Jake's Journey

A story about craniosynostosis

Bayley Developmental Test III February 15, 2011

Jake and Dad playing in the castle in the waiting room

Ok, so I’m still backtracking here with info for future patients and their ‘rents. CHLA was, to say the least, a big unorganized. It was almost as if they had NEVER done surgery before. Since they do a lot (I want to say close to 100/year) it makes no sense that all of the clerical mistakes kept happening, but they did. Anyway, We did our pre-op on November 15, 2010. We were leaving on November 16 to go to North Carolina to visit family until December 4. Surgery would then be December 8. I made our plans abundantly clear (and got approval) to all of the MDs involved and told them that everything needed to be done on November 15. We did end up changing our tickets and coming home on December 3rd so I could donate blood for Jake’s surgery and this was the day I had to donate for it to be good on surgery day.

Who cares about blocks....let's just talk and smile at each other!

While sitting in NC enjoying family-and attempting to pretend this big surgery wasn’t hanging over our heads-I received a call from Children’s Hospital. I was told that I needed to bring Jake to see the Psychologist from the Cranio Team before surgery; they asked me to come in the very next day. Sigh. I explained that I was in NC and we wouldn’t be home until the week of surgery. They hemmed and hawed that “I” was puttingΒ the test off until the last minute and then they put me on hold so they could talk to Alexis Johns, the psychologist, to see if she could possibly slip us in that week so we wouldn’t have to move the date of the surgery. What?? I was pretty frustrated by this completely unexpected “necessity” that they were throwing at us last minute. Dr. Johns was willing to fit us into her day before her other appointments on December 6th. Whew. I was really unsure why this test was all of a sudden something that could postpone surgery-when noone had ever even mentioned it to us before!

I LOVE rubber duckies, maybe I'll play this game!

Dr. Johns was a very nice lady. She promptly called usΒ as we arrived on that Monday. She then “played” with Jake for about 20 minutes or so. She did things like talked to him to see how he responded to her. Put cheerios on the table to see if he could pick them up. Gave him blocks in each hand to see if he would bang them together. Blew a little whistle behind us to see if he would look for the noise. She had me put him down on the sofa to see how he would do on his belly and on his back. She explained that she was simply administering the Bayley Developmental Infant Screener III before surgery and then they wanted to do it again 6 months after surgery to see how Jake’s development changed from before surgery to after surgery. The testing didn’t take more than 20 minutes, we were then sent to the waiting room while she “graded” Jake’s test and after about 10 minutes she met us in the waiting room and reviewed the results with us. Being our 4th child, neither of us were concerned at all about Jake’s development. Some babies develop more quickly than others-no big deal at all. Jake’s development seems fine to us as well. Overall, the test showed Jake to be pretty much average across the board: he was top of the charts in social skills (my very friendly fella) and pretty low on gross motor skills. Dr. Johns simply said that they want these tests done so they can continue gathering information for research concerning craniosynostosis, CVRs, and such. I had no problem making the long drive to CHLA early in the morning to have this test done but it was NOTHING life altering or something that should have (or possibly even would have) prevented us from doing the surgery. If I had to guess, the receptionist on the phone was over dramatizing the “importance” of having it done before surgery.

This lady keeps talking to me...how fun!

Let me just add one more tidbit of information. When we first met with Dr. Urata he told us that he is indeed on the ‘Craniosynostosis Team’ for CHLA. He told us that typically the team is reserved for those children who have extensive work that needs to be done-such as a suture being closed that is close to the face and so it deforms the facial structure or a patient who has more than one suture closed. For him, Jake was a very straight-forward, cut and dry case. One suture (sagittal) needed to be fixed; no big deal. Involving the entire team was not a necessity in his mind. However, since I wanted lots and lots of information (it was obvious I wasn’t going to just roll over and go with whatever I was told) he had no problem referring me to the Team so that Jake could be seen by multiple specialists and be monitored by many doctors and I could have ALL questions answered. My point: if you want your child to be seen by the entire team- ASK! He wasn’t going to refer Jake to the team but I brought it up and asked. I’m thinking that maybe every baby having a CVR isn’t expected to do the Bayley test but possibly Jake was put through the testing because he was being seen by the team? I don’t know.

