March 31, 2010

WEDNESDAY, MARCH 31, 2010 1:05 PM, CDT

Ok, we finally got Liam's test results back. The lumbar puncture was fine. The EEG was abnormal - confirming he did have a seizure. The good news is he hasn't had any "break-through" seizures since starting the seizure medication. The doctor said when they have seizures this early, they normally grow out of them unless there's some sort of abnormality with the brain which Liam doesn't have - according to the doctor. He is getting another blood transfusion today and they started an IV in his scalp...Anyway, his o2 seems to be a tad bit more stable today and he is coughing up and they're suctioning out all kinds of gunk from his lungs and it's turning more yellow/cream colored - which is an improvement from the brown mucous they were getting. So, that's all we know for now.

Oh, and he's a thumb-sucker! Even with the ET tube, trans-pyloric OG tube, and the other tube in his mouth, today he is still managing to shove his thumb in his mouth!

March 30, 2010

TUESDAY, MARCH 30, 2010 9:53 AM, CDT

Say an extra prayer for us if you can. Liam continues to drop in his o2 sats. The night nurse noticed (what I noticed and mentioned yesterday to the day nurse) that every time his o2 drops, he's got twitchy/jerky movements going on and early this morning, they apparently were very rhythmic making the nurse suspect he was having a seizure. So, they did an EEG this morning and have started him on seizure medication. We should have the results of the EEG back this afternoon or evening. The doctor came in and talked to me when I first got here (I'm in the waiting room right now while the doctors are doing bedside rounds) and told me all this and said they're postponing taking him off the vent, for now.

Oh, and I almost forgot - they're doing a spinal tap on Liam today to make sure he doesn't have meningitis, which can cause seizures

TUESDAY, MARCH 30, 2010 9:31 PM, CDT

We won't be getting any results tonight. It's a little frustrating about not having results of the lumbar puncture (spinal tap) back - but, I guess, like they said, it won't change anything because they're already treating him with strong antibiotics. The EEG is more understandable because we were told it might be this evening or even tomorrow because there's only one Pediatric Neurologist in Springfield - and he has office hours, so he can't read tests (i.e. EEG) until after those hours unless it's an emergency - and, there again, they're already treating him with seizure medications (phenobarbital and Ativan (lorezepam)), so there's no real rush for the results today.

Liam had a really unsettled kind of day, again. He was jumping from one extreme to another with his o2 sats, which resulted in him having his ventilator turned up twice. When I left, he was also on 40% oxygen and the vent settings were up to 30 (# of breaths the machine is taking for him) and 25 (pressure) - a big set back for him.

March 29, 2010

MONDAY, MARCH 29, 2010 9:45 PM, CDT

Today was not as great as the past several days. The good news is that they're planning to take Liam off the vent in the next 24-48 hours. The bad news is he has pneumonia again. They also did an ET tube culture, blood culture, and PICC culture today. Though we don't have final results (or preliminary ones for the blood & PICC cultures), the preliminary results of his tube culture were positive for some kind of antibiotic resistant bacteria, so he is getting 2 different antibiotics right now - vancomycin and gentamicin. I'm hoping the other two cultures come back negative!

He was also very unsettled today. He bounced back and forth between sats that were too high and sats that were too low. The too-highs are good - meaning the amount of oxygen he's getting, or the vent settings, need to be lowered. The too-lows aren't good. He had no middle ground today - when I say he bounced back and forth between the extremes, I mean it. He also required very frequent suctionings today. The nurse did say he seems to finally be settling down when we called a little while ago.

March 28, 2010

SUNDAY, MARCH 28, 2010 5:14 PM, CDT

Today has been another good day for Liam. Dr. Sison has decreased the rate at which the vent breathes for him and started him on caffeine (which helps him remember to breathe) to get him to breathe more on his own. So far, he is doing pretty well with out-breathing the vent. Whereas before they wanted him NOT to breathe for himself, now it's a good thing. He is tolerating the CPT pretty well, too, though he does NOT like it.

The BIG news, though, is that Dr. Sison is saying they're hoping to try him OFF the ventilator sometime in the next couple of days and try him on CPAP (like people with sleep apnea use) which will keep pressure going to his lungs so he doesn't have to work so hard to keep his lungs open.

