Heart of Beckett

UPDATE (2/28/13)
Two months. It is hard to believe it has already been two months since we welcomed Beckett into this world. Some days it seems as though it has been longer, and some days it seems as though it was yesterday. We have experienced so much in the last two months and are constantly reminded of what a precious gift Beckett is in our lives.
Yesterday Beckett had an abdominal ultrasound because his stools have been a clay color for a little while, he has looked a little more yellow, and his direct billirubin has been up. The ultrasound showed his common bile duct is dilated and has some sludge in it, but it is not obstructed (which is a good thing). They began him on a medication last night to help clear it out, and are drawing labs again in the morning to see if it has changed. It is possible his infection is playing a part in this, but they are saying they don’t think so since the infection is localized within his wound. Speaking of his wound. It is looking so much better. It is almost completely closed and the redness has gone away and now looks like scar tissue. We keep praying once he finishes the antibiotics it is gone for good.
We have been told from the beginning Beckett will most likely need a g-tube when he goes home. Pediatric surgery came yesterday for the consult and explained the procedure. It is a surgery, so of course there are risks involved but he said complications are typically rare. They won’t do anything until he is off his antibiotics, so it won’t be until the end of next week that they would begin looking at that. It also requires an upper GI study prior to the surgery to make sure there are no surprises with anatomy. Beckett will also need a swallow study soon. This test shows whether or not the milk is going into his stomach like it is supposed to, or if he is aspirating into his lungs. He has to be able to drink a certain amount by mouth in order to do the test so we keep practicing. He is allowed to try 5 mLs twice a day. Even if he would take more that is all he gets for right now. The first try yesterday he was not interested and the second he drank maybe 1 mL. That could even be stretching it. Today the speech pathologist tried the first attempt and he drank about 4 mLs. On the second try I was able to do it with him and he drank the whole 5 mLs. He didn’t choke at all. He pulled away a few times, but as soon as you would offer it he would take it back, and he even rooted on his own. What a good job he did! The speech pathologist says he has great oral skills; it is just a matter of swallowing.
A dear friend, whom many of you know, Emily Coon, made the name sign along with bible verses for Beckett’s window. Yesterday the chaplain stopped in and said she has walked past so many times and just loves them. She said she has enjoyed them so much she just had to stop in and introduce herself. We have had so many people ask about them, and at night when the lights are out people don’t think we are in there. Jonny and I sit and watch as they stop to read and talk about them. Thank you so much Emily for giving us such a special gift!
Beckett had physical therapy yesterday but skipped OT because he had a busy morning and had just fallen asleep. Today he had both of them. When I arrived this morning there was a note from “Beckett” that told how well he had done in PT today, and all the exercises he has been working on. It was so nice of the PT to write that to us so we can keep up with how well he is doing since they normally get in before we are there.
We are getting closer each day to being able to go home which means having to begin learning how to give meds and other things. Last night I was able to give Beckett his Lovenox injection through his port. We aren’t sure if we will be using the port when we go home or if we will just give him straight injections (he has to have them twice a day), but it was fun to get to practice. Last night Beckett had lost a little weight. Tonight he had gained a lot back. That is so great, as it is very important he continue to gain weight and grow stronger. The cardiologist also came to see him this afternoon. The murmur from his shunt sounds great and they are cutting back his Lasix from three times a day to two. He also had his methadone weaned yesterday. He is getting so close to being off this completely. He only has about two or so weans left. He has been doing really well with it.
I have also started to see his demeanor return. I am so excited about this! He hasn’t been crying nearly a much, he is sleeping so much better and for longer periods of time, and he has been tolerating his feedings well. Today he also lay quietly in bed just looking around for a while and then would calmly fall asleep. He hasn’t just lain in bed without crying for a while. I am so glad to see that he is doing better, and so sad I caused him discomfort when I was just trying to help. But, things are looking better, and he is much happier than he was, so I am thrilled.
