What a long day

I got up early and went to Children's hospital today because Ian was supposed to be transferred this morning. The mediflight team must have had a busy day because they didn't show up until almost 6:30pm to take him back to his old nicu. He's back "home" and the nurses were all smiles, saying "good to see you back". He was sooooooooooo fussy it was insane. He just kept getting mad and screaming and throwin his arms around, raisin his body off the bed. They increased his pain med back to what it was at the other hospital to see if that would help.

This morning (at children's), i arrived and he was mad and screaming and i could actually hear noises from his screams and asked hte nurse if his tube was still in place because he shouldn't be making noises. She said it was fine, then he started gagging occasionally, then his color turned grayish and his oxygen levels began falling into the 50's... the ditzy nurse finally paid some attention and after another nurse walked in, she said "maybe he's extubated" and a whole crew came in and reintubated him. While they were getting the stuff together to reintubate him, the NP was bagging him and when she'd lift it off, he was screaming and crying and i actually finally got to hear him cry. Sad to say it was nice to hear (not under such circumstances, but still nice).

So all in all, he's back "home" to his old nicu and hopefully will settle in nicely. The mediflight team gave him a cute certificate saying he's a "flight partner" (even though he actually went by ground in an ambulance with the mediflight staff on board) lol.

Transferring back to the old hospital :)

After ALOTTTT of thinking and praying and weighing the odds, we have decided to have Ian transferred back to his "home" nicu now that he is doing so well. He will remain there until his next surgery at which time he will come back to Children's Hospital. The Dr's and NP's have assured us that he is safe for transfer and safe to be cared for at the home nicu and if anything were to happen emergency wise, he'd just be immediately transferred back to Children's with no problems. Everything seems to be going good for now. His wounds from the incision dehiscing are smaller today and he's off of 3 of the antibiotics, pain med is cut in half, and his vent settings are much lower (same as posted yesterday). He is 4lb 11oz, such a big cuddly boy :) Held him again today for 2 hours. The nurse gave us a few outfits he can wear there that are like little t-shirts that open down the front for easy access to his abdomen and iv's and stuff. So our little guy will be taking his second ambulance ride tomorrow. I hope we are making the right decision, but i do feel much more at ease about it now than last week so i think we are.

The Most Amazing Feeling

I've been aching to pick Ian up and cradle him in the crook of my arm so much lately because he's getting so big. Tonight, i got my wish. The nurse said "are you ready to hold him?" and i said "i've been ready forever". She then snuggled him up and put him in my arms! Not kangaroo care, a regular hold which was awesome cuz i could see his face. It was truly amazing. His warmer has been turned off since 7am this morning and he has maintained his temperature while snuggled in a blanket which is a big improvement for him. They have also decreased his ventilator settings over the weekend, the peep (pressure in the lungs on expiration) from 8 to 6 and the total assisted breaths from 42 to 20 which means he's doing alot more of the breaths on his own. My strong little guy. I never thought i'd be holding my own lil one like that. He's like looking down at a newborn since he's now 4lb 1oz :). My little man is just not so little anymore. Ohhhh and he had an outfit on for the very first time tonight.

Such a doll!

Ian was looking around today and it was just too cute! Here are a couple of pics and there is a video below this blog.

Tooooooo Cute!

He's not red like in this video. The video was taken without extra lights on because his eyes had just been dilated for the opthalmologist to see him.

Frustrated!

Went to see Ian tonight and so i decided to look at his incision and make sure it was still doing well. He now has 2 areas where the incision has opened and left big open wounds with drainage. What treatments are they doing? NONE! The nurse said the surgeon came and checked him today and said everything looked good. He wrote "nice viable pink stomas, some edema, no concerns". NOTHING about 2 open wounds. They even covered one with the ostomy wafer and it looks aweful! I had a NP come in and look and she just blew me off saying "well there's nothing else we could do anyway, he's already on antibiotics. Maybe they could get a wound consult or something".... MAYBE????? Why do these people not address anything until i raise hell about it???? This poor lil guy just can't catch a break! I feel so bad for him, it's just one thing after another and he still has so much more to go through. It's just not fair for him. I'm headed to bed so i can get up early and go try to straighten things out tomorrow.

Monday, January 21st, 2008

Not a whole lot to update today. I'm thinking maybe that's a good thing :)

Ian remains on the conventional ventilator and they've reduced his settings some the past couple of days. His blood pressure continues to hold steady without medications for it. He does have a small grade 1 brain bleed between the hemispheres. They say it's very minor and should cause no problems. It's most likely related to the Nitric Oxide that was used last weekend. But, without the Nitric, he probably wouldn't be here and so the minor bleed was well worth keeping him here. He still has swelling but it is way way decreased from what it was. The nurse this morning said "he's 3 times smaller than he was a few days ago when i took care of him". I thought by the looks of him, he'd weigh less today but he still weighs 4lb 14oz. I wonder what he'll look like and weigh when allllll the swelling is gone. His incision is healing well and his ostomy is putting out small amounts (not much at all) but that's normal because he's not getting any feeds...just tpn/lipids. He was opening his eyes and smiling at his daddy last night.