 

If you have any questions-please feel free to email me! πŸ™‚

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Recovering at Home January 24, 2011

6 weeks post-op, January 18, 2011

Ok, so life is finally beginning to go back to “normal.” Of course, our “normal” isn’t a quiet, serene environment but nonetheless, we are getting back into our homeschooling, cooking, cleaning, running routine (versus the ‘no sleep; just survive each day’ mode). I was contacted this week by a sweet mom who is going through this journey with her first born child, a daughter. I was ecstatic to hear that my blog actually talked to someone who would be going through this exact same process, at the same hospital, with the same doctors (though I hated to hear of anyone having to deal with this). I’ve used this blog to keep all of my loved ones and praying friends and family in close contact with all of the happenings surrounding Jake’s surgery and care. At the same time, I always hoped that it would reach those who are in a desperate search for information because they are facing the same path. Anyway, I was able to talk to this mom (I’ll leave out her name just in case she isn’t interested in being “published”) on the phone for about an hour and share all of the details of our hospital stay. Truthfully, it was harder than I expected to talk to her and recount everything we had been through and to hear the fear in her trembling voice. It took me back to when I had first heard the diagnosis and simply wanted nothing more than to wake up and realize it was a dream-I wouldn’t have to put my baby through this horrible ordeal. Whew! Anyways, I was glad to be able to pass on all info I had and do whatever I possibly could to help her journey be a bit more easy (such a wrong word, but I can’t think of the word to describe it-knowledge is power, but this is one situation where nothing makes you feel in control). Due to babies needing comfort we had to end our phone call and she begged me to post more information for all those moms in her shoes. She also wants to talk again and discuss what life was like when we first came home. So, this is for you my new friend….I hope you find it at least somewhat useful! πŸ™‚

We were given the “all clear” early Sunday afternoon to return home. We very carefully, and somewhat nervously, buckled Jake into his car seat (I did make sure he was given a dose of pain medication right before we left so he would be good until we got home). As with everything else, he seemed to think it was no big deal at all…it was just mom and dad who were freaking out!

Ready to go home!!!

Dr. Lily, the greatest pediatrician, who was assigned to our floor of patients called ahead to our Walgreens so that we could pick up Jake’s pain medication on our way home (that was awesome!) So, we carefully drove back to the AV while Jake slept away in his car seat as if nothing had ever happened. We stopped at Walgreens and I ran in and picked up Jake’s narcotic and some OTC infants tylenol. We stopped at Chipotle (yummmo!) and Mark ran in and got our favorite order to go. We arrived home, came inside and Jake continued to sleep away in his car seat. I sat him in front of the lit Christmas tree so as he awoke he’d see all the pretty lights (he LOVED looking at the tree lights!) Mark and I melted into our comfy sofa, ate dinner, and had a good cry together as we praised God for getting us through that portion of this journey.

just got home and still sleeping peacefully

While at the hospital, we were “comforted” with the fact that Jake was hooked up to monitors all the way up until we put him in his car seat. At any given moment, I could glance at the monitor and know Jake was truly ok (and trust me, I was constantly looking). After being in the hospital for 5 days where we only took little catnaps, coming home was refreshing and our bed looked oh so inviting. The problem was that Jake didn’t have any monitors hooked up to him. He also didn’t have that big, comfy hospital bed where his head could be elevated and he was propped up by lots of pillows and blankets. So, after enjoying our yummy dinner we went and set up Jake’s make-shift hospital bed in our room. In the hospital, the nurses put an egg-crate mattress under Jake to make his bed extra cushy and soft (can you only imagine having your skull reshaped and how that must feel to then lay on it???). We brought that egg crate home with us. As his head was still swollen, I wanted his head to still be elevated, so I placed some pillows in the middle of our bed and then put the egg crate on top. Jake’s little body just snuggled right down into it and it looked perfect. He couldn’t roll and he was perfectly elevated. After taking a wonderfully hot shower in our own home, getting into some comfy jammies, Mark and I left the lamp on and got on either side of Jake. This was our sleeping arrangement for about the first week home. We have a queen size bed and I think Jake’s “bed” in the middle took up most of the bed, but it was much better than the hospital sleeping arrangements and we could both see Jake and touch him at all times (which truly comforted him and us).

Jake's bed for the week

A crib sheet fit perfectly over the egg crate

I kept Jake’s medicine and a piece of paper either on the kitchen counter during the day or on my nightstand at night. I was a bit frustrated when I got home and read the medicine order. It told me that he could have the narcotic every so many hours, OTC tylenol every so many hours, there needed to be so many hours inbetween each dose depending on which medication I gave him and he needed to not exceed so many mg/kg/day of acetaminophen. I’m a registered nurse. I know how to do drug calculations. I will say though, I was on a buzz from a major lack of sleep. I wasn’t told how much OTC tylenol Jake could have. So, I used my judgement to “figure” it out. So, every time I would give Jake either medication, I would right it down on my parent with the date and time, exactly how much I gave him, how many mg/kg it came out to for that one dose and then out to the side I’d right how many mg/kg he’d had so far for that 24 hour period. I’d then write down the next time he was able to get anything for pain so if either Mark or I woke up in a daze we could quickly look to see if it was time and if that was the issue. My advice to all parents going through this: make sure you have the doctor explain the prescription in plain English to you before you leave so that you understand perfectly how much to give your child. As I said, I’m a nurse and I figured and refigured it out to be sure. When I was at home looking at the bottles, I remember thinking, “really, I wish they would have just told me that for Jake…he weighs this much, so he can have this much narcotic and this much OTC tylenol every day. Remember that the OTC tylenol is written out in ml so you have to figure out how many mg are so forth. It was simply too much thinking for a parent whose nerves are already frayed. For the first 2 days at home, I simply gave Jake the tylenol with codeine every time he was allowed to have it. I know, maybe some think it’s overkill but I wasn’t about to let my little guy be in pain. I then started alternating the tylenol with codeine with regular tylenol. He seemed to be doing fine with that regimen. By the end of the first week at home, he was on only regular tylenol. For 2 weeks I did continue to give him regular tylenol before he went to bed at night, just to be sure. By his 3rd week post-surgery he was getting nothing and fine.

