October 31, 2009
October 28, 2009
Home!!!
I have never posted on this site before, but I wanted to give a quick update on us. We brought Sayla Grace home today and I could not wait to share the good news. Sayla Grace has been such a miracle and inspiration to me that I cannot even begin to express the depth of gratitude that I feel towards our Lord and Savior. He had been with us from the beginning and has comforted us throughout the last 3 months. Now I pray that he grants us the wisdom and strength to bring Sayla Grace up in the faith in an ever changing and challenging world. I will get Jessie to update this soon but I just wanted you to know that she is home....Praise God through whom all blessings flow......Owen
October 20, 2009
Nothing!
We finally got an answer today. And the answer was NOTHING!!! Praise the Lord!! While we didn't get to speak with Dr. Matheson directly, he let Dr. Bruce know that it's nothing to worry about.
Dr. Bruce explained that it's common in preemies, and it should not affect her abilities or mental state AT ALL. We don't require any follow up scans or visits with a neurologist, and she should be a normal baby, kid, adolescent, adult (relatively speaking).
As far as what it is and why it's there...who knows. It just is. She should grow out of it and if we were to have another scan done as she gets older, it should not show up.
Of course we're extremely relieved, but I will still be a little cautious and watching her motor functions more than I normally would. That's just the paranoid side of me!
In other news, we JUST passed the car seat test!!! In this test she has to sit in her car seat for an hour and a half and she cannot have any desats or Brady's. This is to make sure she can make it home without tilting her little head too far forward and blocking her airway. We only live 30 minutes from the hospital, but the standard is an hour and a half, or however long it takes you to get home (if longer).
When I called to check to see if she passed (right at her stop time), she was still comfortably sleeping in her seat and doing great!!
I was so nervous I almost couldn't leave the hospital! I've been watching the minutes tick by since I left, and I'm so relieved it's over!! One more hurdle cleared!!!
We're on our way!!!
Pray Now!
Dr. Matheson is reviewing her chart now (see this post about LSV) and has already seen her. Please pray now that it is NOTHING and was a fluke in the ultra sound.
I'll post results as soon as I know them.
Thank you!
October 19, 2009
Still No News
Just a quick update to tell you that there's still no news on the LSV. Not sure when the Doc is getting back from Norway, but hopefully today.
Many have asked why they can't just contact another doctor, and the answer is kind of simple. Even after we find out what to expect from the LSV, there's nothing that can be done about it, so the waiting part doesn't really matter.
If it were something life threatening (which they've assured me it's not), they would ask another doc and get things moving in whatever direction necessary. But since it's not life threatening, we can afford to wait. Right now we're just trying to get answers about what it is, what caused it and what her life will be like with it.
Other than that SGP is doing great. Except she's decided she doesn't want to nurse this week, so I'm struggling with that. Otherwise all is well!
October 16, 2009
No News
*She has received a round of blood and is doing much better with her oxygen levels.*
We really don't have any news yet on what to expect of the LSV found in SGP's brain. The Pediatric Neurologist that our doc is trying to get in touch with happens to be in Norway, and she's not answering her emails...go figure.
But our doc did tell me this...(and some of it probably got lost in translation, so if you know anything about this, and I'm saying this wrong, please forgive me)...
She said that based on the report of the brain scan, it does not look like a congenital infection or calcification (both of which would mean developmental disabilities), but it looks more like a benign infiltration of white blood cells that are making the vessels in her brain appear more prominent. We will follow up with the Pediatric Neurologist (who's in Norway) as soon as she gets back, and definitely before we leave to go home (still no word on when that will be).
All in all she tried to assure me not to worry about it (WAY easier said than done), and that it's not something that's causing her problems since she's not symptomatic in any way that would indicate a bigger issue.
But we're not done praying. I don't think I will be completely satisfied about it until we either hear from the Pediatric Neurologist, or see a scan with no appearance of LSV. And even then I'm not sure that fear will ever go away.
It's just the mom in me.
October 15, 2009
Up and Down, Back and Forth
I think Sayla Grace will love the swing set one day. She's already so good at swinging! Lately she's been swinging up and down (on her oxygen) and going back and forth (on getting to come home). The little bugger has gotten so comfortable in her cozy crib, that I think I heard her whisper that she wants to stay until Christmas.
