Saturday, March 11, 2006
So tonight I have been trying to clean the house a little BUT apparently Maxwell has other plans for me. I can't leave the room for more than a minute without his monitor going off. For some reason he is having bradycardia (episodes of low heart rate) terribly tonight, but it has self resolved each time thus far. So since I am resigned to being in his room and he is busy snoozing, I thought I'd pull out the laptop and do a quick post!
This week, the dreaded Gtube "pull out" finally happened...eeks! He has been grabbing on the tube more and more, but it is pretty safe because of the balloon inside. However, the balloon had apparently deflated a bit and he gave it a yank, and out it came! Getting it back in was a little tricky. Knowing that you are inserting something RIGHT into your baby's tummy feels so invasive...and additionally, it didn't feel very good and he let me know that. Then just a few hours later I noticed it was loose again so I had to remove and re-insert a new balloon. And again he was miserable...sorry Max, but PLEASE leave your Gtube alone and that won't happen!!! :)
Earlier this week I met with a hearing and language specialist. She will be joining our "team" and what a team it is! I believe we now have nine specialties and five therapists!
We will be meeting with her one to two times per week, in addition to OT and PT. We are worried that Max isn't responding differently with hearing aides in place, but want to give it some more time. Additionally, the fluid currently in his ears might be causing this additional temporary loss.
Max is far behind on his language development (no babbling for example) and has a few issues (significant hearing loss, a very high palate, medical concerns) that will hinder his progress. She said his current communication skills would possibly be that of a three month old, which doesn't surprise me very much. But she was particularly pleased with how well he responds with smiling for me and looking for me when I leave the room! Max and I are in love! :)
ANYWAY, she said she feels "pretty good" about his chances in speech, but it will primarily "depend on extensive, intense parental involvement" with lots and lots and lots of therapy. Yikes for two reasons. First, that isn't much of a responsibility, is it? Second, even though I know hearing loss can hinder speech, I never really thought about Maxwell not being able to speak. Just the thought of him never speaking simply breaks my heart. I know there are other ways to communicate but I just am not ready to give up that dream of actually hearing "I love you mommy!"
Sometimes I wonder if I am overly optimistic with my thoughts of Max's future...am I not being realistic? Why am I so determined and convinced that we will beat the CHARGE statistics? I guess that is the only way for me to wake up every day and go on...I ignore the "what ifs" and proceed as if we can accomplish anything and everything. I am hoping that is the best route for Max. :)
I best run...Max's milk is running low. I guarantee as soon as I leave the room, he will brady...crazy Maxwell! Have a great weekend everyone!
Thursday, March 09, 2006
I was trying to take the photo above this one (where you could see the hearing aide) but Max kept turning to me and the camera. Hmm, is it odd that this lil' guy is loving the camera already? And then he added in a good "pucker up" pose as an added bonus!!! :)
Max and one of his very first stuffed animals...the MONKEY! I bought this in the hospital when it was becoming apparent that his ear was definitely different and not just preemie. They told me this could be a sign of a genetic disorder and I was trying to come to grips with that. So one day I was in the hospital gift shop (retail therapy!) and noticed this monkey and how his ears kind of resembled Max's. It immediately made me smile and for the following week, I carried this monkey with me at all times. Weird? I guess, but it brought me comfort at a very difficult time! Since then, that ear has lovingly been nicknamed the "funky monkey" ear and even his audiologist refers to it that way now! :)
Maxwell LOVES his toys!!! And because we waited so long for him to reach this point, I am still so in awe every time he reaches for something and enjoys playing with it!!! This is one of his very favorites!
"Oops I dropped it again...Mom?"
Wednesday, March 08, 2006
There even will be live music with an attendee's husband playing a song he wrote just for Max! How cool is that!!! We love you Mello family! (Their daughter was treated at Children's and has also made a miraculous recovery! We met them in the cafeteria one day and have stayed friends ever since!) I personally am soooo excited to hear this song!
And check out the super fun Mighty Max t-shirts! Everyone is wearing them around town and attracting so much attention! WE LOVE MIGHTY MAX!!!
