Finally...the Boy is home!

Yes, yes...I've lagged a bit on posting the update on Benjamin's homecoming. I am sorry. I guess I was just enjoying my time with my baby! Benjamin came home Friday evening after 24 days in the NICU. He was discharged at 7lbs, 3oz (7 oz higher than his birth weight). We already have two follow-up appointments scheduled and 3 appointments still to make. We are so glad to have him home, where we can love him all day long...without having to take long trips to the hospital to do it!

The girls are absolutely in love with baby brother. Emily is always saying, "he's so cute!" They both want to hold him constantly and, despite some argument occasionally, they are dealing well with the rules regarding baby brother. Abi is, of course, the mama bear. She wants to help with everything. Today she got to feed him and help change his diaper. Emily pretty much holds him until she finds something else to do (which only takes about 1-2 minutes).

Our first night was a bit rough. He hardly slept a wink unless one of us was holding him. It is weird too because he wasn't held in the NICU until towards the end of his stay. Thank goodness we were able to have the girls spend the night at Monkey's house our first night. Darin arranged it because he thought it would be easier on me to have the first day with home by myself without the girls...and he was right. I was so tired on Saturday. I dont' know if I would have been a very good mom to the girls that morning! He seems to sleep better during the day than at night. We're trying to fix this. Saturday he also received his first bath, however, he didn't like it very much so it was a quick one! I had to do something though...he was a bit stinky, and dry!


I introduced him to Target yesterday as well! Hey, you can never start them too young! We spent last night at Nani and Papa's house celebrating our Christmas together, as they will be out of town visiting all my favorite cousins (and Aunt & Uncle) over Christmas! Obaachan finally got to meet Benjamin in person last night, and of course, she fell in love. I mean, who wouldn't?!

Today he slept quite well throughout the day in his swing. It wasn't even swinging either! We think he likes the angle. It is similar to the position he was in at the hospital. We are adjusting to having a baby around the house again. I forgot how tiring it can be in the beginning. I hope you all appreciate your sleep! I miss mine :( But he is worth it! Tomorrow morning we have his 1st doctor appointment with his pediatrician so I will let you know how that goes!

It has been quite a rollercoaster these past several weeks and months. We know though that this next year will be so much brighter for us, if only because we have Benjamin with us. Our little family is complete! Thank you so much for all your prayers and constant words of encouragement. And though Benjamin's ordeal is far from over, we know that it will only get easier for us, and that Benjamin is in good hands...he's in God's hands! It doesn't get any better than that!

TODAY IS THE DAY!!

BENJAMIN IS COMING HOME!!! I spoke with the doctor this morning and his weight gain has been good and he's doing great off his oxygen! When Darin gets off work we'll be heading down to the hospital to pick him up! The girls are so excited to finally get to meet their baby brother! We just are excited to finally get to have our whole family under one roof! I'll post some pictures later! HOORAY!!!!!

Benjamin is coming home!

Finally, after 3 long weeks, Benjamin is coming home. They took him off his oxygen today and are going to observe him the next two days and as long as he does okay with his feeding without the oxygen, he'll be coming home on Friday, December 19th! We are so excited!! We've waited so long for this that we can't believe it's finally here. I guess it's a good thing I washed all his clothes...poor little man hasn't worn any clothes since he's been born! This is definitely our greatest Christmas gift and look forward to having a wonderful Christmas as a bigger family. The girls are extremely excited to finally meet baby brother. They are counting down to Friday!!! Hooray! The picture is Benny without his nasal canula. He looks so much like Darin now. The Christmas beanie was made by a volunteer at the hospital. Isn't it so cute?! It definitely fits him better than the one we brought for him!

Update

We are happy to report that Benjamin has been eating quite well over the weekend! Saturday night Darin was able to feed him about 53mL and since then he has been sucking the stuff down. I fed him a full bottle (50mL) yesterday and his nurses have been getting him to take 40-60mL a feed. This morning he took about 60mL as well! This is great news...he has a strong suck! They are also weaning down his flow on his nasal canula (the uncomfortable nose thing that gives him oxygen) and are hoping to be rid of that by today or tomorrow. We are going to start trying breastfeeding too hopefully within the next day or so because he's been doing so well! This is quite exciting! The only thing we really need to work on with him is his sleeping habits. I think he's got day and night mixed up...he's up all night and sleeps during the day. I told the nurses to fix this before he comes home :) Although, I'd be happy to have him home even he wasn't back on track!

