Tuesday, May 30, 2006
I just HAD to post this adorable picture of Ella after her bath tonight. There will be lots of updates tomorrow because I'm talking with her doctor in the morning. We did find out tonight that they want her to do a sight test before she leaves the hospital, so start to pray for those big eyes!!
She also sucked pretty good on the pacifier today, so hopefully we'll be doing bottle feeds by the end of the week. PLEASE pray for feedings!!
The bumps/infection on her left wrist was looked at by a doctor today, and although I don't understand the diagnosis...they are putting a hot compress on it every 6 hours and it seems to already be doing better.
Again, God is so good to us, thank you for your prayers and support...it is amazing more and more every day.
- Ella had a spinal tap/lumbar puncutre last Friday. The results came back negative for the infection (PRAISE GOD!!) but there is still some "goo" left over and more white blood cells and protein than they would like...SO, we are doing the antibiotics for another week. This also means she'll probably have another spinal tap towards the end of this week, but if it's super clear then we'll be off antibiotics by next Sunday.
- Also, thanks to your prayers Ella is starting to take a pacifier. It's a VERY SLOW process and pretty frustrating at times, but she is sucking 3-4 times in a row, which is a start. We do oral stimulation every day to try and work on her reconnecting that automatic reflex.
- Her arms and legs seem to be more reactive and reflexes are getting better. They have been weening her off meds that sedate her so she's becoming a lot more alert.
- Ella has a spot on her left wrist that is concerning Joe and I so we are having the doctors take a look at it today, I'll update you if there is anything to report.
- Please pray for her left hand, sounds funny, but she holds her thumb inside when she makes a fist...so they have this thing called a "thumb loop" to keep it from being inside. The thumb being inside the fist is a sign of neurological damage...which is concerning.
- Oh, and we got to give Ella a bath this past Saturday and we get to do it again tonight...Joe did most of the work and he's doing GREAT as a dad!!
- Also, she weighed in at 6 lbs, 15 oz...so she's doing really good in her weight.
People have asked about time frames for everything, and when she'll be home...HA, ME TOO!!! The doctors always give the longest date out...she'll be on meds at LEAST until next Sunday. She also needs to start to feed by at least a bottle (and hopefully breast) so that is our prayer right now.
Thank you to the people who have commented on the site, sent emails, prayed, and sent letters. It has been amazing to watch God work in our friends and family. We love each of you, even those of you who we have not met and may never meet...thank you for praying for our little girl and our family.
Here are some pictures (the fun part!!):
Friday, May 26, 2006
Here are two pics from Wednesday:
My daddy loves me SOOO much!!
Here's my Big Girl Bed and here I am with mommy.
Wednesday, May 24, 2006
Here are some pictures of our beautiful baby:
Above is daddy singing bible songs to Ella...she loves it when he sings to her.
Tuesday, May 23, 2006
- Ella got her IV line to her belly taken out at 3pm yesterday and Dabney (the nurse) called to let me know it came out with no bleeding and her new IV line into her hand went in with only one prick. She has a splint back on her right hand where the IV is, but only so she doesn't pull it out since she's gotten more active.
- She starting to make more noises, but still no real crying or even loud grunting...but we are getting there. Funny how you WANT them to cry until they do!!
- We got blood culture results back and it's been 5 days with no growth so her blood seems to be clear...we have another spinal tap (lumbar puncture) probably on Thursday to check her CSF (Cerebrospinal fluid (CSF) is a clear bodily fluid that occupies the subarachnoid space in the brain (the space between the skull and the cerebral cortex—more specifically, between the arachnoid and pia layers of the meninges). It acts as a "cushion" or buffer for the cortex. en.wikipedia.org/wiki/Cerebral_Spinal_Fluid) which is where the disease has been hanging out.
- When they did Ella's MRI last week they found an enlarged blood vessel right smack dab in the middle of her brain. This has nothing to do with the infection, and we wouldn't have found it unless she ever had an MRI. However, the neurosurgeon would like to do an angiogram (AN-jee-o-gram): An x-ray of blood vessels; the person receives an injection of dye to outline the vessels on the x-ray.http://www.google.com/url?sa=X&start=0&oi=define&q=http://www.spineuniverse.com/community/cancerdictionary.html). We won't know more about this or need to make decisions till a few months after her current infection has cleared and we'll keep you up to date on findings.
Current Prayer Requests:
- That Ella starts regulating her own temperature.
- She start to grow and put on "good" weight, not water weight.
