Tuesday, September 30, 2008

Today's News

We have seen many doctors today. The blood specialist came by and is doing a study on Ella's DNA to try and find out if this is why her hand reacted like it did. Also, a liver specialist was here looking at her latest sonogram and let us know that her liver is in trouble. They are trying to find out if she has an infection that is causing the trouble or if the connection of the liver is bad.

They started the feedings again today at noon trying to get her stomach and bowels to move and we find out if it worked at 3pm. We need prayer for Ella's hand, that she will retain at least some of the palm; her liver function, and her digestion.

Thank you again to everyone that is praying and for the amazing comments that help us to continue keeping the faith.

Monday, September 29, 2008

Silver Lining

There is a silver lining to today's cloud...Ella is off the ventilator and doing well. Praise the Lord. They started feeding her milk again and we will know in another hour if she is taking it. I have to admit that I am excited that something is going our way again. Of course, they did warn us that sometimes when a baby is taken off the respirator they sometimes have to go back on for a short time but for now I will take this victory and run with it.

Right Hand

They brought in a hand specialist today to look at Ella's right hand (which looks worse today) and his prognosis is not good. The fingertips look dead and they are just waiting to see if they are going to fall off on their own. This is the only thing they can do at this point - wait and see.

Overall, Ella is doing well but she needs to start digesting the milk since the IV nurishment is causing her liver to be ill. They may take her off the respirator today which will be a blessing for me since it will give me an opportunity to hear my daughter's voice for the first time.

Sunday, September 28, 2008

Another Surgery

This evening Ella had some levels in her latest blood test that showed some elevated acid levels which are caused by her hand. (her fingertips are black which leads them to believe they are dying) Because they needed to give her some additional medicine that needed to start another IV line. The pediatric surgeon will be putting a line in her neck that should replace the one in her arm that caused the problem in her hand.

Understandably Aaron and I are nervous about any IV line they put in since her hand is still discolored and a strong reminder of the last IV. Continue to pray for her hand that she will not lose the tips of her fingers, that the surgery is successful and causes no side effects, and that she will begin to digest the milk again(this is another reason she needs another IV).
Ella has taken a turn for the worse today. She is not taking to the feedings and they may have to stop them today if it continues. Her right hand is also not improving and they can't find a pulse in her wrist. They are also delaying taking her off the ventilator since she has other complications. Pray for Aaron and I that we will have strength because each report takes a toll.

Saturday, September 27, 2008

Mountains and Valleys

Today while Aaron and I were at lunch here at the hospital we saw a group of pregnant women and their husbands come into the cafeteria after a tour of the hospital. Aaron commented that the women were ready to pop and I have to admit that I suddenly had the need to stare at my food. There are moments during the day when I think that it is unfair that I am not pregnant any more and instead Ella is in a new womb.

Since Ella's hand is still not doing what it is supposed to I feel the pain of not carrying her in my womb. The things that her body would be doing in the womb are much less invasive than having her hooked up to these machines. I read in Mark today about when Jesus healed the man with the shriveled hand(it was the right hand like Ella) and pictured Him standing next to Ella's bed asking her to stretch it out and seeing it healed. Jesus wanted the children next to him and today is no different.

Our miracle girl is going to have an amazing testimony when she comes home. Thank you to everyone that leaves us comments and lets us know that they are walking this path with us.

Right Hand

Ella's hand is doing better today but it is still not at 100%. The doctors are watching her to make sure she is getting a pulse in the fingers and wrist since her fingertips and thumb are still white. Continue to prayer for her hand that she will have full use of it.

Otherwise she is doing great, they have lowered her respirator settings and are talking about taking her off of it tomorrow. She is doing so well in every other way that I am not about to lose my joy.

Friday, September 26, 2008

Prayer needed

At noon today the nurse and I were changing Ella's diaper and repositioning her and noticed that her right hand was very white. The nurse practitioner put in a new IV yesterday on her right arm and we were told that a spasm in the vein caused the right hand not to receive enough blood.

Pray for her hand that it will not have any permanent damage and pray that they are able to replace the IV with no problems (the last IV took many attempts on both arms before they were successful).

Ventilator




Ella is doing so well breathing on her own that Dr. DeYoung thinks she might be off the ventilator by Monday or Tuesday...YEAH! Again for a baby her size (still 1 pound)this is miraculous because her lungs should be underdeveloped. However, my prayer has been calling those things that are not as though they were...so I have been calling her lungs developed and her body strong.

These are pictures of the ventilator and I put my hand next to the little mask so you can get an idea of how small it is. (she is intubated right now - tube in her throat)

Morning Report


We arrived at the hospital later than usual this morning because we had a long day yesterday. Dr. DeYoung was here when we arrived and gave us lots of GOOD news. Ella started feeding last night and is tolerating it well. He explained that most of the babies don't accept the milk right away because they don't have it that way in Utero, however our little miracle is taking to it.

Dr. DeYoung said she is a miracle. Another blessing that all of us already know. A friend of mine called and said that we are building our testimony, just another way for God to reveal His power in our lives.

The picture is of Ella's corner in the NICU.