I highly recommend a bath like this (cost about $30), towel underneath for extra cushion, my hands are free to really work on getting his head clean, he also enjoys the water

a little pillow for his head on the changing table...

Jake’s “major” issue at home was constipation. I know, lovely topic. We had a follow up appointment the week we came home from the hospital with our regular pediatrician. We had been sent home from the hospital with miralax for Jake because he was having this issue in the hospital too (probably a side effect from the narcotics). Anyway, Jake has never been interested in bottles, so he simply wouldn’t take the miralax at all. He was spitting up (sometimes throwing up) and he would arch his little back and just wiggle around ALL day and night. He wouldn’t typically fuss (as long as he was being held) but it was obvious something was bothering him. He’d go several days like this, then he’d have a major blow out and he was fine for a day. Then it would start again. Anyway, my pediatrician gave us a prescription for tylenol suppositories. Giving a suppository didn’t bother me at all (or Jake for that matter), it would stimulate him to go and he was able to get his pain medication (otherwise, he would throw it up so I didn’t know if he was fussy because of his stomach or because he was in pain). The suppositories were perfect because they helped with both issues. If you run into that wall-that’s just a thought. It’ll freak you out the first time you give one, but it slips in so easily you’ll quickly realize it isn’t a big deal at all. I still bought gloves and some vaseline-just a tad bit of vaseline (or lubricant) on the tip of the suppository, the pointy side goes in first and it should slip right in.

about 9 days after surgery he was able to hold himself up in the exersaucer again for a few minutes

It was true what I had been told prior to surgery: Jake reverted back to the time he was a newborn. Seriously, it was just like I was bringing him home from the hospital after birth. He pretty much just wanted to sleep, but it was always in little 1 to 2 hour catnap chunks. All day, all night. We were so buzzed and ready to get a good nights sleep when we got home, but that simply was NOT going to happen. Jake really wanted to be held. I spent many nights and days simply walking around with him in my zombie like state. His surgery was December 8 and it was around January 10 before he started sleeping through the night. Before surgery he was sleeping from about 9pm-7am. January 10th week he was sleeping about 11p-6a. Before that, he literally was up every 1-2 hours all night. It was rough. I’m not going to lie. Just remember that eventually they will get back into their schedule. Please surround yourself with people you are comfortable with that can help you-you will need it and you will want it. My parents came and a few nights I actually pumped and left them with bottles and I went and slept for most of the night in peace. It was simply a necessity. I have 3 other kids, so during the day I was typically up and being mom to them as well, so it was wearing to then be up all night. Just be sure to take breaks when you need it….it is imperative.

smiles like this make all the late nights worthwhile! πŸ™‚

Another tip: accept all help that is offered. We got home Sunday late afternoon and we had stopped for dinner on the way home, so we ate that night. It was late Monday afternoon when Mark very kindly told me that we had no food in the house (before surgery we had gone to NC for 3 weeks, so we hadn’t been home for about a month). Up until this point, Mark would pretty much tell me to go eat, and I’d go eat. I was so “in the zone” taking care of Jake, taking care of anyone else was the last thing on my mind. Mark ran to the grocery store and got a few items so we’d have the basics in the house (and the treats that he wanted). I don’t think I could have even gone to the store and bought anything really-my mind was consumed. My wonderful friends and church family so graciously provided us with meals for what seemed like forever. I’m not even kidding-I think it was like 10 days at least. It seems like such a simple thing, but let me tell you, I don’t think my family would have eaten anything besides fast food or frozen pizza had it not been for those awesome meals. I was so tired that I literally did things from one hour to the next. To cook a meal I would of had to think through what ingredients I needed, gone to the store, and then prepared it. Forget actually taking the brain power to do all of that, I was pretty much holding Jake at all times (not a chance I was going to put him down if he was going to fuss-as long as I held him he didn’t cry, so that was fine by me). So, if you have a friend or family member getting ready to go through this-please take them a meal. If you are the parent going through this, accept the meal. I don’t like accepting help, but there are times that it is simply what you have to do…and this is one of those times. Let me say again-THANK YOU to all of those who did come by and bring us meals….it was so very appreciated!!!