Finally!

It was a great day yesterday. We finally got to hold Benjamin, after 2 1/2 long weeks!! We could hardly contain ourselves. We only got a short 1/2 hour to hold him before they closed for shift change but it was a great 1/2 hour. They took out his thoracic line yesterday morning so now his chest is clear of IV lines! He does have an IV in his arm now to maintain access but that's okay...it's better than his chest.

We attempted to feed him and he took about 20 mL, which seems to be his trend these days. He just tires out too fast. It's funny how we really don't realize that eating for babies is like going to the gym for us. And we are asking him to go the gym every 3 hours...after having major heart surgery! Poor little guy...he's trying though and doing well and that's all we care about.

We spoke to Dr. Jones yesterday afternoon as well. She is the geneticist that follows the 22q cases. She informed us that his immune system seems to have normal function. The full panel that they're running is not back yet but initial tests have shown that his immune system responds in the proper way to infection. That's great news! His suck-swallow strength is not too great, which could be why he's having problems feeding, but it could also be that he's just learning and tired too. Only time will tell. Palette problems are common in kids with DiGeorge, and if he does have a problem, it could mean problems with speech later on. But, like I said before, it's all a wait-and-see game. She also consulted with several colleagues about any connection between the feet and DiGeorge and she got no response from anyone. This leads us to believe that it is not associated with 22q and that it was a fluke...what are the chances! But, he should have no trouble walking because he has a nicely formed big toe with great ball function and he has enough on the other side of his foot for balance. He might not even need special shoes! It was a great meeting and we definitely are feeling positive on his prognosis!

In other news, Darin has found a job! Though not his first choice, we all know beggars can't be choosers! He is taking a job with Midas, and starts on Monday. This is a little sooner than we would have liked but a job is a job. We are just happy to have it! We shall let you know how this works out!

Countdown to Holding Benjamin!

Today was an exciting day for us because we learned that they'll be taking his thoracic line out of his chest tomorrow...which means...WE GET TO HOLD HIM FINALLY!! They put in a PICC line so that they still have IV access to his heart should they need it. We are so excited and cannot wait to hold him tomorrow!! We'll definitely be taking pictures so be sure to check the blog!!

His feeding varies; one feeding he'll do great and take 30mL and the next he'll take like 6 or 7 mL. He is doing great though and we just have to give him time...easier said than done though! The doctors are happy with his progress. I spoke with Dr. Pastuszko today and he said that as sad as it is to say, they hate healthy babies in the NICU. Benjamin is a healthy baby and they cannot wait to send him home...and neither can we! We are optimistic that perhaps he might come home sometime next week but only time will tell. They are starting to involve us more in his routines though. We have been changing diapers and feeding him, if we are there at the right time, as well as learning to administer his medicines. That's been nice because it's more physical contact with him, which we most thoroughly enjoy. As of now, we know he'll be on at least 3 medications when he comes home: Aspirin, Captopril (meds for his heart), and Lasiks (to help him pee). All are given orally, except the aspirin which is in suppository form :( poor guy. We'll let daddy take care of that one!

The girls enjoy going to the hospital with us even if they don't get to see baby brother. They like to look at the pictures when we're done. I take little videos for them too. The pictures you see of the girls are just to show you the goodies they get at the hospital! These are ice cream mustaches leftover from an ice cream that the cafeteria lady gave to the girls for free! How nice!

2 weeks old!

Today Benjamin is 2 weeks old...how the time flies. You look at him and would never think he just went through major open heart surgery. He is eating better. This morning he took 10 mL of breastmilk, which is up from his average of 5 mL. They are only feeding him through the bottle now and not his feeding tube because they want him to start waking up when he's hungry. His suck reflex is great, the nurse said, so now it's just a matter of getting him to eat more. They also took out his pacemaker wires yesterday so now the only line he has left in him is his cardiothoracic line, which will probably stay in a little while longer. Once that is out, we can probably hold him! I can't wait! The doctor told us yesterday that he's doing well and now it's just time that he needs to get his feeding right. He's only on oxygen because he's there and it's available to him but he doesn't really need it. It just makes the load on his lungs a little easier and why not give him the rest if we can!

