Headed Home! (no pun intended)

Hooray! Our last day of going to the hospital and our last day in San Antonio. Elden is still doing great. He wore his helmet one hour on, one hour off today. It is still hard to get it on him, and when he gets mad it really heats up around his head, but he is slowly getting used to it.

Here is Elden with Dr. Jimenez – our favorite neurosurgeon in the whole world. Elden isn’t too happy here because they just took the helmet off. Dr. Jimenez is happy with his recovery and we have our next appt. set for Jan. 20. Our flight leaves tomorrow around 2 pm and we get into Flagstaff a little after 5pm. It will be nice to be home!

We just want to say thank you so much to everyone for prayers and support. We couldn’t have done it without you. We are so blessed to have so many wonderful friends and such caring family. Through this we have all grown and learned so much. Most of all, our faith is re-affirmed as we focused on our God who is sovereign and has once again given us His grace and mercy. All you can do is put it into His hands.

After we get home, we will post periodically about Elden and his progress. If you are reading this because you are in a craniosynostosis situation, please feel free to contact us anytime at ideatreedesign@hotmail.com, we would love to talk with you.

Elden's Helmet!

Today we got Elden’s helmet! We were at the hospital for several hours while they made slight adjustments for a proper fit. It is a cute little clear plastic helmet with foam padding. It fits real snug around his head and will help mold his head while his brain grows over the next year. Otherwise, his skull would grow back the way it was.

It will take several weeks for Elden (and us) to get used to his helmet. He really doesn’t like it when we put it on, but once it is on, he seems to be ok with it. We are starting off slowly with a 1 hour on, 1 hour off schedule. And we will increase the time he wears it until he is wearing it 23 hours a day – in about a weeks time. Once he wears it 23 hours, we will only take it off at diaper changes, when we get him dressed and bathed– all of those small increments of time over the course of the day should add up to an hour. He will take naps in it and sleep at nighttime in it. Every time we take it off, we will need to clean it out with rubbing alcohol. Elden will wear a helmet until he is at least 18 months old. We will come back to San Antonio several times over the next year to get another scan and another helmet (because he will outgrow the helmet), which takes about a week each time. The next time we will come will be in 6 weeks.

There wasn’t an option to have a colored helmet, bummer!. They said we could paint it, but we don’t feel comfortable with him sitting in a painted helmet (off-gassing of paint?) So, we are going to get stickers to decorate it. We can have fun with that!

Today (Tuesday) was also Mom’s (Grandma’s) birthday! We went to a seafood restaurant on the River Walk to celebrate. Happy Birthday Mom!

On Wednesday we will go to the hospital one last time for our follow-up appointment with the surgeon at 1 pm. And tomorrow we will head home. Hooray! We will probably post one more time before we leave. Thanks everyone for joining us on this journey!

Better Days

Thank you so much for your emails and posting comments! And thank you for your continued prayers!

Elden had a great weekend. He was swollen through Saturday, but woke up Sunday with little to no swelling. It really is incredible – his recovery. He was able to take some Motrin without making him sick when his tummy was full. So, we alternated Tylenol and Motrin for him every three hours through Saturday. On Sunday, he was just on Tylenol every 6 hours and come Monday, we are only giving Tylenol to him if he seems to need it. He is a tough kid! We are all amazed at how well he is doing. He is just back to his normal happy self. And he seems to have found his voice – he squeals and screams with happiness and joy quiet frequently now. It makes us all smile and laugh. We just stayed at the house this weekend so that Elden could recover. We gave him a sponge bath and he even did a little tummy time.

Aspen is doing better after a few nights of cuddles. She doesn’t understand what happened to Elden’s head and wants to put band aids on it. She is such a good big sister – always bringing toys to her brother. She loves the stairs here and is having lots of good quality time with Grandma and Papa Tony.

This morning (Monday) Pat, Elden and I went back to the hospital to get another head scan. It was the same process as the week before with the StarScanner. He got little stickers by his ears as markers, and the cool white do-rag again.

This time he wasn’t too happy about it. He is just tired of people messing with him. We go back tomorrow (Tuesday) at 10 am to get his helmet and for the helmet fitting.

The rest of the day today, we went to Brackenridge Park, rode the train, and went to the Japanese Tea Garden, and then ate more yummie BBQ.

Stay tuned tomorrow or Wed. for photos of Elden in his new helmet!