- Learn to suck/swollow/breathe...HUGE before she can go home...got a call from the nurse this morning and she is starting to hold a pacifier in her mouth correctly, but we are still a long way from being discharged.
- Patience and Understanding...I, personally, am getting so frustrated and ready to bring her home and just get on with our lives on a normal basis (although "normal" will even be different)...just pray that I am still and listen to God...He's been so faithful to us, prayer that I can be as faithful to Him.
Monday, May 22, 2006
Here is where we stand as of yesterday:
- They are increasing her milk intake (still through the feeding tube) 5 ML every feeding and decreasing the rate of her IV fluids and lipids as she goes up on the milk feedings. Her tube is through her nose now so that she can practice having a pacifier during feedings to relate a fully tummy to the sucking reflex.
- Taking her off the Keppra (Keppra is best used for partial-onset seizures—that is, seizures that begin in a limited area of the brain. Sometimes these seizures spread throughout the brain (generalize). Usually, Keppra is added when another seizure medicine is not controlling all seizures, rather than being used by itself. Keppra generally is not effective against absence seizures and infantile spasms. It may be somewhat helpful in treating myoclonic seizures. ) today, Monday, but she's still on the Phenobarbital (Phenobarbital, a barbiturate, is used to control epilepsy (seizures) and as a sedative to relieve anxiety. It is also used for short-term treatment of insomnia to help you fall asleep.)
- The IV line that is currently in her belly button (bc it's the best and least invasive place for them) is coming out today...so hopefully we'll be able to hold her now!! PRAISE GOD!! The only things that she has left to take through IVs is her antibiotic (down to only one) and her phenobarbital.
- She is having even less tremors the last 2 days, but they are still pretty evident and are still not completely diagnosed.
- At 3 of her feedings (which are a 3, 6, 9, and 12...so 8 times a day) we get to do "range of motion". Joe has had so much fun getting to do this bc we get to touch and play with her. He massages out her hands, stretches her arms up and across and over and down...talking to her the whole time. Then he moves on to her legs and gives them a good stretch at each joint. It really is fun to watch him interact with her.
- We are also getting to change her diaper and take her temp when we are there for feedings. Joe has gotten to change a couple...really good practice. Somehow he has managed to not have to do any of the dirty ones...that will change when we get home!!
- She is getting "tummy time" after some of her feedings so she can practice raising her head and strengthening her upper body muscles.
- Yesterday we came in and she was in a cute pink outfit...I'll post those pics.
Your prayers have been answered in so many ways. I can't even find the words right now to express this. As I look back over each day and the prayers that were lifted up I can SEE God's answers. They weren't always as fast as we wanted them or exactly as we wanted them, but as each of you (and others) were on your knees it was so obvious what God was doing. I know that my prayer life has never been stronger, but also never been more real. God asks us to seek him and to honestly search for him with all of our heart...I think he got our attention these last 12 days. He desires for each of us to come to him daily and all day long with the same urgency that we came to him for Ella...I hope that through this trial of ours it has showed you the majesty of God and the love of Christ. Please continue to pray for our family. Not only for medical reasons, but just bc we are a new family trying to follow God and his will for the 3 of us. Likewise we will pray for you all. Maybe not by name, but God knows who has lifted us up and will bless you for it.
Here are our current prayer requests:
- For a poopy diaper (that's a prayer that makes me smile). As Ella is getting all of this milk straight to her tummy we haven't seen any come out. We know it's not in her tummy bc they check before each feeding, so just prayer that it's all functioning correctly and she starts to wake up her bowels.
- That we CAN hold her today. It's amazing how your arms can literally ACHE to hold your child. I haven't held her next to me since that Wednesday night she was born and I'm so ready to just sit down and get to rock her.
- That the tremors continue to fade and become a non-issue. I'd like for them to not cause her any pain, and you can't really ask a baby what's uncomfortable and what hurts.
- For Joe and I please pray for rest, patience, peace, true understanding and trust. We know that God is in control, I don't think we could handle this all otherwise, but just giving Ella to God with open hands is sometimes rough. Please continue to just life us up as we learn to be parents and learn that she is a gift from God and is ours, but only through Him.