THANK YOU GRAMMY AND PAPA!!!! Just an everyday moment!

I know this is yet another ridiculously LONG blog (so long I’m sure my hubby won’t even be able to make it to the end) but let me throw out one more thing. Make sure you buy pjs and shirts that don’t go over the head for your baby. Even 6 weeks out, Jake is still fairly sensitive to me pulling shirts over his head. For sure, the first few weeks they are so swollen and sensitive, you’ll need button up and zip up type clothes. It can be more challenging to find those things than you might at first think too! If there is a Carters nearby, they had everything I needed…even onesies that were snap up.

16 days post-op, Christmas eve; big brother Blake and Papa decide to introduce Jake to the joy of Hershey's chocolate....oh Papa!

I truly hope this gave you some small insight into what life was like for the first few weeks at home after surgery. Over the next week I hope to go back and blog about the actual hospital experience, but I had a request for this specific info so I thought I’d do it first. If you can think of ANY questions or if I left something out, just drop me a line and I’d be more than happy to help out and share with you! πŸ™‚

Praise the Lord Grammy has the touch! Whew!!!

Hang in there, your baby will soon be back to smiling!

 

Coming Unglued! January 4, 2011

Literally!!!

 

Ok, so it’s not what it seems at all. This is a post that is meant to be more of an educational moment for those parents either getting ready for surgery or those who recently had surgery. To catch you up to speed, Jake had a CVR (cranial vault reconstruction) at Children’s Hospital Los Angeles on December 8, 2010. Dr. Urata (Plastic Surgeon) and Dr. McComb (Neurosurgeon) performed the surgery. I really need to blog on our entire stay at CHLA and all of my helpful tips and hints for that part of the journey. Hhhmm, what can I say-I’m busy taking care of my post-op baby and homeschooling the 2 oldest and attempting to keep the 4 year old out of the older ones hair and entertained. Not a whole lot of time to blog around this house right now. As I type, Jake is laying at my feet in the floor entertaining himself (this isn’t going to last long) and I can hear the other 3 kids fighting sleep (um, each other) in the room next door as they attempt to go to bed.

Jake and Dr. Urata today

 

Ok, I digressed. Today-January 3 (child number 2 turned 8 today-Happy Birthday Emily Rose! πŸ™‚ ) we had our follow up appointment with Dr. Urata at CHLA. I need to blog about my entire CHLA/Dr. Urata/Dr. McComb experience at some point as well. Whew. Anyway, Jake was hilarious during our appointment. He was putting on a show-anything to get smiles from those around him (even if you’re the surgeon who sliced and diced his head up apparently). He is such a sweet natured, happy baby. Dr. Urata gave us the “thumbs up”-all’s looking well report. The one issue that we were having is that all across Jake’s incision are clumps of glue (big, nasty clumps that are all entwined with the ends of his sutures). He had glue literally throughout all of his remaining hair, all over the incision, in his ears, behind his ears, on his ears, and onto his cheeks. Glue was everywhere. The only discharge instructions given (given by a nurse who had never had a patient with this surgery or who knew answers to any questions I might add) were to not submerge his head in water, don’t go to the beach (um, it’s December???), and to wash his incision daily with soap and water. When I asked to speak to the surgeon before going home, Dr. Fedora (resident? I think thats what he is?) came in and said that yeah, just gently wash the incision with soap and water every day and the glue and sutures will eventually dissolve on their own and all will be well. I followed those instructions and I also took a bottle of adhesive remover (I’ll explain that later) and with a q-tip I’d clean up Jake’s ears, face and hair while I held him and he slept. I did everywhere except the actual incision line and suture area-I left the glue alone in those places.

 

Let me tell you, Jake LOVES bath time. He has since he was born. After surgery, he continued to enjoy bath time except when I washed his hair. I was extremely gentle and he would just cry even when I slowly poured the water over his head. I had another mom tell me that I needed to make sure I scrubbed his head after surgery, but honestly-I just failed miserably at this part. Jake handled the surgery and recovery so well-I hated to make him cry. I did wash his head gently every day, but that was it. When we had our follow up with the neurosurgeon back on December 21 he told me that when I bathed Jake I just needed to use a wash cloth to gently wash his hair and that would help some of the glue dissolve. I did just that, but as I started to say earlier-the glue clumps as of this morning were still all along the suture line. So, Dr. Urata explained that I needed to take a wash cloth and very roughly scrub Jake’s head until the glue was gone. He went on to explain that that if the glue remained, a scab would form underneath but it wouldn’t have oxygen be able to get to it for it to heal in a healthy manner and essentially, it would take forever for the wound to heal and it could make the scar even worse. Yikes! I wasn’t so sure about just flat out scrubbing though. Yuck! So, when the nurse came in I asked her opinion on how to get the glue out. She told me that the nurses trick in the clinic when it was there task to “de-glue” a child was to use fingernail polish remover. What? I guess the acetone in the nail polish remover is an excellent adhesive remover. Jake’s incision is already healed and closed so no worries about it hurting. So, that was her suggestion. I really, really wish I had taken good “before” pics of all the glue along Jake’s incision. Anyway, Dr. Urata did warn me that as I removed the glue the incision would get red and there should be some scabbing, so don’t worry when this occurred. Just get the glue off.

