Saturday, September 17, 2005


A wonderful friend shared this story with me and it really moved me...hope it does the same for you.

A young and successful executive was traveling down a neighborhood street, going a bit too fast in his new Jaguar. He was watching for kids darting out from between parked cars and slowed down when he thought he saw something. As his car passed, no children appeared. Instead, a brick smashed into the Jag's side door!

He slammed on the brakes and backed the Jag back to the spot where the brick had been thrown The angry driver then jumped out of the car, grabbed the nearest kid and pushed him up against a parked car shouting, "What was that all about and who are you? Just what the heck are you doing? That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?" The young boy was apologetic. "Please, mister...please, I'm sorry but I didn't know what else to do," He pleaded. "I threw the brick because no one else would stop..." With tears dripping down his face and off his chin, the youth pointed to a spot just around a parked car. "It's my brother, "he said "He rolled off the curb and fell out of his wheelchair and I can't lift him up." Now sobbing, the boy asked the stunned executive, "Would you please help me get him back into his wheelchair? He's hurt and he's too heavy for me."

Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat. He hurriedly lifted the handicapped boy back into the wheelchair, then took out a linen handkerchief and dabbed at the fresh scrapes and cuts. A quick look told him everything was going to be okay. "Thank you and may God bless you," the grateful child told the stranger. Too shook up for words, the man simply watched the boy! push his wheelchair-bound brother down the sidewalk toward their home.

It was a long, slow walk back to the Jaguar. The damage was very noticeable, but the driver never bothered to repair the dented side door. He kept the dent there to remind him of this message: "Don't go through life so fast that someone has to throw a brick at you to get your attention!" God whispers in our souls and speaks to our hearts. Sometimes when we don't have time to listen, He has to throw a brick at us. It's our choice to listen or not.

Thought for the Day: If God had a refrigerator, your picture would be on it. If He had a wallet, your photo would be in it. He sends you flowers every spring. He sends you a sunrise every morning. Face it, friend - He is crazy about you!

God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.

Read this line very slowly and let it sink in...If God brings you to it, He will bring you through it.

Thursday, September 15, 2005


Holy Moly Max! Way to go! We have no idea how or why...but for some reason tonight Max decided he didn't need his oxygen! This is the first time EVER. He has been on room air for the past two hours. I am in complete shock and am tempted to drive back to the hospital just to see it for myself. I came home earlier today for an appointment and am returning tomorrow morning. Hopefully this amazing trend continues throughout the evening! There is a good chance he will return to needing oxygen but the fact that he can do without for a few hours is a very good sign. I am soooooooooooooooo happy right now...I just went over to Eliz's house and was screaming "room air, room air, room air!!!" :)

Max also had his hearing test today. His left ear has a mild to moderate hearing loss and the left ear has a moderate hearing loss. Both ears CAN hear. Amazing!!! As noted in previous posts, many CHARGE kids have severe to profound hearing loss...this is not the case for Maxwell, so we are quite relieved. He will require hearing aids and will be fitted in a few months. There will be another test in a month before his discharge. The audiologist did say there is an ever so slight chance his hearing could improve when the ears and canals increase in size.


Today I found out that yet another one of Max's friends in the NICU has passed away. Max spent his first two weeks of life at Swedish Hospital, and we quickly became friends with a wonderful family and their baby Colton. Colton had a very rare genetic disorder but I don't recall there being any associated lifethreatening issue. They had asked for me to stay in touch, but in the midst of the emergency transfer to Children's Hospital, I lost their contact info. So out of the blue today, I had a strong urge to call the hospital and get in touch with the baby's parents. That is when I learned of Colton's passing. As you can imagine, it was devestating and quite shocking to hear such news. They provided amazing support for me during those early crucial weeks, and I will be forever grateful.

Wednesday, September 14, 2005


The doctors really took my requests seriously today...and the tests are already lined up and happening! It certainly pays to be aggressive.

Max had his abdominal ultrasound this afternoon...doctors are explaining results to me tomorrow. One thing the tech noticed right away though was a change in the kidneys due to the massive amount of diuretics he is receiving. They thought there might be a small kidney stone...supposed to know more tomorrow.

Tomorrow is a very big day...Max has a followup audiology appointment to test the right ear. The canal was too small to test last time. I am hopeful for good results, but I have a feeling (I have no reason to back this up) that there is hearing loss in that ear as well. Hopefully it is only mild to moderate loss. I just have to keep remembering that we are fortunate he is not completely deaf, as is the case for many CHARGE kids. We can work with partial hearing loss...I am not happy about it but we can deal with it.