P.S. If you cannot attend the event, but would still like to donate, please send your check to:
The Mighty Maxwell Guild
3204 Illinois Lane
Bellingham, WA 98226
*Please remember that no donation is too small OR too big! Every dollar makes a difference! :)
March 8, 2006
Store to host 'Mighty Maxwell' benefit
Treasury of Memories, a Bellingham scrapbooking store, will hold a "20 Hour Benefit Crop" for The Mighty Maxwell Guild.
The guild was created to provide funds for Children's Hospital and Regional Medical Center in Seattle. The goal is to raise $10,000 to kick off the guild's fundraising.
Elizabeth Boyle, owner of Treasury of Memories, is the aunt of Maxwell McKinley, for whom the guild is named. The Bellingham boy was born prematurely and with a rare genetic disorder called CHARGE Syndrome.
He spent the first six months in the hospital and underwent four surgeries, including open-heart surgery.
Proceeds from the event will go to the hospital. The event will run from 6 p.m. March 31 to 2 p.m. April 1 at Christ the King Community Church in Bellingham, 4173 Meridian St. Attendees are asked to raise $100 or donate $100. Classes, door prizes and food will be offered.
Children's Hospital and Regional Medical Center gives care regardless of a family's financial situation. Last year, they gave $35 million of uncompensated care.
For more information on the "20 hour Benefit Crop," contact Treasury of Memories at 715-3125, or e-mail email@example.com.
For more on Maxwell, visit www.maxupdate.blogspot .com.
Last week I had the opportunity to go clothes shopping for Mr. Maxwell...I was so excited! Many of his clothes that I had bought before he was born simply don't work with his Gtube (lack of easy access to his stomach) so our clothing selection has been limited.
I found the most absolutely perfect outfit...I literally screamed "YES!" :) (Ok I get way easily excited anymore when it comes to Max, I know!!!)
Does he not look adorable and so grown up??? The reason why this was so perfect is that notice the saying "To the Rescue" with the emergency helicopter on it. Wow, did that bring back a flood of emotional memories.
I was 28 weeks pregnant and had just moved to Bellingham. (Marriage was ending and needed fresh start.) All had been going well in the pregnancy. In the beginning, I had been quite nervous because we had experienced two miscarriages that year. So the stress of the divorce when I was just three months along had me quite concerned. The shock of everything really hit me hard and I couldn't gain any weight...actually I think I lost about 10 pounds in just a few weeks. The doctor was concerned about that, but as time went by, I really focused on staying healthy and all seemed to get back on track. So the pregnancy was going along smoothly....and quickly I made up for that weight loss!!! :) Good excuse to eat all my favorite foods and not feel any guilt!!!
I moved to Bellingham to be close to my twin sister (also pregnant) and her family. I was nervous to start all over but soooo excited to get away from the divorce and get everything ready for Max's arrival.
I babysat my nephew Jackson that Monday and we had a super fun day. We weeded my front yard and laughed and played. Then we went toy shopping and just had a fabulous time...well, having fun while ignoring the fact that I felt completely terrible. That night I remember my back was killing me and I was feeling completely off. I complained to Eliz and Jim...and later they admitted they laughed and said now she knows what it is like to chase a toddler around all day.
The next day I was still feeling "off." I was furniture shopping on Tuesday and I was absolutely exhausted. I kept having to sit down every five minutes. Finally I went home and just collapsed....truly thinking nothing about it besides, wow pregnancy really wears you out!
Eliz and Jackson came over and finally she convinced me to call the doctor. Initially they said, no worries, but if this continues, come in the ER tonight. Well I started "leaking" which I had been doing for days (didn't want to complain, thought it was just part of the pregnancy)...so Eliz said let's just go ahead and head to the hospital just to be safe.
On the way there, I'm like, "Eliz, if they put me on bedrest, I am going to be so mad...I have so much to do to the house to prepare for Max." And then we were laughing how we were probably totally overreacting and would be home within the hour. (Even as I write this, it is amazing to recall how much my life has changed since that very night...my world was turned upside down, shaken and shaken again. Those memories are still so intense and emotional, little did I know what was ahead of me.)
