Today's goal is to get him off the oxygen so he can get out of the PICU and onto a regular floor. He stayed on 0.5 liters all night and did not desat. When I came in this morning he sounds a little junky like he needed to be suctioned. He also has developed a rash on his right cheek, lip, down his neck, and on his abdomen. The PICU doctor agrees that it looks like cold sores. They are going to start him on meds for that. I feel bad he gets it from me. I remember getting my 1st cold sore when I was 4 or 5. My mom gets them...then me...and now Ava and Jacob. They always show up when your body is stressed. I had them nearly nonstop once the babies were born and the weeks before. I always tried to be careful, but apparently they have been passed on :-(
Saturday, July 30, 2011
Today I am having a lot of anxiety. We decided to walk to the other end of the PICU to look at the view. You can see Tampa Bay from the window. Most of the doors are open and you can see the patients. Before we even got to the window you could hear the noise. It sounds like a yard sprinkler head ticking very fast.Jack and I look to the left and there lay a baby probably around a year old or less laying in bed intubated and swollen and attached to a high frequency ventilator. My heart just wanted to hit the floor. His/her parents were sitting on the couch. Knowing the raw emotions they must be having at that time just broke my heart. Parents should never have to worry if their child is going to live or die. There is an older girl across the room from Jacob. She is trached and so is the baby down the hall from him. The girl looks profoundly handicapped. I hear their ventilators making noise all day...I used to be able to tell you what every noise on the ventilator meant.....seems so long ago that I to had a child dependent on those machines....542 days ago to be exact.
Praising God that Jacob is not that sick....probably not even sick enough to be in the PICU. Just having to sleep in a Ronald McDonald House, hearing the vents go off, dealing with Jacob being on oxygen, and fearing that the next time he aspirated could be his last breath has my nerves all over the place. I can't sleep and I want to stress eat all day. That is not working out very well at the moment since I am spending my car payment money just to get by while we are here. Oh and the helicopter landing all the time does not help either.
To push all my sad stories aside I have someone I would like those who read to add to your prayer list. Her name is Brandi. She is actually Christine's cousin. She is a patient at the mother baby hospital here. She is 27 weeks pregnant with a little girl. Her membranes have been ruptured for a few days. To top it off they found out yesterday that SHE HAS 2 BRAIN TUMORS! They are pushing her to deliver the baby so they can operate on her brain. Today she is 27 weeks 4 days. I went and visited with her today and listen to her talk to the neurologist. I showed her pictures of my 28 week babies and told her their story. They "guaranteed" her that the baby would be okay.
I love to believe that everyone has a happy ending, but you know I have a hard time with that these days. She is in denial that the baby may not live, that she may have special needs etc. I feel so bad that she has to be in this situation. She has a 9 year old and a 3 year old at home with her husband. She is 26. They are not sure that the tumor is cancer..and seem pretty optimistic that everything is going to be "okay". I have not talk to this person in years...honestly I really didn't like her....but people change. She appears to be a good person and a good mom. My heart aches for her. Hoping for the best for her.
I really don't like Ronald McDonald Houses. I don't know why they bother me so. I guess it is knowing that nearly every adult here has a child or family member in the hospital...some dying. Pasted a mom on the way in tonight who appears not to have slept in days. She had a bag of clean laundry with NICU pillow covers...the white things that go on the body positions with the colored hearts all over. I have some serious NICU POST TRAUMATIC STRESS going on these days.
I feel like Jacob is back in the NICU right now. Trying to ween of oxygen again. The anticipation of going home and then he desats again. Today they had to up his oxygen to 2 liters again. I miss my other 2 babies! Also the feeding thing...remember when your baby 1st started getting food? They would up it a few cc's at a time until they were on full feeds. That is what Jacob is doing right now. Every 6 hours they add 2 more oz until he gets to 8. The nurses keep him on his back a lot. I am afraid he will vomit when no one is around. So right now we are still trying to ween oxygen. They say his lungs sound good and we are trying to get him back to full feeds. Still don't regret my decision to have his tonsils out..I think it will benefit him in the long run...and for those who judge me...until you have stood in my shoes BACK OFF! WOW that was a lot to try on a cell phone touch screen lol
NO MORE ISSUES WITH RESPIRATORY DISTRESS IN THE LAST 24 HOURS. He is still on oxygen. They tried to ween him off last night but he desated. They are going to try and feed him today. He seems like he is in less pain. He is watching the movie Bolt right now.