Ian's looking better!

Ian is starting to look so much better. He's down to 4lb 14oz today. He still has swelling, but it's continually diminishing. Tonight they changed his ventilator setting to a diff rhythm. He was overbreathing the machine and so with this new setting, he can do much more of it at his own pace. He's still holding his own and doing well. He's on Fentanyl for pain, Synthroid for hypothyroidism, TPN & Lipids for nutrition, Occasional Potassium for hypokalemia, 3 antibiotics, and other routine iv fluids.

He had some poop from his jejunostomy today and drainage from his mucosal fistula, as well as a poopy diaper. These are great things... Maybe everything is going to start clearing out so his lil intestines can begin to heal and move the blockages on through.

He was in a bad mood part of the day yesterday and kept throwing a tantrum. At first it was because he needed suctioned. Then he kept getting mad, so i put my hand on his feet and his head and hummed a song to him and he calmed down. UNTILLLLL the u/s tech came in to do the head ultrasound and he was NOT happy about that lol. I'll add a cute pic of him mad and screaming lol. Can't wait to hear the screams out loud :)

Friday, January 18th, 2008

BACK ON THE CONVENTIONAL VENTILATOR!!!

Ian was put back onto the conventional ventilator today. He was breathing over the oscillator and not allowing it to do it's proper "duty". He's already trying to show up the machines! lol. They figure he'll do much better on the reg vent. His blood pressure is still doing good. The nurses are finally wearing gloves and gowns and being more careful. We've had some good nurses the past couple of days, so that's great. They did an ultrasound today of his head. He has a small brain bleed now. We are waiting on the dr's results to find out more about it. He never had a brain bleed prior to now on u/s's and it generally shows up in the first week after birth. But, one effect from Nitric Oxide is that it can cause brain bleeds. But, without using the Nitric Oxide, he wouldn't be with us today. So, we'll take the lil setbacks and deal with them as they come :)

Thursday, January 17th, 2008

UGHHHHHH! This hospital frustrates me! I went back up to the hospital to see Ian last night before i went to bed. His oscillator settings were almost doubled, his Pain meds were increased, his blood pressure was sky high and he had an arterial line in. I had only been gone a few hours! They never called me to say he was declining, never asked to place an arterial line, nothing! I asked the nurse what was new, and she said nothing, he was fine. So, i asked for a Dr. or NP. The NP informed me that the alveoli in his left lung had collapsed and they had to increase the setting to open them back up. The nurse kept saying that his blood pressure was only high due to her messing with him... but i was there for hours and it stayed high the whole time. The nurse also never put gloves on to mess with him again. When she went to lunch, i asked for the charge nurse, but the other nurse wouldn't get her for me and said she'd take care of it herself. Whatever! I was afraid to leave because the nurse working with him seemed to blow everything off and was too busy chit chatting with others who wandered into his room. They also wouldn't turn him off of his right side due to "leaving his left side up will open that lung"... so this morning, the left lung is better and now the right lung's aveoli are collapsed. His blood pressure is still on the high side of normal but nothing like it was early this am. I came home to sleep a few hours but kept waking up and just couldn't really get alot of sleep so i went back to the hospital. I will have to admit, he had a good nurse today, she was sweet and took good care of him. I did ask for the Director of Nursing today and spoke with her about my concerns with the other nurse from last night and requested she not work with Ian anymore. The DON said she cannot guarantee that. Whatever! I stressed to her that my main concern was that most of the staff including the dr's and surgeons weren't wearing gloves when touching Ian and he has been critically ill, has infections already, and has an incision with 2 new open stomas. I had placed a sign on his bed (colorful with stickers to not look so pissy) that said "Please don't make me sick, WEAR GLOVES". It was a gentle way to get my point across. Today, the sign is magically gone off of his bed and nowhere to be found. These people are really pissing me off. They are so stupid with the way they care for critically ill babies. I'm tired of repeating myself to them. From now on, when they reach in to care for my son without gloves, i will snap a photo, ask their name, stop them, and point them to the gloves. Maybe physical evidence of their lack of concern will scare them into wearing gloves and being careful with my baby. This stupid OU hospital is for the birds! I swear, when he is better enough to wear clothes, i'm buying tons of Orange and black OSU preemie clothes to keep him in until he's out of soonerville hospital LOL. (I'm not a sports fan, i could care less... It's just to make a point LOL).

So, as of now, his blood gasses are better and b/p is better and he's in the hands of a good nurse named Marsha, so I came home to relax for awhile and go back up later this evening.

Oh and on the upside!! He is much less swollen this afternoon than he was at 4am when i left. YEAH!