We still can't hold him, though, right now. The only thing that's stopping us is the UAC line. Once that comes out (again), we can hold him - even if he's still on the vent. I'm also being very cautiously excited about he possibility of coming off the vent, too, because he's being watched VERY closely for pneumonia, right now, because he's having lots of brown-tinged mucous when they suction him....praying he doesn't end up with pneumonia again!

A few other things I forgot earlier:
Liam came off the phototherapy again, today. He also had his first poopy diaper...so hopefully the phototherapy light is gone for good, now that he has a way to get rid of the bilirubin!

March 27, 2010

SATURDAY, MARCH 27, 2010 6:43 PM, CDT

Liam continues to do well on the conventional vent and is tolerating his feedings well. They did start CPT on him today which is where they take this little foam mallet thingy and pound on his back and chest to loosen up the secretions in his chest. He also took his very first peek at the world today when Daddy was in there with him (Mommy was downstairs with Avery & Xander and missed it)!

March 26, 2010

FRIDAY, MARCH 26, 2010 12:41 PM, CDT

Apparently Liam heard the doctors talking about giving him a new medication because when I came in this morning, the nurse said there was improvement on his x-rays from yesterday and they might be moving him to a conventional vent sometime today. The doctors reviewed cases this morning (apparently they don't make bedside rounds on Friday - they staff all the cases together in the workroom) and after his 11:30 AM blood gas, decided to move forward with putting him back on the conventional vent. I am in the waiting room right now waiting on them to finish the changeover!

FRIDAY, MARCH 26, 2010 11:15 PM, CDT

Liam transitioned very well to the conventional ventilator today and his oxygen is down on 23%! He did decide he no longer needed his UAC line today and it fell out. That's a line in his umbilical cord/belly button that allows blood to be drawn without pricking him - a good thing b/c they do blood gases several times per day. Anyway, they said it's normal for them to fall out after this long but they would try to put another one in (and if it didn't go in, he'd just be without one)...thankfully the doctor was able to get a new one in so he doesn't have to be pricked all the time, for now. They FINALLY got the trans-pyloric tube placed just right late tonight and started him on his first milk at just before 10:00 PM! Again, today, several different nurses tried before the doctor finally got it in correctly when he put the new UAC in...if he didn't get it in, they would've had to do some testing to look at Liam's anatomy because it's not normal for those tubes to be so hard to get into place - every nurse said they're usually VERY easy to get in and they aren't sure why it was so hard to get in.

March 25, 2010

THURSDAY, MARCH 25, 2010 2:14 PM, CDT

Decisions, decisions...

Today we were presented with a recommendation by the Neonatologist and have a decision to make. Liam's lungs are "stagnant" as far as development/maturity goes and he's not making any real progress toward getting off the vent right now. In addition, they say he has some inflammation in his chest. Dr. Stevens spoke with us and stated since Liam is almost 2 weeks, they want to see more improvement so he's recommending a round of steroids (not the same ones they used for his kidneys) - this steroid (I have to remember to ask the name of it - when you're being presented with this stuff, you don't think of the questions til the doctor is gone) requires parental consent to use because it used to be used all the time in large doses and has been shown to cause developmental delays/disabilities. Dr. Stevens did say they use only a fraction of the dose that they used to so the delays are much less than they used to be but there's still potential risk with using it.

Shane and I are torn on this decision. On one hand, we want his lungs to mature and him to be healthy. On the other hand, the thought of developmental delays/disabilities (which are already a risk with his prematurity) is scary. So that's where we are.

They did put a trans-pyloric tube in Liam's intestine today (it goes in through the mouth and is placed just past the stomach in the intestine) to be fed milk. For him, they don't put it into the stomach b/c they don't want his stomach expanding and putting pressure on his lungs so that's why it's past the stomach.

THURSDAY, MARCH 25, 2010 10:52 PM, CDT

The trans-pyloric tube didn't go in properly. In fact, they tried at least 6 different times that I was present for and he had 5 x-rays to see if it was in correctly but it never went in right so they've given up on it for the night and will talk to the doctor about it in the morning. I'm a little disappointed it didn't work out and I just hope something isn't wrong! I did remember to ask the name of the steroid the doctor is recommending but the nurses had shift change so the new nurse this afternoon had no clue as to what I was talking about. I'll ask the nurse in the morning and if she doesn't know, I'll request to speak to the Neonatologist! Other than that, it was a good day. We did have the same nurse today that we had yesterday and I guess first impressions aren't always the best impressions - she was much nicer today...perhaps a bad day yesterday?