Friday, July 29, 2011
Jacob is still in the PICU. He only desats when he needs suctioning (this brings back major flash backs of Logan desating and getting suctioned). He has been sleeping a good part of the day. Jack and I left for a few hours to buy clean underwear and cloths :-). They have 3 Ronald McDonald's Houses here.1 of them is on the 1st floor of the doctors office part of the hospital. Totally awsome! They had an opening and we were able to get a room until Jacob goes home. It was nice to get a shower. Jack is at the RMH washing our other cloths. Andrew and Ava are home with Christine....unless my sister went and got them. Jacob is on an antibiotic called Zosyn...he has developed a rash to it. He is only on 1liter of oxygen right now. Sucks we can see the bay from the hospital window...wish we were on vacation at the beach instead of hanging out in the hospital. This has really scared me...I don't know if I need to push for the nissen to get done when he is better. I hate having to put him through pain...especially when some people already judge me for having his tonsils and adenoid out anyway since this was an "elective" procedure that has now landed us in the PICU...just thought maybe he would enjoy breathing through his nose instead of being congested and snorty all the time.
Jacob had a decent night, but he has not slept well...mainly due to them running a bunch of tests. He is on a nasala canula at 2 liters. He is keeping his oxygen levels in the mid-90's. They are trying to ween his oxygen. They are giving him antibiotics for aspiration.
Trying fro my phone. Jacob had his tonsils and adenoid removed yesterday and he came home later that night. He was doing fairly well. He woke up in pain almost hourly last night. Today he spiked a fever and vomited around 2pm. Shortly after his breathing became very labored. I took him to the ER. He ended up requiring oxygen. After several hours he had vomited 4 more time. They found that he had aspirate into his left upper lobe of how lung. His oxygen levels dropped low. He ended up requiring a lot of oxygen and they almost had to intubate him. His carbon monoxide levels were elevated to 58 normal being 35-45. They said he had impending respiratory failure...they decided to transfer him to all children's hospital about an hour away. After 3 hours of continuous nebs and lots of functioning he stabilized. About 10 minutes ago we watched him lift off in the helicopter. We are driving to st. Pete now. He is on a nasal Canada now at 2 liters his oxygen was back in the 90's and his co2 is 34. He is going to be in the pediatric intensive care unit at all children's. Thanks for your prayers.
Tuesday, July 26, 2011
I was worried that they would take vision therapy from us...but the therapist seems to think we are okay. Even though the low vision doctor does not seem to think that Jacob has cortical visual impairment....I have the doctor that has been following him since the NICU that says he does...so if anything I have that on my side. I like the vision therapy...it is very similar to occupational therapy and she brings toys with switches that are very easy for him to operate.
Jacob has surgery tomorrow. We have to be there at 530 in the morning unless they call and tell us something different. I hope by having his tonsils and adenoids removed his overall health will start to improve. Hopefully he will be able to BREATH without difficulty again and start swallowing! Please keep us in your prayers. I will update everyone tomorrow on how the surgery goes.
On a side noted I have called Depart of Children and Family reguarding Jacob's medicaid status ATEAST 400 times...and this is no joke and have yet to get ahold of these people in the last 2 weeks. Any suggestions outside of all the evil thoughts in my head. :-) I can't even access the stuff online...keeps telling me the info is not correct and now that is locked out too. :-( My van is fixed :-) $350 later now just have to go get it from Groveland.
