Status Updates‎ > ‎


posted Oct 19, 2010, 4:02 PM by Sean Molby   [ updated Oct 19, 2010, 4:05 PM ]
Ok, so I didn’t get this in yesterday like I said but to be fair…I AM REALLY BUSY! J

The past week and a half has been interesting to say the least. Like I mentioned last post we ALL ended up sick last week and that was a challenge all in its own. For now we are all on the mend. I am still trying to get caught up on sleep as between Ella and Tristan I only managed to get about 3-4 hours total per day for the last week.


We have been trying to lower the amount of times T gets fed during the day and so far it hasn’t been working out so well. We are not sure if he is having a problem with the volume or if he is having withdrawal issues still. Very frustrating not knowing! To try and figure out which it is they have now ordered him to be on continuous feeds all day long. Not much fun for T as it limits how much activity we can do with him as he tends to spit up with a full stomach-not as much as when he vomits for what ever reason, just normal baby spit up amount whenever he does anything with activity. It makes me feel bad; I wish he could just enjoy being a baby for once! He has already been through so much L but he is still a trooper and is generally in good spirits; smiling and laughing and (baby) talking all the time! He has still vomited with the continuous feeds but I am supposed to give it 2-3 days and he still has a day left.


Tristan has discovered something absolutely amazing in T-land LOL he has now discovered his hands- a little later than most kiddos but he finds them completely fascinating and stares at them for hours on end…it is the cutest thing! He is starting to keep his hands open most of the time instead of fisting them up, I am hoping he won’t revert back to fisting while he is in the hospital this time. He is doing a little better and moving his legs but still keeps still most of the time.


He had is home nurse visit yesterday. He is now 17 pounds 7.5 ounces and is 26.5 inches long. He is growing so well and is right on target for his age still being about 50% in the national average for both weight and height! She was happy with the way he looked. Said everything looked good-color, profusion, capillary refills, blood pressure, soft tummy, ect. She had no immediate concerns, which was good to hear.


He had his first home PT-post surgery today (we had to cancel ALL of our appointments last week with everyone being sick), it went pretty good. She was very pleased with his development especially considering that he has only spent 2 ½ months of his 6 ½ month life out of the hospital. She was impressed with his head control and his tolerance with being worked with. She is anxious to really get going and for him to start getting stronger- (Aren’t we all!!!)


His next OT session is tomorrow and boy does Nicole have her work cut out for her. J T is still refusing to let anything in his mouth aside from his own hands. Although I have caught him off guard a couple of times when he was dozing off to sleep, if I can time it right he will suck on his pacifier for a few minutes then! So I try real hard to catch him at those times-he still however will not hold it on his own in his mouth like he used to. They did a real number on him at the hospital this last visit-being intubated over and over really took a toll on him! L We will have to see what kind of magic his OT is capable of!

No news on surgery yet. I spoke with his cardiology nurse practitioner for about an hour and a half yesterday but still no idea when surgery will be. I requested a meeting with his surgeons so that we can get some more info but I have yet to be contacted. The original plan was for this new surgery to be on the 25th of October but being that is less than 6 days away now I am kinda hoping not! –For those that missed the last update on this, Tristan has to have another open heart by-pass surgery so they can go in and remove whatever is obstructing his left pulmonary artery (it is completely blocked but luckily he has formed collateral veins to supply blood to his left lung, without those he most likely would have died) We are supremely nervous and worried about this upcoming surgery mainly because we don’t have any info on it and it has only been 8 weeks since his last open heart by-pass. We are scared and stressed and trying really hard not to show the kids. Don’t know if that is working. I am not looking forward to sending the girls away to relatives for an unknown period of time, AGAIN nor am I ready to let them take my baby boy back to do yet another extremely invasive surgery. I just pray and hope that he remains as strong as he always has and that he will pull through this with as much ease as his first surgery!


As soon as I get some more info I will do another update, if only a brief one. Thanks again to EVERYONE for all of the love, support and prayers! 

-oh on a side note I have had several ask where to take their donations for Tristan’s fundraiser garage sale- Francine is having the sale on October 30th the sale will be in Lawrence at 807 E. 23rd St. #K, Lawrence, KS 66046 (The Midwest Diversified Building-you can google for directions) you can drop off donations to her there or if you live in Missouri, I guess you can bring them to my house-just email me or facebook for my address. Thanks again to all who donated- we REALLY appreciate it! ♥Christy