Night / Day after Surgery

…so, a few hours turned into the whole night pretty quickly. Aspen did well without us last night, which is a relief. It is now 2:15 pm on Friday and I just got the password for the hospital internet, but can’t post because of their security. Elden is doing so much better, but we had a looooong, rough night with little to no sleep. He had to have a few more doses of morphine because he couldn’t keep the Tylenol or Motrin down. I would feed him and think “Yes! He’s eating!” and then he would just throw it up with the medicine they gave him. At this point, Elden had throw up on all of his and mommy’s clothes. My mom had to come bring us new clothes. I felt really discouraged this morning about it. All of the other babies have gotten to go home, and we are still trying to get Elden to eat. Poor thing, we just want him to be comfortable. His head became swollen. It may be hard to see from the photos, but it is swollen pretty wide to either side of his head, and it makes his ears droop down a lot. This is normal for the first 4 days, but still looks alarming to me. It is also hard to think about the space that is there now from the bone that was removed – I am afraid to touch it – to hurt him.

He is doing well – just uncomfortable and sometimes in pain. We are trying to keep the room dark and quiet for him. Even the slightest noise and movement seem to startle him. While nursing him, even the movement of my breath would upset him. We had several attempts throughout the day of feeding him, giving pain meds and he would get sick – so they had to give him more morphine. Our goal at this point is of course to get out of the hospital – get him to eat, poop, keep the meds down, get him off of the IV. Finally early afternoon, he woke up from a nap and seemed to feel better. I was able to feed him, and then give him Tylenol. All right – he kept it down! We narrowed it down to the Motrin being the culprit – making him sick.

Grandma, Papa Tony and Aspen came to visit. They had to wait in the ICU waiting area on the 8^th floor. Pat and I would take turns going down to see Aspen. She wanted to see her brother so bad and didn’t understand why she couldn’t. I would take photos and video of Elden and bring them down to show to her. That helped a little. Most times when I went back down the hallway to the elevators, I could here her crying “Mommy!”. Poor thing!

Dr. Jimenez came around 3:30 pm to check on us. At that point, I decided to hold Elden in my arms and walk him around. He seemed to be getting bored of the laying in bed position. Elden loves to be held upright to look around and check things out. As we were walking down the hall, Dr. Jimenez came through the double doors right in front of us. Elden took one look at him, gave him a big smile and laughed. At that point, Dr. Jimenez said we could go home if we felt comfortable with it. He mentioned that Elden had more swelling than normal – probably because he had to make so many more incisions in the bone to the sides of Elden’s head. Elden would have “dependent edema” for a few days which means that whichever direction his head was placed, the swelling would move in that direction. You can see from some of these photos that his ears look droopy and wide to the sides – because we had him upright, that was were the swelling was settling.

We were definitely ready to go!

Grandma, Papa Tony and Aspen came to pick us up and we left at 5 pm. Elden slept during the ride home. We were so tired, we just ate and then went to bed. Elden was great last night – he kept his normal schedule of waking up a few times to eat. I am getting used to holding him to nurse. And he is getting used to moving his head around again. I am sure it feels different to him. We gave him Tylenol or Motrin those times to control the pain, and he is doing great! The smiling photo of him in Pat’s arms with the animal pj’s on is from Sat. morning. Amazing!

We are just going to lay low this weekend to help him recover. We have our next head scan Monday morning at 8 am. We hope you are all doing well, thanks again for your prayers! We will post again early next week.

Surgery Day

Thank you for your prayers, they are powerful! We are sitting here with Elden now in the PICU- it is 9 pm. He is still coming out of the anesthesia – and we can tell that he is in pain. Overall he is doing good and the surgery went well – no complications and no blood transfusion. Now we just have to get through the next few days of recovery. Here is how our day went:

Arrived at hospital at 10 am, checked in, waited. Went back to the OR holding area at 10:45 and had a private room where we waited for nurses to come and take information.

This was a hard time – all of the waiting. Plus, we couldn’t feed Elden and he was hungry and mad about it. The last time I could nurse him was at 8:30 am, and then he had some Pedialyte around 10:30 am. I wore him in the BabyBjorn and he eventually fell asleep. Thank God!

The surgeons came around 1:15 and talked to us about he procedure. It was Dr. Jimenez and his wife/surgical partner Dr. Barone. This was the first time we met her – and she was very nice. Her and Dr. Jimenez seem to make a great team. They assured us that they would take good care of Elden, still it was hard to think about what was about to happen to him.