Thursday, July 21, 2011
Today we drove to St. Pete to see the pulmonologist. She was happy that he was not wheezing and that he has been fairly unsick. She thinks it is good that he is having the tonsils and adenoids out.
He sees the low vision doctor tomorrow.
Wednesday, July 20, 2011
I stole these pictures from my sister's facebook. Sadly I haven't even posted Ava's birthday pictures. I suppose I should go back to her birthday post and post them there. :-P It has been another year it is time to print my blog again Yay!
|Andrew LOVED all the attention!|
|Andrew enjoying the pool|
|The boys' cake|
and Logan's bear. Yesterday we took the bear to his grave.
|My sister Patricia falling off the slide LOL|
|The train of kids going up the slide. Tricia took Andrew down it several times. He loved the slide.|
|Singing happy birthday to my babies|
|Blowing out the candles|
|Andrew and his cupcake. He carried it around for about 45 minutes :-)|
|Andrew playing on the super awesome sprinkler pool thing yesterday. This is one of the boys gifts I got from Target for their birthday|
|Ava, Andrew, and Savanna|
| My sister Tabetha falling off the slide|
Monday, July 18, 2011
|This was the big day!!!|
|Baby C: Andrew William 2lbs 8oz 15.5 inches long|
|Baby B: Jacob Ryan 2lbs 7oz 15.5 inches|
|Jacob Ryan just over 27lbs and 34 inches tall|
|Baby A: Logan Christopher 1lb 14oz 13 inches long|
|This was taken 1/22/11 8 days before he died.|
|Logan's Birthday Present...I like it so much I kinda don't wanna give it to his grave...maybe I will only leave it for a few days.|
|Andrew and Jacob's Birthday Shirts|
|The back of the boys shirts|
Wednesday, July 13, 2011
Life is just getting so hard right now. Now, on top of everything else that is broke, or needs to be paid...the van broke. I think the alternator is out. Everything that is power including the radio, the digital mileage display, brake light etc were flashing and you can hear the van sputtering for lack of any other word to describe it..and I have no way to pay to get it fixed.
Christine even left yesterday. The stress and anxiety in this house is so high she left to get away from the "stress" said she is staying at her mom's house to "unwind." She claims it is not me, but I'm still offended. I feel like no matter what I do I can't win. I try and I try and nothing seems to go right. Apparently I am not allowed to be down or depressed. I guess I did not hid my feelings for a few days and it just hurt everyone else even more. I guess I am not allowed to wallow in my own self pity not even for a day. So I prayed. I prayed hard. I asked a friend for some guidance. I didn't even go to church tonight like I planned because my sister was coming over with her kids. I was excited. She NEVER comes over and the kids were spending the night and I have not watched them in probably more than a year. The kids were all excited to go swimming tomorrow.
So all was going well. Jack was napping when she arrived. The kids went out side to play and jump on the trampoline. Then after awhile Jack woke up and was in the kitchen the kids came inside wanting these frozen ice things. I told Jack earlier that we were watching my 2 nephews and my sister's "grandson". Well, Jack apparently did not hear that...so like a charm Jack bust out with "Who's that Fucking Mexican fellow there." and points at him. My sister spins around and smacks him and tells him not to say that and he SAYS IT AGAIN. This of course offends my sister and this 8 year old little boy. Jack stands their dumb founded apparently not even realizing why anyone is upset. Long story short, I find my sister out in the car crying and next thing I know she has the kids pack all their stuff up and they leave. My kids are crying because they are leaving, her kids are crying because they have to leave and in the end their is a hurt little 8 year old boy that did nothing wrong. My husband swears he did not say that and is now ranting around the house because it turn into an all out fight. I'm crying, kids are crying, my sister is crying and gone. He says he said "who's that little Mexican feller there" the point is we don't walk around saying "who's that little white boy or who's that little black boy?"I guess he could not just say "Who is that?" So, my sister who is protecting her children and her "grandson" LEFT. So, once again I have not done anything wrong and because of my husband's big fucking mouth me and my children have been punished. This is not the 1st time my husband has made a hurtful comment that left my sister packing her kids up and leaving or just not bring them over at all. To top it off he is ranting around the house turning it all around that my sister left and is "punishing his children" etc... Like I said I can't win. So, I missed church and my kids are not getting to enjoy a sleep over with their cousins...all because of my husband does not think before he speaks...then he always swears he did not say what ever he said.
