Happy Halloween

Jacob is doing well today, still progressing.  He has made it down to 31% oxygen on a lower flow rate of 5.5 liters per minute.  He also keeps going up on his feedings, now up to 24 ml per feeding.  Everything is trending in the right direction.  He also has my favorite nurse today.

We all visited Jacob together today.  We decorated his new isolette with drawings they had colored for him.  Here is a picture of Katherine telling Jacob all about Halloween and who she is going to dress up as for Trick-or-Treating (Alice in Wonderland, Minnie was just the afternoon first act).  Luke and Katherine also told Jacob to keep breathing and keep fighting, and Katherine told Jacob to keep believing in God.  They are so sweet with their little brother.

Happy Halloween from Big Sister

Jacob looking at his big sister

6 Weeks, Milestones and Drama

Jacob, 6 weeks old, 3 lbs, 2 oz

Yesterday was Jacob's 6 week birthday!!  Tyson and I were both at the hospital pretty much all day, and I did not get a chance to write an update yesterday.  First I'll share an update with some photos and then vent on some of the drama.

Medically speaking, Jacob was pretty much the same on Friday as he was on Thursday.  Oxygen flow at 5.0 liters per minute and oxygen percent at 34% versus room air of 21%.  This is so much better than he was earlier in the week.  He is considered less critical but still not stable until his flow of oxygen gets around 3ish.  His doctor is pleased with his progress and will lower the flow in 0.5 increments slowly to allow him to tolerate the change.  He will go down to 4.5 today.

Jacob had his first try at a bottle today.  He only took about a teaspoon or 4 ml from the bottle but allegedly it will help him have a positive association with things going down his throat versus the negative association of all the tubes going down.

Jacob's first bottle

Jacob has also been getting some respiratory treatments and if he can tolerate it, they sit him up because the treatment gets to all the sections of the lung better this way.  The respiratory therapist let me hold him sitting up during this treatment.

Jacob sitting up

Jacob moved to a big boy bed today!  It is still an isolette, similar to the old one, but does not have a humidifier (he doesn't need it anymore) and does not have a built-in-scale, meaning the will have to take him out of the bed to weigh him every night.  They only put the more stable older babies in this kind of isolette.

During the bed change Tyson and I both got to hold Jacob for about a minute each.  It was so short but so wonderful.  I had not held him in 4 weeks and this was the first time for Tyson to be able to hold him!  We expect as his oxygen flow gets lower that we will be able to hold him for more often and be able to sit down and rock him as we hold him for longer.

What I've been waiting to do for 4 weeks

Daddy holds Jacob for the first time

Jacob's new bed

DRAMA -  Sorry to vent, but thought I'd share some of the other NICU ups and downs that parents face:

First of all we are so thankful that Jacob is doing better and is more stable - that is the most important thing.   Nearly all of the nurses have been wonderful, and I have full and complete confidence in all 6 of his doctors, they are excellent.  BUT, like anywhere in life, we may not get along with all people.  Yesterday, his nurse was a total witch.  Reference the milestone of his first bottle above.  The nurse decided yesterday was the time to do it, after his primary and nurse and all the other nurses said it was too soon (he should be ready in 3 weeks).  Even worse, she decided it had to be done right NOW.  Tyson told her 4 times I was on my way and she refused to wait for me, saying she has to feed him, she wouldn't starve a baby.  I missed it by 5 minutes.  He could have easily been tube fed for that feeding like all the other feedings.  I don't know what kind of person makes a mother miss a big milestone like that.  I was very upset about missing it, especially since it was for no medical reason that benefited Jacob.  After I sit by his bedside watching him through plexiglass for 6 hours a day, and spend unknown hours every day unpleasantly pumping milk for him, I missed his first bottle.  And the next try won't be for another couple days or weeks or whenever she gets the whim (but hopefully she is never his nurse again).  I was so upset by this, I almost left the NICU for the day, but decided I wouldn't let her drive me away from my son.  Later in the day she also insulted me, gave me a manners lesson and lectured Tyson on how to change a diaper (when as a very involved father of three, he is more experienced at it than she is).