I found this link on their website that has a PPT presentation that shows actual photos of the surgery (not Elden’s surgery, just previous cases). These pictures helped me just because I wanted to know exactly what they would be doing. Just a warning: they are graphic and may be disturbing to some. Here is the link, at the bottom of the page, there is a link that says “Endoscopic Treatment of Craniosynostosis” – click on this and it will download or open their PPT file.

Finally the anesthesiologists came around 1:40 to talk us through the procedure and what Elden will go through. Here is our team of anesthesiologists. Then they took him back at 2 pm., he was just a smiley happy baby when they took him. The prep time took 1 hour – they used anesthesia gas to put Elden to sleep, and then started his IV, took lab work, intubated him, and positioned him for the surgery. Pat and I went to the cafeteria and sat outside during this time. The case manager Wai called us at 3 pm to let us know that they had started – and had made the first incision. The surgery took less than an hour and we received a second phone call from Wai at 4 telling us that it was done. She met us in the waiting room and we met in a family conference room with the surgeons Dr. Jimenez and Dr. Barone. They told us that it went beautifully.

Dr. Jimenez told us that Elden really was a special case – his sagittal suture was fused and growing twisted toward the back because of the positional molding. Because it was growing this way, a keel of bone was growing downward toward the brain and was causing pressure. Also, his sagittal sinus (the main blood supply to the brain) was unusually close to the suture – something they could have only seen with this type of surgery – through the endoscope. If we would have gone with the traditional surgery – it could have been bad, it could have been severed because the position was different and they would have been cutting blindly. WOW, so thank you God for leading us here to have this type of procedure done! My heart just sank when the told me that and I am probably still processing it. It is very humbling and just brings tears to my eyes every time I think of it.

Dr. Jimenez and Dr. Barone also gave us a “gift”. In an envelope, they had taped the small pieces of Elden’s hair that they shaved – and it said “Elden’s first haircut”. It was very sweet. They don’t shave the whole head – just small strips where the incision is made.

We were then led up to the ninth floor to the Pediatric Intensive Care Unit (PICU). We had to wait in the waiting area while the nurses set Elden up – but really we got to see him right away.

This was the hardest part for me. Maybe also because I was trying to keep it together through the whole day. Seeing Elden in the bed all hooked up, the cuts in his head and hearing his little raspy cry just broke my heart. There was nothing I could do for him. A nurse was trying to burp him because they get air in their tummies from the breathing tube. He was just so uncomfortable.

His head already looks different – the back looks completely flat to me. But it is swelling and “boggy”. The cuts aren’t too bad looking – no outside sutures, just a surgical super glue to hold the skin shut. The purple stuff on his head is the super glue. The nurses set up all of the monitors with alarms so that if his levels went below certain numbers – beeps or alarms would go off. These freaked me out at first – to hear those alarms go off. After a while, they set it up so that they would only go off at the nurses’ station. He is hooked up to an IV in his hand, and many other monitors with wires- blood pressure cuff on his leg, oxygen level monitor on his toe, heartbeat tabs on his chest, etc. Still, he is the cutest thing ever.

I gave him my shirt to have next to him because it smells like me. And covered him with the special blankets that Aunt Jaina and Jackie made for him. Jackie’s blanket has a prayer in every stitch and I love the thought of that.

All of the nurses and staff are very nice and accommodating to us. There is a little fold out chair for me (Jessica) to sleep on in the room with Elden. Pat and I will trade off sleeping there tonight. Grandma and Papa Tony and Aspen came for a visit. Poor Aspen couldn’t actually come in to see her brother, but Grandma and Papa Tony were able to. Little Aspen just doesn’t understand what is going on, I am sure it is scary for her. This will be our first night away from her. I know she is having a hard time.

Elden slept a lot at first, and then would wake up startled and fussy and then go back to sleep. Elden started to wake up more around 7:30 pm and I tried to breastfeed him. He did eat a little, but it was scary for me to position him, and hold his head. They said I could do it like normal, but he was still just so uncomfortable. He ate a little and then got really upset. They gave him more morphine. We’ll try again in a few hours…

A Marathon Appointment Day

Thank you so much for the great comments and emails today. It really does keep our spirits up knowing that a bunch of love is being sent our way.

Today was in a word – TIRING! We were at the hospital from 10 am – 4:30 pm, and probably spent 4+ hours waiting, and waiting and waiting. Elden was a champ and just hung out the whole time and smiled at everyone. Everyone was so nice to us. We went to the Specialty Pediatric Clinic at University Hospital. This is a huge hospital! You know, the kind you imagine on those crazy soap operas – yep, huge. Again…very thankful we live in Flagstaff.

