Thursday, June 25, 2009

What the Surgeon Said

We took Abigail down to see the plastic surgeon today for a follow-up visit. It was very encouraging to hear him say that everything seemed to be progressing very well. Her stitches (most of which have dissolved and pulled out by now) look really good, the bones seem to be in the right place and we are well past the chance of any infection. He said there is still some swelling but is not worried about it. Our concern was that her one eye still isn't opened all of the way; he said it was unusual but not abnormal and we should wait to see what happens in the months to come. There is a procedure they could do to "shorten the eyelid muscle" so that it opens all of the way if it came to that, but we won't even be discussing it again until December, which is the next time we go down to see the surgeon for a check up. So let's pray that her eye opens all of the way! No more procedures or surgeries, please!

So, all in all, the visit went very well. The traffic there and back was aweful, but the time in the doctors office was pleasant.

That is the big news. There are other fun things to comment on, but they shall have to wait for another day and another post...

Saturday, June 20, 2009

Sentences

It's been a few days since we've posted an update, but that's probably because there isn't much content to update on. Abigail continues to do well. Her one eye is still swollen but it opens up just a little bit more every day. Her stitches also look good and continue to heal well. We are getting her on solids again, which we started pre-surgery but have had other things to think about in the last two weeks. Sometimes she likes solids, some time she doesn't. It's always a mystery...

It is still kind of hard to look at Abigail and not think that it is a different baby girl. She still doesn't look like the Abigail we were used to. In time, however, we won't be able to imagine her any other way then she is now...

Jaron's "glove" has been set aside now; we leave the bandages off of his hand even though his fingers are still growing new skin. The doc said it was OK as long as we keep an eye on the wounds for any infection, which we don't expect. And he can stretch his fingers out fully - praise God!

Jaron is also learning how to put sentences together. Just today, when Jeremy was running the saw he said "Dadda make noise? Like Grandpa?" Grandpa was running the saw when he was here last week and apparently Jaron remembered! It's always fun having him around!

Wednesday, June 17, 2009

20%

It's a beautiful Fall day here in Lansdale, PA, or at least that is what it feels like. It's cold, dark and rainy. Honestly, will it ever stop raining! I think it's been raining almost every day since April...

Anyhoo, Abigail had a very bad nights sleep last night, which means mom and dad had a very bad nights sleep. We weren't sure if it was pain related but gave her tylenol just in case; she may be going through a growth spurt too, which means she was hungry every couple of hours and woke up to tell us. Who knows.

The good news is that the surgeon re-assured us that Abigail's half-open eye was not an eye problem; it will open fully in time. It can take up to two months for swelling to go down completely! We thought her swelling was just about done but the surgeon told us, without seeing her, that he is sure she is still swollen. I guess her face is going to continue to change!

It is possible that Abigail would get a lazy eye from the surgery (about 20% do), but that they would probably be able to correct it as well. But we are not supposed to be concerned about that, said the surgeon. The real concern is whether the brain accepts the new shape of the forehead or decides it liked the original shape and therefore will continue to grow in the original shape, thereby re-shaping the skull bones as it grows to the original shape. If that happens (which I believe we should find out within the year), then another surgery may be necessary to correct it again, but that wouldn't happen until she is 8 or 9 years old. There is a 20% chance of this happening as well. We would appreciate it if you want to pray about that alongside us.

That's it for now. Thanks for staying tuned....

Tuesday, June 16, 2009

Hymns

The past two days have been rather normal. Abigail is making more progress in her healing. Her stitches are starting to look better, although we have some time to go before they dissolve completely. Then we just need to wait for her hair to grow to cover the scar! Abigail's face, we think, is still a little bit swollen. It is hard to tell because we are not entirely sure what she is supposed to look like! We are concerned about her right eye; it is still half swollen shut. It looks better then it does in the below pictures taken on Sunday, but it hasn't improved since Monday morning. It kind of looks like a lazy eye at the moment, which is making us scared that it may in fact be a lazy eye. It's probably not, but we'll call the doctor tomorrow to see what he says.