This nurse also decided NOW is the time to give Jacob a new bed, after he had been in his old bed for 4 weeks, and his primary nurse says he is not stable enough to move until his flow gets to 4.0.  But Nurse Ratched wheels the bed out at 1pm.  We know that new bed means someone gets to hold him so we wait around eagerly for hours.  I was afraid to go to the bathroom or go to pump for fear she'd make me miss another milestone.  Finally we had to leave and made her to promise not to do it without us.  First she gave us a lecture on how we are putting our baby at risk for infectious disease for staying in a dirty bed (for putting it off 3 hours when he has been in there 4 weeks, yeah right) then she agreed to wait until the start of the next shift. Unbelievably we got another inconsiderate nurse on the night shift too.  We told her we came for the bed change, but they made us wait from 8pm until 11pm to change the bed and allow us to hold him, and even then got less than a minute of holding time.  It's very frustrating to be at the mercy of these nurses who do everything on their schedule not Jacob's and not his parents.  Don't get me wrong, it was worth the all-day-long-wait, but we do have 2 other kids at home who were waiting on us.

It's been 6 weeks and we have had nice nurses who put the baby and their families first.  Hopefully yesterday was just an anomaly and we return to the land of nice NICU nurses.

Keep up the good work Jacob!

This morning he is at 34 percent oxygen and they have decreased his oxygen flow to 5.0 liters. Sorry for all the medical stats but this is really great progress toward him becoming more stable and less critical. Coming in and seeing these numbers really makes my whole day. I am hopeful they will improve more throughout the day too.

He is also slightly up on his feedings today.

Another milestone I haven't convinced myself to believe yet - Jacob rolled over from his belly to his back! At just under 6 weeks old and 31 weeks gestational age. Apparently it is not unheard of for strong preemies who aren't weighed down by all the baby fat of a full term baby. Unbelievable. I told him he set a Jominy record. Here's to him breaking some more...

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Progress!

Jacob is at 46 percent oxygen now. (Down from the 60s yesterday and since Sunday). He has been in the mid 40s since overnight!!

So this is great progress, hopefully it gets him off the radar for going back on the ventilator. We still have a long way to go, his oxygen flow is very high (7 liters per minute) so he isn't really considered stable until he is at least at 5 liters per minute.

So keep up the prayers, we are seeing progress and need him to keep the momentum, develop those lungs, and continue to wean off oxygen.
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3 Pounds

October 26, 3 lbs, 5 1/2 Weeks Old

Jacob reached 3 lbs yesterday, and held this weight for tonight's weigh-in as well.

Today is Jacob's third day off the ventilator.  He has not had any spells where he drops his heart rate, and we are so pleased.  Witnessing these spells a few weeks ago was pretty stressful, and was a constant reminder of how fragile his health is.  We are also happy to see him without IVs and the ventilator tube in his airway to his lungs.  It is a lot easier to touch him and change him and move him around without the ventilator.  Another thing I love to hear now is his sweet little voice and even his sweet tiny cries (he couldn't cry or make noises earlier with the ventilator occupying his airway).  

Although he is looking and acting more healthy, his oxygen usage through his high flow nasal tube has been at just about 60% since he has been off the vent.  That is still high versus room air at 21% oxygen.  Doctors, nurses and his respiratory therapists want him to be coming down on oxygen.  The doctor last night told me he is "on the radar" for going back on the vent.  This broke my heart and I was really sad about it last night.  I really don't want to see him back on the ventilator.  When you look at him, he looks so good, is mostly resting peacefully, except for more alert spurts now and then, like in the above picture when he really looks around with wide eyes.  So it is hard to imagine him being sick enough to go back on the ventilator.  The thing is he is not sick, does not have an infection that can be treated.  He just has immature lungs.  An X-ray this morning showed moisture in the lungs which they are trying to treat.  We hope this will be effective at lowering the amount of high flow oxygen he requires from machines (vapotherm).

