Wednesday, June 30, 2010

Shunt surgery is scheduled

Doug and I took Joshua to his neurosurgery appt this morning. The doctor examined him and did another ultrasound and felt that at this time we need to move forward with shunt surgery. The doctor showed us how Joshua's ventricles have increased significantly in the last 5 days and at that rate it would not be safe to continue waiting. We will take Joshua to Children's Hospital of Orange County tomorrow morning at 6 am for a 7:30 am surgery. The doctor says Joshua will spend one night at the hospital and should come home on Friday afternoon. Now, we just pray for a successful and safe operation and a quick recovery.

Monday, June 28, 2010

Joshua at home!

Joshua has been adjusting well to being at home. He has settled into a pretty nice routine. He eats about three times during the night and sleeps in between in his bassinet. During the day we keep him in the living room with us and he really enjoys being in his bouncer and swing. He does a good job at dealing with all the chaos around him. Between Abby screaming and the dogs barking I am surprised at the amount of napping he gets in, yet somehow he manages.

Big sister Abby is getting bigger by the minute. She now has a fully loaded vocabulary that includes phrases such as "thank you", "love you daddy/mommy", and "hi baby". She loves to sing and read books and she has been showing interest in potty training. She certainly helps taking care of her brother and understands the importance of always having a pacifier nearby (since she still is attached to hers).

Saturday, June 26, 2010

Joshua's homecoming!

Our sweet little boy was discharged from the hospital on Wednesday after Doug and I consulted with the neurosurgeon and decided to not go forward with the shunt surgery. We met with the neurosurgeon at CHOC on Friday morning and he did another Ultrasound of Joshua's head. It appears the ventricles are continuing to grow which means Joshua's hydrocephalus is increasing. He is going to see Joshua again in 5 days and do another scan, but at this point he is giving us a 50/50 chance that Joshua will still need a shunt. We expected this to be the case and yet still feel confident in our decision to wait on the surgery. Waiting allows Joshua to get bigger and stronger in order to undergo another procedure.

As for Joshua, despite his hydro, he is doing great at home. He is eating well, sleeping okay and awake for a good portion during the day. Big sister Abby loves HER baby and kisses him constantly.

Tuesday, June 22, 2010

To shunt or not to shunt?

Well this week has been another roller coaster of events. On Monday morning Joshua had a second ultrasound of his brain (this first was taken the morning before his back surgery). The ultrasound showed positive findings that his blood clot has begun breaking up and resolving, however it also revealed that his left ventricle in his brain had increased in size due to the hydrocephalus. The neurosurgeon recommended shunt surgery and scheduled it for tomorrow morning (Wednesday).

Doug and I agreed to the surgery at first but then decided that a second opinion would be great considering the seriousness and permanency of a shunt. We met with the board-certified pediatric neurosurgeon for CHOC (Children's Hospital of Orange County) today and after reviewing all of Joshia's diagnostic films he recommended that we hold off on shunt surgery and monitor by way of Ultrasound for a couple months since Joshua's hydrocephalus is not causing him any problems at this time and is minimal. He explained that babies are able to handle a certain degree of expansion of their ventricle without it causing them any harm. We will have Joshua's hydro monitored and see if his body corrects itself over the next couple months. Obviously, if his ventricles continue to increase then a shunt may be needed, but it is possible that they could decrease on their own and that a shunt may not be needed.

As a result of this new decision, the doctors at Miller Children's Hospital have informed us that Joshua will be discharged tomorrow morning. We are thrilled and can't wait to bring our son home!

Sunday, June 20, 2010

Weekend #2 in the books

We had a couple good visits with Joshua this weekend. He was moved to a super duper area in Miller's called the Pavilion. It is located in the new wing which was remodeled in 2008, so everything is brand new and provides a lot more space for us during our visits.

The reason why Joshua was moved is a story of its own. Thursday night, Tawny received a call from a case worker that a nurse working a shift in Joshua's NICU room had been exposed to chicken pox and they needed to (as a precaution) administer an antibiotic and isolate exposed infants for 3 1/2 weeks. The way she said it at first made us think a 3 1/2 week stay would be required - that freaked us out, but she clarified her point that any ongoing plans to be discharged were still possible, regardless of the exposure. Long story short, we are glad to be in the Pavilion and were definitely caught by surprise hearing about the chicken pox. Just another incident of needing to roll with the punches and try to stay positive during our first experiences with Joshua.

Monday figures to be a pivotal day. Joshua will have a brain ultrasound performed in the morning, where later our pediatric neurosurgeon will determine whether he wants to insert a shunt during this hospital stay or later. If he doesn't decide to install a shunt now, we are optimistic that Joshua could be discharged by Tuesday :). If the shunt surgery is to be performed now, then it would need to be scheduled and we would probably have a 2-3 day recovery time following. Our feelings are mixed; we want Joshua home ASAP, but obviously want him home safely and not be concerned about the possibility of an emergency shunt surgery because it wasn't installed during this stay. On the other hand, if it's genuinely not needed right away, then we'd love him here with us at home and diligently cross this bridge when necessary.

As it has been the case and will continue to be so, we pray that the various medical experts we so desperately rely on, are graced with the clarity of mind and soundness of judgment to provide us with their best work possible as our journey with Joshua starts its second full week.

Thursday, June 17, 2010

A better day

Today we had a chance to speak with the neurosurgeon after he reviewed the second MRI results. Dr. Javahery gave us the good news that they did not see a tumor in the scan. The baby still has a blood clot, but at this time we do not know what has caused it to occur. We are not in the clear yet because a tumor could appear as the baby grows older (maybe it just isn't visible yet), however it is very good that they are not seeing one at this time. They will re-scan in a couple months to see if anything shows up. If it doesn't then this may just be a rare occurrence where a blood clot occurs but dr's are unable to identify why. We hope that is the case.

