What's new with Ellie Boo?

Displaying a check received from a fundraising event held at Nicholls State University in Thibodaux, Louisiana.

Our sweet Ellie continues to do well.  Every now and then someone tells me they are still praying for Ellie and that means the world to me.  I even still get cards in the mail, sometimes from people I don't even know, letting me know that they are still praying for Ellie.  And Ellie, with her pink decorative helmet, has become fairly well known around town so we often have people asking us how she is doing. We have received so much support during Ellie's illness and words can express how appreciative we are.

In mid-January Ellie had her first MRI since her brain surgery.  From the MRI they could confirm that she hasn't had any additional strokes and that the middle meningeal arteries appear thickened which would imply that the arteries are starting to take over the role of supplying blood to the brain.  So it was a good report.  The plan is for Ellie to undergo an angiogram this summer where they will run dye through the arteries in her brain and from that we should get a good idea as to how her blood flow looks and if the new arteries are transporting the blood as we pray they are.

Waking up from the MRI anesthesia

In February we switched from driving to Clear Lake for out-patient therapy services to home health services that come to our house.  I really loved Ellie's therapists at Texas Children's Clear Lake but I knew it would just be too difficult to make the 40 minute drive 4 days a week with a baby.  So now therapists come to our house 6 times a week to work with Ellie.

Working hard in therapy

Ellie, who is almost 2 1/2, is currently meeting the milestones of a 12-18 month old.  So she is still significantly behind but continues to show improvements all the time.  Since we began home therapy, we have seen her communication skills jump from that of an 8 month old to a 14 month old.  Her speech therapist has 25 years of experience and is really wonderful with her.  Ellie is still non-verbal but she is finding more and more ways all the time to communicate her wants and needs to us.  One way she is learning to communicate is through sign language (ASL).  She regularly uses the sign for "Please" (and verbally says |E|) to get what she wants and the sign for "All done".  She also knows the signs for open, bird, dog, hat, brush teeth, and thank you.  Verbally she can make the following sounds-- |E|, Ah, Ma, Nah, Mm, Uh, Ha.  She waves and says "Ha" and will repeat "Uh" when she wants to be lifted up.  She points to what she wants and will nod her head "Yes" or "No" in response to questions.  Ellie can follow basic commands like "Sit down", "Come here", or "Can you get that?"  She generally can't follow directions of things that aren't familiar to her unless you demonstrate something for her and then she is really good at being able to imitate what you do.  

She loves to play in the dirt!

My little gardener

Ellie has gotten good at walking, even walking fast.  Although she does still fall a lot, especially when she gets tired.  She wants to walk everywhere, all the time, and is unstoppable.  She also can get herself to her feet pretty effortlessly, using just her one good arm to push herself up.  She is working hard in physical therapy to get her legs strong enough to go up and down stairs but still seems to have a long way to go with that.   

Happy fairy

We are all crazy about our new baby

Ellie still has no use of her right arm/hand.  Her occupational therapist does a good job of pushing her to the point of frustration and then backing off and then pushing her again.  We put objects inside of her hand, direct the hand to objects, push the hand against objects so the hand is weight bearing, etc.  The other day her neurosurgeon said that Ellie may not get back fine motor skills with that hand but that she will absolutely get back some use of the hand with time.  As a result Ellie has become a lefty and is getting good with using her left hand for everything.

Crying because I had been trying to take pictures of Skyler and not her

Ellie's head has felt fairly uneven since her surgeries but recently we had noticed that the entire left side of her head seemed to have sunk in.  This created a dramatic feeling ridge along her surgical site and you can also feel a knot from a screw.  Feeling her head is a little disturbing and when her hair is wet you can see that her head is no longer shaped right.  So a few weeks ago we took her in to see her neurosurgeons and both of them reassured us that although this isn't supposed to happen, it's purely cosmetic and of no concern.  They said because of her extensive stroke damage, it has caused her brain to shrink and so as the brain has shrunk, her skull followed by sinking in.  We were relieved that there is no concern about this and her hair, that has started growing curly, covers it up so it's not noticeable.  Shrunken brain or not, Ellie is a smart little girl and is an overcomer.  