Beckett had a very special visitor today. While we were in the PICU there was one particular doctor who was there for a lot of Beckett’s “big” days. She was also there a lot while he was on ECMO because she is the director. It was evident she truly cared about Beckett, and his recovery, and we have missed her a lot since being in the NICU. But, today Dr. Kay was able to come over and visit Beckett! It was so good to see her, and for her to get to spend time with Beckett as well. He woke up right as she got there, so he was wide-awake for her visit. He was crying so she picked him up, and he of course stopped. She told him he could have whatever he wanted, and even offered him ice cream. She told him that even thought people are starting to love him in the NICU, he will always belong to the PICU. She thought he looked really good and couldn’t believe how fat his cheeks have gotten. It was such a joy to catch up with her. We have missed seeing her and having her care for our son. She was such a comfort through some very dark days. We are glad people like her are working with Beckett.
The last two days have been less eventful than the few before and for that we are truly grateful. We look forward to less intense days but continual progress towards taking Beckett home. That day is coming soon!

— with Jonathan Rupp at St. Vincent Women’s Hospital.

UPDATE (2/24/13)
The last two days have had both good news and bad news. I will begin with the bad news so we can end on a good note. For the past couple of days Beckett has been having trouble digesting all of his feeding. He was getting a feeding over an hour period and then would have two hours before his next feeding. Before each feeding, they check what is called a residual to see how much is undigested. Beckett has never had a problem until last Thursday. He had one feeding where he had a small amount of residual, but it only occurred that one time. Starting Friday night, he had a large residual before one feeding, and continued to do the same all through the night. He also vomited a significant amount after one of his feedings. So, Saturday morning they ran a bunch of tests. They checked his blood for signs of infection and did an x-ray of his abdomen. Everything came back normal, so they began giving him his feedings over two hours, thinking maybe he just needed a longer time to digest. Then last night he was still having an issue so they did an x-ray again just to make sure nothing had changed. They now expect to have some residual since the feeding is longer so they actually aren’t checking that at this point. However, both yesterday and today Beckett has also thrown up multiple times. He typically seems to look and act better afterwards, so we are glad he is getting it out, but wish it wasn’t happening at all. Side note, when he vomited on Friday night, we had just given him a bath and put on clean clothes for his Facetime debut at the benefit in Gaylord. He started making a face like he might throw up, so I quickly said something to the nurse. The second she put the cloth diaper under his chin, out it came. Quick draw McGraw saved the day. Nice catch Jaime!
Early last week my mom and I were talking about how unsettled Beckett has been. He doesn’t seem to sleep as well, arouses easily, sleeps for short periods of time, his resting heart rate has been higher, he was fussier than normal, and then to add the digestion problem. They thought this was possibly due to withdrawal, but he seems to be tolerating that well. As I mentioned in a previous post, I was having trouble with my milk supply so have been looking in to tricks that may help. One thing I was told was to drink hot tea. About a week and a half ago I began drinking tea all throughout the day, and even increased the size of cup and amount of bags on Thursday. After researching and praying, I have come to the conclusion that the large amount caffeine is affecting Beckett’s digestion as opposed to him not being able to tolerate feeds over an hour, since before he was having no problem. Now, I am not a doctor, and I have no scientific expertise to base this off of. However, I have a mother’s instinct and believe God has confirmed in my spirit to stop drinking tea at this point. I spoke with the doctor and a few nurses today and according to them it is a possibility. The only way to prove or disprove the theory is to stop drinking it, which I have done, so I pray we see a change, more specifically an increase in tolerance without vomiting, within a few days.