 

Pure acetone from a beauty supply store

 

Well, I accidently bought pure acetone from a beauty supply store several months ago. So, when I got home my dad held Jake and I took the acetone, soaked a cotton ball and started gently rubbing it over the glue. Jake was NOT happy to say the least (Papa was not enjoying his job either-he likes to be the good guy!) I would work on an area or two and then I would stop for awhile and we would play with Jake. I’d then work on it again for a few minutes, and then give him another break. He cried so much (only when I working on it-as soon as I’d stop, he’d stop crying) I was worried that it did indeed hurt. The area was also turning red and irritated looking already (and the glue was very slow at coming off, this was going to be a BIG job). Mark (Jake’s dad, my husband) had to get 5 stitches in his shin the end of November (long, hilarious story there) so I joking asked if we could try out the acetone on his would so we’d know if it hurt. Mark immediately said, “yeah, let’s do it!” I quickly soaked a cotton ball of acetone and gave it to him and he lathered on his scabbing over shin and said it didn’t hurt at all. So, I’m thinking it doesn’t/didn’t actually burn at this point.

 

Adhesive remover from hospital

I finally stopped with the acetone because my heart couldn’t take anymore. 😦 Jake loves his bath, so I decided a nice warm bath would help him forget what I had just done to him! So, I put him in his tub and he had a grand time. So grand that I decided to give another de-glueing tactic a try. When we were in the hospital one of the nurses gave me a bottle of adhesive remover so that I would have it at the bedside when it was time to remove Jake’s surgical bandage (it was tape and it was all in his hair). The neurosurgeon (after talking to me and realizing I wasn’t going to allow him to yank the tape off) brought in his own bottle of adhesive remover. So, I brought the bottle the nurse had brought into the room home with us. I already had some q-tips and some sterile gauze that I bought at Target at home. This is the bottle of stuff that I had used to clean off the glue from his hair and face already. So, I soaked a gauze pad and while I sang “if you’re happy and you know it” to Jake I gently worked on the glue some more. Unbelievable, I was able to distract him with songs and his rubber duck enough to let me really work on the glue with some gauze and then some q-tips. I it’s good to soak the whole area first and then start at one section and twirl the soaked q-tip under the glue. We are not done, but I did get a large portion of glue off his incision. Honestly, the incision is really grossing me out a lot now too. Ya know how you get a little hang nail and it gets caught on everything and hurts? Well, it looks like Jake has hundreds of little hang nails now all across his head. It doesn’t seem to be bothering him though. I’m sure the pics don’t do it justice but basically a lot of the sutures have dissolved and I can see the wholes were the suture was at one point. He has a few scabbed over areas too. Also, the ends of the suture stick out really far and look like they could get hung on everything. Yuck. It also looks red and irritated (Dr. Urata told me to expect that though, so I’m not too worried).

pieces of glue on the q-tips

adhesive remover from hospital

 

 

 

 

 

 

 

 

I really intended for this to be a quick “how to” or “what’s to come” for those parents getting ready to go on this journey but, as always, I’ve seemed to ramble on and on (this is what happens when I’m tired and trying to hurry-sorry!) By all means is this supposed to substitute for instructions your doctor gives to you I am simply showing you what has happened in our journey and what may come of your journey. I don’t actually think I would have done anything differently concerning my son’s incision to be honest. It was so sensitive and it needed to heal without me picking at Β or scrubbing the glue. I feel that his incision had adequate time to heal and close and now I can safely work to get the glue off. I would highly recommend asking the nursing staff at your hospital if they have any adhesive remover-it came in super handy when they were ready to take out Jake’s IVs as well by the way. They taped an IV to each leg and he had surgical tape from his toes all the way to his knees it seemed. It’s the kind of tape that pulls and hurts when you take it off. So, when it was time to take out IVs I sat there for 20 minutes before hand and soaked the tape in this adhesive remover, so when the nurse was ready-it literally just slipped right off Jake and didn’t even wake him up! It was awesome. Try to pocket the stuff to have it at home in case you run into the same glue issues we ran into. It’s been a huge help. If you have time, maybe go ahead and get some straight acetone to have ready as well. Just some thoughts. Good luck and God bless on your journey! πŸ™‚ Again-sorry this is so long! If you ever have questions-just shoot me an email, I’m more than willing to share whatever info I have!

this is after first round of de-glueing...it looks much better here!

