Low Flow

Today is a huge milestone for Jacob.  He is now off high flow oxygen and simply on low flow oxygen.

He will look the almost the same in pictures so it will be hard to explain and notice the difference but I'll try.

Since he came off the ventilator (which has a breathing tube that mechanically pushes breaths), he has been on a Vapotherm breathing machine that  distributes humidified and heated oxygen mixed with air at a high flow rate into the nose.  Jacob has been taking his own breaths, but the high flow has helped keep his airways open.  Now he is on a very low flow of pure oxygen (still through the nose) and he is keeping his airways open on his own.  The flow is only 0.04 liters per minute (the decimal is in the right place, that is not a typo!).  For reference, he was as high as 7.0 liters per minute high flow vapotherm several weeks ago)

The low flow, along with not having any spells where he drops his heart rate, means he is considered stable now and can do more things, most importantly we can hold him a lot more!  He could also move to a less intensive area of the NICU but I'm not pushing for it since I actually like our spot.  We are now in a "big boys corner" - his two neighbors are also very early preemie boys who have been there awhile and have gone through a similar journey.  I would rather stick with them and their families we have gotten to know, rather than be next to new babies every few days. 

For about 6 weeks now, we have been prepared for the idea that Jacob would come home on oxygen.  His doctor said it's over a 95% chance.  Even last week his primary nurse said he will go home on oxygen.  So today I asked his respiratory therapist what flow rate the home oxygen systems can handle.  I was stunned silent by the answer.  She said the home systems do not go as low as the flow he is on now, they are only for babies that need higher flows.  He is on such a low flow rate now he should wean off at the hospital, and it pretty much looks like he will not have to go home on oxygen!  Of course it is not for sure, he has to keep up the good work, but it certainly seems favorable.
Today I am overwhelmed with joy and praising God, for great is His faithfulness to Jacob and our family.  Thank you all for keeping Jacob in your prayers.

Jacob on low flow oxygen!

Moving on Up

One of the milestones we have been waiting for, Jacob moved up to an open air crib!

Moved to a crib 11/28 at 10 Weeks

Sweet Kisses from Big Sister

Katherine got to visit and witness the big move.  She has been so excited talking about him moving to a crib, so we brought her in for the main event.  She is also excited to tell anyone that will listen that her baby is now FIVE POUNDS!

Clothes!

Jacob is all dressed and ready to move to his CRIB at 3pm!!!

Big Day

How cute he is! Tonight I walked in on Jacob sucking his thumb.

Jacob is doing really well and things are starting to move quickly. He is up to 4 bottles per day. We can hold him and feed him for all his bottle feedings so our visits are getting much better.

Jacob went down to 2.0 liters per minute oxygen flow and is doing very well on the lower flow. No spells where his heart rate drops since Monday. If he continues to do this well with no spells, he will move to an open air crib and get to wear clothes on Monday.

And the big news..... He is now 5 lbs!!

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Thankful

For these things and so many more we are thankful:

- Jacob survived his first threatened miscarriage at 11 weeks
- He survived a marginal placenta abruption at 17 weeks
- He continued to grow and develop for 8 more weeks inside the womb
- He received steroid shots in utero to help his lungs develop faster
- On September 17, God protected Jacob who survived an almost complete placenta abruption, was quickly delivered in an emergency c-section and was resuscitated by an amazing NICU team
- I also survived as well thanks to my bed rest nurses, doctors, a blood transfusion and the generosity of 2 anonymous blood donors
- Jacob did not have a brain bleed as many micro preemies do
- The valve between his heart and lungs closed with medication and stayed closed without requiring surgery
- He recovered from pneumonia
- He got off the ventilator without needing steroids
- He did not need eye surgery like many micropreemies do
- He has gained weight and is growing better than any 25 week baby in the NICU - Ever
- He is taking bottles and up to two a day
- He has great nurses, doctors and respiratory therapists to care for him
- Our family has more friends supporting us than we could have imagined. We are so thankful for all our friends and family
- Jacob is blessed with an amazing big brother and sister who love him so much and pray every day for him to get bigger and come home soon
- Tyson and I are so thankful to have each other during this time. We have grown closer and rely on and appreciate each other more than ever

Thanks again to all our friends and family for following Jacob's Journey and praying for him.

