Wednesday, April 30, 2008

Little bugger

Jacob is continuing to do well and is now up to 2 lb 9 oz! He is still on his full feeds and doing well with the CPAP.

Unfortunately, the little bugger has dicovered that the annoying feeling he has in his throat is his feeding tube. He has now learned how to yank it out and the nurse reinserted it 4 times the other night until they gave up and put it back in his nose. She said in some ways it is good because he is starting to become more aware of what is going on around him and he is learning that when he pulls the tube out that feeling disappears.

He is well on his way to 3 pounds and hopefully in a few days he will get there! More to come in a couple of days!

Sunday, April 27, 2008

My preemie the celebrity...

I don't have too much to report this weekend. Jacob is weighing in at 2 lb 7 oz and has now maxed out on the calories they have been adding to his breastmilk (fortifier). At this point, they will start adding protein to boost it some more. The NP warned us that the protein makes the babies gassy and he may start to stink!

They tried weaning Jacob off the CPAP end of last week and he wasn't having it. His baseline is currently 6 cm of pressure and they tried weaning him down to 5 cm. Once he does good on 5 cm it is on to nasal cannula. Well, he basically told them to take a hike and went back up to 6 cm. The nurse said expect him to stay there for another 2 weeks before they try again because they don't want to push him.

Jacob is famous! Well....his foot is famous. Check out the link below to They did an article on extreme preemies in Boston Globe Magazine and Jacob was their subject. They wanted to interview me for the magazine, but they expected me to get up at 6 AM to be at the hospital by 9 AM! No thanks....especially when I have to stay there until 7:30 PM! They also videotaped Jacob last week for a public service announcement for Tufts Medical Center and the Floating Hospital for Children. Unfortunately, you will only see this if you live in Lowell.

That's all for now! Hopefully I will have more mid-week.

Thursday, April 24, 2008

No more PICC line!!

Jacob has had his PICC line removed and is no longer receiving IV fluids! He is on full feeds (19 cc's of breastmilk boosted with human fortifier 8x a day) and they are starting to wean him off the CPAP. He has been decreased from 6 cm of pressure to 5 cm!

He is still around 2 lb 6 oz give or take a few grams in either direction, but should start heading towards 3 pounds shortly with the feeds he is getting.

More news to come this weekend!No

Tuesday, April 22, 2008

Removing the PICC line

Wow! What a day!

Jacob is up to 2 lb 6 oz as of last night. He is on full feeds which they are boosting with human fortifier to give him some extra calories and nutrients. The IV has been stopped and his PICC line is still in, but will be taken out tomorrow morning if all goes well tonight.

The Chief of Newborn Medicine came in to talk to me today and said they are working on getting him on the nasal cannula in the next FEW DAYS. For those of you who don't know, the nasal cannula is just the two prongs in the nose which supply oxygen. At the rate he is going, he could be transferred in no time which would be great for Ian and me. Jordan Hospital is 10 minutes away and parking is free so it would be a huge help to have him close to home and not draining our bank account!

That is all for today! As Kip would say....peace out.

Sunday, April 20, 2008

Still on CPAP!!

72 hours and counting! Jacob is still on CPAP and amazingly when we arrived today he was only on 25% oxygen! He will be at room oxygen once he gets down to 21% which means the machine is only applying continuous pressure to keep his air sacs slightly inflated. He is doing the rest of the work all by himself!

The Nurse Practitioner came in today and told us he is doing fabulous and if he hasn't had any problems with CPAP yet he probably won't! She said they will have him up to full feeds (14cc's, 8 times a day) by tomorrow morning (he is currently on 11cc's at the moment) and as soon as he gets there they will take out his PICC line and stop his IV! As of last night, he is up to 2 lb 5oz and he gained 14 grams and 20 grams the past two days which are great (normal) weight gains. It looks like it might not take much longer to reach our goal of 3 pounds! Stay tuned!

Saturday, April 19, 2008

New Pics

Check out Jacob's new photo shoot!

He has been on CPAP for over two full days and he is doing awesome! His feeds are increasing and he gained 14 grams yesterday which they said is a more normal weight gain. He also is now on a pacifier and loves it (see pic).

That's all for today!

Friday, April 18, 2008

Jacob's first go at CPAP

I have been holding off on posting until Jacob was all sorted out from his rough weekend and he is just starting to pick up again now. It took him longer than I expected to recover from his collapse on Saturday.