And while we do love everyone there, we are ready to stop putting the miles on our cars, spending money on the gas and not spending any time together. To put it mildly, we are ready to bring her home. Even if it means being on monitors.
After getting told last week we could be home by...well...today, and then having her "discharge screening" done (it's not really called that, it's just all the tests she must do before discharge)...we were told yesterday that she might be home next week.
But we spoke too loud, and SGP heard us talking about it, and she decided to let us know she's not ready.
She still has not received a round of blood, and her hematocrit is now at 26.2 with the Retic at 2.7. Her Retic is considered good - that she's making her own blood - but now she's being symptomatic of Anemia. She started desatting last night (not during feedings) and had to be put back on the Nasal Cannula (just at 21% room air...but it's the pressure reminder she needs). But since on it she's doing better.
But there are a few good points...
She had her eye exam yesterday and her eyes are "mature" (Praise the Lord!) and there are no outward issues there. I'm sure one day she'll need glasses, because Owen and I have terrible eyes...though he's had surgery to correct his. I can't stand the thought of a laser coming at my eyeball, so I'll take the glasses and contacts, thank you very much!
We've started nursing, and she's doing really well with that! Just this morning she took 80cc's nursing and 15cc's from the bottle. (That's a little over 3 oz). Sometimes she nurses less and takes more from the bottle, but she's eating like a pig these days...so that's good.
And then there's the bad...
She also had her final brain ultrasound, and unfortunately this time the results were not totally normal. While she doesn't have any hemorrhaging or hydrocephalus (fluid on the brain), she has something in the center of her brain called Lenticulostriate Vasculopathy (or LSV for short). When the doctor read this in the report, she said "I'm not sure what this is, I'll have to go research it." And with that she took the report and went straight to her office.
And we've not heard back.
So I'm assuming that it's not a HUGE deal, or else we would've heard something by now. Either that or it's so rare that she still hasn't figured out what it is! But I'm going with the "not a huge deal" approach.
So of course I've done my "Google MD" research, and read every article on the first 5 pages. Only one of which told me what it is...
"Lenticulostriate Vasculopathy is described as branching curvilinear hyperechogenicity in the thalamic region. They are associated with congenital infections, HIE (Hypoxic-Ischemic Encephalopathy), maternal SLE (Systemic Lupus Erythematosus), twin/twin transfusion, fetal ETOH syndrome (aka Fetal Alcohol Syndrome) and Trisomy 13."
So now that we've all been thoroughly confused, here's what I know about the above statement from my days of Cognitive Psychology at Auburn when we had to learn the parts of the brain...
LSV is basically a bunch of ventricles (veins) in the brain that form incorrectly in the Thalamus and Basal Ganglia region (the area in the center of your brain that controls movement). It can be caused by an infection I had during pregnancy (and I had none that I know of), a reduced oxygen supply (which she's had at times), my having Lupus (which I do not), twins (which I obviously didn't have), Fetal Alcohol Syndrome (I don't drink) and an extra 13th chromosome (which she doesn't display symptoms of).
Based on the studies I've read, it can cause any number of things...like Tourette's Syndrome, Obsessive Compulsive Disorder, severe ADHD and a number of other movement disorders.
Or...it could disappear completely and be nothing.
So that's what we're in constant prayer over right now...NOTHING. Every time I'm with her, I put my hand on her sweet little head and say "Jesus please make this little brain whole again." over and over.
And I humbly ask that you pray that with me.
I know we've been asking alot of your prayer time, and we pray for you daily, thanking God for you. But this time we really need an intercession by The Great Physician. We need Him to make this right, to make her brain whole and normal. He intricately wove her in my womb, and made her the way He intends for her to be. However I cannot help but be selfish for her. I do not want her to grow up in this cruel world with any challenge.
For her sake, I need her to be whole.
Please PRAY with us!
October 9, 2009
Prayers of Patience & Understanding Needed
I really need some prayer right now. We're getting so close to our due date, and I can barely see the light at the end of the tunnel. But every time I get a glimpse of it, a gloomy shadow slides into place and the light is gone.
