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!

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!

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!

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!

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!

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!

Setbacks....

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!