Hello, all! What a whirlwind of fun festivities and holiday visits it has been! I hope that each one of you had a spectacular, unforgettable Thanksgiving with family and/or friends and lots of delicious food. At our gathering there was fun and games, food, karaoke (though I did not participate, and for good reason), and more food and more games! Dave, Ethan, Liam, and I are all still recuperating from missed sleep...there was a lot of fun having, and little bit of sleep getting. At any rate, some of our family was able to come to the hospital to meet Owen and Emmett, and boy, did the boys have a blast! There were so many smiling faces looking at them, and they couldn't help but smile back at us.
They also got to meet their Uncle Tris and Aunt Sarah from Scotland, UK, though I don't have photographic evidence of this. At any rate, the babies loved meeting everyone, and were VERY tuckered out afterward!
I know it has been awhile since I last updated everyone on how the babies are doing. I usually have a lot to say because a lot happens between each blog, but I can happily say that it has been a relatively uneventful stretch of smile filled days. The babies have started LOVING play time. I mean...can't get enough of it!! In fact, I had Owen laughing so hard, I thought he was complaining, but if he could have made sounds, it would have been squeals!
Holiday season has arrived. I'll be honest, I am feeling low-in-spirit, and I can't shake it. The babies will be spending this holiday season in the hospital. Though this idea was given credence in the spectrum of outcomes possible, I had my hopes set on an apartment full of squealing kids and overflowing with laughs, camera flashes, hugs, and discarded Christmas wrap. I have always been a lucidly selfish individual when it comes to delighting my children during the holidays, even when they are too young to appreciate a wrapped present - they enjoy the rattle of the discarded wrap. I love the traditions that we maintain, and the togetherness time... Sadly, my children won't be able to experience Thanksgiving and Christmas as a family unit. Dave and I will be trading off one set of boys to spend time with the other.
As I was headed to the NICU this morning, I encountered a woman in the elevator who, after asking me which floor, established that I was a NICU mom. She volunteered that they had just had their new arrival yesterday (she was the grandmother, I believe). I congratulated her. She asked me how long my baby had been in the NICU, and I sated that there were 2, and they had been in for nearly 4 months. And there was no indication from either baby that we would be home bound in the foreseeable future.
Yes. I am feeling a bit run down. I will admit it openly. Freely. gratis. I won't charge you a dime.
Last week, both boys were taken downstairs for an upper GI study. The doctors were able to gather quite a bit of useful information from Emmett's study:
1.) His small intestines function, just veeeery slowly. This is called 'slow motility;' however BECAUSE his bowels function, he had a total of 5 bowel movements as a result of introducing material into his stomach. An attempt to feed was scheduled to take place sometime this past weekend, but has not occurred secondary to the amount of bile output coming from his naso-gastric (the tube that goes to his stomach). I have an assumption that Owen's bowels are functioning at nearly the same capacity, though this has yet to be verified.
Owen's study revealed even more information about his anatomy. Owen has a fistula in the biomesh of his wound. The vasculature (blood vessels and veins) has granulated into the biomesh, which basically means that Owen's little body has assimilated the mesh, and his body and the mesh are now one-in-the-same. So there isn't necessarily a hole in the mesh, but a hole in the abdominal wound. Repair is not an option at this point as the newly assimilated mesh and granulated vasculature is too fragile to hold a stitch to close the fistula. The general consensus is that the fistula should eventually heal itself. Until then, bile leaks Into the wound dressings from the fistula, which also indicates a very minor opening in the intestinal tract somewhere, most likely where the intestines were repaired. This should also heal on its own, and again, due to the fragility of the wound, surgery cannot be performed to repair the leak at this time. All of this to say that the barium, after placement in his stomach, leaked out of the small intestinal leak, then through the fistula, and eventually was absorbed by the wound dressing.
The second portion of findings makes a whole lot of sense, but let me write a preface before revealing the findings. Owen has been struggling with breathing 'episodes' for several weeks now. It always begins with him getting upset about something, then escalates to him crying, then his oxygen saturation level dropping, his heart rate dropping, and him basically passing out and eventually coming back around after the ventilator rate and oxygen settings have been increased dramatically.
The study revealed that Owen has a hiatal hernia. In normal anatomy, the diaghragm has an opening that allows the esophagus access to the stomach. Owen's stomach protrudes through the opening in the diaphragm and is hanging out in the chest cavity, which is contributing to his breathing struggles. So, the hiatal hernia, tracheomalacia, and current infection is giving him troubles. And again, corrective surgery cannot be performed until their abdominal wound is healed.
