After being home for 1 week...

I apologize for not updating our blog sooner, but sleep, nursing, and eating have taken over my days. If I'm not nursing, I'm sleeping when Alex is sleeping or I'm trying to eat something while Alex is sleeping. Our first week home has been uneventful (hooray!) and has consisted of attempting to get into a routine, get the house put back together and catch up on the never ending loss of sleep. Here is a quick recap of what's occurred over the week:

Sunday- Alexander's First Saint Patrick's Day!

 

We went for our first walk around the neighborhood. Then Grandma Cindy and Grandpa Randy brought dinner over for us. Alexander's Uncle Dustin and Auntie Maira joined us for dinner too.

Monday- We met with Alexander's new pediatrician at SC Pediatrics. He was pleased at how Alex looked and that he had gained weight! When we left the hospital, Alexander weighed 6 lbs. 1 ounce. The pediatrician weighed him at 6 lbs. 5.5 ounces! :-)
We continued to deal with adjusting to some sort of sleep and feeding schedule. Wes and I decided to try and feed Alexander by bottle, every 8 hours, to get three bottle feeds in and try to nurse twice in between those bottle feeds.

Tuesday- We made an unplanned visit to CHLA. :-(  During his midnight feeding, I noticed a pimple on one of his incisions and became concerned because Alexander's discharge paper work stated that if there was any redness, swelling, or puss pockets, to call the cardio surgical team. So, when we called at midnight, the doctor on call stated to call in the morning and make an appointment. When went to CHLA that morning, we were told by the NP that it was just a pimple! (phew!) and to keep an eye on it. In addition, since we were already at CHLA that day, the NP went ahead and did his check up, so we wouldn't have to come back down in Friday for our planned visit. The NP was pleased to see his weight gain and stated to continue as is with his feeding schedule.

Wednesday- Alexander slept all morning (which means I slept most of the morning) and was awake in afternoon. He got sick in the morning and spit up twice in the afternoon. This had me concerned because I don't know what's normal baby stuff or cardiac related. He didn't do it again, so I can assume that it was nothing to be concerned about and that he just over ate (let's hope). Alexander was fussy later that night when grandparents were over for dinner. Grandma Cindy had the "touch" to calm him down.

Thursday- Alexander and I slept most of the day, waking him when it was time to feed him and him waking up when it was time to be changed. When we weighed, he weighed 6 lbs, 9 ounces!! Woo-hoo, keep it up Alexander! Wes took care of the house hold chores and phone calls of coordinating stuff for Alexander. What a great dad! :-)

Yesterday (Friday)- Alex slept most of the day, which resulted him being up for a good portion of the night. Hopefully we aren't already entering into the phase of sleeping baby during the day and awake at night...His Great Grandma Jeanette and Great Grandpa Harold came over to meet Alexander for the first time too!

Today- We are going to Great Grandma Dodie's house for her birthday! It will be the first time her and Great Grandpa George will hold Alexander. Additional great aunts, uncles, and his grandparents will also be there! Pictures to come later on :)

Alexander is also starting to fit into his newborn clothes, no more preemie! :)We continue to pray and have positive thoughts that Alexander will continue to thrive at home and gain weight! I want him to be a chunky monkey :) Next Thursday, we meet with the cardiologist-hopefully that will be another positive visit as well.

Recap of the past week

Going home!

Yup! I'm a little miracle!

