November 19

The view from Dean's new room. The room in the ICU just looked out into other rooms of the hospital.

December 6

It's kind of a gloomy day today. :( 

Dean saw his pediatrician this morning (she was the one that sent us go to the ER and then Children's)- he weighs 6lbs 8 ozs!! :D He sees the cardiology team again on thursday. Hopefully something will be crossed off the "things dean might have" list. 

I know that he was/is really sick, but his doctor said that she really didn't think she would see him again..and that really got to me today. So, I want to thank you all again for your thoughts and prayers. It really does mean so much to me. He really had people pulling for him. :) Love you all.

November 25

Had a home nurse come in this morning and check in on Dean. She just listened to his heart and lungs and weighed him. He has gained about 4 ounces since being released (he's about 5lbs 5 ounces today), still not as his birth weight (5lbs 14ozs) tho, but it's good to know his formula is making him gain weight. He's now on a high calorie formula mix to help him, but they were concerned that his diuretics would mean they would have to increase the calories even more on Tuesday when we follow up at the clinic. It doesn't look like they'll have to do that if he's still gaining. Nurse will come again on Sunday to check in again. :)

November 24

I just wanted to make sure I thanked everyone for all their happy thoughts and prayers these past few weeks. We have had a wonderful day of food and cuddling and I'm so happy to have Dean home (Thanksgiving + dean in moby wrap = me in heaven :D). I love you all!!

Happy Thanksgiving!!!!!! :D

November 23

Dean is now home. :) it took forever for them to discharge him, but we made it home safely. :)

November 21

I had an appointment today with one of the nurses from the Heart Failure Team (they are the main team that is taking care of Dean, he doesn't have heart "failure" but their team deals with a wide variety of patients). They are going to remove Dean's feeding tube tomorrow because he has taken all his bottles by mouth! They want to leave it in another day because they want to make sure that he takes all of his medicines by mouth for the whole day. Providing that he continues to take his medicine, as well as eating out of a bottle they are planning on releasing him on Wednesday. No, they still haven't figured out WHY this all happened, they are still waiting on tests to come back - they ran some genetic tests and think that, depending on the results, might want to test myself and the girls at some point. However, these tests take time. So, they are treating the issues that have been presented and he's made fabulous progress.

Anyways......to recap: Dean's doing great and they are planning on releasing him Wednesday. Happy Thanksgiving to us!!!

November 20

I haven't updated in a couple of days...Dean is doing great! He is off of all his IV infusions, off of his antibiotics, and they are transitioning him to meds that he can take orally, at home. He is still on a bit of oxygen, should be off of it soon. They are tweaking his diuretics, trying to insure that he doesn't get any more fluids in his lungs, and they are putting some formula powder in the breast milk to try to give him more calories to get him to gain some weight- Two nights ago he was 5lbs 6ozs. We are still waiting for some immunology tests to come back, those should be in later this week. They still can't give us a definitive answer as to why this has happened, but he is much better and improving with all of the steps they have taken here. We hope to have Dean home with us soon, the trips to the hospital have been taking its toll on us.

 

November 17 part 2

Ok, so I am staying the night at the hospital tonight with Dean (i can already tell my back is going to hurt in the morning!) so i can talk to the doctors when they do their rounds in the morning. he seems to be doing really well, he even ate a bit out of a bottle for me! :D They had to put him on oxygen (thru the little nose thingys) and he doesn't really like it, but at least it isn't the breathing tube. It's weird, but it's sooooo nice to hear him cry. :D

November 17

He is out of the ICU. They have him on the cardiac floor still. We plan on going up there after Jim gets off work. I'll let you all know more then. :)

November 16

Well, we didn't make it up to the hospital today to see Dean. The cost of gas and parking has taken its toll, and I had to do some laundry (I really haven't been home for more than two weeks now!!) and get some rest. However, Dean's breathing tube is now out, it seems he finally had enough and pulled it out overnight. :D They are also thinking of moving him out of the Cardiac ICU tomorrow, but whether he'll move to a room on the Cardiac floor or down to the regular ICU the nurse wasn't sure. I guess that they'll decide that tomorrow. Will have to make sure to talk to one of the doctors tomorrow. So that's it for today. Thank you all for your thoughts and prayers, it means so much to me.

