Sunday, November 29, 2009
During the beginning of the week he was pretty fussy and wasn't interested in eating anything (only nursing). That has slowly eased up through the week and he is back to eating a sleeping a little better. Ben insists on feeding himself and is pretty stubborn when either of us try to feed him with a spoon. He ate a big lunch of Thanksgiving leftovers yesterday for lunch and he still managed to down most of the mashed potatoes with his hands.
Tuesday, November 24, 2009
Ben's personality is back! He follows me all over the house calling, "momomomom..." and he has been very clingy, but just as observant and curious as ever. He is back to trying to stand on his own, but timing couldn't be worse. Our helmet fitting is this coming Monday, and we will have the helmet about a week after that. Our first post op appointment and his nine month check up are also on Monday. He will hate getting the helmet and it will be hard for me to cover up his adorable hair, but I also look forward to the security of keeping him from bumping his head.
Monday, November 23, 2009
We were able to come home from the hospital this morning. The surgeon was very pleased with how well Ben looks, and we will be visiting him again a week from today. We will also be fitted for Ben's helmet that same day.
We took home arm loads of toys that people so graciously gave Ben as get well gifts. His new favorite is a singing, glowing, pink seahorse. For the most part, he is acting like his old self again. However, we have had a rough couple of nights. His surgery coincides with a developmental peak in separation anxiety, and I have held Ben for more than twelve of the past 24 hours. He has wanted to nurse non-stop, and will only sleep when held. I am so exhausted from the nursing and holding that I can hardly keep my eyes open and I'm beginning to get a little crabby.
Josh is trying to help, but Ben won't take a bottle, so there hasn't been much he can do. Hopefully tonight will be easier now that we are back home and in familiar territory again.
Look at that round head!
Sunday, November 22, 2009
We had a very, very long night last night. Ben didn't sleep more than 20 minutes straight until 2am, then he wouldn't sleep unless I was holding him, and that would only last for an hour at a time or so. Most of the day has been about like that too. His swelling has really gone down and as the day has progressed. He has needed no oxygen or medicine at all except for Tylenol with codeine, and they are almost certain we will be going home tomorrow. It has been a long few days, but it's good to finally see him smile again.
Saturday, November 21, 2009
We are out of the pediatric intensive care unit (PICU) and Ben is doing much better. His breathing and other vitals stabilized. His swelling really peaked today and he was awake but couldn't open his eyes. This made him really fussy and irritable, but he slept through most of the day. They are still keeping him pretty heavily medicated. He has no tubes or wires except for oxygen. He also still has the direct IV into his chest for the nurses to administer medication and draw for blood tests.
Dr. Sami and his wife visited and brought us flowers and a whole bag of toys. They could not be a sweeter couple. We have tried to take turns holding Ben upright and propping his bed up as much as we can and this has helped reduce the swelling enough that his eyes have opened a few times. The picture is of him this evening and (believe it or not) he really looks a lot better than he did earlier today.
I am relieved that the swelling has peaked and I hope his pain will be easy to manage and medicate as he becomes increasingly mobile in the next day or two. We will be going home either Monday or Tuesday as far as they can tell.
Thank you all for the kind emails and comments. Sorry I haven't been able to respond to everyone, but I really appreciate your thoughts. We're almost through this.
Friday, November 20, 2009
We spent last night in a hospitality room while Ben was in PICU, and we were actually able to get some sleep. This morning his vital signs were all improving, but not quite where they wanted everything to be. His blood pressure was still a little low and pulse a little too fast. The swelling was noticeable from the start of the day and by this afternoon he couldn't open his eyes. They took him off the breathing tubes late in the afternoon. We were finally able to hold him and he drank a couple of bottles of Pedialite before (finally) nursing. They had given him Tylenol with Codine and were going to start morphine tonight if needed. Around 10:00 we left to return upstairs to sleep for a bit. They will use the milk I have pumped, then call if I need to go downstairs. If everything continues to improve, Ben will be moved to a room on the pediatric floor tomorrow.
Thursday, November 19, 2009
Ben's surgery was today and he will be just fine, but it was quite a dramatic day in all.