Indention in her head

Sweet sisters

Have yall heard the Christian rock song by Mandisa called Overcomer?  If not you should Google it and listen or watch the music video.  That's Ellie, with God's help she is in the process of overcoming all of this.  And really that's all of us because we all have things we are working to overcome.  We just have to put our trust in God because we may not be able to do it on our own but He can help us overcome all things.  So I'll end this blog entry with some of the lyrics to that song....

You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer

Easter egg hunting

Skyler's birth story

My pregnancy with Skyler was thankfully very smooth and uneventful.  My focus during those 9 months was on Ellie's health issues so I'm grateful I didn't need to worry about my unborn baby on top of everything else.  From the beginning Charles guessed that Skyler would be born on February 22 (his sister and grandmother's birthday) and I guessed she would be born on February 23 (my dad's birthday and my grandfather and great-grandfather's heavenly birthdays).  And even though we didn't find out the gender during our pregnancy, we were both convinced that our baby was a girl.  

The week prior to February 22-23, I was having a lot of contractions, bleeding, and according to my doctor I was 2 cm dilated.  I had c-sections with both Payton and Ellie and so this would be my 3rd c-section.  If I had made it to my 39th week then I would have had my c-section on March 4 but I didn't make it that long with my other two pregnancies and didn't figure that I would with this one either.  With Ellie I waited until I was in active labor before my c-section.  You know, the kind of labor where you are screaming and can't breath and are begging them to cut your stomach open immediately.  So this time around my OB said, "You're having a c-section, there's no reason for you to suffer so don't wait until it gets to that point".  That sounded like a great plan but at the same time, with Ellie my labor progressed fairly quickly from the contractions being completely bearable to absolutely unbearable so I knew it would be a hard thing to time.  

In the days leading up to Skyler's birth, Charles came down with a terrible cold that went right to his chest as a bad cough.  A few days later Payton came down with it and then my mother-in-law caught it as well.  I started feeling very concerned about having a baby and having this awful upper respiratory illness hanging around.  I was concerned that my newborn would catch the illness, I was concerned that I would come down with it right after having my c-section, and I was concerned that Ellie, whose body is still weak from her strokes, would catch it.  I believe God put a certain thought into my mind to reassure me during this time and that thought was, "God will protect the vulnerable".  The three of us were vulnerable for different reasons and God was faithful and none of us came down with it.

The weekend of February 21-22 I was pretty miserable with contractions.  Eating made me feel sick and eventually I stopped eating and drinking because I kept thinking I would be heading to the hospital at any moment and they don't want you to have had anything to eat or drink prior to your c-section.  My mom drove from Georgetown in anticipation of the baby's arrival.  I still didn't feel close enough to active labor to go to the hospital so on Sunday morning my mom went back home.  Sunday night my contractions became stronger to the point where I couldn't relax and couldn't sleep through them.  They were still spread apart enough where I could drive so we decided it was best for me to get myself to the hospital while I still could.  Charles stayed with the girls who were sleeping and I drove to the hospital.  It was about 2 a.m. when I called my mom to tell her I was headed to the hospital.  She hopped in her car and headed our way.  

At the hospital my contractions came in clusters with larger gaps of time in between.  A resident doctor checked me and also felt my stomach and said, "Your baby still seems small, maybe it's not ready to arrive yet".  I don't know why but with Payton and Ellie the doctors thought I would have tiny babies too and all of my girls have arrived as good sized babies.  The resident said she thought she should send me home to wait until I was in active labor.  She left the room and I called my mom to tell her to turn around and go home.  Soon after I hung up the phone with her, the resident came back into the room and said, "Your blood pressure is elevated and there's no reason to keep a full term baby in there since the baby is safer being born at this point.  So you will be having your baby this morning."  I was pretty shocked by the sudden change of plans but was thankful because I could tell my labor was progressing and knew if I had been sent home I would have just had to come back later in the day and possibly be in much more pain by then.  So once again I told my mom to turned her car back around and come to Galveston.

