ICU Update

We are still in ICU. Teryn's surgeon would like to keep her here for a few days but if the unit gets too full she will most likely be the one to go back to intermediate care on the peds floor since she is one of the most stable. Pretty good ranking if you ask me.
Her night was still pretty uncomfortable but mostly manageable. Dr. K came by this morning and is satisfied with the progress so far. He said as her bowel functions are returning to normal she will most likely have a lot of acute cramping. We have definitely been seeing that. He also ordered for her to receive one dose of lasix to begin getting rid of some of this bloating and fluid retention she has. If you know her well, you will be able to tell in the pictures. She looks like she is 5-8 pounds heavier. Within half an hour of getting the lasix she has already produced a world record wet diaper and even kept going as we were changing it. Hopefully the release of this fluid will make things at least a little more comfortable.
Even though she is still very fussy and uncomfortable, her cry has gotten stronger and louder and she has begun moving her arms and legs when she is fussing.
Her blood count has been low since we were moved to ICU on Wed. They have been discussing the possibility of a blood transfusion if her counts didn't get better. They have continued to decrease so she will most likely get a transfusion today.
Here are a few pictures of our high tech baby. Even though the sight of so many tubes and lines and machines can sometimes be upsetting...it is also comforting. I have thought MANY times about how extremely blessed we are to live in a time and a country where we have the technology and knowledge to be able to give Teryn these life sustaining treatments. There is a blessing in everything if you look hard enough and have your heart open to receive it.

Surgery Special: THREE for ONE

As I posted previously, Teryn had not been tolerating anything going into her stomach and was having excess drainage from there as well. We were moved to ICU Wednesday morning and
DR. K was willing to give her another day of observation instead of going straight into surgery. Thursday throughout the day we had to call the surgery team numerous times. Her pain was not under control, she began having swelling in her legs and eventually her whole body. Around 6pm she began having sever acute pains that would make her arch her back and look like she was about to come out of the bed.
Thankfully by this time mom and dad had made it into town so I wasn't on my own. Around 6:30 Dr. K came out of surgery and came up to see her. The team had been communicating with him all day as he was in the OR. He came to her bedside, looked at her and felt her belly and then just stared me in the eye for a few seconds. I knew exactly what he meant without him even saying it. Then he did. He said this had gone on long enough. Her vitals were better but her body was still very sick. He would not sleep if something was not done right away. I agreed.
He stepped out of the room and immediately began preparing the OR.
The two nurses we have had since we came up to ICU on Wed have been wonderful, thorough, precise, and caring. I am so glad they were the ones who got her and I told them so. After Dr. K walked out to head nurse turned to me and said, "I am so glad this is the decision. I knew this was what needed to happen but I didn't want to be the one to say so." I was glad to have a little more validation.
I was very concerned about the risks of doing yet another surgery. But I knew that Dr. K was not making this decision lightly. I knew from watching him and from the nurses observations that this was very heavy on him and he was wanting to do the right thing.
Within minutes they were drawing labs and preparing Teryn for surgery. By 7:00 they were taking her down to the OR. Dr. K called me less than 2 hours later to tell me they were finished with surgery and they had indeed found a problem in her intestines. About midway down there was an adhesion band (scarring) that was causing pressure and obstruction. Everything above the adhesion was swollen and everything below it was not. Because of this they are pretty confident this was the main cause of the problems. The adhesion appeared to be old so it must have come from a previous surgery. They said it could happen a many number of ways and possible just from opening her up.
She is back in ICU now and continuing to be heavily medicated for pain. She was quite whiny last night according to her nurse but I didn't hear her. For the firs time in over 2 weeks I slept a continuous 6 hours. My back is killing me from the chair, but at least I am a little less sleep deprived. Her vitals are looking good. Her urine output is good and the drainage from her stomach has decreased which means hopefully things are beginning to flow properly again.
I cannot thank everyone enough for the intense prayers you have been sending for Teryn. I know that it is only with God that things were caught in time and that the team was able to find a solution. Please continue to keep praying for complete and quick healing. I know this wild little girl is ready to get back to her scooting and rolling routine and I am ready to be chasing her again.

This is a photo of Teryn Tuesday morning before things got too bad. She was swatting at the swinging monkey in the mobile.

This is in ICU just a few hours before deciding to do emergency surgery.
Since being in ICU Grandaddy is the only person she has looked at and payed attention to, otherwise she just shakes her head back and forth and whines.