We found out this morning that they moved him from the cardio side of the NICU to this small room they call the ECHMO room. It's not used for ECHMO (not quite sure what that is) it's just another space to put some beds. We haven't gone to see him yet today but we'll see if he got a big boy crib or not. Most babies in that room have little cribs. They moved him because they were getting in a really sick baby and needed the space and Benjamin is probably the best looking baby on the cardio side...which is good news! If anything changes I will be sure to post tonight!

Happy Birthday Abi!

Today we celebrated Abi's 5th birthday! I can't believe she's five already...Darin and I were talking the other day about how grown up she is now. It almost seems that in the past 11 days since Benjamin was born she just transformed into this BIG GIRL. She's all about what to wear, and makeup, and taking purses with her now. It's unreal! So, for her birthday we thought it would be fun to get her a Caboodles case and fill it with some makeup and stuff. She LOVED IT!!

As it's been a tight year for us, we opted not to have a party for the girls this year. Instead we had a "Birthday Day" a couple weeks ago in which we celebrated both girls' birthdays on the same day. It was basically a day of fun...went out to breakfast, visited the park, saw a movie in the real movie theater (Madagascar 2, very cute). So, today we kept it low key. We made special birthday pancakes in the morning for breakfast, followed by presents. Then the girls went to the gym with daddy. They love the gym! We had Personal Creation pizzas for lunch, with extra olives! We then went to Monkey's house (that's what the girls call Darin's mom in case you weren't aware) where we partook in cake and presents. Even Emily got presents! And can I just say that now the girls have more cash in their pockets than we do! While Abi hung out at Monkey's house and Emily slept, Darin, Patty and I went to the hospital to see Benny.

I am happy to say that he is doing well. We did have a set back though with his feeding. They switched him to Pedialyte because he wasn't taking to the breastmilk like they had hoped. He wasn't digesting it very well so he'll be on Pedialyte and then they'll try again when they feel he's ready. I am sad to say, however, that I, his own mother, could not go see him because I am now officially sick. I feel fine, but I have the standard runny nose and sore throat. I'm very upset and I'm already going through withdrawls...please pray for a speedy recovery for me. I miss my boy! I did get to hear him crying over the phone tonight though. His nurse held the phone to his face and I heard him crying a bit and got to say hi! It was very nice of her. He sounds a lot stronger vocally than he did yesterday so that's good news! So, though I didn't see him, I know he's doing well, and Darin made sure to take a picture for me. We took him a little hat that is apparently too big for him...he has such a small head :)

Anyways, after Monkey's house, we took the girls to Soup Plantation for dinner, as they love the buffet style because they get to do it themselves. We finished off the night with a movie theater at home. It's one of our most favorite things to do. Space Chimps was the movie...it was a late night. Thank you to all who thought of Abi on her birthday!

It's been a week!

It has been one week since Benny underwent major heart surgery but it seems like it's been longer. He just looks so great. He got his steri-strips removed today (the butterfly stitches covering his battle wound). They also removed one of the IVs from his foot. He's not on any medications anymore either!

When I went in to see him today he was sucking on his paci which is great news because it means that he's starting to get the sucking again and that will help with his feedings hopefully! He saw the Occupational Therapist and the Physical Therapist today and both visits went well. We will be working more with the physical therapy after he comes home because he has a tendency to clench his hands tight just about all the time. He tucks his thumbs under his fingers and just clenches and while many newborns react sometimes like this, it's not constant, like Benny. He is also a bit jittery, especially when he's touched. They're not sure why he does this; it could be a little withdraw from meds, reaction to some pain he might be feeling, or something neurological. They'll follow him and if it continues they might do an MRI, but we're waiting to see. All in all, he's doing well! They might be taking out his thoracic line over the weekend (the main IV line running straight into his heart, and the primary reason why we can't hold him!). We'll let you know if they do.

