Sunday, September 25, 2011
Jacob's First Year Video
For those of you who followed Jacob's Journey, here is a video of his first year. He is doing amazing at 1 Year Old!
Saturday, December 18, 2010
Welcome Home Jacob!!
After exactly 3 months, we brought Jacob home on December 17, weighing just over 6 lbs. He more than tripled his birth weight!
Bringing him home was so happy and emotional. We had been dreaming of the moment for so long. We were happy to have the chance to say goodbye to our favorite nurse when rooming in, and also get to have his first two nurses walk us out and say goodbye as we left the NICU for the last time. We have had so many wonderful nurses taking care of Jacob in the NICU, and it was extra special to have the nurses who took care of him in his roughest times also be there for such a joyous day.
Bringing him home was so happy and emotional. We had been dreaming of the moment for so long. We were happy to have the chance to say goodbye to our favorite nurse when rooming in, and also get to have his first two nurses walk us out and say goodbye as we left the NICU for the last time. We have had so many wonderful nurses taking care of Jacob in the NICU, and it was extra special to have the nurses who took care of him in his roughest times also be there for such a joyous day.
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| Ready to go home - Dec 17 - 6 lbs |
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| Big Brother and Sister welcome Jacob Home |
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| All three kids at home! |
Jacob is doing very well and we still can't believe how blessed we are to have him home. It is so nice to be sitting around at home with the whole family and to wake up with Jacob next to us, rather than having to say goodbye to Luke and Katherine and to rush off to the NICU for the first morning feeding.
Throughout this long journey, we have been thankful for all the support from our family and friends, and most of all thankful to God for protecting Jacob and bringing him home to us.
"May the Lord answer you when you are in distress; may the name of the God of Jacob protect you."
Psalm 20:1
Wednesday, December 15, 2010
Getting Closer.....
We have been making lots of plans for Jacob to come home on Friday so it is feeling official. Jacob just has to continue to do as well as he has been all week and it's a done deal.
He is checking all the boxes to go home:
- He passed hearing and car seat tests yesterday
- Today I met with the oxygen and apnea monitor provider and received the equipment we will use at home
- Today he got his Synagis shot which will help protect him against severe RSV should he be exposed to it
- Tomorrow Tyson and I are "rooming in" which is taking care of Jacob in a private room in the NICU without the nurses and using our own apnea monitors
We are finishing getting everything set just perfectly for Jacob when he gets home. It won't be the same as bringing home our other babies. We need designated spots for his oxygen tanks and monitoring equipment and need to be mindful of how to move them around whenever we want to move Jacob from room to room. We also have to limit visitors to our house to limit exposure to RSV and other infections which could be life-threatening to Jacob's premature lungs (which won't be fully developed until he is 3). We have strict hand-sanitizing and handwashing rules for anyone getting near Jacob or his things.
I am so excited and get teary-eyed every time I think about Friday. We're praying things go well for him until Friday so we stay on-track, and praying that when he comes home we will do well with his monitors and oxygen, and that he will continue to gain weight and feed well.
He is checking all the boxes to go home:
- He passed hearing and car seat tests yesterday
- Today I met with the oxygen and apnea monitor provider and received the equipment we will use at home
- Today he got his Synagis shot which will help protect him against severe RSV should he be exposed to it
- Tomorrow Tyson and I are "rooming in" which is taking care of Jacob in a private room in the NICU without the nurses and using our own apnea monitors
We are finishing getting everything set just perfectly for Jacob when he gets home. It won't be the same as bringing home our other babies. We need designated spots for his oxygen tanks and monitoring equipment and need to be mindful of how to move them around whenever we want to move Jacob from room to room. We also have to limit visitors to our house to limit exposure to RSV and other infections which could be life-threatening to Jacob's premature lungs (which won't be fully developed until he is 3). We have strict hand-sanitizing and handwashing rules for anyone getting near Jacob or his things.
I am so excited and get teary-eyed every time I think about Friday. We're praying things go well for him until Friday so we stay on-track, and praying that when he comes home we will do well with his monitors and oxygen, and that he will continue to gain weight and feed well.
Sunday, December 12, 2010
Just Jacob
I was so excited to take a photo without anything on Jacob's face. His feeding tube has been off since Tuesday and I took this photo after his oxygen came off Thursday.