Today Sayla Grace has had 2 Brady episodes. One while she was eating, and the other just lying in her crib. She has not had a Brady since September 24th, so I was really upset to hear that she's having them again.
The last few times she's had Brady's, her Hematocrit level has been low (basically she's Anemic), and therefore her little body cannot function properly. When this has happened in the past, she has received a round of blood to bring her levels back up to snuff.
Today when I asked if they would please check her Hematocrit level, I was told they would wait until Monday. This really upsets me, because even with just 2 episodes, her little body is having trouble, and I can't get over that. Waiting until Monday is agonizing for me, and I don't understand why they are waiting. This past Monday, the level was at 35, and I know it's dropping because she looks extremely pale.
I'm going to see if I can get with the Doc to ask him, and get a better understanding of the process. We've been through the transfusion thing 6 or 7 times already, so you'd think I kind of know what's going on, but I guess since I'm loosing my patience I'm having trouble understanding.
I know this is all part of God's plan, and there's a lesson in here somewhere. I'm really trying to remember that with every second. He will have her home according to his plan and timing, and I need to step back and let that happen. But I can't help but be selfish and want our baby home now.
On the bright side, she's an ounce away from 5 pounds, and seems to be keeping her temp up in the crib. I got some really cute pictures of her face last night, and as soon as I have a minute to sit down to download the pics off my camera I will post them. I also have some pics of her nursery, but I can't decide what to do with the walls. So I'll post them and let you decide.
In the meantime, please stop and say a prayer for me and our baby. I need patience and understanding, and SGP needs blood (her daddy will donate for her again). Just pray the doctors and nurses do what's right by her and not wait to long. Thanks a million!
October 8, 2009
The countdown has officially begun...and stopped. Today was supposed to be Day 1 of our 8 day "Going Home" countdown, but it was halted just as quickly as it began.
The criteria for the countdown are that she cannot have any Brady or Desat episodes during the 8 days, and she must continue to eat well and keep her temp up. She's a champ at eating and staying warm, and even not having Brady episodes. But those pesky desats are getting in the way.
This morning she desatted during her bottles, and so it was decided that she would have to be put back on the Nasal Cannula during her meals. I guess the good thing is that it's only during her meals and not all the time.
She was moved to a crib today...though it could be temporary if she drops her body temperature. I'm not sure what the threshold is, I just know she can't drop it. They left her isolette in place just in case. Though it's kind of not fair to her, because they keep that room like a meat locker and it's hard for ME to keep my temp up when I'm in there. I'm not sure how any baby can do it!
So my lesson in patience has officially begun. Yesterday we were all set to have her home next Friday, and now are telling us they don't know when she'll be home. So I am in constant prayer, asking God to remind me that this is all part of his plan. And that when He's ready for her to be home, she'll be there.
Here are some pics from my shower this past weekend...
October 5, 2009
Headaches
I'm hoping our baby girl doesn't get bad headaches this week. Why you ask???
Well they have officially discontinued the caffeine!!! Ever since she was born, she has been on medical grade caffeine to help her keep her heart and breathing rate up. A little different than food grade caffeine, the medical grade kind gives her a little boost and reminds her little brain to do big jobs, like making her heart beat, and making her breathe.
As she's gotten bigger, they have increased her dosage to keep up with her size. And while she would occasionally have a Brady episode, her Apnea episodes were few and far between. But she hasn't had either since the 24th of September!!!
Last week the doctor mentioned decreasing her dosage, but before the words were even out of his mouth, the little rascal desatted - slowed her breathing down and therefore was getting less oxygen. While she quickly bounced back up, it obviously made the doc leery about decreasing the meds that made this not happen...so in his next breath, he said, "On second thought, I'm going to increase her dosage."
I went from being on cloud 9, to the ground in a heartbeat. But, I knew it was for the best, and that God would show his timing when we least expected it.
Because I was so upset about her getting more, I didn't ask about it again. Then last night, her nurse just casually mentioned, "Oh yeah, they stopped her caffeine today!"
I was so excited!! Just when we least expected it, another prayer has been answered! But we still need prayers in this area. We need to pray that she does not have any Brady or Apnea episodes since coming off of the caffeine.
