Archive for August, 2007

Inch-Stones

A while ago, I came across the term ‘inch-stones.’ While most parents focus on their children meeting standard ‘milestones’ of development, we like to focus on the ‘inch-stones’ or little accomplishments as well. For someone who had brain surgery less than 3 weeks ago, Finn is doing fabulously! He has no signs of regression and really seems to be making some progress in terms of his burgeoning ability to sit unassisted. He is still quite wobbly but is definitely able to be upright for longer periods of time before he topples over. He is frequently in an upright position throughout the day now. We can tell how much he has been enjoying this! He spends much time sitting at his musical ‘activity table’ and playing with toys in his hands while sitting. These are great inch stone accomplishments!

We had an excellent appointment last with Finn’s new Developmental Pediatrician at our Children’s Hospital. He was very encouraging and optimistic. He reminded us that no one could predict what the future would be for Finn, but he also highlighted Finn’s current strengths and again reminded us that baby’s brains are resilient. He commented on how social Finn was and cognitively aware he seemed. Overall, it was a great meeting and we’ll meet with this doctor again in about 5 months. In the meantime we’ll continue to see Finn’s regular pediatrician for well-baby visits; we’ll see his ophthalmologist at about a year; and we’ll continue going to physical therapy every two weeks or so.

A few new pictures have been added to the gallery. We’ll add more as we can. And we’ll try to get up a post once or twice month as things progress for Finn. Again, your ongoing prayers and thoughts mean so much! Thank you!

Home Sweet Home!

A little over a week ago as we headed out the door for our trip to Phoenix, I made a promise to my little boy. I held him close and whispered to him that we’d bring him back home safe and sound. It was with great joy that yesterday this promise came true! We were originally scheduled to fly home on Thursday, but because Finn was doing so well, there was simply no reason to wait. We swung by the doctor’s office for an impromptu visit yesterday morning. The one neurosurgeon, whom we had met with several times, looked at Finn and us and asked with a smile what we were still doing in town. I quickly jumped on the phone after that and found out there was a flight to Seattle later that afternoon. While Olivia was downstairs in the hotel pool learning to swim (yes, she was really jumping in the pool and swimming!) with her daddy, my mom and I packed up. We were then whisked off to the airport by my wonderful Aunt and Uncle. Before we knew it we were in skies headed back home. Finn did fine on the flight, and stayed awake the whole time, as did his sister. He fussed a little towards the end, but overall he didn’t really seem to be in any significant pain or discomfort. This was really amazing to us considering he had a craniotomy less than a week ago!

We feel so fortunate for all the excellent care we received at the hospital. All of the doctors and the nurses (especially those in the PICU!) were just fabulous. We are so thankful too to all of you who supported us in our journey – from rides to and from the airport here and in Phoenix; to the thoughtful gifts, flowers, cards, meals, care packages, etc.; and we are especially grateful to my parents for their unwavering and incredibly generous support in ALL areas. They took such wonderful care of Olivia, and all of us really.

None of us know what the future holds for Finn, but we firmly remain so very optimistic. We anticipate that he will continue to heal and grow up to be an amazing human being. In so many ways, he already is! Thank you ALL AGAIN for your support and prayers. Keep ‘em coming, and we’ll do our best to post other updates as the days and weeks go on. There’s nothing in the world as sweet as a promise like this that comes true.

Bye Bye St. Joe’s!

The news keeps getting better and better . . .

During a second night in the PICU at St. Joe’s Hospital, Finn got some more rest and continued to nurse like a champ. Around 6:30am this morning one of Finn’s neurosurgeon’s came by. He checked Finn out, said he was looking great. He then turned to us and asked “Would you like to go home this morning?”. Jens and I almost fell over! After less than 48 hours after having a craniotomy our baby boy was going to be discharged from the hospital!

Sure enough around 11am we emerged into the hot, sunny Phoenix morning with one beautiful babe and our hearts lighter than air. We are mostly hanging out at the hotel and taking it easy, but it is so nice to be out of the hospital and one step closer to being home. Finn seems thrilled to be here. He’s got a bit of congestion and throat irritation related to being intibated during the anesthesia and of course he’s a tad bit on the tired side, but otherwise he’s been smiling and giggling a lot and rolling around!

We KNOW he is going to continue to heal and recover very well. We are watching him very closely of course and the hospital is just 3 blocks away in case we need to head in, but overall we think he should just continue to get better and better. We feel so incredibly blessed and like we have truly experienced a miracle. Thank you all again for being part of this amazing journey.

The BEST News Ever!

It’s been quite a day! We were hoping to have Finn’s angiogram done this morning but pediatric anesthesiologists are popular guys and we had to wait for a while until one was available. Finn wasn’t able to nurse from 4am onwards. Later in the morning we were told that he’d go in at 1pm. The time came and went. It was very difficult waiting. Finn was pretty uncomfortable, especially without nursing. They gave him morphine a couple of times which seemed to help a bit.

