Archive for September, 2008

mornin’ everyone! our little magoo had such a great day yesterday. paul and i are so proud of how he is tolerating his tube and our hearts continue to soar because he is up to 8 ounces of formula per feeding. we really have unleashed the beast in teaching jackson what a full belly feels like. yesterday, while hooked up to his machine for an afternoon feeding, jackson also ate an entire jar of pears! last night, i felt like he was starting to grasp the concept of his sipper cup and got a few good swallows of formula from it. jackson also had two 2 hr naps, which has never happened before. paul and i are so encouraged. it’s amazing what a full belly can do! should these 8 oz tube feedings continue to go so well, we will be able to adjust his schedule slightly so that we can get rid of the 11 pm feeding. this would be so wonderful because paul and i are unbelievably over-tired. though our exhaustion levels are at an all-time high, jackson continues to show us what a big boy he is with his feedings, and we are hopeful. tonight we will celebrate jackson’s rachel’s birthday! we are really looking forward to hanging out with her and jackson’s billy and our other good friends.

it feels so wonderful to be home with our little porker magoo. he is doing really well at tolerating his tube feedings that i almost fear we have unleashed the beast in jackson… almost. a medical supplies van delivered the machine that dispenses jackson’s formula through the tube for him last night. (this van being in our driveway of course caused a stir amongst the neighbors who asked us if jackson was alright). paul took a couple of days leave from work to help me get established with all of jackson’s new gear at home, which is wonderful. we actually went out and ran some errands today, had a delicious snack at panera, and didn’t even worry about getting home for jackson’s next screamfest of a feeding. it’s unreal to me to know that we will be able to live a “normal” life with our son… doing things together, not having to hibernate and cry along with jackson while trying to force him to take a bottle. it’s really liberating. though jackson is 5 months old, his food refusal has caused us to live as though jackson is a 5 day old infant, with our sole existence being to provide nourishment to our child around the clock. right now, jackson LOVES his cereal and mashed fruit feedings… we do those twice a day, one in the morning, and one at his 3 pm feeding. while the machine is pumping jackson’s formula into his stomach, we spoon feed him either rice cereal or bananas. since he loves this whole spoon experience so much, the positive association of a full belly (thanks to the tube) with the fun pleasure feed should be an encouragement to him for when the tube eventually comes out. paul and i are working to figure out all of the logistics behind jackson’s feeding machine, cleaning it, etc… but all of that will come in time. bottom line… jackson is being properly fed, and man, is it ever good to be home!!! thank you for all of your prayers and continued emails of encouragement. enjoy the pics of our magoo enjoying being back home.

hi faithful blog readers!!! PRAISE GOD, our son has been fed for 2 days straight and it is an AMAZING feeling. as of today and for the first time ever, jackson will end the day having consumed 30 ounces!!! i cannot tell you how fulfilled my heart is tonight.
(i gotta keep this quick, as i just ran home to blog quickly and get some jammie pants).
i will post more details tomorrow, once we are home, but for now, i wanted to let everyone know what our plan of action is… jackson’s ng tube was placed yesterday morning. as you can see from the pics, it goes in through his nose, down his throat, and into his belly. jackson has two types of feedings going on right now… “pleasure feeds” and “tube feeds.” a pleasure feed consists of us orally feeding jackson using either a soft tipped sipper cup (neon green cup pictured) or an open mouthed cup (pink cup pictured). during a pleasure feed, we basically play with jackson while feeding him. he chews on teething rings for oral stimulation, sucks on his pacifier, and takes sips of formula from various sources. the pleasure feed lasts for 30 minutes. whatever jackson consumes orally is considered a victory, and then the remaining ounces are then given to him as a tube feed. the idea is that jackson begins to associate positive feelings while getting a full belly and eventually learn to enjoy eating again.
as of now, jackson will have his ng tube for 5 weeks, getting fed 6 times a day, with each feeding being spaced 4 hours a part… basically, we are doing a 7-11-3 schedule around the clock, minus the 3 am feeding. this will give jackson 30 ounces a day, which is WONDERFUL!!! with time, we will drop the 11 pm feeding too, upping the amount of ounces per feed to 8, and getting jackson 32 ounces a day with 4 feedings. (i know, it’s a lot of numbers, and i don’t do numbers).
our spirits are HIGH as a kite knowing that our little magoo goes to bed at night with a full belly. that is all that i have wanted for the last 5 months. jackson’s weight has maintained at 15 and a half pounds, only gaining 2 ounces over the last month… but, we have only upward mobility from here my friends!!! in time, i will be proud to change our magoo’s nickname to PORKER.
will post more tomorrow when we are home… enjoy the pics!!! (don’t let the tube scare you, jackson is the same goofy, playful, rollin’, quirky, smiley baby. he has no idea it’s even there. oh and also pictured is the infamous teri, jackson’s feeding therapist who rocks our world).