Jacob did hit 2 pounds on Monday night, but because of the rough weekend he had his feeds were stopped on Saturday night so he has had no breastmilk since then. I was a little nervous that he had hit 2 pounds without feeds since it obviously is all fluid that is causing the weight gain. I was more alarmed when he hit 2 lb 5 oz the next day and 2 lbs 9 oz the day after that!!! The nurses have assured me that since he is still peeing non-stop that they are not that alarmed and he will lose the fluid. Even so, 10 oz in a matter of 4 days is alarming so I have been a little on edge, but I called this morning and he is down between 2 lb 3 oz and 2 lb 4 oz so it looks like they were right.

The good, scratch that, FABULOUS news is that Jacob has been off his ventilator and on the CPAP now for 17 hours and so far so good!! This is huge! The longer that ventilator is in there the worse off he is as far as his lungs and breathing problems go. When he went on it last night at 5 PM the nurse warned us that when we called this morning he might be back on the ventilator so not to be alarmed. She said when they are this small they usually can handle it for about 12 hours the first time until they say, "ok I've had enough" and need to go back on the vent. It has been 17 though and Mr. Tough Pants is stubbornly refusing to budge. This kid amazes me! The nurses have been saying how good he is doing considering how small he is and the fact that he has pulled his breathing tube out multiple times now is a testament to his strength. They said babies this little and premature should not have the ability to lift their heads, but you should see this kid pull his head up and yank as hard as he can to dislodge that thing which is another reason I am glad it is out! We will keep our fingers crossed, but it may be that in a few hours he might need the vent again and we may go back and forth for days or even weeks, but the fact that it has been out this long is definitely going to help his lungs in the long run.

Ian and I are heading up later this afternoon. I was a little nervous to be there when he came off the vent and went on CPAP because every time they do something like this to him and he has a hard time I panic and end up crying the whole day so I figured this time I would stay away until it was all over.

They are restarting his feeds today so hopefully in no time Jacob will be 3 pounds! That is my next goal!

Monday, April 14, 2008

Rough Weekend

Well.....there is so much going on, but nothing is concrete so I was hesitant to update the journal at all, but they have kicked me out of his room for awhile so they can address a few things so I figured why not?

I was hoping Jacob would hit two pounds over the weekend, but that did not happen. He has had fluid in his lungs and they have been giving him lasix to help him pee it out so he was up and down continuously this weekend between 1 lb 14 oz and 1 lb 15 oz. As of this afternoon, he is between 1 lb 15 oz and 2 lb's. Unfortunately, he had some more fluid in his lungs on the last chest x-ray and his gain last night was approximately 46 grams which tends to be a bad sign (weight gain that fast usually indicates more fluid in his lungs). They said he is peeing like a champ today and making them all proud so hopefully he can get rid of that extra fluid again.

He had a really rough day on Saturday which was not how I intended to celebrate my big 2-7. If anything, I was hoping for a birthday gift of two pounds, but once again Jacob had plans of his own and decided to give me a heart attack. When we arrived Saturday the nurse came out to meet us and explain what had happened. Jacob had pulled his ventilator out.....AGAIN! This has happened twice before and he was breathing fine on his own for awhile while they reinserted it, but this last time since they were already talking about weaning him off the vent they decided to see what happened if it stayed out. Well, his air sacs in his lungs collapsed (this is obviously not good) so he had to have the vent put back in and it took him most of the day to recover from the collapse.

They also discovered that his electrolytes were out of whack so they upped his IV and backed him off his feedings a little bit to make up for the increase in IV fluids. He was up to 12 cc's of breastmilk 8 times a day, but they had backed him down to 9 cc's as of last night.

When I arrived today, the NP took me aside to explain what they are doing to him right now. They are using this machine that lights up his blood vessels and they are going to try and insert an arterial line in him that will help them more accurately track his blood pressure. They have been having problems with this and even after receiving blood transfusions multiple times over the past couple of days it is not improving. They are hoping if they can get this line in it will help them get a better read. They said since he is bigger now this may not work and is normally reserved for smaller babies so it is a toss up, but they are going to try anyway and hopefully I can go back in later this afternoon. The only good news I got today was that they have lowered his vent settings to prepare him for the CPAP and so far is he is doing really good on the lower settings. Let's hope he keeps this up!

