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July 12th

posted Jul 12, 2010, 7:21 PM by Sean Molby

***!!! HAPPY 3 months and 5 days TRISTAN DRAKE!!!***

 

First off, again, I AM SOOOOOO SORRY that there has not been a post in such a long time but to be fair to me I have been beyond extremely busy… so be forwarned this is a LOOONG posting!!! J

 

To start with, Tristan is doing AMAZING!!! The doctors are very happy and even more shocked at how well Tristan is doing at home. He is now, as of this morning’s home visit 11 lbs 6 oz and 24 ¼ inches. He is gaining an average of 1.5 ounces per day! Their goal is only ½ to 1 ounce per day. When he was born he was 7 lbs and 18 ¼ inches long so in the 2 ½ months in the hospital he only gained a little over 1 pound and 2 inches. His last day in the hospital he was 8 lbs 8 oz and 21 ¼ inches, so in a little over 1 month he has gained nearly 3 pounds and 3 inches, so you can see how much better he is doing at home!

 

His oxygen saturation levels are still pretty good. They remain in the low 80’s/upper 70’s. They will lower naturally as he grows which is what is expected, the 1st surgery is only expected to last a few months. They anticipate that his next heart surgery will be somewhere between late August and October-but definitely before RSV season starts. For those of you that don’t know his 2nd surgery is his most dangerous, normally it is the 1st but he did not have the traditional Norwood-he was not stable enough to survive it- he had the Hybrid which is less invasive for a 1st surgery which makes his 2nd surgery even more of a risk than the traditional Norwood because they have to undo the Hybrid, then do part of the Norwood and all of the Glen. (these are the names of the surgeries if anyone is interested in googling them for info), I refer to his 2nd stage as a Nor-Glen which the doctors have found humorous and accurate so that is the unofficial new name for it at the hospital. J His color still remains really good. He is still his normal, abnormal pinkish color, as usual, he defies all odds. (Statistically a heart baby is a pale bluish/gray color, Tristan, however, usually has the coloring of a normal healthy baby).

 

Tristan had his first GI follow up visit last week and she was speechless at how much he has changed. She said she was prepared to argue that there was no way he would be ready for another swallow study and oral feeds but she was astounded at his developmental advancement and said she honestly didn’t know how he would do. She is leaving it up to occupational therapy, which his first appointment with them is July 20th, but she did say that if he was her baby, just because of the risk involved, she would wait until after his 2nd surgery to do anything orally (only because any lung infection or damage would greatly reduce his chance of a healthy recovery-oral feeds if he aspirates could cause him to develop pneumonia).  She has switched feeding formulas for him from Elecare, which is $50/can and costs us an average of $400/month to feed him to a less basic formula, Nutramigen. It is only $25/can so that cuts his monthly feeding cost in half. He will most likely be on that for a month and then we might be able to start introducing breast milk again, so I am still pumping and remain on the restricted diet.

 

For those that didn’t know there is still the possibility Tristan has a breast milk allergy and since he was diagnosed with NEC (necrotizing entercolits) he was started on an extremely basic formula- it is already broken down so all he needs to do is absorb it-no digesting necessary. The Nutramigen is still fairly basic but not fully broken down so he will have to start digesting some, this will lower his weight gain slightly since he will burn calories to digest his food but he should be fine. Because of his possible allergy I was put on a restricted diet so that when we reintroduce breast milk he hopefully will do okay. The diet consists of removing dairy, soy, peanuts, tree nuts, eggs, and wheat products from my diet which basically means all I can eat is animal meat that is usually just cooked-no flavoring aside from herbs, and then raw fruits and vegetables, since most cooked ones only taste good with butter. I get to gradually add each restricted food group in and then based on how Tristan reacts to it we should be able to see what triggers his allergic reaction. I have now added wheat in so I am only restricted from eggs, peanuts, tree nuts, soy and dairy products. It is still really hard and frustrating but on the plus side I have lost TONS of weight which is nice. But I REALLY, REALLY miss chocolate! J

 

He is now taking 95 ml of formula every 3 hours which is up from his original 75mL/3 hours and he is up from 20 calorie formula to 24 calories, which is partially why he is growing so well….he is a little piggy. He will probably be up to 100 ml by the end of next week because he is getting fussier right before his next feed again!

 

There is still debate over him getting the G-tube. Sean and I are both a lot more comfortable with him having the surgery now that he has had a chance to recuperate and grow some but we do not want it if it will even remotely affect his ability to recover easily from his upcoming heart surgery. The GI doctor said she would like to wait until after his 2nd heart surgery since he is doing so well with the NG feeding tube and with the possibility that he will do fine with oral feedings by then. The heart surgeons are still pushing for the G-tube surgery so we really don’t know what is going to happen there. The GI doc said she was going to call his cardiologist and discuss in detail and length the pro’s and con’s of it and then they would present it at the next heart conference- which is held every Friday and then we will get to talk to his cardiologist about it at his next cardiology appointment scheduled on July 28th.  So there will be no news about that until then.