PARTY AT WOLFSON’S!!! we’re heading to wolfson’s children’s hospital (our home away from home) this morning. last night was probably one of the worst nights we’ve ever had with him. i honestly was waiting for DCF (department of children and families) to be knocking on my door. at one point, paul and i had to leave jackson in his crib and go in the backyard to collect ourselves… and we could still hear him screaming from his room, in the front of the house.
jackson has had 2 ounces this morning, screaming the whole time, and then he decided to refuse the cereal we tried to feed him as well… which is just friggin great… let’s now start refusing another method for eating. once that happened, i called teri on her cell and said “that’s it. we tried it your way, we’re now doing it my way. see you at the hospital.”
we are showering, packing, and blogging now. then we are off to our pediatrician’s office to do a final weight check before admitting jackson to the hospital. paul and i have lost our minds. we are not sane right now. i can’t speak for him, but given my current level of stress and exhaustion, one could say that i seem 1/2 drunk.
gotta go!!! my turn for the shower… then we’re off. will blog later from the hospital. if anyone wants to join us for jackson’s 5 month birthday party, call wolfson’s and find what room we’re in. ~

jackson had another very bad day yesterday (even with our zen environment)… as paul said last night, “we are beyond tricks and distracting him with toys.” while i know teri has jackson’s best interest at heart, i totally agree with paul. both he and i fear going through the weekend without a G-tube. our plan for today is to place a call to jackson’s GI specialist (the good one who wanted the tube weeks ago) and request that he admit jackson over the weekend and place the tube. we are going to jackson’s scheduled therapy appointment this morning to make teri aware of all of this. my heart tells me that she will support us not waiting through the weekend, knowing all that we have been through already. waiting cannot be the answer for us… it wasn’t when i was told to wait out jackson’s allergy and continue breastfeeding him, and it’s not now.
the emails are still so amazing to me and i am eternally grateful. words of encouragement put a smile on my face that seems so priceless right now. dc family (you know who you are) has written asking who they can contact for us, offering up prayers and their homes… houston family has written in the midst of hurrican ike damage to offer prayers and their homes should we head that way with our magoo. they have an oak tree splitting their house due to ike and still their support and kind offers are unwavering.
mom is still here and unwilling to leave until we figure out how this weekend will go… should jackson be admitted, she will most likely stay with us and help to relieve paul and i while living in the hospital for who knows how long.
we shall see, my dear dear friends… this is our reality for today. we will keep you all posted. i can blog from the hospital.
prayer is so grand.

alright, so we met with teri this morning. the session was typical, our frustration and exhaustion is typical, and things are just plain ol’ typical. we have decided to endure the weekend… this decision has come about with a combination of grammy’s willingness to stay through the weekend per doctor’s orders so that paul and i can get a full day break tomorrow (imagine!) and teri giving me her cell should i get scared. grammy said it best a few minutes ago when she told paul and i, “teri is asking you guys to have more patience and you have none.” soooo…. we are mustering up a little more patience, who knows where it’s coming from, but we’ll work to make it through the weekend. grammy will be here and is kicking paul and i out of the house. what an unbelievable gift my mother is… entirely selfless and unconditionally loving to us and to our son. she will help us immensely this weekend and we will decide early next week… tube or no tube…

me again. wanted to let everyone know that our session with teri today was good in that we got a little bit of a plan, bad in the sense that jackson barely ate… but that in itself was good because teri fed jackson directly today and so she experienced what a “typical” feeding is like for us.
we are no longer feeding jackson in our arms. he starts screaming the second that we move him into that feeding position. all of his feedings now take place with him in his car seat. we also go through a massage routine with him once placing him in the car seat. he has music playing and it is as “zen” as we can make it… lights dim… all together now, say “ommmm.” in time, setting the scene this way should help to keep jackson relaxed through the feeding. we feed him with a bowl and spoon of formula mixed with rice cereal… we feed him using a syringe… and then we eventually get around to putting the bottle in his mouth… and then all hell breaks loose and we have a “typical” feeding once again.
so all morning long, grammy and i were in therapy with jackson. he was exhausted, as we all were when we left around noon. he came home, slept for a while, and she and i have been trying to “ommm” feed him ever since. at one feeding he took 5 ounces… at another, 1 ounce.
paul will go with us tomorrow morning and get caught up on all that he missed this morning. teri mentioned the G-tube again, pending what the weekend brings.
please continue the prayers…