As I said, nothing really concrete to report. Everything that I explained above has pretty much been happening since Friday night so hopefully he can straighten out, get back on feeds and hit 2 pounds this week!

Friday, April 11, 2008

So close!

Jacob is back up to 1 lb15 oz! Hopefully, he will hit 2 pounds this weekend!

As of tonight, his feedings are up to 10 cc's!!! He should be off the IV fluids in no time.

He also had ANOTHER chest x-ray today and they said his lungs appear to be better than yesterday so the lasix they gave him to help him pee the fluid out are working!

I am tired....must get sleep. That is all the news for tonight. Ian and I are spending tomorrow night with the little bean so my next update may not be until Sunday, unless of course he hits two pounds then I will make my way to the hospital computer as fast as possible to post milestone numero uno! Good night!

Thursday, April 10, 2008

Fluid in the lungs

It's been a few days since my last update and we have a few different things going on.

First of all, as of Wednesday night Jacob was up to 1 lb 15oz! I was so excited because he was one ounce away from 2 pounds!! The bad news is that he gained 90 grams to get to 1lb 15 oz and the nurses said a gain that fast is worrisome. Most likely it was fluid in his lungs again so they ordered another chest x-ray.

Last night, he had dropped down an ounce to 1 lb 14 oz and the nurses were pleased with this. They said this is a good thing after the 90 grams he gained on Wednesday. The chest x-ray was also done yesterday and they said he still looked a little "puffy" or hazy, but not too much had changed since he had the last chest x-ray. They said with the tube down his throat into his lungs he is bound to get some fluid in there and it doesn't appear that he has more than he did last time.

Yesterday, his feedings were up to 6 cc's, 7 times a day and hopefully they were increased again today. I will find out when I get there in about an hour. Once he hits between 10-14 cc's of breastmilk they can take him off the IV fluids!

They tried weaning him off his ventilator yesterday and trying him on a different vent (which is the in between for CPAP) and he wasn't toleratng it too well. I knew it was too soon for this. He is still so small and is still being assisted with his breathing by the machine. Hopefully, in another week or two he will be strong and big enough to try this out.

That is all for now. Hopefully, my next post will be that Jacob has hit 2 pounds!

Tuesday, April 8, 2008

Good news!

Once again I am happy to report good news!

I was a little nervous today waiting for the results of Jacob's EKG. Just to give you all a background, they had heard his murmur again (louder than before) and were concerned that his PDA was still open or had reopened. He did have the meds to close this, but often times the PDA will open up again and they can only treat the PDA twice with meds before they go to the surgical option. Because of Jacob's size and the side effects of the meds, the second dose was not an option for him so if it was open again we would be going right to surgery and he is so small that this was making me very nervous (and cry constantly!).

The good news is that the EKG showed that his PDA is closed! It appears the meds have worked for now. We will pray that God guides Jacob through this and the PDA remains closed permanently!

Other news from the EKG, they do see a VSD, but it is very small and again they are still not concerned about it and it should close within the first year of life so moving on....

Now that they have confirmed that the PDA is closed they have increased his feedings to 3 cc's of breastmilk 7 times a day! The goal is to get him solely on breastmilk and off the IV fluids (vitamins and lipids). This will help him grow faster. As of Sunday night, he was up to 1 lb 12 oz, but last night he dropped back down to 1 lb 11 oz which is expected (the fluctuations I have discussed before).

He was also receiving another round of blood transfusions today which was to be expected with all the blood that they have been taking out of him for his labs. The nurse also told us that when babies of Jacob's size are anemic (which he is, just like his Mom and his late Grandma!) that murmurs can actually sound louder when their blood volume goes down and after the first transfusion this morning, the murmur was not as loud as it had been earlier today so that might be what they were hearing.

That is all for now! Hopefully my next update will have news of another weight gain. I think after this trial is over and Jacob comes home I may be able to write a book on Preemies! I am learning so much!

Sunday, April 6, 2008

More weight gain!

Not too much news to report today other than weight gain, but weight gain is such good news I had to post! As of last night he was 1 lb 11 oz!!!! He probably will still fluctuate up and down, but this is a step in the right direction. Ian and I are very happy with his progress!

I was able to hold him for a couple of hours last night and he didn't sleep a wink the whole time. He was very interested in what was going on around him. Personally, I think it is the bright lights of the NICU that distract him.