Today I came to the room and there was a sign on the door to speak with the nurse before entering and had pictures of a gown and gloves. Being a nurse I knew immediately Beckett was now in isolation, but what I didn’t know was why. When I asked the nurse she informed me Beckett has MRSA. For those of you who don’t know, MRSA is a bacteria that is resistant to a lot of antibiotics. It is easily acquired in hospitals and places of communal living. In the NICU they swab every baby’s nose weekly, and Beckett’s last week was negative. The swab that came back positive was from the wound at the top of his incision. This means Beckett’s infection is localized to that area and is not throughout his entire body. While it would obviously be better for him not to have it at all, it is good for now that it is contained in his wound. Beckett would be at greater risk should it enter his blood stream because of his shunt and his blood clots, as bacteria stick to these things and would be extremely difficult to get rid of. If it were to get in his blood it would become very serious. So, they are putting prescription antibiotic ointment on the wound, as well as his nostrils and butt per protocol. They also put in an IV and started him on at least a ten-day course of Vancomycin. They are treating it aggressively to knock it out quickly. Putting in the IV was quite the ordeal (wishing he still had that PICC), and Beckett was drenched in sweat, but thankfully the nurse was successful on the first try. The actual wound area is looking better and has had significant decrease in drainage. They are doing an ultrasound of the area in the morning to make sure there is not a pocket of fluid collection that would need to be drained. This would most likely require taking him to surgery and opening the area up to let the infection drain out. We pray that there is no abscess and that the procedure won’t be necessary. We also pray the antibiotics work effectively and the MRSA will not spread throughout his body.
Now for better news. They turned Beckett’s Vapotherm down to one liter yesterday morning and took him off it completely today. Unbelievable, and such a huge step for Beckett. He is now on a simple nasal cannula and has been doing great all day. He is so close to being off oxygen all together. If he continues to do well hopefully it will only be a few more days. I didn’t tell Jonathan, so when he walked in this afternoon it was a wonderful surprise for him. The respiratory therapist also helped me take some pictures when she was making the change since he didn’t have all that stuff on his face. It was amazing to see him with just his little feeding tube. It didn’t even look like the same baby. Still cute as ever though!
They will also most likely wean Beckett’s methadone tomorrow. They did have to give him a rescue dose of morphine on Friday night, but looking back I think it was more related to the caffeine than actual withdrawal. Hindsight is 20/20. But if he continues to do well he could be off methadone within about a week. More great steps forward.
Another really special thing happened today. My dad was sick when Beckett was first born, so while he came to the hospital the night of his birth, my dad did not hold him. After everything that transpired my dad has not yet had the opportunity to do so. Until today! My dad held his grandson for the first time. It was such a special moment for me to see my son in his arms, and it brought tears to my eyes. Beckett loved it and fell asleep so peacefully. I was so glad it was finally able to happen for both of them.
I have really struggled the last few days. I have been overwhelmed and sad for Beckett, and it has felt like nothing but bad news. I just can’t help but feel he can’t catch a break. But it hasn’t been all bad news. They keep telling us two steps forward one step back. I am holding on to all of the positive things that happened this weekend. Even in the midst of steps backwards, Beckett has continued to move forward in other areas. God continues to ask us “how much do you trust me?” That is so hard, and we continue to do the best we can. I think it is only natural to have weak moments. But, tomorrow is a new day!
I also wanted to say a quick thank you to all those who were involved in the benefits this weekend. That means everyone! Those who planned, attended, gave, spoke, organized, etc. Everyone! It is extremely overwhelming and genuinely humbling to be showered with so much love and support. We appreciate each and every one of you. Words cannot describe. So I leave you with thank you, and that will never express enough!
— with Jonathan Rupp at St. Vincent’s Womens Hospital.

UPDATE (2/21/13)
Beckett has been through a lot these last twenty-four hours. A lot is relative to where we are, but I guess it’s nothing in comparison to where we’ve been. Since Beckett had his PICC line removed they now have to poke him for his weekly labs. He has blood draws every Thursday morning around 2am. Last night they were unable to get his blood so they tried again at 4am. They were still unsuccessful. I came in this morning and he was very sleepy, he hardly even woke up for his occupational therapy (he had already had PT this morning). He just let her stretch him while he continued sleeping. His nurse said it is probably because of all the stress he underwent through the night. Cardiac babies don’t have a lot of reserved energy and when they get stressed they just tire out quickly. So, he slept a good portion of the morning and afternoon. He had a little mark on his head, just above his hairline this morning. I said something to his nurse about how he must have scratched himself, and she informed me that was actually one of the locations they tried to get blood. Oh, of course. I should have known. Well, since they weren’t able to get his blood over night that meant trying again this afternoon. Beckett has to have blood draws to follow for infection as well as monitor levels of his blood thinner. It took two more sticks before they were successful. Beckett handled it like a champ. He cried initially, but who wouldn’t, and then settled down while they “fished” for the artery. He actually tolerated it really well. He of course was mad and sweaty though, so he got a little bath and clean clothes. Then he had lots of comforting cuddle time with mommy. (I am putting up the picture of how zonked he was after the ordeal).
