Wednesday, December 31, 2008

3 pounds 10 ounces




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.

Tuesday, December 30, 2008

Big yawn


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.

Monday, December 29, 2008

Many faces of Ella





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.

Sunday, December 28, 2008

Bottle feedings


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.

Friday, December 26, 2008

Christmas due date

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).

Tuesday, December 23, 2008

Great report


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)

Sunday, December 21, 2008

Just chillin'



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.

Friday, December 19, 2008

Santa visits the Nicu




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.

Thursday, December 18, 2008

Much Thanks

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



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

Tuesday, December 16, 2008

Loud day

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.

Monday, December 15, 2008

3 Pounds!!


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.

Sunday, December 14, 2008

Little girl

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.

Saturday, December 13, 2008

2 pounds 14 ounces

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.

Thursday, December 11, 2008

2 pounds 11 ounces

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.

Wednesday, December 10, 2008




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 : )

Tuesday, December 9, 2008

Status quo

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.

Monday, December 8, 2008

More please

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.

Sunday, December 7, 2008

Hungry girl

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.

Saturday, December 6, 2008

Feeding begins

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.

Friday, December 5, 2008

Where's the beef?

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

Thursday, December 4, 2008

Preemie day

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.

Wednesday, December 3, 2008

Old hat

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.

Tuesday, December 2, 2008

Baby girl


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.

Monday, December 1, 2008

Another Monday in SA

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.