Thursday, September 25, 2008

Diaper Duty


Here is a picture of Ella's diaper in comparison to my cell phone (an LG Shine)so you guys can get an idea of how large(how small: ) it is. The diaper is actually too large for her at this point...wonder of wonders.

Would you like fries with that?



Since we live in Victoria and Ella was too small to stay at the hospital there she was sent to San Antonio and of course we followed; but staying in a hotel would not be financially possible since they are expecting her to stay in the hospital for a month or more before they send her back to Victoria.

Because of Ella's size we were eligible to stay in the Ronald McDonald house which is only 3 blocks from the hospital. I have to admit that I will always hold the Golden Arches in my heart with love and will never (well almost never) complain when our daughter wants the newest toy in the happy meal box. Here are pictures of Ronald at the front door and our dining room with the kitchen in the background.

Thank you McDonalds!

Slow Day : )


Today we got to the hospital and got a great report. Every morning you get up and go to the hospital not knowing what to expect. Yesterday we got here and immediately they started preparing us for her surgery with at least 4 doctors walking around us conferring and looking at echos of Ella's heart. The rest of the day was a whirlwind of activity and machinery beeping because of oxygen saturation, lungs reviving again (they had to push the lung aside to get to the PDA) and overall surgery recovery.

But today is a new day with good levels all around. They took Ella off of the extra medicine that they were trying to use to fix the PDA and they also took off the phototherepy (bright lights) for jaundice. VERY EXCITING!

It is a good day to give thanks and praise!

Dr. DeYoung

Ella's doctor is Dr. DeYoung, a doctor that explains everything to the nervous parents with patience and understanding. Yesterday he let us know that he was getting attached to Ella and was just as excited as we were to hear about her great progress. He has three daughters at home which I'm sure has something to do with his attachment.

Dr. DeYoung was sooo excited about her good reports that he had to come back and listen to her heart. We have been blessed in so many ways that at times I have to stop myself and give thanks. In the midst of the storm HE is there!

Wednesday, September 24, 2008

Flying Colors

The surgery was a great success!! The surgeon told us that the vein (PDA) was the size of his pinky and for a baby Ella's size that is very large. They didn't understand why the vein wasn't causing more problems since it was so large, but we don't have to wonder we know it's prayer!

Surgery Today

The doctors have conferred in mass and decided to do the surgery on the PDA this morning at 10:30Am. Pray that the surgeons hands are guided by God and there are no complications in any way. I will let everyone know how it goes after they finish.

Just a quick note that the Cardiologist doing the surgery is from Houston and mentioned he attended Lakewood when he lived there (Aaron was reading his Bible and he mentioned it). There are no coinciedences with God. Ella is in the palm of HIS hand!

Tuesday, September 23, 2008

Grammar

This is an apology to all the grammar experts...please excuse my punctuation and syntax...I sing pretty but don't write like a professor. Thanks for showing love.

Pictures

We are getting a digital camera today and will be posting pictures so everyone can see Ella's new womb.

One Pound

Today we came to the hospital and they told us that Ella weighs one pound. On one hand that is a reason to celebrate but on the other hand it isn't. When you are dealing with preemies, especially as young as Ella, the doctors don't want them to gain weight in the beginning they would rather focus on the organs and vital systems. Gaining weight can also be a sign of edema (swelling) and in preemies that means they are sick. However, it is nice not to have the smallest baby in the NICU.

When Ella first came to Methodist she was quite a spectical with lots of people going by her bed because they all wanted to see the 14 ounce baby. I found out from our nurses that the smallest baby they have taken care of was a 12 ounce baby that they called their coke can. He is 3 years old now and comes to visit them often and they say he is full of spunk. These are the stories that I love!

The doctors came by this morning (Neonatologist, Cardiologist, and Cardiovascular Surgeon) and they are delaying the surgery because Ella is holding her own and IMPROVING! That's the power of prayer. Thank you to all that are standing in the gap for our family.

Monday, September 22, 2008

The Story

On Wednesday, September 17th I went to labor and delivery because baby Ella wasn't moving like she should, and at 8:45pm she was delivered by an emergency C-section. I was 26 weeks pregnant and she weighed 14 ounces at birth. Right after her birth, she was lifeflighted to San Antonio's Methodist Children's Hospital where they have a Neonatal Intensive Care Unit. Aaron followed Ella to San Antonio on Thursday morning and I had to stay in the hospital in Victoria until Friday. I rested and followed my family to San Antonio.

Right after Ella was born the nurses told us that she was breathing on her own and in fact when they would have to perform tests or such they said she was giving them dirty looks. Aaron made sure everyone knows she got her attitude from me. She's a fighter!

As of today, she is stable but still sick. There is a vein in your heart that stays open in the womb and after birth closes within a few days but in Ella's case is not closing. The vein, Patent Ductus Arteriosus (PDA), causes blood to bypass the lungs, circulating out to the body without picking up vital oxygen. This issue occurs in about 80% of premies that are under 1 pound at birth. Right now the doctors are delaying any surgery because her body is functioning in spite of the PDA.