Happy Thanksgiving!!!


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Early Thanksgiving Feast

Jacob just downed a full bottle in 10 minutes. He was opening his mouth and smacking his lips asking for more when he finished. Here is a photo of the happy baby after his bottle.

This was his first bottle since Thursday. They had been reluctant to try again since he was having spells. But he did so well that this nurse thinks he is ready for 2 per day, we'll see if the doctor agrees.

He did have 2 mild spells last night, still hoping he grows out of them soon.

Again today his doctor said he is growing better than any other early preemie they have ever had. He literally is setting the record for a 25 weeker. So proud of him and thankful for answered prayer.

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I would hold him forever and ever....

.... and I did!

Today I held Jacob for 3 hours and it was wonderful.  After an hour, his nurse asked if I was ready to put him back.  I said, "No, I'd hold him forever and ever."  So she told me to let her know when I was ready to put him back.  I never did.  I eventually had to put him back in his bed for his next feeding (he is not back to bottles yet).

Jacob had a great day today and no spells since the bad one last night.  He will be back to bottles tonight or tomorrow if he can stay away from spells for awhile.  I really hope he does, not only for his lung development, but because he's frequently showing signs of wanting to bottle feed.

Here's a link to Luke and Katherine visiting Jacob last Sunday.  This is how the visits typically go.  They sing to Jacob and tell him what they are going to do with him when he comes home:

http://www.youtube.com/watch?v=MfT0LZVeWqE

Chubby

9 1/2 Weeks

Chubby is not a name any mother wants to hear their child called.  But yesterday one of the nurses kept calling Jacob "Chubby" as a nickname and it wasn't so offensive; actually it's good to hear everyone noticing how big he's getting and seeing him layering on baby fat, chubby cheeks and thighs.  He looks so big to us now.  Everyone that comes by to see him has a comment.  Last night he was up to 4 lbs, 9 oz.  (I just came back from the hospital and they had not weighed him yet tonight because he had a pretty bad spell).

Tonight he had a bad apnea spell where he had to be bagged and it took awhile for his heart rate and oxygen saturation to come back up and stay up.  He had not had one since Saturday night.  Saturday night's spell we could blame on the vaccinations, and this one we can blame on the lower oxygen flow - he was lowered from 4.0 liters per minute to 3.0 liters per minute.  We hope he has a better rest-of-the-night and better day tomorrow and that he adjusts to being on a lower oxygen flow.  It is such a good thing for him to be weaning down on oxygen because that brings him steps closer to coming home, but it is never easy to watch a severe apnea spell where he turns blue, his heart rate tanks and he has a team of nurses and respiratory therapists bagging him, trying to bother him, flick him, to make him cry and breathe and get oxygen back in his bloodstream.

Over the weekend we also got the first indication that Jacob might not be home by Christmas.  The doctors really don't like to talk about when he could be going home, other than talking in generalities, like "he has come a long way, but he still has a long way to go."  But in our last conversation, one of his doctors said that she won't send Jacob home when he is still having this type of apnea. And in the same conversation she said often babies like Jacob continue the apnea well past their due dates.  I know it is still possible for him to come home for Christmas, so we will not give up hope.  His weight gain and feeding is going so well, we just have to get the apnea under control and continue to wean down his oxygen.

Better Day

Jacob had a much better morning today. No apnea spells and his oxygen percentage was back down to 24-25 percent where it had been Thursday. I got to hold him for 45 minutes but we decided not to try a bottle again due to all his spells yesterday.

Tonight Tyson is with him and he is doing very well on 23 percent oxygen.