Edited to say: Way to go Shane...he requested to speak to the doctor when he stopped by to see Liam. The medication they're wanting to use is called dexamethasone and is only used for a maximum of 3 days in very small doses.

March 24, 2010

WEDNESDAY, MARCH 24, 2010 10:05 PM, CDT

Again, there's nothing really to report. Liam did restart phototherapy today for jaundice. We did not really like the nurse he had today - she didn't do anything major - just seemed a little rough with him and totally disregarded me and acted like I was a huge bother to her even though I barely said 10 words to her. She only let me change Liam's diaper when I usually do most of his basic care - temp, diaper, mouth swabbing. Liam stayed on the lower side of normal for his o2 sats today, too (I think he didn't like her either).

He was again more active - and yawned several times today, which was absolutely precious! Of course with more activity comes more sedation...

March 23, 2010

MONDAY, MARCH 22, 2010 10:05 PM, CDT

Another uneventful day. Liam did get ornery today and kept trying to breathe on his own so he had to be sedated twice...this after almost 2 days of no sedation. Much to our amazement, he didn't restart the phototherapy today. Any bilirubin over 7 gets him a nice light, again...he was 6.3 this morning...they'll recheck in the morning - at which time I'm sure he'll restart phototherapy as he looks like he's spent the day at the beach and has a nice tan. Right now, we're still waiting on the chest x-rays (which he gets daily) to show more change, otherwise he is doing well.

March 21, 2010

SUNDAY, MARCH 21, 2010 10:04 PM, CDT

It's hard to believe Liam is a week old today! We've officially survived our first week in the NICU. We're getting accustomed to the schedules as well as the roller coaster that is NICU.

Today was another uneventful day...I'm liking these but trying not to get too attached to having them because I know it can all change at the drop of a hat. The nurses keep on trying to talk Shane into changing Liam's diaper but so far, he's refused (he says he's too small), though he did take his temperature. They discontinued the humidity in his bed, the antibiotics, and the Aquaphor today and got him weaned down to 4 ml/hr on his dopamine. The steroids they're giving him to get his kidneys going well are really helping with his swelling, too. He looked a lot more jaundiced today, so they're doing a bilirubin test in the morning and if it's over 7, he'll restart phototherapy - which is what we're expecting because he does look so much more jaundiced. I also got to help turn him today, for the first time!

SUNDAY, MARCH 21, 2010 11:08 PM, CDT

I just thought I'd share an article that explains Liam's pulmonary hypertension issue much better than I can...

http://www.thechildrenshospital.org/wellness/info/parents/20830.aspx

March 20, 2010

Today was another rather uneventful day. They were able to wean Liam down a little on his dopamine. He also got rid of his phototherapy light since his bilirubin levels have been good for 2 days but they said not to be shocked if they start going back up because he's not pooping yet (which is normal) so he won't be getting rid of the bilirubin as easily. He also was started on a steroid for his kidneys to get them working a little better - and the same medication will help with his blood pressure. He also received another infusion of fresh frozen plasma today (this is his second) to help with his blood volume and blood pressure.

Liam also got his first visitors today (besides his Granny & Papa) - Ashley and Chelsea got to see him for brief moments. However, visitation nazi (as our nurse so kindly dubbed her) gave me an earful about the second visitor - apparently I misunderstood the visitation policy that's in effect with the H1N1 restrictions (which I could've sworn the policy currently in effect is that only 2 people are allowed in at a time (including parents)). - so, from now on until they lift the restrictions on visitation, only the 4 people we have listed on our "Family Supports" list will be allowed in to see him...sorry, everyone else. We may be able to sneak some in as long as the VN (visitation nazi) isn't there, according to our nurse.

So, that was our day!

March 19, 2010

FRIDAY, MARCH 19, 2010 11:46 PM, CDT

First, I'm sorry about the late update today...there's not much to report today, which is good, in my opinion. They tried to wean some of the dopamine but ended up re-raising the dose because his blood pressure just wasn't quite high enough. He is still really puffy so they are giving him a one-time dose of lasix tonight to ease some of the swelling. He has been peeing really good most of the day but still not enough to help with the swelling - which is EVERYWHERE on his body. They also didn't have to sedate him nearly as much as they have the past few days - and, because of that, he gripped my finger for the first time when held his hand and he tried to open one eye!

