**Note: This is 30 Days of Reflection on Ella's first 30 days of life and her battle for survival as we all prayed for miracles**
Saturday, May 20, 2006
Ella Update as of Saturday 1 p.m...... Ella is doing pretty good. She is free and clear of a lot of her cords now. The ventilator has been removed, PRAISE GOD, she is breathing on her own. Her MRI came back pretty good. She has some bruising on her brain and swollen blood vessels. They are hoping she will have no permanent damage but it may take a few years before they really know anything. Ella is opening her eyes and having a little more interaction with us. Joe got to take her temp and change her diaper yesterday. Andrea should begin nursing soon. She also got to give Ella a little sponge bath yesterday and Being able to pick her up was a great feeling for Joe and Andrea. Ella is looking good and truly a miracle baby. Just please continue to pray for this family and the road ahead.
Monday, May 22, 2006
Update from the weekend... I'm not as good at this as my sister, but I'm gonna try and give you guys an update.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.
Tuesday, May 23, 2006
We got to hold her... God has been so good to us!! Updates: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.
Updates from Tuesday Tuesday was a day learning about development. Last night while we were talking to Ella's PT (Physical Therapist) we found out that just a week ago they were actually talking about the fact that she might be confined to a wheelchair or need positioning devices to help her, short and long term. It was looking last night like they were seeing HUGE improvements in her motor skills and her muscle tone. I never thought about the muscle tone of a baby, but it's VERY important for early development. It still looks like she might be a little behind in some skills (rolling over, crawling, walking, etc.) but she should be able to do them all eventually. Joe keeps saying that even if she has any "special needs" that she will be perfectly the way God intended her to be from the beginning. We also worked on some oral stimulation last night to get her moving in the right direction towards feeding. I honestly fear that we are still quite a ways off from knowing anything, and it's a huge concern of mine right now. We obviously can't take her home till she can feed or we'll have to have a tube to her belly that we just feed her through. PLEASE pray that she starts to show signs of suck/swallow/breathe and that she swallows safely. One of the big concerns with feeding is that the brain remembers to shut off the airway and allow the food to go down the correct tube...it's scary to think that while feeding she could choke bc of the damage to her brain. There are still SO many prayers needed. We are out of the woods as far as the infection itself, but the effects are still unknown.Here are some pictures of our beautiful baby: Above is daddy singing bible songs to Ella...she loves it when he sings to her.
Friday, May 26, 2006
Update...Tuesday...5pm
Well, just got home from seeing our little angel. She passed her hearing test today...YEAH!! Both ears hear perfectly well...that is a HUGE blessing and answer from God. 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.
It's Tuesday morning after Memorial Day weekend. Joe and I spent the entire weekend, literally, at the hospital. Since he usually only gets to see Ella from 8p-10p during the week it was nice to have our family together and hanging out, eventhough it is at the hospital.
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.