Finally, he went in at 2:40pm for the angiogram. We were told it would take about an hour. An hour came and went. Then another hour passed by. Next, we were told they were having trouble getting the ‘wire’ into the artery and that it could be another hour or two. Jens and I stayed so positive and focused again. It was hard to hear this but we knew we had to keep the faith that everything was going to be okay. I prayed and concentrated as much light and energy around Finn as I could. I never let my mind or heart waver. I KNEW he was going to be fine. About 45 minutes later he was out! He wasn’t in the best of moods, but he was awake and the procedure went very well after they were able to get the wire in. And the BEST news was that it looks like the AVM was removed in its entirety yesterday! The angiogram confirmed this. Jens and I wept with joy. (This was the first time I allowed myself to cry since we’ve been here – I wept in relief and thanks and happiness). We haven’t spoken with the neurosurgeons in person yet, but we were told this by the other doctors. To say we are elated is an extreme understatement. This is a joy unlike any other, only comparable to the day he was born.

We’ll be in the PICU for at least one more night and then a couple of nights on the regular pediatrics recovery floor. At this point we do NOT anticipate any more tests. If the angiogram had shown a residual part of the AVM still present, he was going to have to have a SECOND brain surgery on Monday. Obviously, this was not something we wanted Finn (or us) to have to go through again. We feel so incredibly blessed and fortunate. Thank you again to all of you who have held Finn so clearly in your prayers and thoughts – even if you have never even met him! We have been touched beyond words by this outpouring across the country and around the world.

Please continue sending love and prayers as he continues to heal and recover. Thank you. Thank you. Thank you. And ‘congratulations’ to our courageous and amazing little Finn!

A few new pictures are now in the Phoenix Gallery.

Finn’s craniotomy (a.k.a. brain surgery for those of you who haven’t had the pleasure of ever having to know this word) is in the bag!

Where to start?! Well, first off we want to say that overall the surgery went very well and according to plan. All your prayers and wonderful thoughts worked! We had been picturing one of the surgeons coming out from the operating room and saying it had gone “perfectly” – and that was the exact word he used! We almost started jumping for joy. Well, actually, I think we were hoping off the ground a bit and hugging each other.

The day seemed to carry on FOREVER. We felt like two lost puppies wondering around the hospital. Not feeling totally comfortable in any one place, we ended up spending time in the cafeteria, wandering the halls, pumping milk every two hours in the PICU (Pediatric Intensive Care Unit), and praying in the meditation room. The whole time we kept it together and remained very positive and focused. We just kept visualizing the positive outcome that we KNEW would be. We repeated over and over again “the surgery went perfectly.” This carried us through for the 7+ hours that we had to wait until we heard how it went.

Three excellent neurosurgeons and one wonderful anesthesiologist worked on Finn. They, and all of the nurses we’ve met so far, have been great. Now to the nitty gritty of the surgery . . . during the removal of what was thought to be a cavernous malformation, it was discovered that it was actually an arteriovenous malformation (AVM). While both of these are vascular anomalies of the brain, there are some important differences. The main one being that the mass is made up of arteries and veins instead of small compartments of blood products or capillaries. An AVM presents more of a danger if a bleed occurs since there is higher pressure and a potentially larger hemorrhage. So, the fact that is has now been removed is even more of a relief and we are very glad that we had this done now versus later. More details on what AVM’s are can be found here: http://www.brain-aneurysm.com/avm.html

Being that is was an AVM, Finn is scheduled to have an angiogram done tomorrow to make sure that all of it was removed. Unfortunately, an angiogram is a fairly invasive test (that involves running a catheter up the femoral artery to the neck and then an X-ray is taken), but we know this is necessary. A partially-removed AVM has the potential to create some big problems so this must be done.

The best news of all of course is that Finn is comfortably resting here in the PICU. He was extubated (i.e. the breathing tube was removed) soon after the surgery was complete. He nursed for the first time a few minutes ago and now drifted back to sleep. He has a sizeable incision area, approximately 2.5 inches long, on his head and some other ‘war wounds’ from the pins used to hold his head in place and the numerous IVs, including ones in his neck. He is also rather puffy from being in the prone position for the surgery and the steroids, but REALLY we think he looks GREAT! We are so happy to have him with us again. He has WITHOUT A DOUBT earned his title of Amazing Finn.

Thank you all for your continued love and support. And keep those powerful prayers and positive energy coming!

Finn is in Dreamland

We are here at the hospital now. Finn went under about two hours ago. We had a GREAT day yesterday and this morning went really well. I seem to have gotten this superhuman strength from somewhere. Any kind of tears, fear, or worries would detract from the task at hand. I am so focused and so positive. It is the only way I can get through this. I know I can’t sustain it forever but hopefully for at least the next 8 hours or however long the surgery takes. I slept very little of course. Nursed him last at 12:30. I have pumped twice so far. Jens had to hold him most the whole morning while we were in the prep area since he kept saying “ma . . . ma. . .” when I went near him because he wanted to nurse. But I am keeping it together. We met all the docs and nurses and everyone was great. I tried to convey back that really positive, optimistic energy. If I start feeling weepy or fearful at all I just start praying and repeating my mantra “THE SURGERY WENT PERFECTLY.” I know this with every fiber of my being and every breath I take. The docs are performing their magic and Finn is surrounded by so much love and light and God’s great energy. Thank you all again. We will update again as soon as we can.