He had his last shot today so we pray he doesn't have a bad night or bad morning tomorrow.

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Rough Morning

Jacob had a rough morning today.  He had 4 apnea spells in the morning, one requiring him to be bagged with oxygen.  It could be due to having his vaccinations yesterday.  Even full term babies feel a little off after shots, and preemie babies with chronic lung disease can need more oxygen or have more apnea spells.

The good news is that he had a better afternoon, and I just talked to his night nurse who says he is resting peacefully tonight.  So we're praying he has a good night and better day tomorrow.

His 3rd and last vaccine was due for today (they split up the 3 shots over 3 days rather than all at once) but we postponed it since he wasn't doing very well.  He will get it tomorrow if he is up up to it.

We also did not try the bottle or hold him since he was having spells.  Hopefully these spells will pass and we can get back on track.

The baby that shares a nurse with Jacob had a rough morning too (making it hectic for the nurse), so they had to reshuffle nurses and give us the only nurse in the NICU we don't get along with (yep, the one I blogged about before).  So that made the day even worse.  We actually ended up leaving early so that she could focus on taking care of Jacob rather than spend her time thinking up ways to be rude to the parents.

Tomorrow Jacob is getting visits from not only his parents as always, but also from his Auntie and Grandparents so hopefully he is feeling much better!

So Happy to be a Mommy

Today was a great day for being a mother.  I spent the morning playing with the big kids, had the best afternoon with baby Jacob and then dinner out with Tyson and the kids.

At the NICU today:
Today Jacob took another full bottle ....
out of his incubator ....
while I was holding him ....
for over an hour!!!!

Good news on top of good news on top of good news.

After yesterday's feeding success we decided to try the bottle again today and the nurse let me go ahead and do it in the rocking chair, just like this is what we've been doing all along.  Jacob did well during the feeding, no issues other than wanting to fall asleep before the bottle was done (just like his brother and sister did as full term babies, so no huge deal).  Everyone seems so surprised that he is able to take the full bottle, so the whole NICU is proud of him.

After the feeding, I kept holding him and holding him and holding him.  It was wonderful, it was going on forever but I obviously didn't question anything.  After about an hour and 15 minutes, his nurse today says under her breath, "Wow I really broke the rules with you today."  Jacob did well the whole time with no apnea spells or issues and I just loved hugging him closely and singing to him.

I also haven't mentioned yet that we are also giving him baths now.  They are just sponge baths with a washcloth and every third day it is a soap bath with a soapy washcloth.  These happen at night and it is not as fun as a tub bath, but a good time to interact with Jacob because he is always alert during the bath.  Tyson is on his way to give a soap bath now.

Also this week his doctor reviewed his growth chart with me again.  She showed how Jacob is close to 50th percentile for weight by gestational age, and that is compared to babies that are still in the womb. She emphasized that it is unfortunately very uncommon for babies born as early as Jacob to do so well (most fall significantly under the growth curve), so what he has done with his feedings is remarkable.  Yay!

This has been such a great week and we think that things are really looking up and will keep getting better and better.


Two Month photo from yesterday (adding some baby fat):

Jacob at 2 months - 4 lbs, 4 oz

2 Months Old!

Jacob is 2 months old today!!

He was showing off for his birthday and just finished a whole 32 ml bottle! His nurse thought he would only be able to do 5-10 mls since this was his first time (not really counting the one a few wks ago when he was too young and not ready). So Jacob surprised us all and polished off the whole bottle. He looked like such a big boy and we are so proud of him!

He will try again with the bottle tomorrow and gradually build up frequency and hopefully get rid of the tube by next week.

He is still doing well on his oxygen flow and hasn't had any spells since Sunday night.
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4 Pounds!

Jacob crossed the 4 lb milestone last night and is now 4 lbs, 2 oz!  At this weight he is big enough for an open crib but his doctors want to hold off until he is more stable and on a lower oxygen flow.  When he goes to a full crib, he will wear clothes and be wrapped up in blankets to stay warm (in the incubator he wears just a diaper).  When he has apnea spells they need to be able to look at his chest and see if he is breathing, which is difficult to do if he is bundled up in so many layers, so the open crib will wait....