Speaking of him sweating. This kid is out of control. They other day one of his nurses put up a sign that said “Please don’t cover me in fleece. I get too hot. Thanks Beckett”. Well, that still doesn’t solve the problem entirely. I even brought in swaddle blankets from home because they are thinner and they have been making his bed with those. He still gets them wet with sweat. I took all of his laundry home last night and washed it so everything would be fresh and clean. I came in this morning and he had already gone through three outfits. Most likely because of all the attempts at blood draws. I counted tonight when Jonny and I left, and he had worn five outfits since ten o’clock last night. I think he is going to learn to do his own laundry at a very young age! I can’t keep up with that craziness.
I mentioned last night about the top of Beckett’s incision. Well, they have been cleaning the area throughout the day. His primary night nurse, Kathy, has been suspicious of it for a few days. Which, we are of course thankful she is keeping such a close eye on it. Tonight she went to clean it and rolled the cotton swab from the bottom of the scab and lots of puss came out. We were all a little shocked by how much came out since we thought it was just a little spot. Then she did it again and even more came out, as well as the scab came entirely off. It looked like a little divot. She called the doctor in to look at it. He called the nurse practitioner that works with the surgeon. They agreed they are going to watch it very closely as well as begin putting antibiotic ointment on it. It appears to be localized to that area rather than something more serious. His blood work from this afternoon also did not have an elevated white count nor has he had any kind of fever, so no signs of infection at this point. We pray that continues to be the case and that it begins to heal from the inside out. It is not particularly concerning at this point, but needs to be monitored closely as it is close to his heart and could be a direct route for infection should he get one. The nurse practitioner is also coming back tomorrow to look at it again. Thank you Kathy for following your instincts and paying specific attention to this!
I also spoke with speech pathology today as to when Beckett might get to try taking some food by mouth. They are in no rush, and said they have to be very cautious. Of course we would not want to do anything unsafe, but we are eager to begin tackling this challenge. She said at this point we are looking to be here for at least another month. That is not what I wanted to hear. We were initially told it would be about six weeks from surgery to home, and we have been here for about eight weeks already. Beckett apparently wants to take his sweet time. We are praying Beckett soars through this phase so that we may take him home with us sooner.
One good thing from the speech pathologist, Beckett is starting to have a little more of a voice! This is huge! She said when she was with him yesterday his cry sounded less like hoarse air and more like a voice. Now, it is still very soft, but it is voice nonetheless. My mom and I had been talking about the same thing yesterday. Within the last three days he has begun making a lot more noises: cooing, grunting, sighing, etc. You know, all the typical baby noises. I can’t believe how big, as in age, he is getting. It is so fun to hear all his sounds, and he seems to make more everyday, as well as get a little louder. It is crazy how much he changes each day. It is truly a thrill to get to spend each day interacting with him. He is just a little darling. I can’t wait for those of you who are attending one of the benefits this weekend to “meet” him. And for those of you who can’t attend, we look forward to him meeting you in the future. A friend of my in-laws came to visit me today and joked that we will need to sell tickets because the line of people wanting to meet him will be so long. It is humbling to know how many people know my son’s name, how many people pray for him daily, and how many people care for him deeply despite never having met him. You all have been, and continue to be, so kind to our family. We cannot express our gratitude for rallying on our son’s behalf.
Back in January, my mother-in-law, Linda, shared these verses with Jonathan and I. They are speaking about John the Baptist, but God gave them to her specifically for Beckett.
“He will be a joy and delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord … and he will be filled with the Holy Spirit even before he is born.” Luke 1:14 & 15

Amen.

— with Jonathan Rupp at St. Vincent Women’s Hospital.