On a brighter note. Jacob has been fabulous. No vomiting in a few days. He is alert and happy. He was in the pacer today with the physical therapist and took 10 STEPS in a row on his own. He also did well for the vision therapist. We put him back in the pacer when the early interventionist came and he took a few more steps with her. I love when he does so well. He is getting better with his head control and trunk control. I don't know if I mentioned it already, but I had to mail back the Charleywrap to New Zealand. She is going to readjust it so it fits him better. Argh! So with shipping this thing has cost $538.
Andrew and Ava are fighting over crayons right now. My walls and changing table have been nicely decorated with Andrew scribble. Jack and Alex did a good job sweating their butts off getting the yard ready for the big birthday party on Monday. I spent most of the day cleaning the kitchen. Tonight or tomorrow I have to tackle the living room and bathroom. Trying not to let tonight's negatives get to me. My sister said she would bring the kids over tomorrow to go swimming. She did not want to leave them here after Jack's comment because Jack will have them tomorrow morning. I work for 4 hours in the morning. I think I am just going to get the kids ready and head to bed now after I nice long shower. :-)
Tuesday, July 12, 2011
|Stearns Kids Puddle Jumper Basic Life Jacket|
This is what Andrew wore today. So far (besides it being a little to big) I would give it an A-. I believe it is meant from 30-50 pounds. Andrew is about 27lbs. My only complaint...prob because he is a little small for it is that it kept slide down off his chest while he was out of the water and he was able to pull his arms out. Tomorrow hopefully the pool will be nice and clear so we can test it out in our pool.
Monday, July 11, 2011
I found myself flipping through some facebook pictures as I lay in bed. This picture just hit me like a ton of bricks. His last and 1st Christmas. I can see his presents at the foot of the blanket. I don't have very many pictures of him looking directly at me. This one just pierced my heart. I get so wrapped up in my worries for Jacob and my own self pity these days that my heart sometimes forgets how bad it aches for him. I wish so badly that everything was different. Why can't I be celebrating 3 healthy 2 year olds birthday next Monday. There should be a 3rd crib in my house! I wish I could take the last 2 years back and have a do over. I wish my family could be happy and whole again. It has been almost 2 years since their birth and nearly a year and a half since his death. I don't think we will ever pick up all the pieces and put them back together.
Friday, July 8, 2011
Jack and I had everyone ready and fed by 8:15 and at the speech therapy office ON TIME by 8:30. Go us! We had an appointment with the ENT doctor in the same building at 9am. We ended up having to wait in the lobby for almost 45 minutes with 3 very cranky kids until they called us back. By then Jacob had fallen asleep. This was good because I wanted him to hear how bad Jacob sounded even when he was asleep. I pointed out he has not been sick in a while. The vomiting has been significantly less and he was still very congested and his tonsils are always huge. He agreed that it was time for them to come out. We made an appointment for him to have them removed July 27th. He will more than likely spend the night in the hospital. I'm very nervous about this surgery. I worry for complications and I worry that he will get sick before it is time for him to go. Oh, they are also taking the big skin tag off his right ear.
This brings me back to the whole insurance thing! Ugh! I don't understand this medicaid stuff. One minute it works and the next time it doesn't. Apparently when it was rant before the 5th it was expired then suddenly on the 5th it was good again. I called the home health people back and they tried to run it again. They said in the medicaid system that is shows that it is good for only today. She gave me the number to call to our local medicaid office. I finally got a hold of someone after about 20 attempts at calling and it saying their call volume was to high and to call back later. The lady I spoke to was absolutely no help! She looked him up in her computer and it showed that his benefit expire at the end of the month! WTH! I just don't get it. I asked the lady why? and I was told I had to call DCF. So, I call that number and once again go the message saying call volume was to high. At this point we had arrived at our next appointment so I gave up. I will have to call again on Monday. I also have spoke with several people who work in health care that have told me about different medicaid programs special needs kids are in. I was told by an old co-worker that there is 1 that I pay $20 a month and medicaid covers everything. HECK I would pay $50 if I did not have to deal with the uncertainty if it is there or not!