 

Developmentally Tristan is above and beyond what they expected. He is developmentally age appropriate and according to “statistics” he should not be- you see now why I don’t believe too much in statistics! He is smiling and laughing, and loves to make cooing sounds and bubbles with his mouth. He holds his head up and can actually pull himself forward in his car seat and swing, when not strapped in. In fact he finds that quite humorous until he realizes he is stuck with his head by his feet because he can’t pull himself back up just yet. He has not yet rolled from front to back or back to front but they are not too worried since the normal age range for rolling over is 3-4 months. It would help if he didn’t scream like a banshee like he usually does when placed on his belly which I cant allow him to do because it is too hard on his heart; but he still has time and if he doesn’t make that milestone when normally expected it is really no biggie especially since being in the hospital he should be more developmentally aged at 1 month instead of his age of 3 months. He starts his home occupational and physical therapy next week so that will help as well.

 

He has become rather spoiled and does not like to lay or sit with nothing there to entertain him, so I have been searching for different mobiles and such to help stimulate him when he has to lay down for his feeds and such, it has been hard to get much done cause if he gets to crying too hard I have to hold him to calm him down so that his heart rate won’t get to high, he has learned rather quickly the results of crying so he gets held a lot more than necessary but I don’t mind. Not getting to hold him for the first month kind of makes it not so hard to hold him all day now.

 

For now things seem to be going very well. He has weekly home nursing visits, a weekly call from a special case nurse through our insurance company, and for now, weekly occupational/physical therapy home appointments. His cardiology appointments are every 3 weeks, his pediatric appointments are about every 2 months, his GI appointments will be every 3 months, and his neurology assessments will be every 6 months. Our days are exceptionally busy but well worth it to have him home. Since I am telling you everything else I will give you a description of a typical day in our home:

 

6:30 AM                overnight feed goes off/flush his NG tube (Sean usually does this)

7:00 AM                Tristan wakes up-diaper change- I sometimes get to take a shower and get ready for the day at this time-but not always J                           

7:45 AM                start 8:00 feed (make 24 ounces of formula, warm up 95+ ml’s, check   feeding tube placement, reprogram feeding monitor for the day, start feed)

8:30 AM                feed goes off/flush line

9:00 AM                give morning meds(1/4 tablet aspirin, .3 ml lasix, .4 ml digoxin, 1 ml zantac, .3 ml mylicon)

9:15 AM                Ella usually wakes up-so change her diaper and feed her breakfast

9:30 AM                Tristan: change diaper/change clothes for the day, Ella: change clothes, brush teeth, do her hair

10:30 AM             art time for Ella

10:45 AM             start 11:00 feed (warm up 95+ ml, check placement, start feed)

11:30 AM             feed goes off/flush line-diaper change

12:00                     lunch time

12:45 PM              try to get Ella to lay down for nap (has not worked so well lately-it usually takes me 1-2 hours to get her to sleep)

1:45 PM                start 2:00 feed (warm up 95+ ml’s, check placement, start feed)

2:30 PM                feed goes off/give .3 ml mylicon/ flush line-diaper change

3:00 PM                theoretically Ella wakes up from nap- but not so much so lately

3-5                                       snack time somewhere in there J /  outside play for Ella

4:45 PM                start 5:00 feed (warm up 95+ ml’s, check placement, start feed)

5:30 PM                feed goes off/flush line-diaper change-   start making dinner

6:00 PM                dinner / do the dishes

7:45 PM                start 8:00 feed (warm up 95+ ml’s, check placement, start feed)

8:30 PM                feed goes off/flush line

8:45 PM                bath time for Ella and Tristan

9:00 PM                give evening meds (4 ml Phenobarbital, .3 ml lasix, .4 ml digoxin, 1 ml zantac, .3 ml mylicon)

9:15 PM                get Tristan ready for bed / start getting Ella ready for bed

10:15                     start Tristan’s overnight feed (warm up 270+ ml’s, check feeding tube placement, reprogram feeding monitor for the night, start feed), place O2 probe and turn on oxysimilator (saturation monitor), turn on Angel monitor (it is a SIDS monitor that alarms if there is no respiratory movement at least every 10 sec, change his diaper again and swaddle him up for the night. (It is really important that Tristan cannot move his hands and night, if he were to pull out his feeding tube during a feed at night it could kill him)

 

I usually get to sleep myself somewhere between 11 and midnight. At some point during

the day I try to spend some time with Briahnna and then I also have to find time to get the

basic house cleaning and laundry done-not as easy as it sounds. Occasionally we get out

and go over to grandma and grandpas so the girls can ride the horses and just get out of

the house. My goal is to start going on walks everyday even if only for a few blocks so

that Ella and Briahnna don’t feel so cooped up. Briah has spent quite a bit of time with

my parents and also my sister so that she isn’t so bored and she has had a few friends

over to spend the night too. On top of all this we are trying oto potty train Ella and get her

to sleep in her new room-neither one is going too well. But basically this schedule is the

reason I really have not had time to post. I started typing this one at around noon and as

you can see it is finally getting posted around 7:30..  J Overall, as I have said before,

despite the busyness everything is wonderful. It is amazing to have my family together at

home and to see Tristan doing so good. So keep praying that everything keeps going so

well.

 

P.S. Tristan IS allowed to have interaction with people so if anyone would like to come

visit just let me know. I wouldn’t recommend just stopping by as we do have a lot of

appointments ands so we are not always home. Thanks again everyone for all of your

love, prayers and support!

 

 

 

 

 

 

 

 

 

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