He also continues to make slow and steady improvements on oxygen.  He is having very few apnea spells, mostly on Sunday night for some reason, but has been fine since.  So his doctor lowered his oxygen flow from 5.0 to 4.0 liters per minute.  He will be ready for an open crib when he gets to about 1.0.

More great news is that we are getting to hold him on a regular basis now!! We think the rule is once per day, but we're still trying to figure out the protocol.  I held him on Saturday and today, Tyson held him on Sunday and Monday.  We are getting to hold him for up to 20 minutes and can feed him through his feeding tube while we hold him (a step toward bottle feeding).  It is so wonderful to be able to hold him rather than only look at him through the plastic wall.


We think bottle feeding will be coming soon, but don't want to rush him.  It could be coming up in the next few days or within a week, but he has to adjust to lower oxygen flow, and will be having his 2 month vaccinations over the next 2-3 days so we don't want to push him until he is ready.


Pictures from today:

8 Weeks

Jacob has doubled his birthweight!!  He is now 3 lbs, 15 oz!!  He had another good night and is still doing well on his oxygen.  

Here are some updated photos.  As you can see he is filling up his isolette more and more and is now up to pampers preemie diapers.  He seems like such a big boy to us.

8 weeks - 3 lbs, 15 oz  

8 weeks

So far so good

Jacob is having a great week so far with very few apnea spells that are not as bad as last week. He didn't have any last night, yesterday or today. The doctor weaned his oxygen flow rate from 6.0 liters per minute to 5.5 Tuesday and to 5.0 today. He tolerated the reduction well Tuesday and we hope it continues for the rest of the week. He has also been consistent at 24 percent oxygen all week (vs room air of 21).

Jacob is now up to 1 ounce feedings (8 ounces per day). Big milestone!! Jacob has always done a great job of tolerating his feedings, but has been fluid restricted because of his lung condition.

Next week Jacob could be big enough for an open air crib and wearing clothes. If he can get his oxygen flow down to 4.0 liters per minute with no spells, he could be ready for us to hold him and for bottle feeding. Praying for steady improvement to get us there.....

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Eyes Clear!

This may have not been on the radar since I haven't blogged about it, but preemies especially the really young ones often need laser eye surgery. The eye doctor came today, and Jacob is fine, all clear, does not even need a follow up. I was praying so hard for the last hour that he would not need the surgery. Even though it is a minor one, I really did not want him to have to go though it after everything else he has been through.

Last night he had no spells and was doing well on his oxygen. He has my favorite doctor this week who will slowly wean down his oxygen flow of liters per minute this week.

He just had a spell where he needed to be bagged with extra oxygen, but they expected him to have spells after the eye exam and a rough morning. They delayed his feeding and he had multiple eye drops and his eyes pryed open (they wouldn't let me watch). I have never heard him cry so loud; I wanted to comfort him but was also glad to hear it - this means his lungs are developing. We used to have to be very quiet and open the isolette doors to hear him cry.

So today I am thanking God for watching over Jacob and for protecting his eyes.


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7 Weeks

7 Weeks - 3 lbs, 6 oz

Here is Jacob's 7 wk photo from Friday.  He is getting bigger and it really shows.

Jacob is still making slow and steady progress.  Getting much better on his percent oxygen required.  All weekend he was at a steady rate in the mid-twenties.  He was at 24% today, vs room air of 21%, so his oxygen is very low!  We are so thankful for the progress - he was in the 30s all week, the 40s last week, and the 60s when he first came off the ventilator a couple weeks ago.