Today's news has certainly brought a sense of relief to Doug and me. We've prayed long and hard the last couple nights for God to protect and heal our little boy and it appears today that he did just that.

Wednesday, June 16, 2010

Doug and I had a chance to meet with the neurosurgeon again today and he told us he plans on doing the shunt surgery on Monday. He thinks there is a good chance we can take Joshua home within a day or two following surgery. This gives us something great to look forward to next week.

As for the tumor issue, we are still waiting on more information. The second MRI with contrast was taken today and we should know more tomorrow after we get a chance to speak to the surgeon. We are full of hope and prayers tonight that the MRI brings good news, not bad. Unfortunately, Dr Javahery has asked us to prepare for the possibility of not knowing one way or the other since the tumor (if there) may be hard to see due to the blood clot.

Regardless of all that is going on, Doug and I feel so so so very blessed to have two beautiful children. Abigail was a terrific beginning to our story and Joshua completes it. We love him and we know God will protect him through this journey.

The photos below were taken today....

Tuesday, June 15, 2010

Sad Day

We got a call from a neurosurgeon this evening confirming that Joshua does have hydrocephalus and will definitely need a shunt. This we expected, as it is usually experienced with spina bifida. The doctor hasn't decided yet when the shunt surgery will take place. It may be during this hospital stay or it may be in a couple months when Joshua is stronger.

The blood clot issue has me feeling very defeated at this moment in time. MRI scan came back and doctor is concerned that it is not a "conventional blood clot" seen in infants. He has concerns and thinks it may be caused by a brain tumor. He ordered a second MRI with contrast to help get a clearer image of the area and see if we can tell at this point if it is a brain tumor. If the MRI comes back positive Joshua will require surgery but the doctor will wait until he is a few months older and stronger to undergo that type of procedure.

I feel broken down inside and so sad for my sweet little boy who has only been in this world such a short while and is already facing so many challenges.

Monday, June 14, 2010

Joshua's MRI day

Doug and I left the hospital yesterday and it was great to be home last night and see Abigail. She is so excited about her baby brother and recognizes him in pictures. We went back to the hospital today and spent the day at Joshua's bedside.

Joshua had a blood transfusion today due to having a very low red blood cell count (severely anemic). We were very fortunate to have had a great turnout of family members who donated blood on Friday so that we didn't have to rely on the public blood bank. Tonight he is having an MRI to get more info on the frontal lobe blood clot. We are hoping and praying for good news tomorrow. The MRI will also tell if he has developed hydrocephalus and will require shunt surgery.

Saturday, June 12, 2010

Today was a good day for Joshua. He was moved into a "less critical care" NICU and was able to begin feeding. He isn't quite getting it yet but I'm sure with more time he will become a pro! We were able to hold him each time we visited and he enjoyed every moment. As you can see from the photos above, his bandages were taken off of his surgery site for the next stage in the healing process. It is quite a scar that little boy is going to have and I'm sure later on in life he'll find some cool story to tell the girls like he was bitten by a shark while surfing off the coast of Australia. Mom and Dad will go along with it if it makes him happy =)

A new day!

My precious little baby has finally come off of the ventilator that was breathing for him. This is great news and means he is one step closer to eating and being held. He is still pretty sleepy but the nurses told me that he did open his eyes at one point during the night. Today he should get a visit from the urologist to access his bladder functioning. We are still waiting to know more about the brain mass in his frontal lobes. CT scan confirmed its location and that it appears to be blood but dr's have ordered an MRI to for more confirmation. If it is blood then it should observe back into the body (we hope!).

Friday, June 11, 2010

Joshua's Update

Our precious baby is still in recovery and still heavily sedated. Latest update is the Ultrasound revealed a blood clot in the frontal lobe of his brain. We don't know how serious this is at this time and are waiting for the neurosurgeon to come talk with us. The neonatalogist informed us that in some cases it will go away on it's own and just needs to be observed and in other cases they can go in and remove it. We should know more by the end of the day. We are, of course, hoping it's a minor thing with no long lasting effects. Joshua is being very strong through all of this, his vitals are still great, he's still intubated but they are weaning him off slowly.

Joshua after surgery

Joshua's surgery!

Joshua's surgery went well. He was in the operating room for about 3 hrs and he is still pretty heavily sedated today. We are hoping they will take out the breathing tube today (June 11) so we can hold and feed him. Doctor's installed a Pick Line (cental IV) early this morning due to difficulty with finding his veins. This should make it much easier for him with less poking should he require another surgery or more medications. They are cathing him every three hrs as it appears he is not able to fully empty his bladder. All of this we were pretty much expecting so we can say that so far things are going smoothing with no new surprises. Our little boy is so strong and so precious. We are blessed!

Thursday, June 10, 2010

Joshua's Arrival!

Well, we didn't make it up to San Francisco. Baby Joshua decided to have other plans and arrive early. He was born yesterday, June 9 at 6:36 p.m., weighing 6 lbs 9 oz and measuring 21.5 inches in length. We are so excited and happy to finally have him here.

Tawny is doing well and we've enjoyed visiting with Joshua in the NICU. His surgery is scheduled for today around 1 p.m. and the doctors will monitor him for hydrocephalus over the next several days.

Everything else is going as expected so far, except for the fact that we are doing all of this down in SoCal instead of San Francisco!