We arrive at the hospital and happen to see an emergency helicopter. I remember saying to Eliz, "wow, that must be really scary to have to ride in one of those...that means you have some SERIOUS issues."
We check in and it takes forever. They had a million routine questions...some about the father. It was the first time I had to explain anything about him or his role and I remember feeling quite awkward! I was thinking, "how is this relevant...just check me out, tell me I am fine and send me home!"
Finally we are in a room and I remember looking on the door and there was a list of the top 10 signs of premature labor. Well sure enough, I had each and every sign.
The nurse could feel some contractions and she went to get a doctor. Within minutes my water breaks...and I mean EVERYWHERE. (They nicknamed me the "gusher.") I was convinced I had just peed my pants, I was so scared.
(NOTE: Later when Max was diagnosed with CHARGE, I learned that choanal atresia can cause excessive amniotic fluid.)
What is funny...this is one part of the story that still makes me smile and then cry...is that I had been leaking for a few days and I kept practicing kegels b/c I thought my bladder muscles were just weakening. One of my favorite Curves members (hi Joan!) had stressed to me once that you must do kegels frequently or you will have problems leaking in the future...that had really stuck in my head. (Didn't want to be a young single mom wearing Depends!) So when my water broke, initially I thought I could stop it with doing kegels. Looking back, WHAT WAS I THINKING!?!?! I was just terrified and didn't want to believe it was actually labor. I asked for tissues and I kept trying to absorb it. Eliz loves this part of the story....here is this massive amount of water and I am taking tissue by tissue trying to clean. I guess it must have been a little funny.
Anyway so immediately the room was filled with nurses and doctors...Eliz and I were quite panicky. There was thought I might deliver right then and there. (Still takes my breath away to remember that night...wow. I just felt my body shudder.) Not sure of the time frame, but quickly a helicopter team was there and they packed me up to head to Seattle where they could handle a 28 week preemie. I had never been so confused or scared in my life. I still remember that ride...I don't really enjoy heights and they kept trying to distract me from the pain and fear by looking out at Seattle. It was right at sunset and supposedly the view was gorgeous. I was obsessed with thinking I would fall out of the helicopter because they had me on my side to help with the contractions. I was holding on for dear life!
Finally we arrive and the medicine (very strong and crazy meds) they had put me on began to kick in and stopped the contractions. They put me in the antepartum unit and the doctors said I would most likely deliver within 48 hours...and they were HOPING I could last that long so the steroids to help the baby's lungs develop would have time to kick in. So for the next few days I just laid there completely drugged and dazed. The meds are quite powerful and you see double, get very hot and thirsty, and make you simply VERY uncomfortable. They ran a million tests and on me and kept a very close watch. But nothing happened...THANKFULLY!
While I was in the helicopter, Eliz and Jim were driving to Seattle to meet me there. They didn't know if they would walk in the hospital and see a baby being delivered or what. Eliz's absolute favorite story from that night is when she arrived. They walked in my room not knowing at all what to expect...but they found me on the phone ordering food! As my friends and family already know, I LOVE to eat and I was absolutely starving. I had nothing to eat all day since I had been feeling so off and so when I arrived and my contractions subsided, they told me about "room service" etc., so I thought heck, might as well eat...who knows when I am giving birth and I guess I should have some strength. So Eliz was quite relieved to NOT see a baby but instead see her twin sister ordering a sandwich, potato chips, canned fruit (strange craving I was having!!!) and chocolate chip cookies. Isn't that funny that I remember exactly what I ordered?
ANYWAY, wow this post is getting super long! So nothing happened those first few days...we just waited and waited. I was terrified (not knowing what in the world to expect) and loopy (from the meds). Each week I set a goal to make it until the end of the week. I was on strict bedrest and only was allowed up to quickly use the bathroom. I wasn't even allowed to shower. I remember the first time I washed my hair myself...I was soooo excited! Felt so great!