I'm told it will take 2-3 days to get out of her system completely, so it will be a few days before we see if her body is going to pick up the slack and work on its own. Please be in constant prayer about this. This is the biggest hurdle to get over to come home.
Before she's allowed to come home, she must have 8 days of no episodes while off of the meds. I'm not sure that our countdown officially begins today though, because she also has to be on all bottle feedings. And right now she's only taking 3 a day.
She needs 4 more a day, each taken completely (35cc's) in 15 minutes in order to pass this milestone. So I guess we have 2 hurdles to jump...no more episodes, and 4 more bottles.
Let's PRAY PRAY PRAY that she just surprises everyone and starts taking those bottles like a champ!! Help us use the power of prayer to surprise everyone and have her home well before my due date (October 25th).
In other news, my fabulous friends threw me an absolutely marvelous baby shower yesterday! I had so much fun and it was so great to finally get to just hang out with everyone, and not feel rushed to be somewhere. We received lots of wonderful gifts!! This child will be very well dressed for the next year or two!!
I'll post pictures of her and the shower later...
October 1, 2009
No More Itty Bit!!
Our itty bit has now become our chunky monkey! Tipping the scales at
4 and a half pounds, she has officially outgrown her adorable preemie
outfits!!!
I've decided to pick my favorite and frame it along with a few other
mementos from our time in the NICU. The rest I will donate to the St
Vincents preemie wardrobe.
Thank you for your prayers of growth!! We're getting there!!!
Swimming Right Along...
I just realized it's been more than a week since my last post! So sorry!
Sayla Grace is doing well. She now weighs 4lbs 6ozs!!! And she hasn't had a charted Brady or desat since the 24th of September!!
Here's what's been going on this past week....
She has started receiving her 2 months immunizations. So far she's had the Polio, DTap and Hepititis B. Tonight she'll get the Pneumococcal conjugate (PCV), and when she's old enough, the Rotavirus vaccine. She's lucking out in the vaccine department, as most 2 month olds (that were born at term) have to get them all in one day. She gets to space them out, and get one a day. She's not had any noticeable side effects from the vaccines she's already had, but we ask that you be in continuous prayer for the others, and that no side effects show from any of them.
Vaccines have been a controversial topic of late, with the increased prevalence of Autism, but our doctor assured us that the Autism myth is just that...a myth, and that there are no worries. Apparently the myth stemmed from a study that did not include enough participants to make it valid, as well as the Thimerisol (a form of mercury) that used to be found in vaccines. Now all of the vaccines she needs are made without Thimerisol, so there's no issue with that either. I really debated about the vaccines, but reasoned that the risk of the vaccines was shadowed by the illnesses they prevent. So we went ahead with them. The one vaccine she will not be getting is the Swine Flu one. They won't give it to her now anyway...as she's too young. But I'm not convinced there have been enough studies on this vaccine, and I'm confident we can keep her sheltered from it until the risk passes.
Aside from that, she's been taking a bottle twice a day. She was up to having a bottle with every other feeding, but it just wore her out, and so we slowed down a bit. They have let me give them to her, but I'm now letting the nurses do it again. It seems when I give her the bottle, she falls asleep and doesn't finish. So I'm going to let the nurses do it until she gets the hang of it.
Yesterday she started a round of Lasiks, because she was retaining fluid. Her little legs and eyes were getting puffy. So they put her on Lasiks to help remove the fluid build up. She'll be on them for 6 days, and it should do the trick.
She had her 3 eye exam yesterday, and we got another good report! Praise the Lord for this! She's now at a low risk for developing ROP and her eyes looked really good. She'll have one more exam in 2 weeks, just to be sure.
Other than that, she's really doing well. We were told earlier this week that she "might" be home by my original due date - October 25th. But there are no guarantees. She first has to be on all bottles (so 5 more a day!), off all medicine...and then once she's off of all meds, she must not Brady or Desat for 8 straight days. If she does, the countdown starts over. So there's no telling what the little rascal will do when off of the medicine that keeps those at bay. Please be in prayer for this process...as we are so ready to have her home.
We now have her room all set up - just waiting for the chair to arrive this week. All we need are pictures on the walls, and we'll be set.
Here are some comparison pictures to show how far we've come...
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