Jaron has come to accept Abigail as Abigail today. For the last week he has always said it was Abigail but we weren't sure he was convinced since she looks so different. But today we found him sitting on the floor next to Abbie, inspecting her stitches, saying "Hi Abbie", patting her and giving her kisses on the head. We now know that Jaron knows it is really Abigail, although she may not look the same. It was very sweet to watch.

Mary's mom left yesterday - a big thanks to her for her help. And also a big thanks to Jeremy's parents for their help in watching Jaron last week as well. We are blessed to have family who are willing to sacrifice their time and schedules to help us in our need. Our church has also been a huge blessing, providing meals yet again (for the third time in 7 months)!

Jaron's fingers continue to heal well. They don't seem to bother him anymore, but we keep it wrapped so they don't get dirty since several layers of skin are missing.

Here is a few videos you may enjoy from our latest bedtime routine:

video

video

Sunday, June 14, 2009

The Latest

We have been spending a lot of time this past weekend not doing much of anything other then spending time together and living out the regular routine. We've really slowed our life down significantly compared to last week and have intentionally made this weekend more relaxing.

To recap the weekend, we've been going for walks, playing in the back yard, running some errands, taking naps, blowing bubbles, grilling, sitting on the front porch, sitting on the back porch, drinking ice tea, dreaming about the months and years to come and other such lazy summer weekend activities. It's been quite nice.


Abigail is doing very well. She is still swollen around her head and her right eye is still halfway swollen shut. She is a little fussy at times but we have not had the need to give her any tylenol at all today. Her stitches are looking good and some are even thinking of coming out. It is amazing how God has made little babies to heal so quickly! It is happening right before our eyes.


This afternoon we took Jaron out for a walk while Abigail was napping (Mary's mom is still here to help out and she volunteered to stay behind while Abbie slept) and we were commenting to each other that it was only last Sunday that we were taking a walk and talking about how we really did not want to go through this surgery but knew that we needed to, and that we had to trust God and His plan. And look where we are now, only seven days later! All back home and Abigail is doing really well! Praise God! He truly carried us through this trial.


Here are a few photos of Abigail today...






Friday, June 12, 2009

She's Home!!

Abigail was discharged today and it was a very joyous occassion to be in the car together going back home. Hooray! It was very nice to be back together as a family: Jaron was very happy to see his mommy, mommy was thrilled to see Jaron, daddy felt at peace now that his girls where home and Abigail went back to sitting and watching everything Jaron did out of her one un-swollen eye.

The recovery process is far from over as we have some home care to do and she will remain in pain and discomfort for quite some time. So although she is home, she is fussy and miserable so we still don't feel like we have our Abigail back quite yet. She is still swollen significantly and can only see out of one eye. But underneath all of that, we can easily tell it is Abigail and are so anxious to have her healed and back to normal.

One of the key ingredients for this weekend is to do a whole bunch of nothing. Do what we need to do but otherwise just rest, relax, play with the kids and sleep. It has been a long time since we've had a weekend like that and we are really looking forward to it. Each of us needs to recover in some form after the past week.

So I'm going to get started on the weekend and I'm going to go sleep....

Thursday, June 11, 2009

A Photo is Worth...

We've probably blogged close to a thousand words since Monday, but the following photos will really tell the story of how we feel and what Abigail is going through.

Note: Abigail looks completely different, mostly due to swelling.
Before Surgery:




Just after Surgery:
Tuesday:

Wednesday:
Since these pictures the drainage tube has been taken out of her head (seen in the last photo) and her swelling has gone down. We'll continue to post photos of her healing progress from here on out.

The Storm Before the Calm

We had quite a flurry of activity this morning, starting at 4:00 am. Abigail has been throwing up and not nursing terribly well lately which is obviously a cause for concern. It was possible that the antibiotics were making her stomach upset but they couldn't take her off antibotics until the "drain" had been removed from her head.

The "drain" is a tube that they put below the skin across her forehead that collects blood and other bodily fluids and carries them down the tube, out of her head behind her ear and into a bulb attached to her nightgown. She's had it in since the surgery but the surgeons decided to pull it out this morning. That process is rather painful, as you can imagine, and she screamed through the entire thing. But it is really, really nice to have that out of her head: we don't have to carry the bulb around when holding or moving her and we don't run the risk of her trying to pull on it (they ended up putting a splint on her arm so that she couldn't grab it).

But that is gone now and so she doesn't need the antibiotics anymore. But after they pulled the drain, they took her down for a CT scan this morning. They were afraid that she was throwing up so much because it was possible that there could be blood clotting on the brain. If that was the case, then there were going to have to be more procedures and operations to fix it. So, of course, we were very worried. But a look at the CT scan didn't show any clotting, for which we are really relieved.

So all of the above happened in a few short hours, then Abigail was able to sleep. The report late morning today was that she was feeling much better, looked much better, her swelling went down a bit, was smiling and was even able to see very slightly out of one eye. She also had her last IV come out so she is down to two lines which are only monitors. Nothing is stuck into her body anymore!

So things are calm at the moment, but one never knows when things will get crazy again. The plastic surgeon even came in this afternoon and told us that we could take her home today if we were comfortable with it!! Wow! However, we aren't comfortable taking her home just yet and the nurse agrees so we are going to wait until some time tomorrow. Hopefully oozing will stop and the swelling will go down at least enough for her to see and then we'll feel better about taking her home.

Tonight I plan on posting some photos of the past few days.

Wednesday, June 10, 2009

Goodbye Turban

Abigail Update: We have some positive milestones to cover in this update and some disappointments as well.

The morning started at 5:00 am with a doctor visit, a needle to draw labs and the removal of her turban bandage - the poor girl looked like a wounded soldier out of a WWII movie with that thing on her head. So it was nice to have it taken off ... until it was actually taken off. Once the turban was removed we could see the stitching across the top of her head which really looks aweful. We could also see her bald head (they shaved her hair .... sniff...) and all of the swelling that had otherwise been hidden. So we had another "oh, poor Abigail!" moment, but have also gotten used to such things and we moved on. We understand that Abigail's appearance is going to change almost daily over the next several weeks and have come to accept that.

It was difficult for Mary to wake up this morning and find that now both of Abigail's eyes were swollen shut so that she coudn't see at all. Granted, it was hard for Abigail to come to that conclusion as well and she had several moments of panic while she tried to figure out what was going on. One positive spin on this is that since she can't see anything, she spends more time sleeping, or at least resting.

She was going to be moved out of ICU today, but since there is a shortage of beds on the surgical floor of the hospital, she is staying put for now. She may be moved tomorrow.

Mary Update: Mary is loving every minute of this visit. Let's see: she doesn't sleep at night because the nurses come in every hour to check on Abigail, she's emotionally drained to see her daughter going through this, she has to eat hospital food, she sleeps on a couch, she misses Jaron and she doesn't get any time to herself because there is a constant flow of doctors, nurses, housekeeping and other staff in and out of the room. So, yeah, she's having a great time.

Jaron Update: His fingers are doing OK and he goes to the doctor tomorrow evening to have them looked at. They don't really seem to bother him unless the bandage is off. Otherwise, he is having a terrific time with his grandparents. They brought him to visit the hospital today and he and Mary were both very pleased to see each other. Mary's mom is coming into town tomorrow to take over for Jeremy's parents.

Jeremy Update: Back to work. Unfortunately time off is limited and the Riggall's would like to take a family vacation some time this year ... and not to a hospital, which is where all of the vacation time has been going thus far. It's just a bit harder to jump into work when there are so many other concerns to be concerned about, but work is getting done nonetheless.

Thanks for staying tuned. We would like to post some pictures of Abigail within the next few days so check in later.