The up side to all of this is at least his insurance is GOOD until the end of the month. That will cover the $175 in co-pay for the week of their birthday and it will cover his tonsil and adenoid surgery. Praise God for him providing for us this month. We will see what next month will bring.
Our last appointment of the day was at Shriner's Hospital in Tampa. Jacob had his AFOs finished and got and abduction pillow for his hips for when he sleeps at night. It took up about 2 hours there. I had no idea there would be so much waiting to pick up AFOs. They put them on him, drew on them, and took them back off. They left the room for 30 minutes or so to cut them down to size. Then he had to wear them for 20 minutes to see if their were any pressure spots. Of course their was and then the guy was gone for another 20 minutes to fix it. Then the guy came in to fit him with the abduction pillow. It also had to be cut to size.
Between the ENT and Shriner's appointment we went to Target. We picked up one of Jacob's prescriptions and I let Jack pick out some toys for the boys for their birthday. We finished off the gift card that was given to us by another blogger. Thank You again! I can't want for the boys party!
After we came back from Tampa Jacob and Jack got hair cuts and we got dinner. Now we are home. I am hiding in my room with my kids. I am so very tired and just can't handle much more anxiety. 830 needs to come quick so I can put the kids to bed and hopefully get some sleep myself. I work for the next 2 days.
|The new hip abduction pillow|
|Jacob's hair cut|
|Jacob's AFOs they have trucks on them :-)|
|Jacob playing with his switch toy. I love it!|
Wednesday, July 6, 2011
The new vision therapist brought Jacob an awsome new toy. It is a switch that he can grab and make a spinning light ball turn on and go around in circles. This is the PER FECT thing for him because he LOVES this kinda stuff and now he can make it turn on by himself. He has more control over his right hand and actually grabs ahold of the switch pretty good and makes it turn on. Sometimes he knocks the switch out of his range and needs a little help, but I can honestly say this is one of the 1st times I think he is doing something "on purpose" :-) needed something good to happen this week ang God delivered. :-)
|Jacob looking at me all cross eyed|
|Ava's battle wounds from being at my sister's house for the weekend. She got hit in the face by a wooden swing by her "husband" Calob aka my sister's best friend's son.|
|Andrew hogging the drink LOL|
|Mmmm chicken nuggets|
Baby Jacob looks so tired
The kids watching the fireworks
Tuesday, July 5, 2011
Do you know the week of his birthday Jacob has 5 doctors appointments and they are all specialist. The co-pay for specialist is $35 so yeah that is $175 alone in co-pays. We have planned this big birthday party for the kids..I might have to charge admission to pay for the water slide. LOL For someone who has depleted their savings trying to stay afloat and currently has umm about $13 in their bank account...it really sucks. All I want to do is take care of children and spoil them! I want to give them the things my parents couldn't do for me .That is why I went to school right? I guess it is time to start cutting off luxuries. On top of this news I got a bill collector call from the GYN office that took out my IUD in January...where I was told it had to be surgically removed...and when they opened my cervix in the OR it just FELL OUT! Yeah! I already paid them $500-600 just for them to removed supposed "embedded" IUD. Now they are wanting another $121. So, she set up payment plans for me. I REALLY DON'T WANT TO PAY IT! I should just change to a different doctor. My husband also owes his doctors office over $100 and he can't get in to see his MD until it is paid. It freaking sucks that I pay hundreds of dollars every month for private health insurance and you still have to pay so much out of pocket....not to mention my need for dental attention. I need my teeth cleaned...it has been way past due. My husband too! I think I have a cavity in between 2 teeth and a few weeks ago I broke a tooth that had a filling in it doing a NO NO by trying to open something with my teeth. Maybe Jack and I should quit our jobs, let our teeth rot out and move to some section 8 housing. WTH! Maybe we should stop paying our mortgage then we will know we will have at least a year of "free rent" before we are forced to leave right?