Saturday, May 20, 2006
Thursday, May 18, 2006
Wednesday, May 17, 2006
Monday, May 15, 2006
Sunday, May 14, 2006
Saturday, May 13, 2006
Friday, May 12, 2006
Ella seems to be doing better although still very critical. She is staying stable which for us is good news. They have now diagnosed her with Group B Strep Meningitis and they have adjusted her antibiotics to help her fight this nasty infection. Today she has had 3 less severe seizers and has recovered more quickly from them. She has urinated which is a great sign. The doctor has told Andrea he is confident they will be taking their baby girl home, although it will probably be a month or so. Please continue to pray for the whole family and especially Ella. I will update you all again this evening. Andrea and Joe ask that you Please NOT CALL OR PHONE !!!! Thank you- Sara
Thursday, May 11, 2006
Well Ella has taken a turn for the worse as of right now. On our way to see her tonight Andrea called and Ella had another seizer, which made her critical. It took all of a few minutes to have the seizer and took the doctors 2 hours to bring her back from a near death experience. She is not able to give the fight she needs to right now because her body is so sick. The doctors have her on antibiotics to treat the meningitis and are praying with us. At this point the power of prayer is her only chance. They have been very open with the family that she may or may not make it at this point. She needs a lot of help to continue fighting and needs the healing hand of God to make her better. She is having a blood transfusion done and they said she will get worse before she gets better. The nurse said Ella has had a lot of near death experiences today and she is having a hard time getting back to us. We will keep you all posted as we hear things. I was at the hospital tonight along with both sets of grandparents and our brother Drew. We have prayed over Ella and just continue to ask for your prayers. We did scrub in and get to visit Ella for a few minutes and she is still hanging on. Joe and Andrea continue to talk to her and cheer her on so she knows we all love her and can't wait for her to get all better. Please pray for Joe and Andrea as they need sleep and peace right now. Pray for Ella to get well and not have any life long damage from these complications. Most of all pray for the doctors as they care for our sweet baby Ella and give them wisdom and his guidance in what to do. I have had a few people ask if they can call or visit and that still remains NO. At this point Andrea wants NO visitors and NO phone calls. I am relaying messages to her and have printed out messages to take to her tomorrow to read. She said she loves you all and will let you know when they are ready for company, it will be a few days at the least. If you have questions I can answer I will respond to you otherwise I am trying to do it all by this blog as to keep everyone in the loop at one time. I am attaching a few pics to this email from a few hours after Ella was born. We will post more as we get them.
We love you all and thank you for your prayers and support- Sara
Ok everyone- here is the full update. Ella is not doing well at all. She is currently in NICU at Medical City of Dallas. She does not seem to be improving so we need your prayers. Here is a little bit of the run down. Ella has become pale and has a yellow tint to her skin, seizers, she is rolling her eyes and moving to one side only, she is clinching her fists and has "modeling" which is when you can see all of the veins in her chest. She is in her own room in NICU and has a team of 7 doctors and specialist and 2 nurses. They have her arms splinted to keep her from pulling out her cords when she has the seizers. There is someone from Children's Hospital coming to look at her and run her spinal tap at lunch time. She has an IV which is feeding her sugar water and is on oxygen to clean all of the acids out of her blood. The two categories they are looking at are Infection which they are already treating her for with antibiotics, or Inborn metabolic Error which means Andrea and Joes genes did not match for Ella. We pray for infection as they can treat it. If it is the other there are only a few treatments and it has to be specific to her condition. A waver has been signed for a blood transfusion if needed and we are standing by until the next doctor comes in. At this point they continue to run test and have ruled out heart and her CT came back good. Andrea and Joe have already been told they will not be taking her home with them and the nurses are trying to find a way to keep Andrea a few more days to be with Ella. If they do decide to transfer Ella to Children's, Andrea will be discharged and allowed to go with her. Andrea and Joe request NO calls and NO visitors at this time. We will let you know when that status changes. Please pray for everyone including the doctors, Andrea, Joe and little Ella. We have to have faith God will pull her through. Andrea is physically doing well and seems to be emotionally hanging in there. Please pray for comfort and peace of mind. Thank you for your prayers, love, and support- Sara
Thursday, May 04, 2006
I had a sonogram today and she weighs approx. 6 lbs, 13 oz...so she'll be around 7 lbs next week. She is in position and ready to go.
We'll keep you all updated and informed as we get closer.
Please pray for all 3 of us as well as our families as we go through this new experiance. God has been SO faithful thus far and has answered our prayers, please keep us in yours. If you are looking for specific things to pray for it would be:
the umbilical cord not get wrapped (which today wasn't near her neck at all)
that she be positioned perfectly
for labor to go smoothly
Joe and I to have a peace about everything
and mostly pray for Ella's heart, as God prepares for her to follow him
Thank you to all who have loved, prayed, and supported us through this pregnancy, we're almost there!!
Joe and Andrea
Here's group "Roughton" picture from my mom's birthday dinner: