Gave blood and thanks

Well, gave blood today. We made the big trip to San Antonio to give blood specifically reserved for Connor (just in case he needs it). We got to finally see what the hospital looked like, and what was around as far as food and hotels. The hospital was HUGE, and parking was INSANE! The hospital was definitely a bit on the older side, but all the staff was very friendly.

Going to the hospital actually got me a bit nervous today. I wasn't prepared for that feeling, but it kinda snuck in. I think my mind is starting to realize that it's only a week away! But I've been so busy with paperwork, getting work stuff ready so I can leave, cleaning our house, and getting our finances in order that it hadn't really sunk in until I actually entered the hospital today. Please pray for my nervousness, and that God will quiet my nerves. I still have a peace, that can only come from God, but sometimes I am wistfully sad thinking of my baby Connor, and him wearing a helmet for the rest of his baby-hood.

Well, enough of that! Two huge praises.

1. I got approved to be off work! Yay! It will have to be unpaid, but I don't even care! I'm so excited that Connor will have this opportunity to have a less invasive procedure. Thanks to my manager for being so great, and chasing the HR paper trail!
2. And Thanks Jada for setting up our care calendar. Our needs are already starting to be met. I absolutely LOVE my church family!!! They are a perfect example of living out Acts 2!

   ⁴² They devoted themselves to the apostles’
   teaching and to fellowship, to the breaking of bread and to prayer. ⁴³
   Everyone was filled with awe at the many wonders and signs performed by the
   apostles. ⁴⁴ All the believers were together and had
   everything in common. ⁴⁵ They sold property and possessions to give to
   anyone who had need. ⁴⁶ Every day they continued to meet together in the
   temple courts. They broke bread in their homes and ate together with glad and
   sincere hearts, ⁴⁷ praising God and enjoying the favor of all the
   people. And the Lord added to their number daily those who were being
   saved.

I am updating the "needs" post below with updates, so I don't have to copy/paste here. If you didn't receive this, and wanted to help out, let me know. I can forward the link.

Connor's 6 mo pics

Well, I got to thinking... Man, since Connor will be wearing a helmet in less than 2 weeks, I'm really going to miss seeing Connor's head, and just stroking my sweet baby's soft head while he's nursing. I decided (kind of spur of the moment) that I needed to go take some 6 mo pics of just Connor, so I went and did that this weekend. Man, was he a happy baby. Everyone was commenting on how happy he is. And the pics turned out fantastic!

Thank you Jesus for blessing us with such a happy baby. He has to go through a lot in his life, but I have a feeling that he's going to be smiling and back to his happy self in no time. That is what is going to make this a lot easier on the mama. Thank you, God for my little C-man.

Some needs

Hi guys.. I have had several of you ask what we need over the next few weeks, so here is a list of things.

1. Prayer - and lots of it. Prayer for the surgery to be a success, and for God to guide the surgeons' hands. Prayer for minimal bleeding and swelling. Pray for pain management, and for a happy baby who is not in pain. Pray for this to be the only surgery needed, and that he will be completely healed of this with no future developmental issues or headaches due to this.

2. NEED MET - Watch the twins next week - One day next week, we are going to go to San Antonio to give blood. We are going to try to get an appt for in the morning, so it should only be a 1/2 day, but will need someone to watch the boys on that day.

3. NOT NEEDED (family in town) - Watch the twins on Dec 8th (possibly) - We have to go to San Antonio the day before surgery to get a head scan and meet the doctor. My mom MAY be in town for this, but not sure yet. Will update on this one later.

4. CARE CALENDAR SETUP - Meals for approx 2 weeks - Starting on Dec 8th, it's going to be rough for us and family to prepare meals as we will have a lot of back and forth trips to San Antonio, so meals during these few weeks would be greatly appreciated.

5. CARE CALENDAR SETUP - Playdates for the boys - Between Dec 27-31. I will be working this week, so it would help Dustin out a bunch, since Connor will still be recouperating.

Surgery is scheduled

Well, I got a phone call yesterday from the nurse at the San Antonio office, and she said that the doctor has reviewed Connor's results, and he does in fact have Sagittal Craniosynostosis, and he would be a candidate for surgery on December 9th. So, looks like it's on. We are continuing to pray about it, and are willing to go where God leads us on this. But since we started this process and investigating this endoscopic route, and when we found out that he'd be a candidate for this, God has given me so much peace about it.

Without a doubt, I want my baby to be healed of this. And knowing God, I bet He will use this experience in our lives to glorify His Kingdom somehow.

We have been given the option to give blood, so we are definitely going to do that. Connor has the same blood type as Dustin, and I'm universal, so both of our blood would be able to be used if needed. Most likely it will not be needed, but we want our blood ready and available for him if it is needed.

So, now the paperwork is starting, and I just know this two weeks is going to fly by.... Kinda nervous about that fact.

Trip to visit new cousin

We went to OK to visit my sister, and to see her new baby! Such a sweetie! Carsen Wayne Williams was born on November 19 at 5:45 pm, and weighed in at 7 lbs, 14 oz, and was 19" long. We really enjoyed visiting everyone, but we DID NOT enjoy the airports, and planes! On the way up, they were unprepared for the ice on the plane wings in Austin, so I missed my flight in Dallas. On the way back, my airplane had mechanical issues, so I was at the Amarillo airport from 6am - 1:55 pm, at which time, they preceeded to tell me that every flight from 8am on was booked through every airline (except they couldn't check southwest). Thankfully, my brother lives there, so was able to come pick me up, and we had a little break from it all.

At around 1pm, I found a flight into Austin that left Amarillo at 1:55, and took it! I was so glad to see Dustin and the boys after 12 hours of airports and planes! But amazingly, Connor did fantastic through it all. Everyone was remarking on what a happy baby he is, and how great he is doing, and couldn't believe he was doing so well after being in the airport that long.

Connor's Head - Before pics

We sent in the CT scan results to the doctor, and are just waiting for him to review them. I have also been talking to several moms, who have done endoscopic and CVR. Everyone has nothing but good things to say about the San Antonio team, and the doctor there.

A BIG update and a BIGGER prayer

So, after lots of prayer, the nurse from San Antonio hospital that does the Endo surgery gave us a call. She said Connor was still able to get this endo surgery! I couldn't believe it! Everyone was saying that he's too old, and wouldn't be able to get it.

Only thing is - It would be in 3 weeks!! Oh, goodness, this changes EVERYTHING! We have to get our CT scans and some pics over to the doctor ASAP so he can evaluate them, but this is a HUGE blessing! Also, a cool thing, is I've been in contact with a LOT of moms that have done this surgery in the past, so I'm getting a lot of good advice, and feeling somewhat more prepared.

The one thing about the endo surgery that I was hestitant about was the fact that the Austin doctors said they couldn't 100% verify that he wouldn't need a 2nd surgery, and when I talked to the nurse today, she said that Dr. Jimenez is the doctor that first pioneered the endoscopic surgery, and has been doing it for 15 years, and has never had to do a 2nd surgery. Wow! That's good news.

Also, at Real Life group today, the group prayed over Connor and anointed him with oil, and asked for God to heal him. I know God can totally do that if it's his will.

So, that said, here are our prayers:

1. Pray for healing (if he can NOT have to have the surgery, that would AWESOME!)
2. However, if surgery is in his future, I believe God gave us this opportunity to do the endo route because we specifically prayed for it (even when everyone was saying it wasn't possible) So, pray for guidance on this, and a smooth process of the next 3 weeks.
3. Pray for lots of wise council in the women that we've been corresponding with to give details on what to expect, and some of the challenges they've faced.
4. Pray for our frazzled state, as we're now scrambling around trying to get everything in order.
5. Pray I can get some time off from work. I used all my vacation, personal time, family leave, etc when I had Connor. So, just a prayer that I'll be able to get some time off to make this surgery an option for us.

Also, I have some huge praises:

1. I praise God that we have so many prayer warriors on our side lifting us up in prayer. Thank you guys!
2. I praise God for such a awesome church family who is supporting us 100%, by praying, and offering to provide anything we might need in the coming months.
3. I praise God that we have good insurance that covers the surgery and the helmets that he'll require for the next year if we do the endo surgery
4. I praise God for such a sweet baby. He's the sweetest, most laid back baby I've ever seen.

Feeling much more at peace

So, this has been a rough few weeks around our household, but we've been praying a whole lot.

We dedicated Connor to God a few weeks back at church, and at the peak of my emotions, God reminded me.. Remember, Angela? Remember, you dedicated him to me? I love him much more than you ever could, and I will take special care of him. This of course lifted a huge burden from my chest. I knew I couldn't control this, or take this away from Connor, but God would be with him (and us) throughout this process. So, we gotta trust him to do that.

Phil. 4:13 - "I can do all things through Christ that strenghtens me."

So, here's what we need prayer for:

1. Pray for wisdom and guidance that we find the right surgical approach, and right surgical team


2. Pray for Connor's head - that the surgery will completely fix his issue, and it heals perfectly like nothing ever happened


3. Pray for his recovery - that he will quickly recover, and not be in too much pain, or have too much swelling or bruising


4. Pray for Connor's development - He's WAY ahead as far as development now, but pray that this condition doesn't cause any development issues down the road


5. Pray for mommy and daddy's emotional state. I go through times when I cry for my little baby.

A lot more educated

So, we've been doing a TON of research. I'm pretty much past the overwhelming initial emotion and shock, and now just determined to learn as much about it as possible. I talked to the nurse coordinator here, and she answered a bunch of our questions.

We are looking into two different routes.

1) Open surgery (called CVR - cranial vault reconstruction) - This is where they cut a zigzag line across the top of his head from ear to ear, and cut out the bone along the suture, and make some more cuts in order to reconstruct his skull. This takes about 4-8 hours, and performed by a neurosurgeon and a cranio-facial (plastic) surgeon. If we go with this route, it would be done right here in Austin in march at the Dell childrens hospital, which is the cutting edge for children's hospitals. He'd require 2 months of minimal activity, but no helmet is required.

2) Endoscopic surgery - This is claimed to be "less invasive", where they make 2-2 inch incisions, and go in endoscopically and cut and remove the bone. Supposed to be less bleeding, less recovery, less scar, faster healing, etc. Only drawback (if you consider this a drawback) is that he would have to wear a helmet to reshape his head for maybe a year. The helmet is required, as they don't reshape the head during the surgery like they do in the CVR approach, since it isn't completely open. Only thing on this one is Connor MAY be too old already for this procedure. They like to do this one when the babies are 3-6 months old, since the bones are softer. If we went with this option, we'd have to go somewhere else.

So, with that said, we called San Antonio University Health Systems today, and the nurse research coordinator is supposed to call us back. We want to meet with them to discuss the possibility of endoscopic (and also get a 2nd opinion while we're there). The doctors there at this hospital pioneered the endoscopic approach, so we're hoping they have lots of data about it, and it's success rate v. the traditional open approach.

Some drawbacks we've read to endoscopic is that it "may" require a 2nd surgery later, but we'd like to get some information on it from the docs in San Antonio, as they didn't have a lot of data regarding this at our current hospital.

We have a 2nd appointment with the doctors here in January, so by then, we should be set, and have all our info together to make an educated decision. If we have the surgery done here, it'll be in March sometime.

What is Craniosynostosis (CRAY-nee-o-SIN-os-Toe-sis)

So, just a quick recap of the condition...

Craniosynostosis is a condition in which the bones in an infant's head fuse prematurely (called sutures), not allowing adequate growth of the brain. However, the brain continues to grow, and pushes on the non-fused sutures causing the skull to be abnormal shape, and can also cause intercranial pressure, which can result in contant headaches, inability to focus, developmental issues, and blindness.

Here's what a typical infant skull looks like.

Here's a infant skull with sagittal craniosynostosis. You can see the bone toward the back along the top is fused. This creates a ridge along the top of the head, and causes the head to grow long and skinny with a protruding forhead, and doesn't allow growth from side to side.

NOTE: These are not scans of Connor's head. They are pics on the internet. :)

A shocker - our diagnosis

So, since Connor's head was a little longer than normal, our pediatrician sent us for some "just to make sure" xrays and CT scans, which we were told were all fine. We weren't worried, since our twins had really weird head shapes, and they were both fine. But she sent us for one final appointment to the cranio-facial surgeon to read the CT's as one final step. We assumed we'd be finished with this whole process after this last checkpoint.

Well, I went to the appointment, and was met by a staff of 7-10 nurses, nurse practitioners, and along with the cranio-facial (plastic) surgeon, and the neurosurgeon, where they proceeded to tell me that we were told the xrays and CT was fine, but they weren't.

They said that Connor has Sagittal Craniosynostosis, would require surgery in the next 4 months. Two of the bones on the top of his head had prematurely fused together, and this only happens in one out of every 2000 babies. They continued to throw a lot of information at me, such as, if he doesn't have this surgery, he will have increased intercranial pressure (ICP), possibility of learning or development challenges, inability to focus (probably due to pain), and even possibly blindness. I was COMPLETELY shocked! I don't think I've ever been so speechless in my entire life. I didn't know what to say. I knew I needed to ask some questions, but I couldn't form a coherent thought except - My baby is going to need surgery on his head! WHAT? You must be mistaken. He's perfectly fine. Look how happy and healthy he is!

I knew in my heart that we were going to go with the surgery, so I did manage a few questions to the doctors and then later the nurse, but they told me to go research it, and come back with my husband, and they'd answer all my questions.

I then checked out, with the nurse assuring me that the surgeons here are very good. I waited until I hit the parking lot before I burst into tears. I knew it wasn't going to be easy breaking the news to Dustin. When I told him, he was very angry. Angry that they misread the CT, angry at the "what if" we would have not rescheduled this appointment, and they never caught it.

Connor - Our little Miracle

Wow, so after having such difficulties getting pregnant with our twins, never did we know that God would bless us unexpectedly with a baby. We were super suprised and excited and overwhelmed all at the same time, as we knew we'd have our hands full with 3 boys who are 2 and under. But we know that God will be there to help us.

He was born on June 9th at 1:16 pm, at 8lbs 10oz, and 21 inches. He's now over 18lbs.

And What an EASY baby Connor has been. After a little reflux issue was resolved, he's been happy, healthy, and a great sleeper. He's the happiest, most laid back baby I've ever seen, and we've really been enjoying him. Anyone that sees him can't help but smile. He's such a sweetie, and such a blessing into our lives. We thank God for him.