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| @ almost 12 weeks - first photo without tubes and tape on his face! |
Saturday, December 11, 2010
12 Weeks
Jacob turned 12 weeks old yesterday. It has been a long road but we are getting so close - hopefully only one more week until he comes home. Doc says Friday at the earliest.
We have been testing how well Jacob does off oxygen and have decided he will come home on oxygen. He has been ok without it most of the time but needs a slight amount of oxygen during and after feedings. We had a pretty clear sign he needs oxygen during feedings - he had a spell his first bottle off oxygen.
We have put him back on oxygen all the time since his doctor says he will grow and develop better with a higher oxygen saturation. The good news is the home oxygen equipment also comes with monitors so we will be alerted (very loudly) if he is having trouble.
So over the next few days we will prepare to bring our sweet boy home and will be trained on how to use oxygen at home.
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Thursday, December 9, 2010
Oxygen Test
Jacob is off oxygen again. This is a test to see if he should go home on oxygen or not. When he is on it, it is such a slight amount, but it has helped him keep his oxygen saturation stable, and he seems to need it during feedings.
If he does well without it, including during feedings, he will not go home on oxygen. But if he can't keep his saturation up or does poorly during feedings, he will go back on and come home on oxygen.
Going home off oxygen would be great, but on the other hand having it available along with a monitoring system as safety net would be nice after all we have been through.
So we're praying for Jacob to do well now off oxygen and/or for God to give us and the doctors a clear sign of whether or not Jacob will need to come home on oxygen.
Sent from my Verizon Wireless BlackBerry
Wednesday, December 8, 2010
Countdown?!?!?
Good News -
Today Jacob's Doctor said we will shoot for him to come home the end of next week. This is what we have been waiting so long to hear. It is the most definitive they can be, and will be pushed back if Jacob has any issues feeding or has any more spells. If he comes home next Friday, that will be his 3 month birthday. We are so excited but trying to contain ourselves since we have seen the disappointment when other families get their dates get pushed back.
Another Big Milestone -
Jacob started breastfeeding today and can do so twice a day now, and will gradually build up to more. He has fully transitioned to bottles away from tube feedings (his last one was Monday afternoon). He needs to keep up the good work with no tube feedings in order to go home.
The bad news is not so bad since it will not keep him from going home. Jacob is back on oxygen. It is just the tiniest amount of low flow oxygen, and he needs a little more for feedings. They will try to take him off again by the end of this week. But the bottom line is oxygen will not keep him in the hospital, he will get to come home even if he still needs it. True, oxygen at home is an extra hassle, but think I'll feel better knowing we have the oxygen to give him if he needs it. Even when he was off oxygen over the weekend, we had to use it for feedings, so I would be very nervous feeding him without it.
Jacob also will need hernia surgery, but it will wait until he is over 10 lbs and is about 6 months old. This will be at the Children's hospital and he will stay overnight one day. It is very common for early preemies to need hernia repair - we have been watching his to see if it would resolve on its own or need surgery. It is small, but will still need surgery.
So we're praying for Jacob to keep up the good work so that he can come home by next Friday, the 17th! 9 days and counting......
Today Jacob's Doctor said we will shoot for him to come home the end of next week. This is what we have been waiting so long to hear. It is the most definitive they can be, and will be pushed back if Jacob has any issues feeding or has any more spells. If he comes home next Friday, that will be his 3 month birthday. We are so excited but trying to contain ourselves since we have seen the disappointment when other families get their dates get pushed back.
Another Big Milestone -
Jacob started breastfeeding today and can do so twice a day now, and will gradually build up to more. He has fully transitioned to bottles away from tube feedings (his last one was Monday afternoon). He needs to keep up the good work with no tube feedings in order to go home.
The bad news is not so bad since it will not keep him from going home. Jacob is back on oxygen. It is just the tiniest amount of low flow oxygen, and he needs a little more for feedings. They will try to take him off again by the end of this week. But the bottom line is oxygen will not keep him in the hospital, he will get to come home even if he still needs it. True, oxygen at home is an extra hassle, but think I'll feel better knowing we have the oxygen to give him if he needs it. Even when he was off oxygen over the weekend, we had to use it for feedings, so I would be very nervous feeding him without it.
Jacob also will need hernia surgery, but it will wait until he is over 10 lbs and is about 6 months old. This will be at the Children's hospital and he will stay overnight one day. It is very common for early preemies to need hernia repair - we have been watching his to see if it would resolve on its own or need surgery. It is small, but will still need surgery.