Wow! It's been a long week, with lots of events occurring. Here is a quick review of what occurred over the past 6 days. On Sunday during rounds, the NP (same one we had on Saturday) said that Alexander's NG tube could come out because he had gained weight and they wanted to see how he would do with exclusive breast feeding. We were told that if he did well and gained weight, we could go home Monday or Tuesday... Monday was not good. It began with Alexander's lips turning blue after his bath. The doctors ran test and since everything came back fine, they seem to think he was just cold and upset about having the bath. 2 hours later, Alexander aspirated on his medicine I was giving him by mouth ( with the nurse training me). His oxygen level dropped down to 51%, he turned blue and collapsed into the nurses hand. All I could to was shout his name while the nurse got him to breath and get his oxygen back up. I was so thankful that my mom was there with me since Wes was still at work. Alexander got better as the day went on but this mommy was an emotional wreck! The positive for the day (besides Alexander acting more like himself), was that Wes got another 2 weeks off from work! Tuesday, Alex's meds were discontinued, breast feeding exclusively continued and close monitoring occurred. Wednesday, Alexander continued to do well and lost a little weight. It was decided to begin introducing a bottle, twice a day, (which had me on edge because of the last time I gave him something by mouth) because it is hard to determine how much Alex is intaking when I nurse. However, nursing would continue though. The OT worked with Wes, grandma Jeannie, and I on how to feed him by bottle. He also started his vitamin D by mouth (another moment of being on edge) because I can't provide it through the breast milk. Thursday, Alexander gained weight and it was decided that we would incorporate 3 bottle feeds throughout the feeding and I would still nurse. On top of that, we were told we could go home!! We have to monitor Alexander's weight and see his pediatrician on Monday. Then, meet with the cardio team next Friday, followed by the cardiologist the following Monday. If he loses weight while home, fortifying the breast milk will be discussed again. The pediatrician and NP will be in close contact in regards to his weight. Yesterday, we had help from both grandma's to help us get things into some sort of routine. Alexander eats about every 2-2.5 hours and we have incorporate bottle feed every 7 hours. It was an exhausting day but I'm sure once we find a routine, Alexander will thrive more than he already has. Today was a quiet family day! We are beginning to get the house in order and our life into some sort of routine. Alexander gained weight this morning too! (we weight him every morning). After 5 nights straight of sleeping in the hospital and many nights of being at the Ronald McDonald house, it is SO nice to be back in my own home! Keep praying and sending positive thoughts our way that Alexander continues to gain weight and be the little Superman that he is!

It may have been a rumor...

Friday...

Friday was an emotional day for this mommy because Alexander was fussy majority of the day. He would fall sleep for about 5 minutes and then wake up, crunch up his legs, and cry for awhile before falling back to sleep. I'm thinking he had gas and was given medication for it last night (which seemed to help). The beginning of the day started off interesting. During rounds, we were informed thatAlexander gained a little bit of weight! :) I discussed with the team, that since there was a rumor of us going home next Friday, what would be going on with some of the feedings(would the NG tube still be there? Was there was going to be an increase in Cc's?). The NP and rest of the team, were all surprised to hear this and therefore, the date isn't accurate. The NP said that if we went home next Friday, that would be great but probably wasn't going to happen. So our date to go home is still unknown. The NP also stated that I could increase the breast feeding time to 10 minutes during the day and at night, his bottle feeding would continue. The NP told me that an increase in Cc's wouldn't happen because they are still watching his respiratory rate and the NG tube will be removed prior to going home, if he can keep his weight up. She then came in after rounds and informed me she could relate to where I was coming from because she is also a new mom that is breast feeding! I wonder if she found my blog-because why the change?

Today was a much better day! He slept most of the day, only waking when his vitals were checked, needed a diaper changed, or when I woke him for feeding. Today, we had a new NP  (actually she wasn't new because she saw Alexander while in the ICU) and she stated to put the bottle feeding on hold, and breast feed around the clock, every 3 hours.Talk about a change in doctors! So tonight, Wes and I are staying at the hospital, so that I can breast feed every 3 hours..just like if I was at home. Bottle feeding was attempted last night but Alexander couldn't be woken up at the two different feedings- he was just to tired. Alexander did lose a little bit of weight, but the team didn't seem worried about it and that he seemed to be staying in the same area. Breast feeding went well today too! He latched on for 10 minutes each time. Some of the nurses think that if he continues to do well tonight, into tomorrow and has gained weight, that the NG tube might be removed! :) Hopefully this is true!..

Snuggle time with daddy!

Feedings....

What an interesting past two days! Alexander is doing very well with his oxygen, but his respiratory rate has been fluctuating, so doctors are watching it. The main focus now is his feeding, which is going okay. I say okay, because he's losing weight :( but he is getting better with taking the breast and tolerating his feeds through his NG tube.

