resting well today after her upset yesterday and came through with flying colors. It does my heart good to see her resting comfortably and sucking on her pacifier with gusto : ) (here is a picture of the little foot)

The last week has brought many set backs to our super girl, but I see the tide turning back in our favor. Over the last two days we have had several clergy members visit our little corner and I don't think it is coincidence because God knows just when we need to know that He sees our needs before we even ask. Pray for Ella's digestion that she will be able to get more food soon because our little girl needs to be a big girl. Also, remember her eyes in prayer because we believe that the surgery was a success.

Eye surgery

2008-11-11T17:45:00.000-08:00

Ella had laser eye surgery today to stop the growth of the veins in her eyes that if not stopped could detach her retinas. They had to put her back on the ventilator to do the surgery because of the sedation and it will be removed as soon as she wakes up. Right now our prayer is that the surgery corrected the problem and she will not need additional surgery which will mean a trip to Houston.

It was rough for me today because Ella was crying when they took her away for the surgery. Even knowing that she will not remember the pain of her first months of life it's still hard watching your child go through pain. Thank you to everyone that is praying for Ella and us because we need them.

Baby blues

2008-11-10T16:27:00.000-08:00

Ella's food has been increased again today to 9ml and so far no residuals (our little girl is a hungry one). Her tummy is soft again but continue to pray for her digestion and bowels that they stay clear of infection.

Ella had her follow-up eye exam today and the eye doctor says that she will need laser surgery on both her eyes to stop the veins that have continued to grow when they shouldn't. The surgery will be on Tuesday evening or Wednesday so remember Ella in your prayers because we don't want any complications and we need the veins to stop or it will require further surgery.

Little bites

2008-11-09T16:56:00.000-08:00

They started Ella's food again last night and increased it today at 9:00am and then again at 6:00pm. So far she has only had residuals (food left in her tummy) once and that was probably because she was laying on her back and they don't digest well that way. We are praying that she continues to tolerate her feedings and her bowels do not swell again. This has set her release date back even further but hopefully she is back to moving forward.

I have to admit that when they stopped her feedings on Friday I was ready to raise my fist in the air and yell at God because this little girl has been through more in her short life than I have in my long one. Watching her cry and toss around because she was hungry and all the while I couldn't do anything about it broke my heart. However, this morning I had a revelation. I went to a church here in San Antonio and they had communion at the end of the service and it made me cry. Is what I'm feeling about Ella even close to the feelings that God felt as he allowed His son to die? Don't misunderstand how I am feeling, I am not at all glad that she is going through this set back but I now see more clearly that if God was willing to go through the pain of giving up His son for us then wouldn't He also be watching out for Ella. She is a child of God just like all of us and He knows her every tear.

Pray for Ella's digestion and that the bowels will not be swollen anymore. Also, pray for her lungs to mature.

Where's the beef?

2008-11-07T13:06:00.000-08:00

They had to stop Ella's feedings today because her bowels are swollen again. There is an infection of the bowels that they are worried about so they are doing x-rays and watching her closely. In the meantime however, our little cookie monster is very hungry and grouchy because they haven't been feeding her. Last night when they weighed her she was up to 1 pound 13 ounces but since the feedings have stopped that will more than likely go back down a little bit. If all goes well during the night and her x-rays look better they will start feeding her again tomorrow.

Pray for her digestion and especially her bowels to clear. Also, continue to pray for her lungs because they are still very immature.

Big girl

2008-11-06T18:02:00.000-08:00

I stand by Ella's bed everyday and notice everything about her...the way she starts getting fussy about an hour into her feedings (full tummy), how she smiles when I call her my baby girl(it might be gas but I don't care), that she doesn't like getting her diaper changed, and today I learned that when she is crying during kangaroo care that she likes to be rocked. Micro preemies don't like to be touched and stimulation like singing, touching, and rocking upsets them because they are not ready to be touched.