While waiting for my c-section, Charles and I both took guesses on the weight and gender of our baby.  We both guessed girl and I guessed 7 lbs 12 oz as the weight, which was how much Payton weighed at birth.  My doctor arrived later in the morning and once the operating room became available I was taken in.  

Skyler Christin was born on February 23 at 10:54 a.m. weighing 7 lbs 12 oz and measured 21 1/2 inches.  Skyler was screaming, healthy and perfect.  My c-section lasted about an hour because we decided to bank the cord blood since there have been experimental trials of the use of stem cells to treat stroke damage.  I also had a tubal ligation so no need for anyone to make comments about a possible #4 because 3 kids is enough for us.  

While they were in the process of stitching up my insides, my spinal began to fail and I regained feeling to the left side of my body.  I began to feel a lot of pain.  Thankfully my mom had encouraged me to ask if they could give me an epidural along with the spinal to offer extended pain relief during recovery and since I had that epidural in, the anesthesiologist was able to numb me up again by injecting medications into it.  Besides the fact that it possibly saved me from having to be put under general anesthesia, I would highly recommend the spinal/epidural combination to anyone having a planned c-section because it made my first 24 hours of recovering so much more comfortable.

After my c-section they brought me into recovery where Skyler and Charles were there waiting for me.  I love that UTMB now allows the baby in the recovery room with you because just 2 years ago when I had Ellie they had a policy where the baby had to go to the nursery for 4 hours before they could be reunited with their mommies.  Skyler's blood sugar was too low but since she was with me I was able to nurse her and immediately after her blood sugar jumped up to normal.  My first thoughts on holding Skyler was that she had the cutest little chubby cheeks I had ever seen, dark hair, and that she was so perfect in every way.  

I spent 2 nights in the hospital and then was able to come home.  My mom stayed at the hospital with me so that Charles could stay at home and take care of the girls including Ellie's medical needs.  I had been so concerned about how Ellie would do without me but thankfully she handled things really well.  Both Skyler and I were doing great and I was relieved to be able to get home to my other babies.  The first few days at home were fairly stressful because Charles and Payton were still sick and so we tried to isolate Skyler and I from the rest of the family as much as possible.  

With my two previous births I developed pre-eclamsia a few days after birth so I was praying I wouldn't have that problem this time around.  With my birth of Payton it was the most severe.  My entire body was so swollen and my blood pressure was severely high.  I had to be put on a magnesium IV and spent 3 additional days in the hospital.  This time around I seemed to be doing okay until the weekend after having Skyler when I developed a terrible headache and found that my blood pressure was really high again.  I had left over blood pressure medicine from when I had Ellie so I started taking it again.

I had a followup doctors appointment the next Tuesday and I figured my doctor would just prescribe a different blood pressure medication and send me home.  Especially since I was really feeling the need to be at home to help Charles with the girls since he had gotten very sick with his chest cold, to the point that they did an x-ray to be sure he didn't have pneumonia.  In addition to being sick, he was suffering from a bad back ache and was hobbling around the house as it was.   

So when my OB said, "Your blood pressure is dangerously high, we have to put you back in the hospital", I told her I couldn't, that I needed to be home.  And when she said, "I can't let you go home.  You could have a stroke or a seizure with your blood pressure like this".   I was really upset, especially when I continued to question if I truly needed to be in the hospital and was told, "You don't want to end up like Ellie, do you?  Your girls need you".  I'm sure the post-birth hormones played a role in it but everything we'd been through with Ellie in the past year just really hit me hard that night.  I got put back in the hospital and had regained my composure until they started trying to get an IV in me and blew vein after vein.  It was really painful but I started crying because all I could think of is how many times my sweet Ellie has gone through the same thing.  She has suffered and gone through more than any child should ever have to go through and there are times when it definitely hurts my heart.

I asked for prayers on Facebook and God answered those prayers because the blood pressure medicine that they put me on lowered my blood pressure enough for me to be able to go home that very night!  I was so relieved and happy to get back home to my family.

