In Loving Memory

Jackson Anthony Wilson

09/25/2010-11/26/2010

We would like to thank everyone who prayed for us and our little guy.  It has truly touched us to know so many people care and love us so much. There is going to be a memorial service at the Fleetwood Church of Christ it is at 15935 Katy Freeway (I-10) Houston Tx.  It will be on Monday 11/28/2010 at 11 am.

11/17/2010

We have had only a few changes today. Colton has graduated to level two NICU which is great, but now there are split up between two places. They are continuing to go up on his feeds by one cc, and so far he is doing good with that.  Today he weighed 4 lbs 6 oz!  Jackson was doing great maintaining his blood pressure on Dopamine at 9 mcg, but the doctors think by getting his pressure a little bit higher he will have better urine output.  He had a set of blood cultures drawn today to make sure there is no underlying infections.  One of the spots they drew blood was his head and he is contiunily draining fluid from it, so much they are measuring it.  He did have one really wet diaper earlier in the day but it was after a dose of lasix, so that could be why.  We are hoping that he will continue to have diapers like that without the lasix. They started him on what they call trophic feeds, which is just a small amount to coat his stomach.  Today he had pedialyte at half a cc an hour, and maybe tomorrow he will get milk. 

11-16-10

It has been a rough couple of days for Jackson. We ended up giving him the high dose steriods again last night to hopefully bring his blood pressure up. This morning he has had slight improvement because he is at 16mcg on the dopamine and his bp is stable. The doctor thinks a 5-6 day course of the dexamethasone is the way to go and try to finally get him over this or at least get him on the right track. His urine output is still low but improved from yesterday. The higher his bp is the more perfusion his kidneys get and the better they work. Hopefully we get bigger wet diapers today. They started elevating his head 45 degrees so the swelling is going with gravity and his little legs and feet are so puffy. I can't wait to get all the fluid off him so he can be comfortable again. He is still doing well with his oxygen until he has a procedure done. He was on 33% with the nitric at 5 when I called last, but they are about to do another eye exam so expect it to be up when I get there. We are just praying the steriods help this time so our little guy can get better. Colton is doing pretty good but he has been slowly going up on his oxygen from 25% to 50% at times. His Monday lab work showed he is anemic and that can be the cause of him needing more oxygen. They are going to check labs again on Thursday to see if he needs a blood transfusion. The dr is giving his body a chance to come up on his own but if it doesn't then he will get the transfusion. His oxygen this morning was at 35% through 1 liter on the nasal cannula, so that's not too bad. They are going to try to go up on his feedings today to 30cc every 3 hours and hopefully he can handle it. He lost 6grams last night so he still weighs 4lbs 4oz. He should also have his eye exam today as well or at least they have always done them on the same day in the past. So far the results have always been the same with no ROP but because of their age they always check them again in a week. So hopefully week number 4 is the same!

11/13/2010

Well it's been an eventful last couple of days to say the least.  Jackson's blood pressure is back down and he is on dopamine again at the max dose of 20 mcg.  They had decreased his steroid dose a couple of days ago and think that may be the reason so they went back up.  This set back has had us a little bit worried and hopefully things will get better again soon.  He had another head ultrasound which showed the bleed in his ventricles is still stable, so no change is good news with that.  His kidneys are once again on the sluggish side and that is related to his blood pressure so hopefully as it comes up so will his urine output.  On a good note his oxygen requirement has been way down as well as the amount of nitric oxide he has been requiring.  The doctor actually said his x-ray this morning was the best one he has had yet.  They have added another medication called ativan to help sedate him more.  When he gets irritable he drops his oxygen saturation and the ativan seems to calm him down where he doesn't do this as bad.  Colton is doing OK.  The first bottle feed went well but his two last ones are showing he's not ready, so we are going to hold off for another week.  Babies don't know how to eat from a bottle until 34 weeks anyway so we are not to worried about it.  They are 7 weeks actually today but only 33 weeks 5 days corrected.  The stress from the feeding caused him to have quite a few apnea and bradycaria episodes earlier today but when we called a few minutes ago the night nurse said they had settled down.  He is doing great with growing and today he is 4 pounds and 3 ounces.  A really sweet nurse did his foot prints in his baby book for us and they are so cute!  He has continued to do well on the nasal cannula and all his other vital signs have been stable too.  So than other than getting stressed out by the bottle it has been a good week.  We have been told many times the nicu is like a roller coaster with many ups and downs this week has definitely proven that!