 

 

Silent Night, Holy Night December 24, 2010

Filed under: Uncategorized — Beth @ 8:54 pm

Since arriving home Jake has done beautifully. Far better than I could ever have prayed for (why is it that when prayers are answered, we’re shocked? Or, why is it that we don’t think to ask our heavenly Father for the very best?) Anyway, Jake has been a sweet, cuddly, happy boy-as though nothing had happened to him.

Spoiling his Grammy

 

Spoiling his Papa

 

Loving the teddy bear Robby gave him for Christmas

 

However, as of this past Sunday, he’s been “off.” I know he’s teething, he’s fighting a small cold, he’s ready to eat more than just nursing (though we can’t seem to find any baby food that he likes….except the chocolate Papa keeps giving him!). The problem has been that at night (since surgery) that is when he wakes up to play. Now, he simply wakes up and fusses. Grammy took a night to let me get a few hours of interrupted sleep. The next night, Papa took Jake for a shift. The next night, Mark took a turn. In the end, he really wants mommy. Is he simply over tired? Does he have a headache? Is it just teething? Is he hungry? I have always “spoiled” my babies, rocking them when they want to be rocked, walking the halls when they want to walk. There always comes to a time when I finally realize that they need to learn the art of comforting themselves, and I put them in their bed (and go to a part of the house where I can’t hear them-or else I’ll revert to the aforementioned techniques). I believe Jake is at that point. However, after such a huge surgery and ordeal-I can’t bear to put him down and make him cry. Of course, I’m at the point, I need to for my sanity.

 

So, two nights ago I thought “Praise the Lord, he’s finally figured it out!!!” I was singing

“Silent Night, Holy Night!!!”

A shining Christmas tree, and an empty exersaucer...

“All is calm, ”

No need for the rocking chair!

“All is bright!”

 

A full "mantel", a full heart for me! ❀

“Round yon virgin, mother and child…”

 

Ok, that’s where the similarities of the song ended…and so did my peaceful night! Jake awoke and started fussing. So, why exactly did I run around the house taking pictures of my quiet house instead of sleeping while Jake was sleeping???? Aahhh, I guess I’m doing it to myself now! πŸ™‚ Of course, him being up at night, means that he’s peaceful during the day….

 

Oh Jake, I love you so much bud!

Well, tonight, Β I plan to tell him the story of “Twas the night before Christmas and all through the house, not a creature was stirring, not even a mouse!” I’m praying he’ll take some pointers and go to sleep!

 

 

At home update December 19, 2010

Filed under: Uncategorized — Beth @ 6:18 am
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Well, I did fairly well updating facebook and the blog while we were in the hospital and when we first got home. Since then, the other 3 older kids (Blake-11, Emily-7, and Robby-4) have come home along with Grammy and Papa (my parents) and for some reason, life has become a bit busier (in a good way)! :)I’ve had a lot of inquiries on how Jake is doing now, so now that everyone is in bed (excluding me, Jake, and Grammy) Grammy is entertaining Jake so that I can get a quick update posted!

We arrived home last Sunday (not even a clue what the date was then or what it is now) evening. We were ready to come home but, of course, a bit nervous to how life would be without monitors telling us how Jake was doing or IVs ready for drugs if need be. I did go ahead and give him Tylenol with Codeine every chance he could have it for the first 24 hours and then I have slowly tapered it down throughout the week. As of today, Jake had one dose of regular infants tylenol (and I honestly believe most of his discomfort right now is from teething). If I wasn’t here seeing it for myself I wouldn’t believe how well Jake is doing. He is his normal, very happy, very active, very talkative, very smiley little self…just with a big scar across his head. Honestly, my biggest complaint right now is that he has reverted to his newborn self-he wants to take lots of catnaps throughout the day (most of these are on the shoulder of someone, heaven forbid we put him in his bed) and then he wants to play all night. So, needless to say, I’m not getting the most sleep these days. I am so thankful for my parents who are here to help, the kids who have been helpful, Mark who is helping out, and so many friends and neighbors who have been bringing meals, bread, and cookies. It is evident that lots of prayers have been said and so much love has been just poured out onto our family and I cannot say “thank you” enough! Here are a few shots of Jake day by day…

 

First bath, Jake's not so sure about this

Jake has ALWAYS loved bath time! From the beginning, when I would put him in the bath he would start kicking as hard as he can and he just laughs and giggles-it doesn’t matter if water runs in his face or what I do-he just loves his bath. Since surgery, he enjoys his bath and has a great time, until I pour water on his head and then he starts crying. It apparently bothers him and so I have been making sure it gets done everyday but I have been very quick about it. I really don’t want him to start hating bath time. Tonight, Saturday night, was the first bath that he has had since surgery that he didn’t cry when I washed his hair-YEAH!