Skyler has done well since birth.  I'm her mother so obviously I'm biased but I think she is so beautiful and perfect in every way.  Seriously she has the most kissable cheeks.  And she has dark brown (almost black) hair and dark colored eyes.  Right now I would say her eyes are a really deep grey color.  She has gained weight and is probably close to 11 lbs at 6 weeks of age.  Her looks and large size remind me a lot of Payton and her high maintenance personality (she screams anytime she's not being held) reminds me of Ellie.  

Skyler sleeps well at night which is such a blessing.  Especially because she, Charles, Ellie, and I are all sharing our bedroom right now.  Ellie sleeps in bed with us because we all sleep better that way and because she is attached from her G Button to a pump that gives her formula all night.  And Skyler sleeps in the crib in our room.  Recently Skyler has only been waking up once a night and generally falls back asleep after being awake for 30 minutes to an hour.  Then she wakes up again around 5:00/6:00 a.m. and at that time I relocate her to the baby swing in the living room to make sure she doesn't wake Ellie up too early.  

 She has one issue that is being monitored right now.  While in utero they could see that she had an enlarged kidney.  Ellie had the same thing when she was born and it resolved itself by 2 months so I haven't been too concerned.  But it is something we need to watch just to be sure.  I took Skyler to the urologist this week and wasn't very impressed with the doctor.  He looked very young and seemed unsure of himself.  He kept second guessing the things he told me.  He talked a lot about surgery and wanted to schedule an exam with contrast to see how her kidneys are functioning.  I didn't feel confident with his experience so I will be taking Skyler to a doctor at Texas Children's Hospital for a second opinion.  Hopefully, like our experience with Ellie, this is just something that will resolve itself.

Besides the kidney, Skyler seems very healthy.  When she is awake she is oftentimes very fussy and she does spit up and literally vomits up everything in her stomach 1-2 times a day.  But since her reflux issues aren't affecting her sleep and she is gaining weight, it's not something we are looking at needing to treat right now. 

We also received wonderful news last week.  We had Skyler tested for the genetic abnormality that caused Ellie to have moyamoya disease and Skyler's results showed that she inherited my gene abnormality but that Charles passed on his good gene to her.  In order to be affected, a person has to receive the bad gene from both parents so since she only inherited 1 bad gene, that makes her a carrier like Charles and I are.  This means that she shouldn't ever develop Moyamoya disease.  About a month ago we had gotten Payton's genetic testing results back and she received both good copies of the gene so she's not even a carrier of it.  We are so thankful that God answered our prayers that Payton and Skyler wouldn't be affected by this terrible disease.

Skyler is very loved by everyone in our family.  It warms my heart to see the love that Payton and Ellie have for their baby sister.  Payton asks to hold Skyler multiple times a day and is always saying things like, "Awww, she is so cute!"  She has also started telling me, "I'm so glad she came out of your tummy!"  Payton has lovingly given Skyler the nickname "Stunker Wunker" and unfortunately for Skyler the nickname seems to have stuck.  Ellie likes to look at Skyler and smile and squeal.  Ellie sees me burp Skyler and she seems to think that you can burp a baby by hitting them on any part of the body including the face and head, so we've had to keep a close eye to make sure she isn't trying to burp Skyler's face.  We try to emphasize the idea of being "gentle" with Ellie and she understands how to be gentle but oftentimes forgets and isn't very gentle.  She loves to cover Skyler up with a blanket which includes covering her face and she is always trying to share her toys with Skyler (aka drop toys on the baby's face).  So yes, I attempt to provide constant supervision and so far there haven't been any injuries.  But growing up with Ellie as a big sister might require Skyler to become a tough little girl.  Truthfully I think Ellie and Skyler will be close friends one day or at least I hope they will be.  

Skyler is such a blessing to us and she completes our family.  She is just the cutest little bundle of joy and we are all crazy about her.  God knew what he was doing when he sent Skyler to us.  Here's to all the adventures yet to come as a family of 5!