One of our favorite nurses, Pat, was on last night and she said Jacob is very spunky. She said every time she changes his diaper or picks him up to weigh him, etc. he scowls at her. Apparently, he doesn't like to be bothered. This was apparent when I tried to change his diaper and he peed on me! I am now officially a mother! My parents use to tell me that when I came out I was scowling too so maybe he is just like his mother (news my father will be ecstatic about!!). She said he will probably give us a run for our money when he hits the age of 2!

As the doctor said, we are trying not to let our highs get too high or our lows get too low, but it is so hard when he is doing this good!

Thursday, April 3, 2008

Gaining Weight!

Not too much news to report today, but no news is good news!!

The last dose of meds for the PDA was administered last night and as of this morning all of Jacob's vital signs are indicative of the PDA closing. The only not-so-good news is that they still hear a murmur. They believe this may be a VSD (Ventricular Septal Defect), a small hole in the heart which usually closes by the baby's first birthday. If this doesn't close this may require open heart surgery. This has nothing to do with the fact that Jacob was a preemie and we were actually aware of the possible existence of this around 20 weeks at my big ultrasound. We had a fetal echo when I was here at Tufts the week before Jacob was born and the Cardiologist said he no longer saw it. It looks like that was not the case and it is still, in fact, there but it is small enough that the doctor is not concerned and has hope it will close all by itself. There are no meds to treat this condition and if it doesn't close by itself surgery is the only remedy, but as stated previously this does not presently concern the doctor so we are not too worried about it.

Jacob has finally surpassed his birth weight and was weighing in at 1 lb 8 oz today! They said the weight gain could be a result of his calories or the fluid he had in his lungs earlier this week, but they did a chest x-ray again and his lungs were not as hazy as they were the other day and his weight has been 1 lb 8 oz for the past two days so hopefully the weight gain is due to calories! My short-term goal is to see him reach 907 grams or 2 pounds! That will be an exciting day!

They removed the umbilical line they were using to feed Jacob and replaced it with a PICC line (also known as a central IV line) that goes to a blood vessel right next to his heart so this is good news! The IV is less invasive than the umbilical line and there is less chance of an infection so we are hopeful that little Jacob can start his feedings again tonight and start that weight gain we are hoping for.

That is all the news we have for tonight! Next update will probably be over the weekend so stay tuned!

Tuesday, April 1, 2008


I am sad to report that today was Jacob's first "not-so-good" day. We knew that these would come, but unfortunately we were not prepared to deal with it and had a sad day. The good news is that treatment to fix these ailments has begun and hopefully in the next few days we'll have some good news to report.

The first setback was the PDA (the opening in the valve in Jacob's heart). Today the murmur was louder and the attending physician ordered another Echo to take a look at the opening. It has been escalated from mild to moderate. It is still not severe (the glass is half full!), but the doctor has decided to move forward and start Jacob on the medication to try and close it. These PDA's usually close with meds so we are hopeful that this will be the case and we will know whether or not this worked within 3 days. Only 10-20% of these PDA's require surgery so the odds are for us that the meds will work.

The next setback was fluid in little Jacob's lungs. They have started him on a diuretic to try and flush these fluids out, but the meds for the PDA reduce his urine output so Jacob's team might need a few days to get this worked out. They have also reduced his IV fluids because his glucose levels were a little high.

The one piece of good news we got today was with his head ultrasound. They did this today while I was holding him and he handled it pretty well! The good news is that they still do not see an IVH so this is wonderful news!! If you remember from one of my previous entries this is the most serious condition he can develop and if it doesn't appear within the first 7-10 days chances are good that he will avoid this all together.

When I arrived today he was awake for a good 20-30 minutes with his eyes open so I got close to him and talked to him (or at him) for a little while and he looked right at me. I know he probably doesn't see much or anything for that matter, but it was so nice to look at him and have him look right back at me even if he didn't see me clearly. He also was grabbing and holding on to my fingers today while I was holding him and he has a pretty strong grip! When Ian arrived after work he was squeezing Ian's finger as well.

Well it is time to turn in for the night. I have a long day tomorrow at the hospital and plan on spending the night in one of the parent rooms if it is available. My next update may not be for a couple of days, but hopefully I will have good news to report on the PDA closing.

Ian and I would like to thank all of you who have sent cards and gifts to the house. I would list all of you individually if I had the time, but there are so many of you it would take me days. I will eventually get around to thank you notes, but for the time being THANK YOU ALL!!!! Goodnight!

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