All that said, the babies still have a significant stay in the hospital ahead of them. So in the meantime, I have been trying to make it as pleasurable as possible. I purchased (with trust funds) bouncy seats for them. And they like sitting in them. On Halloween, they BOTH were able to sit in them NEXT to each other! It was the first time since surgery that they have been close enough to each other to be in the same picture.
So for starters, the boys continue to be stable and recovering slowly. Emmett and Owen have had some time now to adjust to their tracheostomies (trach's) and in that time it has become clear that giving the boys trachs was the right decision. The boys appear to be much more comfortable now that they are no longer encumbered by vent tubes, nose bars, and uncomfortable face tape. They can finally place their cute chubby little hands and fingers in their mouths, a favorite pass time of infants the world around, now a much loved activity of our sweet boys. In fact just today after much effort, Emmett was able to free his splinted hand and rebelliously suck his thumb. His nurse was almost sad to return his hand to the splint. As a result of the trachs, their mood has improved profoundly, and consequently their parents moods have improved as well. Few things bring me greater joy than seeing my boys grin from ear to ear when I lean in close to tell them that I love them. We may have had some trepidation about subjecting the boys to another surgical procedure, but there is no doubt that the boys are now better off.
The doctors have taken the next step in understanding the boys reluctant bowels. This week they performed an upper GI study on both Emmett and Owen in hopes that they might be able to determine where along the GI tract the stoppage/slowage is occurring. We have not yet heard the results of these tests but we and the doctors are optimistic that this is the next logical step to a solution. Considering that the boys are continuing to grow (Owen is now over 13 lbs and Emmett is 12lbs 9oz) the TPN nutrition is an acceptable interim until we can solve the problem of the boys' persnickety gastric systems.
We continue to see the loving work of our God everyday. In the hospital, prayers of comfort for the boys are being answered in the form of their trachs, and their smiles. At home God's servants (gracious members of The Ridge Church) have brought us numerous meals and words of encouragement. God's light is shining through my coworkers everyday as they provide support in the form of encouraging words and a gift card for dinner for two and the offer to babysit so my wife and I can have a date night (Thanks so much Jack Spriggs and Robyn Sargent). God's blessings are abundant and continue to arrive when we need them most. Father thank you for blessing us.
Three Good things
1) My beautiful, intelligent, caring, wonderful wife who allows me to write a blog post.
2)The mirth that is bubbling up inside me as I think about those of you who read nearly all of this blog in my wife's voice.
3)Our powerful God and His abundant blessings.
The babies did very well yesterday during surgery. Emmett went to the OR first. After he came back to the room, it only took 30-ish minutes for him to begin stirring and trying to awaken. He was not a happy camper, so I sang one of my favorite hymns (Only Trust Him) to him to keep him calm and to try to lure him back to sleep. In all honesty, i might have kept him calm for a short amount of time, but the pain meds had a lot to do with him going back to sleep.
Owen arrived back in the room soon after Emmett, and he seemed to stay sedated a bit longer. I, however, did not get to sing hymns to my sweet Owen because we had drama at home that I had to see to!
My mom was gracious enough (and able) to come to the apartment and watch Liam for me so that I could spend all day with the babies without worrying about school dismissal, and getting Ethan, and taking care of Liam, and being at the hospital for the babies. I am so glad she did! The drama came about, though, when Liam decided he wanted to touch the spinner on the bottom of our vacuum. My mom called and said that Liam may have a broken finger, but it was hard to tell!! He was crying when he moved his thumb, but he WAS moving it, and he only cried when he tried to grip onto things. We decided to take him to the emergency room, as it was 4:45 and I we would not be able to get him to a doctor's office in time. I left poor Owen approximately 15 minutes after he arrived in the room after his procedure! By the time I made it home, and after many phone calls between Dave, my mom, and me, we decided that he had only skinned his finger, and there were no broken bones. It was quite a scare! After the initial injury and about 30 minutes-1 hour of recovery, Liam showed no signs of injury, other than a yucky blister/battle wound on his thumb. He was back to his rough-and-tumble self!
I made it back up to the hospital today to spend more time with the babies, and they look amazing! It is the first time in months that we have been able to see their faces without an excess of tubes and tape!