He is still having some periodic apnea spells where his oxygen saturation falls and heart rate falls - 3 last night but none today.  His doctor says the spells are not as much due to struggling lungs since he is doing so well on breathing and oxygen the rest of the time (good news, that type of spells could set him back), but more due to the brain just forgetting to breathe (due to prematurity).  He can grow out of this as he develops.  After all, he is not supposed to be breathing yet - his due date was not until after Christmas.  

His high flow oxygen is still at a high rate of 6.0 liters per minute but I am guessing the doctors will start to lower this since he is lower on oxygen percent and having fewer spells.  When he weans to a lower rate and grows out of the spells, we can start holding him and bathing him.

So we are looking forward to a new week of progress, and thankful that we did not have the setback we feared earlier this week.  As always we are thankful for all the prayers and for our faithful friends and family who supported us during the lows of the last week.

Better

Jacob is doing better today, only a couple spells today and a couple overnight, and they aren't as bad as yesterday.

His oxygen percent was down as low as 27%, which is the lowest we have seen it in many weeks (good news), but the flow rate is still pretty high at 6.0 liters per minute (so he still has a ways to go).  Looks like the fluids are more under control, which is key - fluid on the lungs causes lots of problems for this fluid-sensitive guy.

Another update I forgot yesterday is that Jacob is back in the original Giraffe isolette/bed.  It is easier for the nurses to get to him when he is having spells.  He really should have never been moved to the other bed.  It was fine for his age and weight, but not for his lung condition.  It has been repeatedly confirmed that the mean nurse should not have given him a bottle or a new bed; he was not ready for either.  Luckily I am pretty sure we will not get her again, since our other nurses provided feedback on the situation and will keep her away from Jacob.

Update

Thanks for all the prayers. I can't reply to all the emails and calls so hopefully the blog will suffice, but know we are so thankful for your prayers and concern and encouragement.

Jacob had a better night last night than the night before. He had a great nurse the past two nights so I am glad he was in good hands during this rough patch. This nurse was there for his birth and has had him for 6 weeks and is protective of him. When I was there last night he had a couple spells requiring intervention to keep him breathing and get the heart rate up - back rubbing, repositioning, flicking his feet, suctioning his mouth, basically annoying him until he remembers to breathe. He had no more overnight that needed the nurse. This is so much better than the night before. For the most part, whenever he dropped the heart rate he brought it back on his own.

This morning his doctor said he is pleased that it looks like his fluid is coming down and he had a better night. But then he had a bad spell where he couldn't keep breathing and his heart rate kept falling. He had to be bagged with oxygen for a couple minutes. Pretty hard to watch, we are hoping the spells continue to trend down the rest of today.

The spells are a normal part of being a 25 week preemie, but so many in a day is troubling, especially when they need intervention. We are praying for them to resolve so that he can focus on growing and weaning down on oxygen so that he can come home with his family by Christmas.

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Prayers Needed

I'm afraid Jacob is on the verge of another setback.

Last night he had several "spells" where his heart rate dropped and the nurses had to intervene to get it going - by stimulating him with back rubs or moving him around. These spells are common for micropreemies, but he didn't have any for the first few days off the ventilator, then had a couple over the weekend, and last night he had a lot.

Today they increased his oxygen flow back to 6.0 liters per minute from 5.0. This afternoon he had two more spells, one involving bagging (more oxygen, continuous pressure). The doctor doesn't think he has an infection since he is otherwise fine and looks good, but we are still fearing upcoming bad news since the "spells" have preceded all his other setbacks like the PDA valve re-opening and his pneumonia. I pray he does not have to go back on the ventilator, but fear the next time I walk in that's what I'll see.

The doctors have described him as being very fluid sensitive. This is due to his immature lungs and chronic lung disease. It is a tricky balance of trying to increase his feedings so he can grow vs trying to control the fluids which find their way into the lungs and make breathing harder. He has been on diuretics to get rid of fluids and the dosage has been increased for 2 days in a row.

So please pray with us for Jacob's lungs to develop, for him to stop these scary spells and stay off the ventilator and away from setbacks.
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