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WELCOME, GUEST |
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(2 members)
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James SooHoo6 |
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Jackie G6 |
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MAX'S JOURNAL
mcunnick |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | 2 | 3 | 4 | 5 | 6 | | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 |
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GRAVITY OF THE SITUATION
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Sep 29, 2009 06:45am (EST)
I have been trying forever to get ANY response from Max's pediatrician's office regarding the Synagis and flu shots that I requested long before October rolls over. When I initially asked those shots to be arranged at the beginning of October, His ped was super nice and he promptly requested his nurse to take care of it. Then weeks passed by without hearing anything. I called, called, and called. I have sent numerous messages to the Dr. office via phone or Dr's email account. Still Nothing, none, nada.
It is very typical for medical profession to remain silent ie no response when they don't have what the patient asked for yet or when the problem is too complicated for them to handle. The problem is that they do not understand that "No response" and "waiting" itself is what is even harsher on the patient or their family not the response itself that they have to deliver. If someone just could pick up the phone and tell, "sorry we had a problem here and there" or "sorry we don't have anything yet", then I could prepare for myself for what to do next and all the anxiety that I am having would be gone. Just say something!
The gravity of the situation involving sick childs does not feel the same from the medical profession's end as from the patients end. There is this big chasm between the two and I have to cross it for my child all the time.
Ahhhhhhh. I guess I will have to wait for a couple more days and if not, I will contact Max's pulmonologist or neurologist to find a way to get Synagis, cause they all agreed (including Max's ped) that it is vital for Max to get those shots.
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Posted by mcunnick | Comments: (5) | Permalink
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THIS LOVELY LIFE
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Sep 27, 2009 04:08pm (EST)
I finished reading a memoir of a super-preemie mom, Vicki Forman. It is called, "This lovely life". I don't know why I decided to read it, knowing it would certainly wake up all the ghosts of pain from the last year. But I did. It was utterly tragic and excruciatingly painful yet beautiful. There were so many sentences in the book, literally describing what and how I was dealing with during Max's 7 months NICU stay. Knowing what other people went through and could manage to live after comes as a strange relief.
During this weekend, we have tried to give Pediasure to Max. I don't think he is handling it very well. Our bedroom, car, and my hair all smells like the sickeningly sweet vanilla pediasure from all the projectile vomits Max had with Pediasure. It took a toll on both me and my husband who rarely gets frustrated.
Then, one day, we will put all these oxygen tanks, feeding issues, and developmental delays behind us. Even if we can't cure the issues completely, we will learn how not to be bothered by them and how to live beyond. I will know how to truly live this lovely life with Max and Jess. That much I want to claim that I had learned from the book.
Photo 30
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Posted by mcunnick | Comments: (3) | Permalink
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SEPTEMBER UPDATE
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Sep 24, 2009 05:26pm (EST)
Max is having so much fun at his daycare. I think he likes to hang around with other boys over with mommy at home. He continues to develop gross motor, fine motor skills, but with his own time. We are down to 1/16L of oxygen, which brings the next step of turning the oxygen off completely. We tried to turn off his oxygen for 4 hr last weekend and he did okay. Knowing that he can handle is comforting, yet we are trying to be very conservative about it.
His speech therapist and OT are working on transitioning him to solid food. So far it has been a VERY SLOW process, but he is improving bit by bit. His food intake has increased to 30-33 oz per day, but somehow his weight has been stuck at 17lb 15 oz for two months. I talked to a doctor at the BPD clinic at the Nationwide Childrens Columbus and he suggested to put him on Pediasure. I guess I will have to talk to his pediatrician about that.
I have been very busy getting used to working a full time job. It is hard to juggle the long commute to bring Max down to his day care, the shorter work time, all the dr's appointment, and my career. On top of everything else, the guilt that I am not taking care of him myself during the day and because of that he might not be gaining weight feels very heavy on my chest. My husband keeps commenting how difficult it is to talk to me since Max's birth as I am full of negative thoughts and negative comments. Maybe I do need help, I was thinking. Then, how would anybody overcome the sense of being lost and violated when your child is pulled away from your bloody womb without you realizing what is happening and then placed into the place where he/she almost dies every day for months after months. I am just trying to get by day by day.