I made a tape of me reading stories and talking with him so that when I am not in the room, we can play it and he hears my voice. Lord knows he heard it enough in utero, so it must be a comforting or at least familiar sound! :) The nurse and I were talking about it today...they all get a kick out of my tapes...and she was telling me how I made her totally weep when I was talking on the tape about wanting Max to hear me say "I love you." It would break my heart if he wouldn't be able to hear those words from me, but she reminded me that there are other ways to tell him that even if he did have profound hearing loss. (We do know that according to the previous tests, he only has a mild hearing loss in the left ear...which was fairly good news considering what it could have been. However, we won't truly know the true level of hearing until he is older and able to be more involved with the tests.)

On Friday, he has an Upper GI test scheduled...that should help determine if there are any formation issues or how severe the reflux is.

He has another opthamology appointment next week to test for retinopathy, a common eye issue with preemies. Max was already tested once, but I wanted a followup appointment...just to make certain. I think his vision is good...everyone comments on how alert and attentive he is and how he is constantly looking at everything...and of course how beautiful his big eyes are!

I talked with Max's ENT doctor today and we are most likely going to remove his nasal stents on Friday or Monday. I am VERY excited about this in some ways because he will once again be able to receive his oxygen via the nasal canula and not the face mask...AND it is much easier to hold him in different positions without worrying about the stents or mask...AND there will be a lot less care involved in the suctioning of the stents. This would change the care significantly for the better...I cannot even begin to tell you what a difference. However, if we are taking them out too early, the passages may begin to close again and he could wind up back in the operating room. This was a very stressful conversation because no one can determine how long the stents should truly stay in...does another month or two make a difference or are the stents causing more problems than they are worth???

Care conference was scheduled for tomorrow but without of course I raised a fit and said "nope"...I want EVERYONE there. So we are meeting next week to review the whole scenario and plan out Max's upcoming weeks and months.

It was a busy day at the hospital with all the planning and test scheduling...and they made some changes with Max's monitors so they are beeping nearly constantly. After just a few hours, Eliz asked (somewhat jokingly) "can we turn that's so annoying and it's stressing me out!" I said "welcome to our world!" But she is right, the beeping is crazy! The monitor beeps when his oxygen drops too low and now when it is too high (make the heart work extra hard if he has high oxygenation). So the nurses and I are constantly moving the mask closer and further away to get "just the right amount."

We'll see how tonight goes...


Remember the movie Groundhog Day where the day just repeats itself over and over? That is what I felt like yesterday. We had a good day, and as I wrote last night, we had a fun bath and swing time. He always has great "days." Then within a few hours, he started getting very uncomfortable and proceeded this way throughout the night. Finally after Tylenol and Ibuprofen, we calmed him down with Adavin (a sedative) at about 4:30 am. I don't like resorting to drugs but we cannot seem to comfort him when he is this upset. It is incredibly heartbreaking. I lose it every time this happens. First you are already exhausted because it is 2 in the morning and now your baby is crying uncontrollably...and nothing is calming him down.

It is so bizarre and truly has everyone confused. This morning in rounds, I said THAT'S IT...we have GOT to figure out what is going on. I pretty much demanded a series of tests, including an Upper GI and abdominal ultrasound, and the first begins this afternoon. So we'll see what happens...I am HOPING we can come up with some answer. The nurses and I are desperate!

Additionally, I have requested another "care conference" with all the specialists involved to get an overview of Max's status, different conditions and upcoming possible problems, as well as discuss the current "frantically uncomfortable nights" situation. As of the last conference, we had estimated he would be coming home in a month and that would be next week...and that certainly isn't happening unfortunately.

His IV comes out today after his 10 days of antibiotics so that will be good and we can once again increase his feeds. We have had to cut back on feeds because of the increased fluid level.

Many of you have asked what its like to sleep in Max's hospital's "different". Obviously I enjoy the amount of time I can spend with him and I am able to be completely immersed in his care, but you have to be "on" all the time. For example, this morning I went to bed around 5 am and woke up at 7:30 am to a doctor sitting on my bed talking to me. And even during those two or three hours of sleep, I am waking up every 20 minutes to Max's monitors going off and looking to see if a nurse is in the room or not...or should I get up, or is he the oxygen too high or too low? So yep, I am a little sleep deprived. I knew being a single parent would be exhausting, but this is way beyond what I imagined of course! I was practically begging Max last night, PLEASE MAX PLEASE relax and let's go to sleep...PLEASE. He didn't listen.

Anyway...Eliz and the boys are coming to visit today so Max will have another fun day...and hopefully "Groundhog Day" does not resume again this evening...but I have a feeling it will be another "Sleepless in Seattle" night. Like all the movie references? Alright, I have to go get a BIG latte and get ready for the rest of the day!