Tuesday, June 9, 2009

Three lines down, five to go...

Abigail seems much more like Abigail today. Although she still spends a lot of time sleeping, she also spends more time awake, looking around (one of her eyes never swelled shut), and trying to stuff hospital equipment into her mouth. The big milestone today was the removal of three of her lines (a line being an IV, tube, monitor, etc. that is attached to her body). She still has five more lines to be removed but she is much easier to handle with five lines then eight.

Tomorrow morning the head wrap will come off; I'm thinking that it is going to be scary to see her forehead and the incision but at least that is another step in the right direction.

God continues to be good to us.

Update on Jaron: Jaron's burned fingers have since blistered and then gone down again. They don't seem to bother him when his hand is wrapped but doesn't even use that hand when his hand is unwrapped. We feel terrible that his medical concerns aren't as prevelent in our minds but we also know he is being well cared for. At some point, and somehow, we need to set up a visit this week for the Pediatrician to have a look at him. We're still trying to figure out how to schedule that one...

Otherwise, Jaron is having a blast playing with his grandparents!

Monday, June 8, 2009

On the Road to Recovery

Abigail is sleeping, and has been all day so far. But that's good - sleeping helps her heal :)

We now begin the long road to recovery but the doctors are all optimistic that it will go quickly. We may be home by the weekend!

Let's back up to fill in some of the details: Murphy's Law was in full effect today, but not in the operating room, fortunately. Mary and I missed the surgeons that came out to talk to us three times today!! First, the Plastic Surgeon came out prior to the surgery to say hello before he got started but we were at breakfast. Then the Neurosurgeon came out after he finished up his bit to give us a re-cap and we were down in the playroom with Jaron, so we missed him. Then the plastic surgeon came back out after the procedure but we were out getting lunch!! And we were working so hard all day to be sure that we were available when we were expecting updates. Oh well.

The surgeons finished around 1:30 and gave the report that everything went very well - praise God! It took another hour for them to get her out of anesthesia and close to another hour to get her upstairs and settled before we could see her. That was another difficult waiting period. But we were also in good spirits, feeling as if a weight that had been holding us down for six months had just been lifted. And we were praising God for His goodness and mercy!

When we finally saw Abigail we were shocked - she didn't look like our little girl at all! Partly because of the swelling and partly because they had changed the shape of her face. We knew that we should expect to be surprised but it still didn't make it any easier. It was the second time that day that we really cried.

Since then, she has been sleeping until late evening when she woke up enough to be held and to nurse.

We are grateful for the steadfast arms of the Lord that carried her through this surgery; and we are confident that He will be carrying her through the recovery period as well.

So many of you, even those we don't know, have upheld us and Abigail in prayer today and over the past few months. Know that we have felt the warm peace of the Lord because of your fervent prayers; tears come to my eyes as I think of the love and support of you all. May the Lord bless you.

We'll continue to update at least daily so feel free to check back in to check on Abigail's status.

It's over!

The surgery is done (finished at 1:30) and everthing went just as expected! Hooray! Praise God!

We can't wait to see her, which should be shortly. They think recovery is going to go quite well.

She's "Rock Solid"

We've received a few updates over the past couple of hours. They have been giving us the details but I won't share them here.

One major reason to praise God is that the part of the surgery where the most possible blood loss would occur is complete and that went well without any complications. Hooray! Blood loss is the biggest concern with this surgery.

The nurse that is giving us updates just told us that she is "rock solid" and very stable.

The prayers of many are being heard....

Jaron showed up an hour ago - man, it was so good to see him! He is so cute and lovable and full of energy. Seeing our son just being himself is exactly what we need to see right now. We had Jeremy's parents bring him down for distraction purposes, which is working wonderfully.

Stay tuned for another update in a few hours. Lord willing the surgeons will be wrapping things up by then...