Hoping for good news of decreasing oxygen levels to report in a few days.....  and for more patience.... this is such a long road.

What is missing from this picture???

Jacob is off the ventilator!! He was extubated about 10 am and he is doing pretty well. He is still getting high flow oxygen through his nose, but is working very hard to take all those breaths on his own. We are praying for his strength to keep it up - very hard work for a little guy who has been on a ventilator for over 2 weeks.

He will stay off the vent if he can maintain his heart rate without too many spells - often it is so much work for little babies that they have many spells of dropping their heart rate. Jacob hasn't had any of these spells yet but it is still early. We know he is a fighter and has been very restful the last few days, hopefully saving his energy for all the breathing he has to do today.

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Almost there

Jacob is doing so well, I almost fell over when I saw his ventilator stats this morning. 41 percent oxygen and 20 breaths per minute. Staying stable and looks great. If he keeps it up and has good blood-gas labs tomorrow, he will come off the ventilator.
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5 Weeks Old

5 Weeks - 2 lbs, 14 oz; 14 1/2 inches

Jacob is 5 weeks old today, and finished with his course of antibiotics for pneumonia.  His symptoms have improved and he is weaning to lower settings on the respirator, so we are almost over this illness and ordeal that has been so tough on Jacob and our family the last two weeks.  I was so happy to see the last IV come out.  His veins definitely need a break.

He is breathing more and more on his own and requiring less oxygen from the respirator - he is in the 40s-50s (vs 70s and even 100 earlier this week) on percent oxygen required, with fewer breaths per minute (25 vs 45 earlier this week) delivered by the machine than earlier this week.  Jacob is making progress and we hope he will be off the ventilator in a couple days.  This would be amazing, since earlier this week we were thinking steroids would be necessary to get him off the ventilator.

It has been 3 weeks since I have held Jacob.  Back a few weeks ago when he was stable, I was able to hold him on two separate occasions for a few minutes each.  Today Jacob got a new neighbor - a 33 weeker who was born yesterday.  Seeing the mom come in and be able to hold her baby for so long was too much to take.  I am longing for the days and weeks ahead when we will be able to hold Jacob and feed him and show him how much we love him.

Jacob has been putting on a lot of weight and is almost to 3 lbs.  His doctors are trying to control his weight gain to minimize fluids in the lungs and the stress that excess fluids could put on his body, but whatever they try (restricting feedings, diuretics) hasn't been working - he is determined to be a big guy and grows every day.  His lungs are doing better and the doctors are joking about it with me so it must not be a huge concern.

Gift from Daddy

Jacob is doing so much better than yesterday!!!!!

Last night he got his blood transfusion from Tyson. He is already doing remarkably better on oxygen, requiring only 45 percent now versus mid 60s to 70s yesterday and the scare of 100 yesterday morning. (room air the rest of us use is 21 percent oxygen). Jacob hasn't been this low in about a week. Thanks so much to Tyson for giving him the gift of blood, it is making such a difference, you can't imagine how happy I am to see his stats today.

Again the doctor came over first thing when I arrived this morning. She said he is doing well, will get the second part of the transfusion tonight and that we will not need to worry about steroids if he continues to stay below 70!!! So please keep up the prayers for Jacobs lungs and pray specifically for him to be able to come off the respirator on his own without steroids.

So proud of our little fighter today!
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NICU fashion

Here is a better picture of his ridiculous crown

It looks like they cut up a styrofoam cup. Is it just me or is this ridiculous?

Comments welcome....

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New day, new plan

I was pretty happy with yesterday's plan, as you can probably tell from yesterday's blog. But this morning early before I got here, Jacob was not doing well. He was up to needing 100 percent oxygen. His x-rays showed cloudiness in both lungs, but good news the collapsed right lobe is resolved. His current lung issues are likely unrelated to infection or pneumonia. This is his evolving chronic lung disease. He may need steroid shots in a couple days to help him get off the vent, but there are some risky side effects. I pray he won't need steroids, but it looks like this is where we are heading.