Yesterday, the doctors said to start bottle feeding him... As much I as I prefer Alexander getting used to the breast first, I really don't want to go home with the NG tube and he's going to need the fortified formula for his calorie intake. So I said okay. So, to start the bottle feeding, the doctors said to have Alex breast fed 5 minutes before his feeding, then to bottle feed for several minutes, then to continue with the feeding through his NG tube. What a mess that was!!  He went from my breast (where he can control the flow), to a bottle (where he had NO CONTROL and milk was just pouring out of his mouth), to his NG tube, where he doesn't have to do anything. After all was exposed, he vomited when the tube feeding started! :(
During the next feeding, OT arrived  and said NO to feeding breast and bottle at the same time..it just confuses him (which I completely agreed with!). So it was decided that during the night, Alex would be fed by bottle 2 times, out of the 4 feeding sessions throughout the night and during the day only breast feeding and tube feeding. Yesterday's positive was that Alexander is completely off the morphine and can be given Tylenol if needed, which he hasn't! :) He also got to see his daddy and both his grandmothers too!

This morning,started off pretty good, with Alexander doing very well with latching during the breast feeding. During rounds, I found out that the bottle feeding never occurred over night because it wasn't in the case notes!!!! They have told me that it will be started tonight ...we shall see.
 During each feeding today, Alexander latched and with each time, he latched for longer periods of time! We are up to about 7 minutes now without taking long pauses! I'm very pleased and hoping we can still prove the NP wrong. Tomorrow I will be inquiring what the plan will be if he continues to lose weight, why his volume hasn't been increased (we are still at 40 cc's) and when the feeding tube will be removed. Especially since they are estimating that our discharge date be March 15th-next friday!!!! I'd be happy to leave next week, but i don't want the feeding tube to go with us! Hopefully I will get some answers.

I also got to give my baby boy a bath today! First time bathing him and first time seeing him with no lines!! Very happy moment! Since today was a better day than yesterday, I hope that tomorrow is better than the past 2 days and it leads into a great weekend!

We moved to CV Acute! :)

Yes, as of Sunday night, we moved to CV Acute! 

Yesterday, was an adjustment day. Wes went back to work, Alexander's Grandma Jeannie has been helping me out and I began learning the new routines the nurses and doctors complete (a little different than the ICU), with many moments of frustration occuring!
 When rounds started yesterday, our nurse asked me if I had any questions for the doctors. I stated that I wanted to be included in rounds and she said "oh, well we've already conducted rounds but I'll recap you". (First frustration of the day!). Second frustration-the nurse practitioner told me that I wouldn't be able to do any bottle feeding because Alexander's respiratory rate was high. I reiterated to her that I wanted to breastfeed first before bottle feeding and she told me to not set the expectations so high! This all occurred within 2 hours. Then we were told that within the hour, we would be switching rooms because his monitor wasn't reading his pace maker correctly. The switch of new rooms didn't happen until that night! Then an x-ray technician showed up and said that he was going to conducted a chest x-ray, which was news to me! Our nurse then informed me that a chest x-ray was ordered because he hadn't received one in a week. Luckily, I had noted when his last x-ray was and was reassured that it was okay and not unnecessary. On a good note- Alexander's morphine has decreased to every 12 hours. OT arrived and assessed Alexander on his sucking, swallowing, and breathing coordination and he did beautifully! She began the assessment by putting breast milk on finger and feeling his sucking, then breast milk on his pacifier, followed by breast milk in the nipple of a bottle. Since he was doing so well, we put him to my breast and he latched!! and continued to latch on and off for 4 minutes!!! Very happy and relieved mommy! :)

Today was a much better day-but busy! The nurse informed me of when rounds were to begin and I was included in his rounds. The nurse practitioner still prefers bottle feeding than breast feeding. However, she did state that I could continue to try breast feeding for 5 minutes prior to his feeding. Alexander's been taken off the morphine and his feeding has been increased to 40 cc's (a little over 1 ounce) every 3 hours. The OT came in today and observed Alexander breast feeding. After assisting me and providing me with suggestions, he latched on for 4 minutes and latched again for 4.5 minutes during his second feeding later on in the day! Woo-hoo!! Making progress!! :) I told Alexander we are making a goal to prove the nurse practioner wrong! :) Alexander also had his stitches removed (which he didn't like) and had his hearing tested, which he passed. Overall, a very busy but positive day! Hope that tomorrow brings more positives, but maybe not so busy, so that I can get his daily blog done. ;)

Today could be the day...

Alexander had another good night and has had a great day! He's finally breathing room air-no more oxygen support! :-) Happy parents here!