A little clip

Benny was looking good again today. It's amazing to me because each day he looks a little different. Today, he looked like his normal little self again becuase the craziness of wires wasn't surrounding him. His progress is still good but he is refusing to take the bottle. He goes into lock down mode and he presses his lips together. It's funny. He took the bottle once and that was it. So, they are continuing to give him his milk through the feeding tube and are attempting the bottle every few hours. I got to try and feed him today...it was a great moment because it's the most I've got to hold him in over a week! However, he still wouldn't take the bottle...not even from his own mommy. I guess it's not as good as the the real thing!

He's been scheduled to see the Occupational Therapist and Physical Therapist tomorrow. It's standard for cardiac patients to see them because they usually need a little extra help! They'll evaluate him and check him out and see what/if he needs any of that extra help. Hopefully that'll go well too!

Below is a video clip I took of him while he was crying, or at least attempting to. His throat is still soar from the ventilator and he's still a bit hoarse. Anyway, I thought you all would like to hear him. Enjoy!

Progress!!

Today was a big day for Benny! He got the side drainage tubes removed from his chest, the IV in his belly button removed, and, best of all, he was taken off the ventilator today! We were so excited to see him come off of that. It looked so uncomfortable for him and it hid his oh so cute face! Now we can see it! He is just getting some extra oxygen through his nose. He has some gunk still in his lungs but the nurses are starting to move him around and sit him up in order to encourage him to start coughing. So, he's looking very good, especially now that a lot of wires and IV lines are gone. He's coming off medications too which is also great news!

Another great thing to report is that they started giving him breastmilk today! They gave him a little bit through an IV to start, just to make sure he would take it okay and didn't react. They tried giving him some through a bottle but he didn't take to the nipple to well. This is normal for babies who have been on a ventilator. Hopefully he should come around to it. So, for now, they'll be giving it to him through his feeding tube but will continue to try the nipple every few hours.

So, it was a great day for progress! Even his night nurse tonight said she couldn't believe it when she saw him tonight. It's always reassuring to us as parents when we hear nurses say stuff like that! They also think he's adorable...which he is! That's the news for now!

Another day

Benny looked really good today. They took out the main drainage tube from his chest so now he just has his little side tubes. They are weaning him off the ventilator and hopefully tomorrow he will be off of it completely. Today he went from 14 to 12 (that means that the machine makes 12 breaths per minute for him and he does the rest on his own). He's doing very well with it. He's down from 6 medicines to 2 medicines. They are giving him morphine as needed but he's been doing really well.

I just thought I'd share some pictures from today. Each day he looks a little different...a little stronger! He was awake for quite a bit tonight so we got to spend time with him. We noticed that he responds when we talk to him and touch him...he loves his mommy and daddy!

Prayer Request

Darin and I have had the opportunity to meet some wonderful people during our time spent at Children's Hospital. We have met two families who have sons that are both going through the same ordeal as Benjamin.

Elijah is one boy who's heart problems are almost exactly the same as Benjamin's. He had his surgery today. We had a chance to talk to them today and they said that it went well and they were able to do everything they wanted.

The second boy is Lincoln. His heart problems are different, but his heart stops beating and they have to shake him to get it to start again. Very scary. Unlike us, they were completely caught by surprise with Lincoln's heart defect. They found out after he was born so everything has been much more stressful for them.

Please keep these two boys and their families in your prayers. Darin and I know what they are going through and we just pray that they find some peace and assurance. We have been praying for them since we met them. Perhaps you could send a prayer up for them too!

They closed him!

We are happy to report that they closed his chest today! He looks so great and he is holding strong. He's peeing a lot now which is great! They had to give him medicine for that a couple days ago because he wasn't peeing enough but now he's peeing so much they have to give him potassium supplements. The nurse said that it's great though. They left his chest drainage tubes in because the doctor saw a little more drainage than he would like but not a lot. Hopefully his main tube will come out in a couple days. His swelling is definitely down as well and now he's just hanging out.

Yesterday they had to up his sedation meds because he was having times when his heart rate would jump up really high and they associated it with pain. They thought perhaps he was feeling some pain so they increased it. He still gets them every once in a while but they're hoping with more meds it'll go away. They'll eventually start weening him off of the sedation stuff and just keep him on pain meds so that he can start becoming alert again.

We're just really excited that we've reached this point because now it feels like we are finally going to start focusing on his recovery and getting him home! We can't wait. We will keep you all posted as he progresses!!