Jacob is anemic and will get a blood transfusion as soon as his dad's blood arrives from the blood bank, by midnight tonight. If he can't wait for dad's blood he will get random donor blood today. The new red blood cells will help him lower his outside oxygen requirements. Today we are already seeing improvement since I have been here, he is at 65 percent oxygen now, so hopefully he can keep it up and continue to bring it down on his own after the transfusion.

The photo attached is from my blackberry so sorry if the quality is bad. I am trying to capture this crown on his head. They made a crown with his name on it to cover the IV on his head. Some nurses and moms think ot is cute, I think it is creepy. By the way, the reason he has an IV on his head is that they are running out of good veins, and have to change IVs frequently when they are no longer good. He is on day 12 of a 14 day course of antibiotics so they should be able to stop the madness soon.

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A little communication goes a long way

Jacob has a great doctor this week. In our NICU, there are six doctors
that rotate through different areas. We are currently in the intensive
area and are on doctor #6. All are great, but #5 was not so good with
parental communication. Last Monday, he told me Jacob has pneumonia and
then didn't talk to me until Sunday when I cornered him for an update and
found out about the collapsed lung. All the other docs had been giving
daily updates.

This morning our new doctor came over to introduce herself when I arrived,
before I even set down my things and we had a sit down conference on Jacob.
Very refreshing.

Jacob's pneumonia is getting better and responding. He is down to 25
breaths per minute from the respirator (vs 45 a few days ago), but his
oxygen requirement is still pretty high. The collapsed right lung upper
lobe should respond to treatment, there is no damage, we just have to get
it to fill up with air. In a couple days he will get another X-ray and
will try to take him off the ventilator.

There is a greater than 90 percent chance Jacob will come home on oxygen.
He will probably need it for 6 months to 1 year. additionally we will need
to keep him at home away from crowds and germs since a tiny cold could be
life threatening because his lung vessels are so tiny and would not allow
air to pass if they became infected and clogged with mucus.

We are encouraged by Jacob's progress and hopeful for further lung
improvement this week, and trying to prepare ourselves for what the rest of
Jacob's first year will be like and how we can give him the best care and
protection from illness.

I also saw Jacob's growth chart for the first time. The preemie chart is
similar to the ones we see for infants and children. Jacob has been at
almost 50th percentile for his gestational age including babies still in
utero, which is very remarkable that his weight is almost the average of
babies still inside their moms. I am still so thankful that feedings and
weight gain are on track.

One Month

Jacob is one month old today!  I was hoping for it to be more of a celebration, but today we found out the upper right lung is collapsed.  This does not appear to be related to his pneumonia, but is just a symptom of his developing chronic lung disease, which many early preemies face.  I knew something like this had to be coming since he was increasing oxygen requirements - in the 60% range and even 70s.  The treatment so far is to keep the right side elevated and they did a procedure that looks like a chest/back massage on the lungs with a little vibrating tool that looks like a mini version of something you would buy at Brookstone or the Sharper Image.  He didn't like it as much as I like a massage though.  He is also down on his rate on the respirator (amounts of breaths per minute the machine takes vs his own breaths) - this is good meaning he is doing more of his own breathing.

So we continue to take it day by day, and hope he starts to repair the damaged lung and decrease his oxygen requirements so he can wean off the ventilator (which can cause more damage to his tiny lungs).

Good news continues regarding feedings - he is now up to 20 ml feedings (there are 30 mls in an ounce).  I remember when he was on 1 ml, and then when we thought 10 was a big deal.  He is tolerating his feedings well and consistently.

Tomorrow starts a new week in the NICU, let's hope it's better than last week, which started on Monday with news of pneumonia and ends today with news of a collapsed lung.