Tuesday, September 13, 2005


So tonight we are giving Max a bath and so as soon as I get him naked, I am teasing him saying "don't you pee on me little guy, don't you pee." And then suddenly I feel a warm sensation on my hand and sure enough he pees everywhere. Then we put him in the bath and he is looking super adorable...and then I hear a strange sound. Yep, poop (that fun seedy breast milk poop!) is now floating around his little tub. Then we get him out to change the water and I am holding him and he poops even more. He was definitely being a character tonight! Now as I do my laundry, he is happily swinging away looking up at his fish mobile. He just loves that swing!

I am HOPING for a peaceful, happy night for him (and for me and the nurses). Last night he had another unpleasant night and finally (after hours of crying) they calmed him down with some drugs. The medical team and I are completely stumped on what is going on with him! It all started when he got the fever so we are thinking it is a cold of some type that is causing him discomfort, but the only time he acts uncomfortable is at night. So then you are inclined to think he is just being a collicky baby...but it is definitely worse than that. We don't know! One thing we are doing is suctioning his nasal stents A LOT deeper (you should see how far down you can go - yikes!) to clean out his "boogars" more and hoping that at least makes his breathing easier.

I met today with the discharge exciting as that is to think about, it is still a long way away. However, they are starting part of the process now because it takes a lot of preparation. The first and most important thing we have been working on is finding an available quality home nursing agency in Bellingham. We have located one and I am meeting with them next week. There is a lot of training for those nurses here in Seattle from me and my current nurses to ensure a smooth transition. Max will most likely have nursing care 16 hours to begin with and then it will be reduced to 12 or so. The other "shifts" are mine...yikes! I feel pretty confident but there is still a lot of equipment to master. Additionally, if someone calls off sick or doesn't show up, that time will also be mine. So my schedule, as it does now, will continue to be focused solely on sweet lil' Max. :)

Keeping my fingers crossed for a good night...please Max feel good and sleepy!!!

And to everyone who has asked about my ankle, no it's not broken thankfully! I am no longer using the crutches (they were too annoying!)...just the ACE bandage and I am getting around MUCH better than last week! Impossible to keep your foot elevated while caring for a baby...but it will heal soon enough. What is funny though is my FAVORITE doctor broke his ankle this weekend and can't walk for three weeks! I am totally bummed! (and I'm sure so is he!)

Monday, September 12, 2005


The antibiotics seem to be working for Maxwell...hooray! Last night he actually slept through most of the night, which meant Mom actually was able to sleep some too...hooray! I am so relieved to see Max feeling good again. It has been a very difficult and trying few weeks.

The echocardiogram, as well as the spinal tap and numerous other tests, all came back negative for infection so we still are not sure what the source of the fever was. But thankfully it appears to be gone!

Woo hoo! Max has graduated OUT of his preemie diapers into big boy diapers...I am so excited! He now weighs 7 pounds, 6 ounces!!! He is really chunking up! Today I was teasing him that I could finally take a bite out of his thigh!!! Before it was just an his thigh is a main course! :) It's our little joke!

Unfortunately some of that is water weight, but he is probably at least 7 pounds, 3 ounces of solid weight! With his additional IV fluids and increased feeds, he was getting TOO much fluid. I noticed that yesterday when his diaper was soaked every hour...and then with a 3 ounce weight gain in a day, I thought hmmm...something is wrong here! And sure enough, the doctor and dietician had not discussed their different plans and today they got him back on track.

And I met with Max's dietician today (I schedule weekly meetings to chart his progress) and she is pleased with his weight gain AND growth. Despite all the challenges presented to him, he is using his calories wisely! Way to go Max!

Maxwell's new favorite activity is the swing. He loves it and stays in there for hours! So sweet to watch him enjoy being a baby...and not just a sick little guy in his hospital crib. Now of course it takes some manuevering in and out of there with all his tubes, IVs, etc. but once he is in there, he just relaxes and has fun.

In recent weeks, he has definitely become more alert and attentive to the world around him. I am so excited for the months to come and to have him home...someday! :) I cannot wait for him to be healthy and happy and simply enjoy the wonders of life...taking a nature walk together, playing with the dogs, or spending time with his cousins. What fun moments lie ahead for him! I keep reminding him that life will be a lot better out of the hospital...he just has to be tough and it will be all worth it!

Thanks again everyone for your warm is so amazing to come home to a mailbox full of cards with well wishes for Maxwell. Even more incredible is that a lot of the cards are from friends of friends of friends...the support for Maxwell across this country is absolutely heartwarming! I cannot even begin to tell you how much it means to have so much love and prayers directed his way...I am in awe. Thank you!