5:30am - We arrived at hospital and checked in.
6:30am - Ben's getting fussy and hungry, we went through weight (16lbs 9oz. and length 27 in.)
7:00am - We moved downstairs to pre-op with Ben and waited with several other babies getting ready for surgery.
7:30am - We handed the baby over to the nurse who took him to the operating room.
10:30am - We were told Ben's surgery was starting now and they had a difficult time starting IVs and he would be bruised all over his arms and legs.
11:30am - The initial incisions were made, but then two IVs clotted. They stapled his incision closed and turned him back over to get more IVs open. Then the other two clotted and Dr. Sami had to start a large emergency IV in Ben's thigh until the anesthesiologist started a direct line into Ben's heart. They then added several more IVs in his groin and wrist.
12:15pm - Dr. Sami came out and explained what happened and that now they were starting the surgery all over essentially.
1:15pm - Dr. Sami came back and said the most dangerous part of the surgery is over (removing the skull), and now Dr. Shah is reshaping the bones that were removed.
3:30pm - Dr. Sami visited with us again and said the surgery is over.
4:30pm - Josh and I were able to see Ben in PICU.
When they opened Ben's head, you couldn't even tell he had a surgery prior to this one. He had multiple sutures closed, more than just the original one. That level of bone closure would have definitely led to brain damage and further neurological problems and they focused on his forehead and the top of his head to get the best correction in shape and to allow for brain growth.
Unlike our original plan, they did not address the back of Ben's head because the surgery lasted much longer than expected and he lost three times the blood that they anticipated. He will most likely need a helmet for six months, and we may need more than one helmet because his head will grow. The surgeons were aggressive with removing the overgrowth of bone, but still said they accomplished about thirty percent of the correction he would need to have a "regular" head shape. We will reevaluate his need for further surgery at age three unless any problems arise between now and then.
Ben will be in PICU for the next couple of days and he still has breathing tubes in and the IV going into his heart, as well as several other IVs and a catheter. He will continue to be heavily sedated and medicated until his breathing tubes are out. He opened his eyes for a few minutes, but they were quick to put him back to sleep so he wouldn't become upset over the breathing tubes. His heart rate has been high, his blood pressure very low, and he's had a weak pulse. His blood sugar has been all over the place and he hasn't needed any additional transfusions but they are watching that closely. They have a nurse bedside 24/7 while he has the breathing tubes in.
His head is very lumpy and rough looking, and it will take about three months for most of that to smooth out. He has not swollen much yet. In three days, his eyes will swell shut and his head will be like a pumpkin. From then, the swelling should go down and we will be able to go home once he can open his eyes again. I will be sure to update everyone as things progress.
Monday, November 16, 2009
My entire focus has shifted to preparing for Thursday. I recently contacted another mom going through the same thing as me. Her son had his second surgery three weeks ago and he is six months old. Through a series of several emails over the past two days, she has shared some new insight and advice I hadn't thought of prior to now.
She was unable to nurse for the first four days after surgery. I really, really hope that doesn't happen this time. That would be so difficult on both of us. Her hospital was a lot less nursing friendly when compared to most, so I can't imagine we will have to wait that long.
She also brought crib toys, like the fish tank hanging on the inside of Ben's crib, to make the environment feel a little more like home and so that he can at least hear familiar sounds when his eyes swell closed.
Our trunk will be packed with our equipment from home - including the Bumbo chair. She propped her son in his to help the swelling move out of his face when he was really swollen. We will also be bringing the Boppy pillow again, to prop his head on while he is sleeping.
The hospital has already recommended we bring a few other toys from home. He has a glowing stuffed owl (reminiscent of a glow worm from when I was a kid), and a blanket that he usually sleeps with.
Josh will also be returning home regularly, so I'm sure he can bring the rest of Ben's truckload of equipment as needed. This kind of goes against my less is more policy of packing, but I think all of this will make it easier once we're there. And if it's in the way, I can always send it home with someone else.
*Today's pictures are of Ben and his play kitchen. Our entire house is slowly becoming one giant play room.