November 15

Today was a fairly quiet day for Dean. They put in a PICC line, so they can remove the line in his groin. That's pretty much all they did today. Tomorrow (or today as I write this, but Wednesday either way) they plan on taking out the breathing tube. There might be a delay in that as they were having issues tonight putting in a new arterial line (hope I got that right) which i was told was important for them to measure the oxygen level in his blood (because that's what his heart has problems with). So, I'm hoping to see him without a breathing tube soon (they will have him on a cpap instead at that point so they can continue the forced air to help his heart out).

And, just on a small side note. Wednesday (today, tomorrow, whichever) was my due date.

November 14

Today Dean had his MRI. He did well during it. They couldn't do one of the dyes they wanted due to one of the medications he's on, but that was ok. I made sure to get the full story about the breathing tube today. Dean is getting forced breaths and they did get him to the minimum that they wean them to (so he's taking most of the breaths himself). They need to put him in a mode that makes him take every breath himself and he needs to be on that for awhile (all depends on how things go) before they take the tube out. So, they are just making sure that he doesn't need the machine before getting rid of it. So, hopefully it comes out tomorrow. We did learn from the MRI that his ejection factor (amount of flow out from the heart) was at 6% when he arrived and was around 26% today. So he has made very good progress. The nurse said that around 60% was normal. Last night we bought Dean a stuffed lion and I put it in his little crib box thingy. :) it's super soft. We felt like we needed to start bringing something cause he doesn't have anything in there except some things that were donated (a blanket, a teddy bear, and a hat).

November 13

Dean update: No real change today. They tried to change his central line (it's currently in his groin and it's causing his leg to swell up) but they were not successful, I think they'll try again tomorrow. They also are planning on doing an MRI tomorrow as well. They put him back on the morphine at least until after the MRI as he was really angry with the breathing tube in his mouth. The nurse said that they were not going to take the breathing tube out until after the MRI. Not quite sure what else has to happen for the tube to come out, but I'll find that out tomorrow (or later tonight when we talk to the night nurse).

November 12

So, today they took Dean off the morphine which meant that he was mad at the tube down his throat, but it also means that he isn't all drugged up and is moving around. They are slowly weaning him off the ventilator and one of the meds for his blood pressure. They did another Echocardiogram today (that brings his total to three) and they are running more blood work. On our way home to try to spend some time with regan. She's a bit daddy-attention deprived and we're feeling a tad guilty.

November 11

No new news today. He is still stable and we are still waiting for answers.

November 10

Day two: Today we talked to what felt like every doctor on the floor along with a bunch of hospital support people. We found out that it is Dean's left ventricle that is enlarged, which means that the blood was having problems getting to his body. They don't think that it is due to a virus, but they are not ruling it out at this point. They are more sure that it is more of the heart just being weak itself. But, at this point, we have no diagnosis, just theories while we wait for tests to come back. We were also told that when he comes home he will be on meds for quite a long time. This will probably mean that he will never be an athlete, but the limitations for him will depend on what happens, but we are remaining positive at this point. Thank you all for your thoughts and prayers. I cannot begin to tell you how much it means to us.

November 9

This morning, Dean had a check up with his pediatrician. We are just now leaving Boston Children's Hospital. His doctor noticed a "gallop" in his heart beat and said his color was off...so we went to the ER and I rode in the ambulance with him to Boston. He is in the Cardiac ICU, he's now stable. His heart is larger than it should be, and it's weak and not pumping very well. We were told that it could be due to a virus, or it could be a defect..they aren't sure. I will keep you all updated when I know more, but at this point we are waiting for labs and stuff to come back.

November 8

Would rather be home with my baby. :(

November 7

Dean is home!!! :D very happy!

November 2

Well...Dean won't be coming home for at least four more days. They still haven't gotten his blood sugar stable, but are working on weaning him off the IV. They have him on antibiotics and will give him the full, 7 day course of it, which means at least 4 more days. I'm not happy. :(

November 1

Dean is currently in the NICU because early in the morning after he was born he had low blood sugar and was breathing fast. Minor issues, but the fact that there was more than one issue made them want to watch over him a little more closely. He's doing really well, and he should, providing things continue to be positive, go home tomorrow. I'm scheduled to go home tonight.