And I'll leave you with something to laugh at (Shane sure thinks it's funny)...Liam tries to pee on me everytime I change him! Thankfully, he's too little to have much force behind the pee, so it just dribbles out...but I'm serious about peeing every single time I change him! And, Shane just stands back and laughs!

March 18, 2010

• THURSDAY, MARCH 18, 2010 10:53 PM, CDT

  Today was a rather decent day considering the last two days. I hesitate to even post that with the thought it could all fall apart at any second. The thing making today hardest is that I was discharged from the hospital. I know they'll call me if anything happens, but the fact that we're 30 minutes (at LEAST) away is difficult.
  
  Today, they got Liam weaned off of the doBUTamine - one of the blood pressure meds...but if his pressures start to drop again, he'll have to restart it. Next, they'll try to wean the DOPamine provided he continues to do well without the doBUTamine. He is retaining so much water today. This morning, there wasn't a noticeable difference from last night but between our 4:00 PM visit and the 8:00 PM visit, there was a HUGE difference. He looks like he's beefing up to become a football player. His head and even one of his eyes are really swollen, too. The nurse said the swelling in his head is between the skin/scalp and his skull, not between the skull and the brain, so it won't cause any damage there.
  
  He did have another one of the episodes like he had last night when they turned him in his crib today. He tolerated being turned on his side for the first time very well, but he is very temperamental about being switched from his head facing one direction to the other.
  
  I did finally learn the name of the issue Mr. Liam is having - Pulmonary Hypertension...yay Mommy for remembering to ask the nurse! LOL...
  
  
  

• THURSDAY, MARCH 18, 2010 9:41 AM, CDT

  The visit with Liam this morning went good. I got to change him, take his temp, and swab his mouth with nystatin (it's a precaution to prevent thrush with all the tubes in there). I have to admit it was a little scary to do this again. Last night when we were down there, they let me do all that and rub him down with Aquaphor (to prevent his skin from breaking down b/c it's still so fragile) and right after I did it and the nurse readjusted his head, his oxygen sats began plummeting and went down into the 60's - the vibrations from the vent were not strong enough. It took a couple minutes, 2 additional nurses, and the RT but they finally came back up - and his blood gases still looked good even after that.
  
  This morning, he's getting a platelet transfusion b/c his platelets were low on his morning labs. All the transfusions are very common given his age. He also had his first dose of the RSV vaccine yesterday. They said they give them to all the babies in the NICU monthly from October to April but he kinda lucked out being born in March b/c he will only have 2 but starting this fall, in October, he will again have to have them monthly - which is fine with me - I'll do whatever I need to do to protect my baby from germs!
  
  I will say, he's already developing his little personality. He doesn't like his feet messed with and, though he's heavily sedated, he still kicks his little feet when you mess with them. It makes me happy to see him move - it's hard to seem him just lay there with no movement most of the day even though I know it's for the best so he doesn't fight the vent.

March 17, 2010

WEDNESDAY, MARCH 17, 2010 9:22 AM, CDT

I just got back from seeing my Liam. I'm being cautiously optimistic right now. His oxygen saturation is good right now and the oxygen is back down around 30%. I've decided he's going to fit in our little family just fine as he is so stubborn...he may give Xander a run for his money! Even with sedation, he is still trying to out-breathe the ventilator - they don't want him doing this just yet until his oxygen sats are better. They did have to add the second blood pressure medication last night. His pressure in his heart has been too high which is causing his body not to oxygenate well, so they've been having to keep the blood pressure in the rest of his body higher than normal - and higher than the pressure in his heart - to help him oxygenate. All this medical stuff is so confusing to me...Anyway, he's on antibiotics for the pneumonia. They are saying the pneumonia is not the big issue right now - it's this lung/heart pressure issue - which, like I said before, isn't something they normally see in micropreemies...making it difficult to treat. In addition, they've had to switch him to a stronger phototherapy light b/c his bilirubin levels are a little higher today than before. They're also putting a PICC Line in today - please pray they're able to get that in his arm b/c if they can't it'll have to go in his head.