4 Weeks

Jacob is 4 weeks old today!  We can't believe it has been almost a month.  It has gone by so quickly.  Last night we were talking about the next month of his life - we are hopeful for how much he will develop in another month - we will be able to hold him, he will be bottle feeding or maybe even nursing (instead of the tube) and will be on less oxygen and off the ventilator (hopefully)!  We have much to look forward to.

Today Jacob was doing noticeably better.  And I really liked his nurse today.  It really makes a difference to have one of the veteran nurses that really understands tiny babies and is friendly to moms and dads too.  While we were there today he was consistently in the 50s for percent oxygen.  Hopefully tomorrow the trend continues.

Here are a couple 4 week photos:

About the Same

Jacob is about the same as Monday, Tuesday, and Wednesday. This is good
news that the meds are working and his infection is not getting worse. But
it is so hard for us to be patient, we are looking for improvement every
day and not really seeing anything big. His oxygen requirement has been
pretty much the same, between 50-60 percent versus room air of 21 percent.
For reference he was in the mid 20s during his first two weeks. So when I
arrive in the morning and it is at 62, I am discouraged. At least now it
is 53, but will probably go back up later today.

We got another brain scan back this week and are thankful to know all is
good. His feedings have increased again and he is up to 5 oz of milk a day
(over 8 feedings via tube). He is tolerating and digesting his feedings
very well.

Today is day 7 of the antibiotics to treat pneumonia. Praying for patience
and healing over the next 7 days.......

Three Weeks

Jacob is now 3 weeks and 3 days old.  We're learning that facebook status updates are not sufficient and are not reaching all the right people who want to know how he's doing.  And text messages and phone calls to everyone concerned are not always practical for his tired and busy parents.  Jacob's status over the last week has been changing almost daily, which is very different from his first two weeks where status updates were not very necessary because he was doing so well.

If you are interested in getting frequent updates on Jacob, click the "follow" button to the right on this website, and/or "subscribe"



THREE WEEKS -

Well the good news is we found out why Jacob has been needing so much oxygen and respirator support.  Bad news, he has pneumonia, caused by bacterial infection.  He has been on antibiotics and has been back on the respirator since Friday.  His doctors expect this to resolve in about two weeks.  It is really hard to watch our little guy so sick when we can't help him feel better, but we know he is in good hands.  We are also frustrated that he contracted the bacterial infection in the NICU, but this is also pretty typical for the really young and tiny babies who are on the respirator.  The bacteria is very common and living everywhere, but his immune system was too weak to fight it.

Another positive is that Jacob has consistently been doing well with his feedings and they are increasing steadily.  We are doing better in this department than a lot of micro-preemies and premie moms.

Here are today's photos of Jacob:

@ 3 Wks on the ventilator with an IV in his arm

This is Jacob's favorite position

TWO WEEKS -

The good news at 2 weeks was that Jacob reached 2 lbs!  We bought a cookie cake for the NICU staff to celebrate.

Bad news at two weeks old - Jacob's PDA valve or duct between his lung and heart re-opened, causing breathing difficulties.  He was put on medication and back on the respirator for three days.  The duct closed and they are no longer hearing a heart murmur.  He never quite came back from this spell, and required high levels of oxygen when he was off the respirator.

The Titans visited for the second time.  This time 5 players including Vince Young and his entourage.

Jacob 2 Weeks Old and 2 Lbs!

ONE WEEK-

Jacob did so well his first 10 days.  He came off the respirator on day two and maintained low levels of oxygen (at mid-twenties vs room air at 21%) for most of the time.  His brain scan came back very good and we were so impressed that he was doing well and having few of the difficulties we had been warned about.

Jacob 1 Week

BIRTH DAY

Jacob was born at 1 lb 15 oz, at the gestational age of 25 weeks (15 weeks early, over 3 months).  His skin was very immature and his eyes were still fused shut.  He was born via emergency c-section and was resuscitated  by the NICU team.  

Jacob just a few hours old