So we're praying for Jacob to keep up the good work so that he can come home by next Friday, the 17th! 9 days and counting......
Saturday, December 4, 2010
Off Oxygen!!!!!
He has been doing very well breathing normal air completely on his own since this morning.
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Friday, December 3, 2010
Last Hurdle
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| 11 Weeks - 5 lbs, 5 oz (without feeding tube) |
Jacob is 11 weeks old and doing great. His corrected age is 36 weeks, so if he was born today he would have been considered full term.
His last hurdle, quoting one of his doctors, is transitioning completely to bottles (vs tube feedings). He has been cleared by his doctors to bottle feed as often as he can tolerate it. He has 8 feedings a day (3 hrs apart), and from yesterday afternoon to this morning he finished 7 bottles in a row, quite an accomplishment! But this marathon did wear him out, so he had to take a break and get a few tube feedings today. It is completely normal for a baby as premature as Jacob to get tired bottle feeding. We think he should build up endurance and fully make the transition in the next week. Preemie bottle feeding is much different than bottle feeding our older babies that had been breastfed, so there is a lot to un-learn. Instead of baby-led feeding and cuddling up close, we are feeding him sitting up (and not so cozy) with the lights on, and are using various tricks to keep him awake to completely finish the feeding. If he doesn't finish, he has to take the rest by tube.
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| Bottle Feeding - 10 weeks |
We are getting a lot of pressure to graduate from the intensive section of the NICU to step-down, which is good because that means Jacob is going home soon. Moving to step-down is a big milestone, but we will miss our current corner which has been Jacob's home for 11 weeks. In the step-down unit, he could be on a busy and louder main hallway, and the nurse-to-baby ratio is different so I asked to stay where we are a little longer.
Jacob is still on low flow oxygen at 0.02 liters per minute, the lowest amount possible. We're still praying he will wean off easily, rather than hang onto that last bit of oxygen.
Tuesday, November 30, 2010
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.
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.
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| Jacob on low flow oxygen! |
Sunday, November 28, 2010
Moving on Up
One of the milestones we have been waiting for, Jacob moved up to an open air crib!
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!
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| Moved to a crib 11/28 at 10 Weeks |
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| Sweet Kisses from Big Sister |
Friday, November 26, 2010
Big Day
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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Thursday, November 25, 2010
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!!!
Sent from my Verizon Wireless BlackBerry
- 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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Wednesday, November 24, 2010
Early Thanksgiving Feast
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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Tuesday, November 23, 2010
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
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
Monday, November 22, 2010
Chubby
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| 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.
Saturday, November 20, 2010
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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Friday, November 19, 2010
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.
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!
Thursday, November 18, 2010
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):
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):
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| Jacob at 2 months - 4 lbs, 4 oz |
Wednesday, November 17, 2010
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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Tuesday, November 16, 2010
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:
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:
Saturday, November 13, 2010
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.
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| 8 weeks - 3 lbs, 15 oz |
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| 8 weeks |
Thursday, November 11, 2010
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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Monday, November 8, 2010
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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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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Sunday, November 7, 2010
7 Weeks
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| 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.
Thursday, November 4, 2010
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.
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.
Wednesday, November 3, 2010
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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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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Tuesday, November 2, 2010
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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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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Sunday, October 31, 2010
Happy Halloween
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.
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| Happy Halloween from Big Sister |
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| Jacob looking at his big sister |
Saturday, October 30, 2010
6 Weeks, Milestones and Drama
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| 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.
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| 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.
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| 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.
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| What I've been waiting to do for 4 weeks |
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| Daddy holds Jacob for the first time |
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| 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.
Thursday, October 28, 2010
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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Wednesday, October 27, 2010
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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Tuesday, October 26, 2010
3 Pounds
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| 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.
Sunday, October 24, 2010
What is missing from this picture???
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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Saturday, October 23, 2010
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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Friday, October 22, 2010
5 Weeks Old
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| 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.
Wednesday, October 20, 2010
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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Tuesday, October 19, 2010
NICU fashion
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
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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Monday, October 18, 2010
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.
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.
Sunday, October 17, 2010
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.
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.
Friday, October 15, 2010
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:
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:
Thursday, October 14, 2010
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.
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.......
Monday, October 11, 2010
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:
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 |
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| 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.
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| 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.
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| 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.
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| Jacob just a few hours old |
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