I did get to change his diaper and take his temperature for the first time around midnight this morning! If I go back around noon today, I can change his diaper again - I barely missed getting to do it at 8 AM. I felt like I was going to break him while changing his diaper...he's just so tiny. Oh, and they gave me one of his diapers to put in his memory box...and, yes, it's a clean one... :)

I want to say that Shane and I appreciate all the prayers from everyone. I know it' s a lot to ask, but please keep them coming. Our roller coaster ride has only just begun and I'm wondering if I have the strength to handle all this.

WEDNESDAY, MARCH 17, 2010 9:37 PM, CDT

Today has been a very touch and go kinda day for Liam. One minute things are looking much better only to have things looking a little worse the next minute. At the beginning of the day, he was back down to 27% oxygen but that was increased to 33% which has since been increased to 40%. They've also had to increase his blood pressure medication and he had a plasma transfusion this afternoon to help stabilize his blood pressure. That makes 2 blood transfusions and 1 plasma transfusion so far. The good news is they were successful at getting the PICC line in his arm and his head ultrasound came back with no changes (a good thing). He also gained weight, but unfortunately, it's fluid...he's very puffy today.

This evening Liam seems to be responding to the new ventilator and the blood pressure medications (they're having to keep the blood pressure in his lungs lower than the pressure in the rest of his body) but he now has pneumonia, too. They're having a difficult time treating the condition he has because it's typically seen in full-term babies where they can do heart/lung by-pass to cure it, but he's too little for the bypass machine. They said his situation is really unique and they just don't ever see this issue in babies as young as Liam. They called St. Louis today about trying a treatment on him they typically use on older infants but St. Louis said they don't typically use it this young and that it'd be a last-ditch effort. If he stops responding to the current blood pressure meds, there's one more blood pressure medication they can try, then this other treatment would be the next option. The next couple of days are critical.

We went back down awhile ago to see Liam. Apparently, after we left earlier, they had to again put him on 100% oxygen again and by the time we got back to visit again, he was back down to 85%. They said he's been extremely unstable today. Anyway, we had to leave the NICU b/c they are putting him on a high frequency ventilator right now to try to minimize the damage to his lung tissue...after they're done and have him settled back in and get a chest x-ray, they said they'll let us back in. I also forgot to add earlier that they had to give him a blood transfusion because he became anemic.

The Roller Coaster Begins

Liam had some major setbacks this morning. His breathing is worse and the pressure in one of his lungs is too high - he is now in critical condition rather than stable. They did some tests on his heart and said it is structurally normal. They had to put him on 100% oxygen this morning which can be damaging to his lungs; he is back down to 70% but the Neonatologist said that's still too high. They also had to turn the ventilator back up and give him some medicine to relax him so he'd stop fighting the ventilator. They said he was stubborn and trying to do all the work rather than letting the vent do some of the work. The Neonatologist was actually in his room when we got to the NICU this afternoon (my OB never showed this morning so the nurse finally called and got permission for me to go - OB did come by after my NICU visit, though) and her (the neonatologist's) exact words were "He's now the sickest baby in here." I felt like the wind was knocked out of me hearing those words. The bright side is that all his blood gases continue to look really good - just have to get the breathing issues fixed.

Please keep praying for Liam to be strong through all this.

Just Beginning

We just got settled into my room on the post-partum unit. I got to stop by the NICU on the way here and see Liam for a bit for the first time since he was born.

Though I knew he'd be small, I was completely taken by surprise at just how small he really is. Shane has been taking pictures and bringing them back to me but they make him appear almost normal-sized when, in reality, he is so much tinier. For instance, his entire head is smaller than MY hand - and I have small hands!

Today, he weighed 2 pounds, 8 ounces so he's lost a couple ounces - which is to be expected but no less worrisome for Mommy. He is also under bili-lights because he has some jaundice but that is normal for a premature baby. He is still on a ventilator and there's no estimate for how long he'll be on that but they said it's only taking 20 breaths per minute for him and he's doing the rest of the work. He is also down to 23% oxygen (was 37% yesterday and room air is 21%).

They're saying the best estimate for his length of stay is until his due date - June 4.

New To Blogger...A Little Note

So, I thought I'd give this blogger thing a try. I already have a CaringBridge site set up for Liam but figured I may want to blog his journey beyond when he is released from the NICU, so I am creating this blog and transferring everything from there to here. We'll see how this goes!