Owen and Emmett are three months old today. I, for one, can hardly come to grips with this fact. They each weigh more now than they did together when they were born! (At birth they weighed 11lbs. 15.1oz Currently Owen weighs 12 lbs 11oz and Emmett weighs 12lbs 5oz!). They have come so far In terms of growth and recovery, and yet we still have much more progress to make before getting to go home!
Today is a big day - for their 3 month birthday, they are getting tracheostomies. Now, I know that many of you are thinking, "What?! Tracheostomies?! What terrible birthday presents!!" and believe me, I had my doubts as well. But after a lot of questions and counseling regarding trachs, I believe that this is a good move for several reasons. The biggest advantage is that their airway will be secure and they can't self-extubate themselves anymore. We won't have anymore close calls due to breathing issues, (hopefully). The trachs won't necessarily be permanent, but they are long term and will be used until they don't need them anymore. The second major advantage is that they will be more mobile - they will be able to get out of bed more often, I will be able to hold them more often, they can sit in a bouncy seat (which will be on order soon!), and the ot/pt's can work with them and play with them more. The third reason that trachs are good for them is because they will be a lot more confortable, which will make them happy, and me happy! It will be one less tube in their little mouths. So. Hooray for trachs!! The only downside is that it is another procedure, and another trip to the OR.
As for Emmett's hand/wrist (it was not moving as of last week), he had a neurology consult, and they believe that he has a compressed nerve in his neck secondary to his scoliosis. The plan is to splint his little arm, allow the nerve to rest for 2-3 weeks, then reasses. The idea is that the nerve will heal and motor control will return. I'm not sure what the plan will be if this plan doesn't work.
As for Owen, he currently has a fistula in the mesh on his belly that is causing issues with the wound vac. The wound vac has been removed and has a covering called Montgomery straps. It is basically a layer of wound dressing covered by what looks like a corset that laces up the front. The sides of the strap tape to the sides of his belly and holds the dressing underneath in place. The idea is that this will allow the fistula to heal, which will allow the wound to heal. he is making very slow, steady progress.
Neither of them are ready to start feedings yet. They are still healing those little digestive tracts, but they are hanging in there.
In the meantime, Ethan and I have been decorating our apartment for the Halloween holiday, and it has been great fun. The only thing we have left to do is carve a pumpkin and go trick-or-treating with Liam.
One last thing. I sent the orders for shirts in this morning. We were waiting on a few sized from a few people. Be on the lookout for shirts in the next 10-ish business days!
Until then, please continue to pray for my little guys. They still (and will always) need the love and protection of the Almighty God.
In addition, please pray for any momma's out there who have hurting hearts for their babies. There are so many.
May God's comfort overwhelm you today.
3 good things:
1. Rainy days
2. A momma/family who volunteers to help out without being asked.
3. Having a husband with a huge loving heart.
I just wanted to send out a reminder to anyone interested in purchasing a t-shirt (designed by Sojung Lee - huge thank you!) - if you want one from this first batch, please submit an order by tomorrow evening (10-11-13). Shipping IS included in the price. They are $17.50 each (breakdown: $5 for cost of shirt; $5-7 for shipping; $6 for Emmett and Owen's trust fund). We have already received several orders, so thank you all for your support! I can hardly wait to receive OUR shirts!
To order, you can either click on this link:
Or you can click on 'T-shirts' in the navigation bar. Either way should get you to the correct page.
If you can't order this time around, don't fret! We will be taking more orders in about 2 weeks! (You can place an order in the in-between time, but it will take longer for us to get them filled.)
I apologize for not posting an update this past weekend. The babies had an incredibly rough week this past week, and I had a hard time coming to terms with some of the changes that we are looking at as a result. It is very easy to post when, for the most part, the news is good, and the difficulties are minor. When the news is difficult for me to process, it is even MORE difficult to write it down and to share with a group of people. However, I take comfort in knowing that because I DO share the intricacies of my babies struggles, there are many targeted prayers being said for them. So let's begin.