Anyway, I did not mean to end this update with heavy note. Max is doing great in every measure (other than his weight gain) and I am truly thankful for that.
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Posted by mcunnick | Comments: (4) | Permalink
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CRANIAL BAND
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Sep 02, 2009 09:57pm (EST)
Max has been wearing a Cranial Band (DOC band) to correct his plagiocephaly (uneven flattening of his head). He needs to wear the band for 23 hr a day with an hour break a day during his bath and the band cleaning. At the beginning, he was sweating quite a bit and would develop red spots here and there. Now at 3rd week of the band wearing, he is not bothered by the band at all.
I guess this all "flattened head" ordeal started when Max extubated himself 4 times trying to move his head while on his tummy. He was banned to be on his tummy for a long time after that and while on an oscillator for 8 weeks his head was forced to his side forever. By the time he was free from a ET tube, he already got so used to sleep on his back, he did not want to be on his tummy any more.
Now I had mentioned something about him being on an oscillator for so long, I don't know how he or we did it. Heavily sedated, forbidden to move around, jiggling entire body with the vibration from the oscillator.... I can't look through movies or photos that were taken while he was on the oscillator as it tears up my heart.
Ah, I did not mean to ramble on the past. What I meant to say was that during 7 months in NICU, lot of things were done to save Max's life and to bring him home and that now we deal with the aftermath, what those long months in NICU stay brought to us, not necessarily his prematurity itself brought to us. I just regret that I did not do a better job at preventing some of those. I simply thought that things would correct themselves overtime once we are out of NICU.
I don't know why I am rambling on and on for just a helmet. After all, it is kinda easy fix compared to all the things that we have to go through to overcome the aftermath of premature birth. I better go and sleep. Thanks for listening.
100_2827_2
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Posted by mcunnick | Comments: (8) | Permalink
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UPDATE
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Aug 06, 2009 07:26pm (EST)
Max's aunt Joan and her family were visiting from Iowa and we had so much fun together. Aunt Joan played baby soccer with Max and read books to him with all the animated sound effects. Max loved it.
He has now 4 teeth. His eating has been pretty good, so we managed to cut down the calories of his formula from 27 kcal/oz to 24 oz. He is getting better with his solid as well. For three days, I gave him little bit of rice+carrot porridge in turkey broth. He did pretty good, which made me wonder whether he liked a bit of seasoning in the porridge rather than bland baby food.
We took him to the Cranial technology in Paramus NJ for his brachycephaly evaluation. He has been on his back for so long and his head is quite flat. Unevenness of the head has been much better, but his head remained flat more less. So, we are getting him a cranial band aka helmet. We will fit his helmet on Aug 14, so we will see how he tolerates it.
He started a day care designed for special kids with medical needs. It is staffed by people with medical background and, in fact, most of care givers used to be long time NICU-PICU nurses. The day care provides a shuttle pick up and drop off service and they are licensed to give kids medicine, breathing treatment, even NG tube. They also have on site PT, OT, and speech therapist. Kids have to be referred by their doctors and approved by medicaid. Today I brought him there for a half day and Max had a blast. He ate well, blow (or exchanged) raspberry with one of older kids, played well, and enjoyed his walk outside. I was a bit nervous about the whole day care thing, but somewhat relieved to see how well he fitted in. I will be taking him to the day care for half day three days next week, and then go back to work on August 17.
He will be a year old on August 12. I don't know what I am going to do for his birthday other than having a studio photo shoot for Max and baking a cake for him. It feels almost surreal to think that we all survived the year together.
Reading a book with Aunt Joan
Playing with Aunt Joan
playing soccer with mommy
Smiling at daddy
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Posted by mcunnick | Comments: (1) | Permalink
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