There were a lot of families in the pediatric waiting room and we noticed right away the other families who had traveled to get the same surgery for their baby. One couple we met was from Oklahoma City and it was nice to talk with them.

Our first meeting was with Anne Leonard who talked to us about being part of a study on the bone of babies with craniosynostosis. Basically they are compiling bone from these surgeries for a repository for the use of future studies on the cause of this condition. We gladly agreed to the study – hopefully Elden’s beautiful God-made bone will help someone else someday.

After that we met with Blake from Orthomerica and had a pre-op scan done of Elden’s head. This was done with the “StarScanner” and was thankfully a quick and non-traumatic experience for Elden. Prior to this special scanner, babies had to be “casted” which involved covering their little head with a wet plaster process which not only took time, but was traumatic for babies.

First, Blake took several measurements of Elden’s head. Next, Elden got special stickers at each ear and a form-fitting do-rag that conformed to the shape of his head. This was basically a light white, cotton sock with a slit in it for his face. Isn’t he cute! We got to keep an extra one for him. There are photos here of our meeting with Blake, the StarScanner, and the computer screen with Elden’s scan. Oh yeah, and from the scan, they make a life-size bust of Elden’s head to make the helmet from. AND we get to keep it, wow. So after all of our visits this year, we should be able to line our mantle with busts from Elden’s cute head – yahoo!

After the scan we met with the surgery case manager Wai (pronounced Why) about a few specifics on the surgery. Dr. Jiminez has 4 of these cases tomorrow (including Elden) and we are scheduled last. SO, here is the MEAT of this blog: Elden’s surgery will between 12:30 and 2:30 tomorrow (Thursday). Please raise up the prayers for him at this time. Thank you! We have to be there at 10 am to get things rolling. We went over a specific feeding schedule for him, and what to expect the first 8 – 10 hours after surgery. Another reason to breastfeed - babies can eat up to 4 hours before surgery and also eat right after surgery if they are breastfed. So, the first 8-10 hours will be hard – Elden will be groggy with periods of extreme fussiness and then deep sleep. He will also have swelling and pain. It will be hard to see him like this.

Pat and I sill stay with him throughout the day while Grandma and Papa Tony will be taking care of Aspen (oh yeah Papa Tony got in safe today). THANK YOU for their support, it would be so hard without them! That night I (Jessica) will stay the night with him and hopefully there will be room in the “family room” or Pat. BUT that is on a first come first serve basis so we’ll see.

So, after meeting with Wai, we got into the cupholder bus and had lunch. Then at 1 went back up to wait to meet with the man – Dr. Jiminez. While we were waiting, a nurse and a PA came and got some vitals from Elden. Elden made sure to brighten their day with smiles and sparkly eyes. So, we waited and waited and went a little stir-crazy. Pat went down to get some taquitos which helped. Hooray, hospital taquitos!

While we were waiting, we also got to talk to a family who was from New Mexico. They were there with their son who was 1 yr old and had just finished his helmet therapy. It was great talking to them and learning about their experience. Mother to mother talk in this situation is so helpful. Their son is doing great and you would never know he went through this at 5 months old. She told me that the surgery was nothing compared to the adjustments necessary to the helmet therapy – getting the baby used to the helmet, etc.

Finally it was our turn to see the doctor. Again…last, maybe because our last name begins with a “Y” and it is alphabetical? Afterall, we’re forever Young so we can handle being last.

We felt immediately comfortable with Dr. Jiminez (the guy with the red tie). He is very nice, easy going, appropriately humorous, a father of three, and noticeably passionate about this condition and helping babies. We like him. And crazy as it is, feel at ease with handing our precious one over to him tomorrow. He maintained eye contact while talking to us and took time to answer all of our questions. Elden is a special case – his head shape is not the typical sagittal stenosis shape. But, the procedure will be the same.

He took several more photos of Elden’s head – those are the photos with the blue background behind Elden. The other people in white coats are students – this is a teaching hospital.

After that we were reunited with our family at the house and finished off the day with a few tears (from me of course) and a super yummie cappuccino from Olive Garden. Ahh, comfort Italian food. Thank you God for successfully getting us through another day. I will bring the computer to the hospital with me tomorrow and will post if they have internet access. Otherwise, check us out on Friday or Saturday. Hope you are all well! FINALLY, bed time!! And may the hand of God be on this situation tomorrow and may Elden be surrounded by angels and supernatural healing. AMEN.