She's Under

We got down to CHOP at about 6:30 this morning and had about an hour to spend with Abigail while they were doing pre-op stuff. The nurse took Abigail at about twenty of eight and we cried because it was a very, very difficult thing to do. Then they took us to the waiting room, but because Abigail's surgery is so long they gave us a private room, which is super nice because we don't have to sit around waiting with 30 other people.

Then we went down to get some breakfast and coffee, but unfortunately missed the surgeon who came out to see us prior to the surgery. Oops. It's OK, though - I'm not sure what new information he would have given us. We've already asked every question we can think of three times!

We get an update from a nurse about every hour. The last thing we heard was that she did really well and went under peacefully at 8:00 am. Only five or six more hours to go until we see our little girl again...

And happy month birthday to Abigail! She turns seven months old in about 2 hours.

Sunday, June 7, 2009

Basement

Mary and I never really talked about finishing the basement other then "it sure would be nice" and "maybe someday". And yet, somehow, it's re-finished! Sometime back in January I started doing stuff down there to clean it up and organize it and I guess I never stopped!

It is a multi-purpose room: playroom, tv room, office, guest bedroom, laundry room, exercise room, etc. We are pleased to have the extra space and a place to put guests when they come to visit!

Below is one "before" picture followed by "after" photos.





Fire Results


ER... again

Well, this day didn't end the way we expected it...

I suppose they never do with youngsters around. It was early evening. Jaron and I had built a fire to introduce him to his first marshmellow. We went over the rules of the fire very clearly and was keeping a close eye on him. What we weren't watching, however, was the lid to the fire pit that I had just removed from the fire. The poor kid went to grab it when my back was turned; oops, bad move. He ended up with second degree burns on his right hand across four fingers, right where the fingers bend. I felt absolutely terrible that I let him do that but there wasn't much time to wallow in my stupidity: Mary and I had to run cool water, comfort, find tylenol, call the doctor, google "children burns", etc.

About a half hour later, we were on our way to the emergency room per doctors orders. Fortunately, Abigail was already in bed during this entire thing and the neighbor agreed to come over in case she woke up.

After almost three hours of waiting, the wound was finally cleaned and dressed (what takes them so long? Honestly, it was 10 minutes worth of work...) and we were packing up to go back home, only to find that Abigail had woken up and was crying for an hour and a half! Poor kids!

Well, Jaron needs to be followed up by his Pediatrician and also they recommend him seeing a hand specialist for the chance that the skin doesn't grow back properly which would limit the bending of his fingers. We are supposed to set up both appointments for this week - yeah, that'll happen. We're supposed to be at CHOP (Children's Hospital of Philly) bright and early Monday morning (the day after tomorrow!) for Abigail's surgery, which will keep her and Mary there for about a week.

Well, Jaron never got his marshmellow and Mary and I never got the relaxing evening we were hoping for. But, praise God, all is well - the kids are happily asleep and we are thankful for God's mercy yet again.

Thursday, June 4, 2009

The time is near...

Four more days to go until sweet little Abigail's surgery. Man, is it scary.

A friend of ours, Lisa Shay, wrote the following in a email to Mary today that helps put all things in perspective, God's perspective: "I know you're scared. But this moment in time for her surgery was already known by the Father, He who knitted her together in your womb. Continue to put your hope and trust in Him and He will see you through. His grace is sufficient - for THIS day....do not borrow trouble from tomorrow. " Thanks, Lisa, for your encouragement.

I will be doing my best to post updates on Abigail, at least daily, if you would like to check in to see how she is doing. For those who do not know the details, I'll briefly describe the operation.

She is having a reconstructive surgery on her skull due to prematurely fused skull bones, called mytopic craniosynostosis. Basically, they will be removing and re-shaping the front two forehead bones as well as separating the eye sockets. There are a lot more details but I will not be going into them here. It is a rather major surgery that will take approximately four hours, needing the assistance of neurosurgeons, craniofacial surgeons, anestheseoligists and others. Recovery time in the hospital is about a week.

Thank you for battling in prayer with us....