Today, I got to rock Ella when she was fussing and she enjoyed it, that makes her a big girl. Now I can see the light at the end of the tunnel. They also increased her feedings today and hopefully she will have gained weight. She is still at 1 pound 11 ounces but we are looking for more weight gain soon. Her lungs still need to mature so pray for them to grow so she can get off the oxygen. Otherwise another good day here for our BIG GIRL Ella.

More calories

2008-11-05T18:45:00.000-08:00

Ella is now 1 pound 11 ounces! Our little girl is gaining weight slowly but surely. Her lungs are still immature and need to grow but overall she is doing well. Everyday that she holds on to her extra grams is another day closer to going home. Continue to pray for her lungs, digestion, and also for the broviac IV to stay infection free.

This picture is of Ella wearing Aaron's wedding ring as a bracelet and I know it shows how small she is but when I see it I realize how big she is because when she was first born his ring swallowed her arm. She has doubled her weight since she was born and I am sooo excited.

1 pound 10 ounces

2008-11-04T12:54:00.000-08:00

Ella went up by 50 grams yesterday and now weighs 1 pound 10 ounces...750 grams. Since she went up by so many grams she will probably come down today but as long as she doesn't come down by much we'll be happy.

Dr. DeYoung talked to us today about Ella's eyes and he is much more optimistic about her need for surgery. He feels that because of her gestational age she is not as high of a risk as the eye doctor thinks. She may still need laser surgery but I believe that with prayer her eyes will be whole.

Ella's lungs still need maturing and she needs to grow, but otherwise we are doing great here in San Antonio.

Eye Doctor

2008-11-03T12:39:00.000-08:00

Ella had her first eye exam today and she probably reacted like all kids with their first exam, she cried, turned her head away from the light, and then after it was over she fell asleep. The doctor let us know that because of her low birth weight, Ella is at high risk for ROP (retinopothy of prematurity - veins in the eyes that grow too fast and sometimes retinal detachment) which causes eye problems and sometimes blindness. Today, he was only able to tell that her eyes are premature but he will do another exam next Monday. At this point he is almost sure that she will need laser surgery on her eyes and possibly more intense surgery in Houston. I know that Ella was small when she was born but I know with even more confidence that my God is able to do immeasurably more than even I can ask or imagine. Pray for Ella's eyes that the veins will stop growing at the right place and that she is protected from the problems that could come from her being so small.

Ella is still having issues with her blood sugar but I think we have finally found the right balance because they have been normal today. Pray for her sugar levels that they will continue to be in balance and that they will be able to take her off the glucose in her IV fluids.

Today Dr. DeYoung and I discussed Ella's lungs and it looks like they are still young and immature. Since Ella was so small her lungs are underdeveloped and because of this she will probably be on the oxygen for another month and in the hospital into 2009. Pray for her lungs to mature and for no problems in later years because of her low birth weight.

Ella's eyes and lungs need some miraculous intervention.

1 pound 9 ounces

2008-11-01T15:05:00.000-07:00

Our girl Ella is 1 pound 9 ounces today or 720 grams for the metric people out there...We have passed 700 grams. yipee!

She is doing well on her feedings but her blood sugar still has to be monitored because it continues to fluxuate. Her lungs are still doing well but we need them to get stronger. Overall a good day.

Trick or treat smell my feet

2008-10-31T12:34:00.000-07:00

Today is October 31st and here at the hospital they made a cute little sign on Ella's bed with her footprints on it. : ) She lost 10 grams and is at 680 today but we are looking at 700 really soon...that's my prayer anyway. She is still the same on her oxygen so continue to pray for her lungs. When she is off the oxygen my heart will be much relieved. Overall, it is a good day and we are believing for a good weekend...in Jesus name no infection, strong lungs, and great digestion amen!

Miss Independent

2008-10-30T15:22:00.000-07:00

I have nicknamed Ella Miss Independent because our goal as she grows up is to raise her to not let her birth and first 4 months of life hold her back in any way. In fact, we know she will use the miracles of her life to touch others just as she is doing while she is in the hospital. She thinks that she is the only baby in the hospital because she wants all the attention.