Emmett was scheduled for an attempted extubation this past Wednesday. At first (meaning the first 2-3 minutes), he seemed to do ok, but he eventually began laboring harder. It didn't help the situation that he was upset about the process and crying! After several minutes of his pulse-ox reading being poor and nowhere near recovering, he had to be reintubated. Despite the fact that this was not the result we were all hoping for, there is good news. An ENT doctor was present during this process and was able to look at Emmett's trachea without tubing in the way. He determined that there was no scarring, only mild tracheo and laryngo malasia. There is nothing about his airway that would prevent him from breathing on his own. Unfortunately, their are several other factors that impact this ability. I will list the ones I know:
1.) they both have a repaired diaphragmatic hernia
2.) they both have an open wound where their abdominal wall should be.
These are the two main reasons, and as I said before, I am sure there are other reasons.
Within an hour of Emmett's extubation failure, Owen's breathing tube became displaced. His pulse-ox began dropping, he was not taking in breaths, and his heart rate became bradycardic (slowed down). The doctor bagged him and the nurses walked quickly to get the necessary tools to get him reintubated. During this process, his numbers became so low that the doctor called for the crash cart. The nurses retrieved it and prepared it, as well as an intracardiac injection. I stood just outside of the room watching all of this. Watching as my babies heart rate continued to drop. Watching as the oxygen saturation level in his blood dropped. Watching as they prepared the injection. Watching as they readied the crash cart.
We nearly lost Owen that day. Very nearly. Too nearly. But praise the Almighty God, and a huge thank you to the well trained doctor and nurses who were there that day, we did not. As a result, the doctor advised that we begin considering a tracheostomy to prevent near tragedies such as this one. The benefits of this would be that the airway would be secured, and we wouldn't have to worry about the babies extubating themselves. In addition, attempting extubation would not be nearly as traumatic, as they could be easily plugged back into the machine.
All of this was a lot to take in. From beginning the day with huge hopes of having one baby extubated, and being able to hear him cry, and coo, and fuss, and laugh to the complete opposite within a matter of hours. And then shortly after this almost losing one of my babies. I wanted to curl up with my babies and weep for them and with them. Instead, I had to head home to gather Ethan from school and Liam from our babysitter. Dave remained at the hospital talking to the doctor, nurses, and respiratory therapists. He wanted to stay close to our little ones.
Thursday morning, I arrived at the hospital mid-morning after getting Ethan to school and dropping off Liam with our babysitter. Owen was resting, so I said hi to him, and let him be. He had quite an eventful day the previous day and needed the rest! I walked over to Emmett's crib, and he was wide awake. I took off his little mitts (that sort of prevent them from grabbing and pulling on their tubes) and placed a plush rattle in his right hand. It fell out of his hand, so I picked it up again and placed it back in his hand a second time. It immediately fell out of his hand again. I looked at his hand, placed my finger in his hand and realized that his right hand and wrist was paralyzed. I asked the nurse about it, and she made her own observations and spoke to the doctor about it. They scheduled a neurology consult. I held Emmett again for the second time that day. He remained content for about 7-9 minutes, then he hated it. He cried unconsolably until I requested that he be placed back in his bed.
All of this was just too much. I gathered my belongings, mumbled to the nurses that I was leaving, and headed out the door in sobs. I didn't know where I was going to go, or what I was going to do, but I needed to get out for an hour or so and process everything. Before I left, Jenine stopped me, hugged me, listened to me, encouraged me, and walked me to the first floor. I headed in the general direction of home, and eventually made it after purchasing much needed larger sized clothing for Liam.
Currently, the babies are generally stable. Owen seems to have a small infection that is being treated with antibiotics, and he continues to sleep a lot as his little body recovers, fights infection and continues to heal. Emmett is feeling better, and even smiled and probably would have laughed if he could! It still makes me cry to think that I may never hear my babies cry again while they are infants. I may never hear them coo at me, but I am very thankful that I can see their cries, coos, and laughs in their big blue eyes.
As of yesterday, the plan is to hold off on tracheostomies for a little while longer. To place a feeding tube in both of them to attempt to feed them. And to allow them to recover and heal.
May our God give you comfort, rest, and peace.
Sometimes I wish I could insert sound effects into my posts because If that were the case, I would start off with a deep breath/sigh. In this case, onomatopoeia is just not enough.
The babies have encountered a lot of bumps in their road to recovery this week. I'm not sure if these are major or minor setbacks, but I AM sure that I will see my boys through them! So let me start at the beginning.