Jacob's pulmonologist called with the results to his immunity lab work. She ran test to see why he keeps getting sick .Apparently none of his vaccinations are where they should be. Some were low and others were like he never received the vaccines...I called the pediatrician's office and the nurse seems to think that maybe they tested for the wrong ones...the pulmonologist wanted him to be referred to an immunologist?? If that is the case that would make 12 doctors that Jacob has. The pediatrician's office wants to see the labs before we make any referrals.
The icing on the cake. We just had our septic tank pumped for the 3rd time in 1 1/2 years about 2 weeks ago..it is full again, the drain field is clogged and it was quoted about $3000 to replace it. Anyone have $3000 I can borrow. Hell maybe we will just get some buckets with toilet seats on them and bury our crap in the back yard literally. Litter box? Hmm shower in the water hose. Take our cloths to the laundry mat. I dunno. When it rains in pours turds!...at least it does in this house.
What the hell did I ever do to deserve everything that has happened to me? I try not to question God, his reasoning, or feel sorry for myself...but seriously can I at least catch a break and win the lottery or something...can someone buy me some lotto tickets please?
Thinking that having spontaneous triplets was such a blessing then the Twin to Twin Transfusion, the premature birth, 6 1/2 months of NICU, Logan dying, Jacob's mysterious massive brain damage, ruining my credit when I could no longer afford the payments after constantly having to take time off work...hell maybe next week I will get something saying the credit card companies are suing me...then I can file bankruptcy. The few good things I had left helping us the $52 a month in SSI turned into an $800 debt...it was a blessing not having to pay co-pays for Jacob for the last 2 years and now I have to endure this expense to.
I stopped taking all my meds because I figured I didn't really need them and didn't want to pay for them...and I wanted to have another child...I don't think that will be happening any time soon. Might just have to shoot myself if I got pregnant....will practice abstance LOL Then I would have to find away to pay $1200 to deliver the baby and another could thousand to save the stem cell cord blood so we can use it for Jacob one day. I am shaking not litterly, but inside like when you are so mad that you want to punch something. I feel like that all the time. I have had people that say their is places out there to help appeal the medicaid thing etc..but I honestly don't even have the energy to want to do. I feel my self spiraling down hill fast. The weight is on my shoulders. It is "my job" to deal with this stuff and I'm just not good at it. I wish I could be one of these moms that could do it all. Sparkling clean house, work, advocate for their child, raise money etc....I follow blogs of wonderful moms and dads that have done tons of fund raising to raise $30,000+ to get stem cell therapy done on their children. I'm not that creative, I'm not that organized, and honestly if I was motivated I wouldn't be fat. LOL I feel the need to start smoking period, hell chain smoking would be good...then I would have to afford that too, popping large quantities of pills. If I did not love my family so, I would just quit and walk away. That would not be fair to anyone. I guess we are all in this together, but I'm really tired of this ride. I used to feel like I just sailed through life without anything super good or bad happening to me and I liked it that way...staying off the radar is just fine for me. Now I feel like people are throwing turds at my face.
I hate feeling sorry for myself...because I know things could always be worse. Be greatful my husband and I both have jobs, a roof over our head, food blah blah blah.
I feel bad for Christine and Alex...their car got repoed today. Alex is still trying to find a job. Christine seems to be doing okay. I think she wrote a blog yesterday click the button on the side of my page and check it out. I haven't even had a chance to read it yet.
JESUS CAN YOU PLEASE COME SOON! NOW WOULD BE GOOD I'M READY!