They raised her feeding from 12ml to 17 and half ml...isn't that awesome...and she is eating all of it there is nothing coming back. YES! We expect our little girl to get bigger everyday. Today she is still at 1 pound 8 ounces but has gained 20 grams...690. We should be past 700 by the weekend. Pray for her lungs to get stronger, her digestive system to get stronger, and infection to stay away.

Still truckin'

2008-10-28T10:46:00.000-07:00

Our girl Ella is still truckin' along. She is at 1 pound 7 ounces, which is good because she jumped up so fast to 1 pound 8 ounces that we suspected it was water weight, and we want good calories. They have started her on medicine for her lungs which should clear the fluid so they will get stronger. She is doing well on her oxygen levels so this leads me to believe that we are moving forward. Her blood sugar is still up where it should be and so they are lowering the amount of glucose (sugar) in her IV fluids. Overall, Ella continues to improve, just pray for infection to stay away and her lungs to improve with the medicine. Here is a picture of my fingers and Ella's hand while Aaron was doing kangaroo care.

Ella is looking like a big girl now with more personality in her features. The nurses have commented that she has my mouth (usually they say this when she has it open hahaha) and Aaron thinks she has his nose. For the parents of a preemie this is a heart pulling time because it has taken her 6 weeks to reach the point where she looks like a baby instead of a wrinkled preemie. Yeah! Thank you Lord for the answers to prayer that we have already seen.

1 pound 8 ounces

2008-10-27T07:54:00.000-07:00

Ella weighs 1 pound 8 ounces today...680 grams. Everyday she seems to be getting bigger, and her features are more like little girl instead of preemie. She is doing well on her oxygen and the settings were lowered today so pray that her lungs will get even stronger...I can't wait until she is off the nasal canula.

Continue to pray that infection stays away as well as for her digestive system to get even stronger for more weight gain : )

Right hand

2008-10-26T11:37:00.000-07:00

I have avoided a subject in the blog that is getting to the point where I can't ignore it, and that is Ella's right hand. As you know, if you have been reading this blog, that Ella's right hand was damaged by the IV line (or something related to it) and it has slowly died. At first, it was a devistating loss for a miracle girl like Ella, but during my prayer time I feel like God let me know that we are to raise her to be a strong independent woman that doesn't let the loss of her hand bother her or stop her from doing everything she wants to do. Looking at her future I can see her speaking to children about what they can do if they have a set back like her hand. I'm sure that Ella will be a beautiful girl that will attract people by her big personality, strong spirit, and loving heart. We have no doubt that she will accomplish everything she wants to....who knows maybe she will become a neonatologist and heal small babies like her.

I tell the story of her hand today because when the time comes it will come off by itself and will not require surgery. From the looks of her hand now, the time may be soon and we would like your prayers for it. Pray for her protection from infection, for Aaron and I because that may be a trying time, and that it will happen without pain to her. Thank you for all the love and support during Ella's time in the hospital and for the love that she will receive when she gets to come home.

620 grams

2008-10-26T11:26:00.000-07:00

Ella has gained 10 grams...since she was born at 395 grams 620 grams is amazing...it still equals 1 pound 6 ounces but we'll take it. Her blood sugar is doing so well they are going to lower the amount of sugar that is in her IV and her blood gas test was textbook this morning : ) this tests the oxygen, ph balance, and carbon dioxide in the blood. Her lungs seem to be improving since she is only needing from 21 - 25% oxygen and we breath 21% oxygen normally in the air. This is a step forward and hopefully they will be able to lower the liters per minute from 4 to 3 and move toward breathing on her own...yipee!!

Overall, Ella continues to improve...pray for infection to stay away, her lungs to improve even more, and her bowels to stay clear.

Daddy care

2008-10-25T08:55:00.000-07:00

Aaron got to come to San Antonio on his days off and I let him do kangaroo care since he hadn't held Ella yet. She seemed to enjoy time with Daddy and I think her role is solidly set at Daddy's little girl. Overall, she is doing well, still a hungry little girl and back up to 1 pound 6 ounces. Continue to pray for her lungs since we want them to get strong and pray that she starts gaining weight.