Thursday, November 11, 2010

Today was a big day for both of the boys.  Colton got off of cpap and went to the nasal cannula!  He is tolerating it very well.  He also had his first bottle today and drank the whole thing.(which surprised the doctor!)  They took the tube that used to feed him out of his mouth and put one down his nose.  For now he is only having one bottle feeding a day and the rest through the tube, so he doesn't get too tired or stressed out.  In the future when he is having more bottle feedings they will also use the tube to give him what he can't finish so he will still get all his nutrition.  He weighs 3lbs and 15oz today.  We also found out that tentatively his surgery to reverse his ostomy is set for the first week in December.  They will do a test before to make sure everything is ok.  Jackson got reintubated this morning with a bigger et tube.  He had a large air leak that was preventing him from getting ventilated properly.  It went well and proved to be a good thing because he has been on a lower setting of oxygen all day and his heart rate is not dropping when he gets upset.  The swelling is still on our problem list but we know it will get better with time.  The infectious disease doctor stopped by today and said things look good.  He did say that about 48 hours after his last dose of antibiotics he will order another set of blood cultures.  He wants to make sure the antibiotics are not hiding a bigger, badder bug which he said happens rarely but still wants to be on the safe side and check.  So today was full of changes for them and they did great!

Colton's first bottle feeding

Passed out after a long day!

Resting well and saving energy to get better

11/10/11

It's Wednesday night and the boys are doing good.  Jackson has been good on his blood pressure the last couple of days (yay).  His heart rate has been in the normal ranges except when he gets messed with, that boy can throw a fit!  He got a dose of lasix today to help with getting the fluid off his body.  The infectious disease doctor came by today and Jackson will be done with his antibiotics in four days.  His creatinine level was good this morning but his albumin levels were still low, so the doctors are still working on getting that up. The doctors believe once his albumin levels are normal he will stop retaining fluid. He was on a lower percentage of oxygen for most of the day today.  Colton had a good day too.  His nurse worked on getting his oxygen down and he was at 28 percent most of the day.  The doctor went up on his feeding amount he didn't tolerate it well. He had to much output from his ostomy, so he went back down to the amount he was at before. While we were visiting Tabitha was changing his diaper he decided to pee on EVERYTHING! The sheets, his snugglie, his clothes, his socks, his blood pressure cuff, his frog sandbag, and his mommy all got it! So he made a lot of laundry for mommy tonight but she doesn't mind. We asked the doctor if he knew when they plan to reverse his ostomy and he is going to talk to the surgeon tomorrow. That's about it for today and we pray for the improvements to keep on coming.

November 9, 2010

So today was a pretty good day for the boys.  Jackson is totally off the dobutamine and on the minimum dose of dopamine.  They are only leaving him on that to help profuse his kidneys better.  His creatnine level was a little elevated this morning which will prevent him from getting the much needed lasix when his blood pressure is totally stable.  So the doctors are working on fixing that and we hope for better numbers in the morning.  He is still very swollen and I can only imagine how uncomfortable he is.  They have increased his morphine drip to try to help him through this rough time.  His oxygen varies from hour to hour.  All the extra fluid they poured into him when his blood pressure was so low has made him have pulmonary edema.  This also will be fixed with the lasix when the time comes.  He is hanging in there and we are happy for the improvements so far.  Colton is doing good on the regular cpap with his oxygen only at 30%.  The doctor is talking about putting him on a regular nasal cannula when he gets to 25%.  I know he will be so happy to switch the bulky tubing and long nose prongs out for the little nasal cannula.  The doctor is also talking about starting to bottle feed when he gets on the nasal cannula.  Mommy held him again today and just can't wait to get to do the same with brother.  So far so good with the protein addition to his milk.  He now weighs 3lbs 13oz and is almost getting too long for some of his preemie clothes!(which we don't mind one bit)  We don't know Jackson's weight because being on the occilator prevents them from weighing him and also all the extra fluid would make the numbers not be a true weight anyway.  The time will come for that though and we are not worried.  We thank the Lord every day for our precious boys and know they are in great hands.