We had several ultrasounds and everything (including his heart which proved to have several holes later) looked just right. The amniotic fluid was low but high enough to sustain him...he was recreating the fluid well. But with low fluid, his movements were quite dramatic and painful. You could see my stomach move from across the room, which was very strange!
Everyone was so supportive. The nurses were wonderful and there were volunteers trying to teach me how to knit (REALLY hard when you are flat on your back!) and there was a pet therapy session (so fun, I was terribly missing my pups!) One of the funniest moments on bedrest was when I attended the weekly support group. Six of us - all laying in our beds - were wheeled into a room so we could discuss what was going on. It was great, but so funny! All of these women in our hospital gowns laying in bed talking about what we do to make our days go by faster.
Mary Mom arrived the very first day I was on bed rest and stayed with me the first week...then Dad arrived. Then when they headed home, Suzanne Mom came and stayed with me. So fortunately I had live in companionship the entire time on bedrest, which was wonderful. Eliz visited frequently too...and of course lil' Jackson, who thought the hospital was quite fun! Little did he realize how much he would spending time in hospitals for months to come!!!
Everyone brought me books about prematurity...I was obsessed with learning as much as I could about the different associated issues. And I cross stitched A LOT! I was losing weight which had the doctors worried...but I knew I was just losing a lot of muscle. I lost absolutely all strength (and have yet to gain back much muscle yet unfortunately!!! I sure do miss CURVES!!!) But what was funny about the weight loss is that they set me up on some protein shakes and they followed me around the hospital. One even arrived right after labor...we were like, how in the world did you find us here???
All in all bedrest was fairly uneventful. Being in bed 24/7 is terribly boring and the unknown was simply frightening. But fortunately we only had a few scares here and there. The first was the very first time I was allowed out of bed for a quick wheelchair visit to the NICU to prepare me for when Max arrived. I was doing ok but after our visit, I passed out in the wheelchair and they had a difficult time reviving me. That had never happened to me before and I was terrified....and the doctors were quite nervous too. They ran a bunch of tests and were worried something was going wrong with me and/or the baby. At first they could not get my heart rate to be normal...it was abnormally low. But as I recall, that resolved and nothing else showed...that stopped any more wheelchair rides anytime soon! I think later that week I was finally able to have a ten minute trip to the balcony with my family. I was soooo excited to smell fresh air, wow.
Weeks went by, and I had several false alarms of labor. Finally he decided to come on June 22. I started to have contractions the day before and we thought it was going to happen then...but nothing. But that night they started again and didn't stop. 13 HOURS OF LABOR...yikes. I guess Max wanted to test my strength from the very beginning! Luckily I had a fabulous doula and my mom and sister were both with me too (along with a million nurses and doctors!) No drugs...but way, way, way too much pain! Near the end there was a slight panic from the docs and they basically had to force him out...he was taking too long and they were worried about his strength.
As soon as he was delivered, he was intubated because he wasn't breathing and one of his lungs had collapsed. They brought him to me for a very quick kiss and then rushed him to the NICU.
The rest is history...welcome to the world Max. You've come a long way baby!!!!
Tuesday, March 07, 2006
As noted previously, Max has a very substantial hearing loss (very, very common with CHARGErs). Unfortunate and very disheartening is that often he doesn't show change even with his hearing aides on (when he allows me to put them on that is!!!). However, the fluid currently in his ears may be playing a role in that additional loss too. I am HOPING his hearing is not worsening. He does respond sometimes to sound, but I think it usually is more to my facial expression versus what I am saying. So I try my own hearing tests and go to the side and unfortunately no response...we'll see what her thoughts are.
Later today we have a trip to the doctors for the monthly testerone shot (sorry Max!), OT appointment, and of course our nearly daily run to the pharmacy. And hopefully many successful therapy sessions in between with just him and me! :)
We made some great progress orally yesterday...I was laughing and smiling so much that I had tears in my eyes! He is soooo awesome! He finally let me back in his mouth after that dreadful barium! Wonderful! Max and I were having such a good time that the dogs tried to join in too! They were going crazy and trying to get right in our faces and lick off the food...too funny! :)