Now that Alexander is off of the oxygen, he is continuing to be weaned off the morphine and increasing the volume of his breast milk. Since Alexander was born, he has gained 1 pound! Not bad for a boy that has just started eating! :)

 Tomorrow I will get a chance to talk to the OT breast feeding and hopefully she'll be able to help me with getting Alexander to latch on. I'm also hoping she can help me keep him calm when I place him on my chest, for skin to skin contact. Lately, each time I place him on my chest, he cries and immediately calms down when I cradle him. I keep reading how skin to skin contact is great, but I seem to be having trouble with getting him to like it (at least when his chest is against mine). Anyone have suggestions? I'm sure all you moms do...

A few hours ago, our nurse informed us  that she was working on Alexander's paper work to be transferred to CV Acute and that there may be a room opening up for us by the end of today. Let's hope! Wes goes back to work tomorrow and would like to be in the new room before he leaves. You know it's time to leave when doctors and nurses are commenting "You're still here!?". Keeping our fingers crossed....

The wait continues...

 Alexander had a good night last night and woke up when we arrived this morning! I got the chance to work on feeding this morning. He seemed to latch on occasionally and was very comfortable with being in mommy's arms. He even stayed awake for majority of the time too.  Hopefully my approach to breast feeding is correct and that I'm not taking a step backwards. Guess I'll find out on Monday when OT comes to reassess him.

Wes held Alexander during his second feeding, in which Alexander fell asleep and stayed asleep when Wes put him back into his crib (something he doesn't do with me...daddy's got the touch apparently).

 Alexander's agenda for today is to continue to be weaned off the oxygen and morphine, and increase his calorie intake by fortifying the breast milk. We are still on the "waiting list" to be moved to CV acute. We (Wes & I, doctors, and nurses) are just waiting for a room to be available and then we can go. Let's hope it's soon!

Still in CICU, but should be moving soon!

Sorry everyone for not updating on a daily basis. Alexander has continue to stay the same, with small improvement that his doctors are happy to see. However, Alexander has managed to send me on an emotional roller coaster the past two days with breast feeding exposure and his oxygen levels.

Yesterday, his oxygen level and his respiratory rate continued to fluctuate, which worried me all day. In addition, he was fussy majority of the day. Wes and I weren't sure if Alexander was fussy because that is what baby's do or if he was in pain. So anytime Alexander cried, we rocked him, provided him his pacifier and checked his diaper constantly. Some of these things worked and he would calm down for a few minutes and then start crying again. We discovered this morning that his fussiness was most likely related to his GI tract getting adjusted to the food he was consuming. Once he had a bowel movement, he was fine. So we've learned that our boy doesn't care to be wet (who does though?), enjoys being soothed by his pacifier  and wants to be rocked majority of the time. I can't wait to be home and use our rocking chair instead of rocking him in a regular chair.

With yesterday and today's feedings, he continues to tolerate the feeding amount. Yesterday, the nutritionist set his goal for 34 cubic centimeters (cc's) and by the end of today he should be meeting that goal. He could actually be sent home in-taking 34 cc's. So next step is taking food (breast milk) by mouth! I've continued to expose him to the breast while he gets his feeds, but it was VERY frustrating yesterday because all Alexander did was cry. I wasn't sure if I was doing it right and I had no one to assist me! When I asked the nurse this morning to contact the OT, so that I could get some assistance with breast feeding, the OT instructed for me to continue to be proactive with exposing of the breast and that she would reassess him on Monday! So, hearing that had me slightly irratated because I really didn't want another day like yesterday. I tried again this morning. He didn't latch on BUT he didn't cry either! He kept his eyes open when I put him up to the breast and was okay with checking out with what was in sight. :) Needless to say, I was smiling this morning. Let's hope the next feeding goes just as well, if not better...

Yesterday, we were informed that we no longer need to wear the ugly yellow gowns, masks, or gloves!

In addition to the fussiness and frustration, we also moved rooms again yesterday! We are still in the CICU, but we've been told that we are on the "waiting list" to move to Cardiovascular acute unit (CV Acute). Once we are there, it will be come more "hands on" for us parents. There is one nurse for every four patients (currently 1:1) and so parents participate in diaper changes, bathing, delivering medication-parental stuff...so I'm probably going to be busy once we do move. Hopefully that will be in the next day or two. :) Once we move, we are that much closer to going home!