Saturday, November 14, 2009
As Ben's surgery date is approaching (November 19th), I am trying to recall the most important details and reminders to prepare myself for the upcoming hospital stay. Ben needed plain onsies to help hold the drain close to his body to keep him from pulling it out. I'm going to bring more separates than pajamas this time because sometimes he could have worn just pants and a onsie but not socks due to IVs and so on.
The hospital told us they would not be putting IVs in his feet this time unless they have to. Hopefully his IVs will be in one arm and they will place his arm on a board to keep him from pulling the tubes out. This may make it more difficult to nurse, but he is so much more mobile and aware of everything around him. I have a feeling that will make this hospital stay much more difficult.
For myself, I wore my nursing tank tops daily and will do the same this time. I packed way too much clothing for myself last time and can really narrow that down this time around. Josh will also be coming home often and he can always pick up what I forget.
I will also bring less stuff with me to the hospital room. It seemed like I spent a lot of time last time sorting and organizing our things, and I think the less we have the easier that will be.
*Today's picture is of Ben and his friend Clifford (dressed as Harry Potter).
Friday, November 13, 2009
I haven't posted in quite a while. Ben is so close to walking and it takes so much energy just to keep up with him! In the photo he is napping with his toy remove. We have started all taking an afternoon nap together on the weekends and it is a routine I would highly recommend adding to your Sunday afternoons.
I just finished fall parent teacher conferences and it has caused me to reflect on Ben's education. I know I have said this before, but I absolutely love teaching at The Summit. Now that I have been teaching at this school and know more about what an independent school is, it is hard for me to imagine sending Ben anywhere else. Every classroom has highly qualified teachers and fewer than fifteen in each class. The children have Spanish daily and nearly twice as much time in art, music, P.E., and computer when compared to public school. More than anything though, the attitude of the school is phenomenal and everyone is thrilled to come to school every day. It is so unlike anywhere else I have taught before.
The entire school community (faculty, parents and students) have all been so supportive of me as we are nearing Ben's surgery date. I will be taking three to four weeks off, depending on how the recovery goes and how long it takes us to get his helmet. Fortunately, one of those weeks is Thanksgiving break, so I had less planning and days to miss school. The time between Halloween and Christmas is always a difficult time to be a teacher and I hope all goes well while I'm gone.
Tuesday, November 3, 2009
I have been a little slow about updating the blog lately, but Ben has been changing so much every day. He now has four teeth, eats everything that is put in front of him, responds a lot more to his own name and other words, and he is so, so much more mobile now.
He can easily move all over the house and has developed his own little routine. Ben starts by pulling off the dvds off the shelf and pushing buttons by the tv. He then crawls to the front door and watches the chickens out the glass (floor to ceiling next to the front door). He will then play with the piano chair then crawl to the back sliding glass door to "play" with the dogs through the glass. He can easily pull himself up to standing and hit the glass to call the dogs over. Ben then moves onto the kitchen where he can open the drawers and throw sippy cups around the floor before returning to the dvd shelf again.
Ben can sort of cruise around the coffee table and over to the couch, but he's not incredibly sure of himself just yet. He's completely let go and stood a few times, but doesn't really have the balance for it just yet.
Ben has even started waving on occasion and even clapping every once in a while. He babbles "mamamama" without much association, but he has definitely said "addy" more than a couple of times to Josh.
I absolutely love the relationship the two of them have. I have seen very few babies that are as close to their dads as Ben is to Josh. I know it's not the easiest path we could have chosen, but I truly appreciate Josh being able to stay home with Ben. I know that's not going to last forever.
Sunday, November 1, 2009
Ben ended up with three costumes for his first Halloween. We only made it through two of the three, and the other was too big and we're saving it for next year. During the day, he dressed as a monkey and drew quite a bit of attention as we ran errands around town.
Once we ran to the grandparents' houses, he wore the dragon costume that I bought last November when I was hugely pregnant and cruising clearance racks at the Old Navy outlet in Branson. Ben and his cousins are all together with Grammy, but it was impossible to get all of them looking the same way at the same time.
We made only a few stops to family and friends, and by the end of the night Ben was overwhelmed, overheated and exhausted. He had quite a day.