Emmett has been on tube feedings of breast-milk for a week or so. Unfortunately, he has been vomiting 2-4 times per shift, AND they have been drawing more OUT of his stomach than what has been going in. What this means is that his gallbladder is producing bile and introducing it into his stomach, and his liver is producing the secretions needed for digestion, but the mixture of milk, bile, and secretions are not traveling through the intestines. Emmett had an abdominal sonogram that verified that the reconstructed portion of his bowels has not awakened or is simply not participating in the peristaltic wave. It's like the section of fans in the bleachers at a football game refusing to do the wave - just refusing to be team players. The culprit of this problem has not been determined. It may be (as was mentioned earlier) that his bowels have not yet awakened from surgery, it may be that this section needs to heal, or it may be that the narcotics used for pain management are suppressing the peristaltic wave. Or it may be something else entirely. Currently, the plan is to allow time for healing, and try feedings again in a few weeks.
I didn't think we would have anything major to celebrate now that the separation surgery was over, but man oh man, I could not have been more wrong!
Since separation surgery, we have been waiting for the twins' intestinal systems to wake up and begin the peristaltic waves that would initiate the movement of bile and eventually nutrition (as well as air bubbles) through their bowels. Emmett started pooping about a week ago, and that was great news! We were very excited about this. Since then, we have been waiting and watching for Owen to poop. And it finally happened! Owen pooped, and I did a poop dance, and from what I hear, our pediatric surgeon and nurse might have, too!! It was at least noted that a poop dance should be DONE.
So, HOORAY FOR POOP!!
In case you are wondering how to even do a poop dance, I will try to explain. Naturally, you have to start with a little bit of a bum wiggle, once that is going well, add in some arm waving, and a spin,along with quite a bit of vigor, and bingo...you've got the momma-can't-dance-but-she's-going-to-anyway version of a poop dance! It's actually very simple.
Which gives me a nice segue into the next topic - cloth diapers. I have been researching cloth diapers for awhile, and I will tell you, it is absolutely overwhelming! When we initially found out we were having twins, we went to a quaint store called the Green Bambino in Oklahoma City. The worker their was very kind and took the time to explain the different categories of cloth diapers to us (prefolds, fitteds, all-in-twos, all-in-ones, etc...). She even demonstrated how each type worked. At the time, I was feeling incredibly overwhelmed with the reality of having twins, and after perusing the ginormous selection and types of cloth, I felt an overwhelming need to cry!. After we found out the twins were conjoined, cloth diapers took a back seat. But now, I have finally begun the cloth diaper research again. So far, I like the concept of Sprout Change by Willow because of the adjustable elastic bands in the waist and around the legs. So, If there is anyone who can offer some 'golden nubbets' I would gladly hear you out.
All dancing aside, Emmett has been weaned off one of the heavy narcotics, and Owen is not far behind.
Emmett has also begun breast milk feedings, which is another huge hooray! Owen's stomach is still being a bit uncooperative in that there is still a lot of bile that has to be drained.
The wounds on their little bellies continue to heal, though it is a SLOW process! In addition to all of this good news, the boys are awake and alert more often now, and it is usually one at a time, but sometimes they are awake at the same time. Needless to say, I am getting in a lot of tread time between their beds.
And of all the newest updates, I saved one more for the end of the updates section:
I got to hold Emmett for the first time!!
I liked it a lot more than he did, but I will teach him to like it.
I am hoping that the next time I am able to post it will be because both boys have been extubated. We shall see. Emmett has it in his mind that it is time to be extubated - he extubated himself and had to be reintubated! He gets his little arms swinging, and he caught his arm between the bed and his breathing tubes. He managed to push the tube right out of his nose! The nurses and neonatologist were able to get him reintubated quickly, though.
God continues to keep these two little babies in his healing hands. I am thankful to Him beyond anything that I can express. If I have not been clear up to this point, let me make myself clear: it is by God's mercy and grace that my babies are alive today. He has guided Dave and my steps through this process, from before we even knew it was a process! This is too big, and their are too many components for it to have been mere coincidence. And that, my dear friends, is a fact.
Three good things:
1. Holding Emmett
2. Ethan joined Cub Scouts and loves it! So, if anyone is interested in popcorn, I happen to know a little guy that would be happy sell you some!
Along that same line, Dave signed up to be the den leader, and he is just as excited about it as Ethan! Dave will be a fantastic den leader, and I have a feeling they are going to have a lot of fun!
3. Liam has survived his first 16 months with only 2 chipped teeth! If you knew him, you would be celebrating with us!!