Sunday, July 3, 2011
Just as I thought I was doing okay medication free, I suddenly have the urge to take up smoking so very badly. My husband would totally kill me if I ever did, but my parents are chain smokers and that is what I grew up learning. Stressed? Light one up! Ugh! You know when you are so angry you are just shaking inside? That is how I feel A LOT! I'm not angry...well sometimes I am. I just have so much anxiety and I really just need a nice long break...maybe I can go visit the crazy house at work. I would totally be content sitting in a strait jacket in a padded room taking lots of nap time. I think the jacket would be nice and comfortable. Just like on TV. hehe.
It is just been a very stressful couple of weeks. There has been some good, some aggravation, and a lot of stress. I hurt my back last Wednesday. It was so bad that I had to go to the ER to get relief and be like all the other people that come in there. So the back pain had me out for the rest of the week. Then I had to work in pain all weekend. Tonight my back is still sore, but not near as bad. There is just so much I feel needs to be done and I can't do it all myself and I feel like no one around me is helping get it done..though they are. With 10 people in 1 house it is near impossible to keep the house spotless, but I find myself so agitated when it is not clean. My room is the WORST. Nearly every pair of cloths Jack, the kids, and I wear is laying in the middle of my bedroom floor waiting to be put away. Everything feels so cluttered and dirty. I feel like I am living in utter filth when in reality the house is not that bad. I feel like I have to be the one scrubbing the corners of every inch of my house. That it is my job. I feel so angry when things are not clean even though my lazy ass helps make the mess, watches my kids make the mess, and frankly I hardly get off my butt and scrub anything. Ha Ha...but does it count that I mentally really want to. I want to PAINT. I say this all the time. Honestly I don't even want to spend the extra time cleaning things the way I want it clean because I feel like the next day it will be trashed again. I spent HOURS cleaning my bathroom a few weeks ago. I actually half ass scrubbed it...today you can't even tell its been cleaned in years. :-(
Andrew and Jacob's Birthday Party is just 15 days away. Though the very generous gift from a fellow blogger I was able to go to Target last night after work and buy some things for my children for their birthday. Thank You so very much for this gift! Your gift was such a huge help to my family.
Jacob has been on pureed "home made" formula baby food etc for 9 days..today would be 10, but he as at my sister's and I did not make any for him on Sunday. I think I am figuring out the right balance of food and calories for him. I feel nervous and happy all at the same time about this decision. 1st I wonder if the "real food" is really better or worse for him than taking Pediasure or Vital Jr. I know he is getting as many calories as he needs, but is he really getting everything else his body requires? I believe he is, but part of me feels like I am doing the wrong thing because it is so common to just give g-tube fed children pre-made formula. Plus because I have started this without the guidance of a professional etc. He may be getting 2 many calories. Before he got 240cal 4x a day assuming he did not vomit which is only 960 and his current blend is 1166.
Tell me what you think...this is what bis formula consists of: the (...) are the approximant calories
2 cups Lifeway Kefir Whole Milk with live probiotics (300)
1 cup 100% fruit juice (120)
2 tablespoons of olive or canola oil (240)
6 tablespoons of Gerber DHA & Probiotic Cereal (60)
2 6oz Jars of Stage 3 baby food with meat (puree down to liquid) (240)
1 2oz Jar of pureed meat (40)
2 4oz Jars of baby food veggies (80)
2 4oz Jars of baby food fruits (80)
1 ml Enfamil Poly-Vi-Sol Supplement with Iron
2 table spoons Apple Cider Vinegar (4)
1166 calories total
Split into 4 feeds
After last feed I run water over night at 20cc an hour.
He has vomited 1 time since he has started this feed and OMG it is so NASTY!
I found this recipe on the internet from another parent that g-tube feeds their child that is around the same age as mine. I altered the recipe a little bit. I was going to try it for a month.
Even though I never cook healthy wonderful meals nightly for my family, by preparing Jacob's food it makes me feel like it is special...like it is going to help in some way even if it really doesn't. All I know is it stinks and when he burps I am sure probably misses his vanilla formula.