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.

Ready to go home - Dec 17 - 6 lbs

Big Brother and Sister welcome Jacob Home

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

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.

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.

@ almost 12 weeks - first photo without tubes and tape on his face!

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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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.
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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......

Off Oxygen!!!!!

Jacob is off oxygen!!! Quite another miracle since we were told numerous times that he would go home on oxygen.

He has been doing very well breathing normal air completely on his own since this morning.

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Last Hurdle

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.

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.