Tuesday side view

Thursday-Getting ready to go out in the cold for our first doc appointment...thanks Aunt Mandy for the awesome hat!!

Friday-at midnight (arg!)-finally comfortable bouncing in his exersaucer...I'm thrilled you love it Jake, but really, how about during the day??

Saturday, Jake's side view-this side doesn't look as smooth as the other side, but they both look pretty decent

Well, that was just a few pictures to show how truly well Jake is doing. He’s super happy most of the time-had a few issues with constipation and throwing up-but mostly, he’s great (especially late at night). πŸ™‚ Each day the swelling goes down a little bit more and he seems to be a little more comfortable. Thanks again for all of the prayers, support, and love!

 

Home Sweet Home!!! December 13, 2010

Filed under: Uncategorized — Beth @ 3:11 am
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Well, we are finally home!!! I can’t even begin to describe the relief we felt as we pulled into our driveway and realized, “it’s over!” “It’s over” is actually a bit of a misnomer since we still have recovery time to “look forward to.” The cul-de-sac kids (all of the kids in our cul-de-sac) decorated the front of the house with posters to welcome Jake home-that was a trigger to release many pent up tears that I’ve been holding back! Thanks guys! πŸ˜‰ Jake has successfully made it through surgery and the hospital stay, so we are over the moon happy! Mark and I are both pretty “buzzed” on our lack of sleep over the last week. I honestly think that pure adrenaline (and God’s extremely sufficient grace) is what brought us through the last 5 long days. I’m so looking forward to crawling into my comfortable bed for a good night’s sleep…well, for a good few hours sleep hopefully! πŸ™‚ We expect Jake to still get up all through the night as he will still be uncomfortable and need his medications. We also have numerous appointments with all of the follow-up docs over the next several weeks. Most excitedly, Grammy and Papa fly in on Tuesday with our 3 older kids! I’ve missed those little ones more than words can say, so I can’t wait to see them!!! I think they’ve missed mom and dad a ton too, but they are mostly excited to check on their little brother for themselves!

Dr. Fedora (one of the resident docs for the neurosurgery team) came by this morning and removed Jake’s bandage. Whew. His incision looks quite gruesome and it’s going to take a little bit of getting used to! When snuggling with Jake now and my chin or cheek touches that part of his head the incoming hair is scratchy and I’m just scared to death I’m going to hurt the guy! Ouch! He doesn’t seem to notice or mind it at all. He’s desperately in need of a good shampoo and bath and I’m anxious to give it to him! However, he’s sleeping soundly now so that’ll be a task for later!

Side view, notice Jake smiling and having a good ol' time!

I counted 51 stitches (3 triangles worth) before I gave up on it..

He was so happy to play with his chicky that his brother Robby gave him when he was born! πŸ™‚

Just loving life and all this attention!

"Mom, must you keep taking my picture??" This was probably the first time Jake didn't cry when I put him in his carseat! He must have known we were going home!

Sitting in front of the Christmas tree at home so he could see the lights first thing when he wakes up! He LOVES the lights on the tree! Welcome home my Jake, I'll put a bow on your head Christmas morning as this is the best Christmas gift you're receiving this year! πŸ˜‰

 

Hospital Stay December 12, 2010

Filed under: Uncategorized — Beth @ 4:56 pm

Waiting for surgery

Before side view

Ok, so I have been terrible about blogging in the hospital! I’ve made sure to post pics on facebook consistently but that was about the extent of my computer time over the past few days. I’ve been much more interested in staring at my little guy and holding him! I’ve had a few requests for updates from friends who aren’t on facebook and that made me realize, “oh shoot, I guess I should blog for everyone else too!” So, I’m going to make this one quick and to the point (as we sit here waiting for the docs to come and discharge us home). Over the next few days I may possibly give more detailed accounts of the hospital, staff, and doctors (for those that are reading who are getting ready to face this same craniosynostosis journey). For now, this is just a quick-how did Jake do update!

 

Wednesday: Jake arrived in the ICU from the OR around 12:30 He slept peacefully all day. He would open his eyes and look around a few times but then would quickly doze back off. Wednesday night right before midnight I was able to hold him for the first time. I’m not sure who was more comforted by that-me or him?! πŸ™‚ He took a bottle that night as well with no problems.

first post-op pic taken

view of his new, round head

mom holding him bedside in ICU

Thursday Day 1 post-op: Jake slept peacefully pretty much all day and he was swollen, but could still peek out of his eyes. He really looked so much better than I expected and he did better than I could have asked or prayed for! He was even able to start nursing-as long as I had lots of pillows to help prop him up (his head is soooo heavy) We were in ICU until Thursday night around 6pm.