Wenesday, January 16th, 2008

Ian remains very swollen today at a whopping 5lb 2oz. His blood pressure was running lower than it should be today and his urine output had decreased alot so they put him back on the dopamine which will increase his blood pressure and also increase kidney function. His blood gasses fell out of normal today and so the ventilator settings now had to be increased a bit. Overall, he's still stable and still moving around. He's so swollen still that he is a lil chunk and he looks so sturdy i just wanna pick him up and cradle him in my arms. I can't wait for them to get the swelling off and get him better so he can feel better and go "home" to our regular nicu. Here's a pic of him from today....This is after getting about 1 1/2 pounds of fluid off him (they had gotten over 2pounds off but he gained back 1/2 pound overnight.

Ian's surgery

On Friday, Ian was transferred to another hospital for surgery to his abdomen due to the NEC (necrotizing enterocolitis) getting worse. He had surgery that night. the surgery results were bad. When they got in there, they found that all of his intestines had been fused together by the infection into one large mass. Every time the surgeon tried to separate them, they fell apart (he said they were like wet tissue paper). He found almost 1ft of intestine at the base of the stomach that he routed to the abdominal wall (jejunostomy) and routed the other end portion to the abd wall as well (mucosal fistula). Then, he closed him up. Now we have to wait and see if his body will heal teh intestines and strengthen them so that in about 2 months, they can try surgery again to separate them. Until then, he'll not be able to be fed anything. If they are able to fix his intestines in 2 months, they will do so. If the damage is so severe, that it cannot be separated, then the only option would be a bowel/liver transplant. The surgeon says this is new and not quite perfected yet, so we'll pray his lil intestines heal well and are able to be fixed. It's so scarey to not know what may come ahead.

During the night after the surgery he was was having low blood pressures and his blood gasses were coming back bad and they had him at very high settins on the oscillator (a type of ventilator). I stayed until 4am saturday morning with him, then came home to catch a couple hours of sleep. (This nicu will not allow you to fall asleep in a chair at the bedside, or stay anywhere in the hospital). I got home and went to bed, then received a phone call around 9am from Ian's doctor. He said "we've been working on ian for quite some time now trying to get his oxygen levels up and his blood gasses up, and his blood pressure will not come up either. We have him on 2 meds to increase his blood pressure and are giving fluids but it's not coming up. I am going to give an albuterol treatement to see if that will help open up his lungs but i don't think it's going to help and i do not forsee a good outcome. I don't think he will make it much longer". I jumped out of bed and we raced to the hospital. I called the neonatologist on the way there and asked "can't you try nitric oxide" to which he replied "i guess maybe we could try some". We go to the hospital and ian was in very poor shape. They started the INO (nitric oxide) and slowly his oxygen levels began to rise. Over the course of the day it was a struggle to keep them up and to get his blood pressures up. The dr's then put him on an epi drip to help with his blood pressure and it immediately made an improvement. The blood gasses remained poor but he was still alive!!! I stayed around the clock and fell asleep in the chair for a couple of hours (which is against the rules, but that nurse didn't kick me out *smile*). They say he was in shock from the surgery.

Sunday his blood gasses began to improve, his blood pressure remained stable with the 3 meds.

Monday: They weaned the Nitric oxide completely off! His blood gasses were beautifully normal! His blood pressure stayed perfect and they even stopped 2 of the 3 b/p meds. He's stabilizing out!!!

Tuesday: He remains stable!!! He's now off of all b/p meds and holding his own! His blood gasses are staying perfect and they are weaning down his oxygen and his oscillator settings. He's also now off of the paralytics (to keep him paralized while he stabilizes). Today he is moving his lil arms and legs around a bit and he even opened his eyes and looked around occasionally. (as much as he could because he's still very swollen). They have gotten a lil over 2lbs of fluid off of him in 2 days now!! He's was swollen huge and he's still very swollen but nothing like he was saturday and sunday. They took the catheter out tonight and he's still urinating well so far. Here's praying our lil man keeps on getting better!

Please continue to pray for Ian to heal and get better! I appreciate all of you already praying for him. Thank you for everything!

January 8th, 2007

Ian continues to have MRSA in his lungs. He remains on the oscillator and his oxygen levels fluctuate due to pressure from fluid (edema) as well as his distended abdomen.

He has NEC (necrotizing enterocolitis) which means he has an infection/inflammation of his intestines. This is closely monitored because it can lead to a perforation or rupture of the intestines, or cause a portion of the intestines to die calling for surgery to remove that portion. The NEC is causing multiple other problems at this time: His blood count keeps dropping so he is getting transfusions. He is retaining alot of fluid and has gained alot of weight due to that. He is 4lb 2oz today as compared to 2lb 8oz a week ago. He is currently getting synthroid to assist his thyroid because due to his prematurity his thyroid isn't functioning as effectively as it should. (Transient Hypothyroidism of Prematurity).