Jake and Teddy resting peacefully Thursday

Jake slept on his trip from ICU to the regular floor

mom and dad helping Jake find his hand to offer comfort as the swelling caused his eyes to swell shut

face was really beginning to get swollen late Thursday night

Friday, Day 2 post-op: Jake swelled up to the point it looked like he was going to pop! He nursed in the morning around 6am and then he was just uncomfortable all day. He had a few moments of crying, but it never lasted long. He would try to open his eyes (you could see his eyeballs moving and his eyebrows would go up and down) but when he couldn’t he would get frustrated. He didn’t eat the rest of the day. That morning the doc discontinued all morphine and only ordered tylenol for pain. Jake’s heart rate was in the 150s pretty much all day (they want him to stay 120s-130s). So, even when he wasn’t fussing, it was obvious that something was bothering him. Late afternoon he wanted to eat again, so I nursed him for quite a bit. He was super squirmy afterwards. He ended up throwing it all up. He also threw up the tylenol that he had received for pain. Several suppositories later he finally had a bowel movement (first since surgery). Doc went ahead and ordered for him to get a little morphine as well.

Yikes! Where's Jake???

He was able to get some rest on Friday

Mommy comforting Jake after he threw up. No worries-he CAN breathe! πŸ™‚

 

Saturday, Day 3 post-op: Jake had such an exhausting day and night yesterday that I think he’s just pooped today! I can’t even believe how much the swelling went down literally just overnight. He seems to feel much better too (when he’s awake). He’s able to open both eyes, though the right eye tends to swell more because of the way he rests in bed and in my arms. When Mark was talking to him Jake even started smiling! It was like, “Oh yeah, there’s the Jake we know!” It’s been so weird to look at this little guy who truly hasn’t even looked like our baby! Once the baby opens their eyes (after the swelling) that is typically the time they send the baby home (can’t believe it is so soon!) They’ve opted to keep Jake for at least another day so we can figure out his heart rate issue and his intake deal. They started his day by going ahead and giving him one more does of morphine. He has been nursing in small amounts today and he did tolerate taking a dose of tylenol with codeine around lunchtime. They also gave him more IV fluids because dehydration can cause in increase in heart rate as well. I believe if he has no problems nursing today and taking his oral pain medications without throwing up then we should be able to head home tomorrow. I’m honestly comfortable at this point moving him around, holding him and in general taking care of him so I think I’ll be ok coming home now. I just want to make sure that he will be able to tolerate his pain medication before we do come home. They haven’t taken the dressing off either (they typically do that the night before or the morning of sending him home), so I’ll be anxious to see how that looks.
Mark and I are both holding up well. It has been an emotional ride, to say the least, but we are both so amazed to see how mightily God’s hand has worked in this whole ordeal. Jake’s surgery went smoothly and his recovery has been more peaceful than we could have hoped! Jake has always been such a relaxed and happy little guy and he seems to be continuing with that even after surgery! What a trooper!

By Saturday the swelling was beginning to go back down!

Eyes are peeking open! First captured smile! Yeah!!!!

Jake started saying 'mama' for the first time! Talk about melting my heart!!

Sunday, post-op day 4: Well, Jake did well throughout the night. He is nursing for about 5-10 minutes at a time; overall he just isn’t hungry. He was started back on IV fluids through the night. He was getting 30ml/hour and when he was resting in bed his heart rate would come down as low as 110. By this morning they backed his fluids down to 15ml/hour and his heart rate is back up to 150s-160s. He is taking tylenol with codeine by mouth and it seems to hold him for about 4.5 hours (they have it scheduled for every 6 hours). So, the pediatrician just came through and everyone is on the fence about whether or not we’ll be coming home today or tomorrow. Basically, they don’t want to send him home if he is dehydrated (he apparently did well when he was on the higher amounts of fluids, so they may want to just hydrate him all day before he goes home). At this point, we’re waiting for the neurosurgeon team to do rounds (I’m sure they’ll be fine with sending us home-they aren’t worried about such “petty” things as dehydration and pain control) and then the floor pediatrician team will determine what is best. Mark and I are anxious to get home and we feel comfortable doing so. However, we are more than willing to simply do whatever the docs think is best. Jake is doing really well. He’s playing, smiling, cooing, and saying “mamamama” when he wants to be picked up! πŸ™‚ Of course, that is working for him everytime!

Jake with all of his toys!

Mark's first time holding Jake on Sunday morning

 

Thanks again for all of the continued support and prayers! God has been so good to us and we could not have asked or planned for a better recovery for Jake!