Back to ICU

I haven't had the opportunity to post since Teryn's Nissen revision surgery and now there is quite a bit to update. So, first things first...
The Nissen revision surgery went well. They were not able to do it laproscopically so they had to do an open incision on her abdomen. The surgery took quite a while because 1) it took an hour to get iv access even in the OR. They ended up getting an ej in her neck and also a backup on her scalp. 2) She had a lot of scarring on her stomach from her previous surgeries. However, it went well with no complications during the procedure.
The surgery took place on Friday and she was given the weekend to let her body rest and recuperate. Sunday evening James had to return home because he couldn't miss anymore work. Monday morning we began feeds with pedialyte at a rate of 10 mls per hour and a goal of eventually 40 mls an hour. She seemed to be tolerating well and by bedtime we were up to the goal of 40mls an hour of pedialyte. That evening she did retch once but never vomitted and all in all seemed to be doing okay other than some leakage around her tube site. We had the on call surgeon come in and I told her I thought the tube was a little loose and did not have enough water in the balloon that holds it in her stomach. We checked it and that was definitely the case so we put a little more in. Tuesday morning we were given the go ahead to switch from the pedialyte to her formula at the rate of 40 and if all went well then we could be discharged Wednesday morning and could gradually resume to her regular feeding schedule at home. I was a little apprehensive about the formula going at 40 since that is the highest continuous rate she has ever had even pre-surgery and her formula is thicker than pedialyte and will make her feel fuller. (The rate of 40 comes from he nutritionist guideline based on her weight.) By Tuesday late morning she was starting to show a little discomfort but was not vomitting. I was venting her tube to let out any excess air and each time would get quite a large amount of gastric fluid. She would whine and roll side to side in the crib like she was uncomfortable but within seconds of me venting she was calm and resting. Tuesday morning during one of these uncomfortable episodes she had her feeding tube wrapped around her foot and as she was kicking she pulled it out. We put it back in but not before mostly all of her stomach contents had leaked out. Throughout the remainder of the day he seemed to be more and more uncomfortable and her tube site was leaking profusely. If she was laying or sitting in the wrong position she would be soaked withing minutes. Basically most of her fluids were either leaking out or were having to be vented.
She continued this pattern of more and more discomfort and a higher rate of fluid having to be vented from her tube. Neither one of us got much sleep Tuesday night, maybe an hour total. Around 1am we paged the on call surgeon. She was still so uncomfortable and moaning costantly. The last time I had vented her I got almost 100 mls of gastric fluid. (At this point we were only putting in 20 an hour.) Her bowels were not moving anything through. We stopped feeds all together but she continued to feel worse and worse. She just had a grimace on her face, whining, and would not move. She did not even want to be moved. I tried holding her for a bit but she even got upset if I coughed or took a deep breath. her tummy seemed to be causing her a lot of pain.
When the surgeons came for rounds at 6am I told them about the night. When they turned on the light and saw how badly she looked they immediately called her main surgeon ( Dr. K) who normally doesn't do the rounds. I had been crying all night at the sight of her. She was pale, gray lips, and gray circles under her eyes. She was lethargic and non responsive to any stimuli around her other than if someone tried to move her or touch her belly. I was even more terrified as I looked around the room at the faces on each of the surgeons. It was obvious they were just as concerned as I was. If they were worried, then I was even more worried. I have seen her in a lot of pain and go through many things but this was by far the absolute worst she has ever looked and probably ever felt.
They had tried to get an iv (to no avail and against my better jusdgement.) It was obvious that she was dehydrated and needed fluids immediately. Dr. K wanted her moved to ICU immediately and a central line started. If they would not let her go up that minute then he was going to start the line right there. He was that concerned. They accepted her right away so I grabbed the one bag I needed and we all headed up. Dr. K insisted on going and making all of the decisions and placing the line himself. Because this is a sterile procedure I was not allowed to stay in the room. So I headed down to gather the rest of my things.
All morning I had been trying to resist breaking down in tears. For some reason I am compelled to appear strong in front of these medical professionals because I want them to value my opinion and not take me as just an emotional mommy. There is no easy balance there. I wanted to call my mommy and receive comfort for myself but I couldn't compose myself for that just yet. I knew if I called right then I wouldn't be able to get any words out. I headed back down to our room on the peds floor and the sweet PCA was already packing all of my stuff for me. She had been in already several times that morning to give me a hug and check on me. When we got up to the ICU floor they were still working on getting her line in so I had to wait outside the unit. I figured now would be the time to call my parents since I couldn't get James while he was at work. Sure enough, as soon as my mom answered the phone I lost all composure again. I wanted my mommy as much as I wanted to be with Teryn and give her comfort. Eventually I was able to relay the information in a discernable manner. Mom was insistent that she was going to receive a good report from me later in the day.
A few minutes later the social worker came out to sit with me since she found out I was alone. Eventually they let me come back. Teryn had received a central line in her groin, a catheter, and a foley vent for all of the excess fluid in her stomach. She also had to receive an IO which is where they infuse fluid into to bone marrow. They were concered that she needed fluid immediatley and could not wait the half hour or so until the central line was complete. Her blood pressure was low so they had epinephrine in an iv ready to go if needed. Once things settled I went downstairs to get lunch. When I returned they were still concerned about her blood pressure and her fever and wanted to start an arterial line. This ones goes in the artery instead of a vein and her blood pressure and temp can be monitored by the second. Another sterile procedure so I was kicked out again.
When they were finished and I returned the surgery team was back. Dr. K was very concerned. He sat next to me and just thought silently for about 5 minutes rubbing his face and head thinkingly. Then he began full disclosure of his concerns. If she did not show some relief from her stomach distension and improvement in her vitals then he sees it as necessary to do exploratory surgery in the morning and figure out what in the world is going on. He headed off to another surgery to return after for a check-in.
When he returned and he was checking her belly she was still tender but he noticed she had a bowel movement. That along with her continuous venting made him comfortable enough to go with another day of observation and surgery put on the back burner.
So how is Teryn now? Her color has improved. She is finally peeing a little. She seems a little more comfortable and a little more aware of her surroundings. She still does not want to move and is still very tender in her tummy but it has become a little softer. She has not had to receive any blood pressure meds. She is about to receive some morphine to help her get a little more comfortable and get to sleep for the night.
How is Crystal? I am better. Not great but better. I have had a crazy headache from the lack of sleep, stress, and crying. But...better.
Please continue praying for us but mostly for Teryn. God is going to completely heal her little body and get her back to tip top shape.

Another Surgery on the Horizon

After Teryn's scare the other day we have completed an upper GI study and have consulted with the pediatric surgeons as well as Teryn's plastic surgeon.


The study showed that she had reflux in her esophagus immediately after the barium was put into her stomach. The ped surgeon said this really concerned him along with the fact that once it got in her esophagus it tended to pool there and was very slow to empty back down into her stomach. He was very clear that he is not usually a proponent of this type of surgery and would rather handle things with other types of less invasive therapy. However, in Teryn's case with all facts considered it is his strong recommendation to do a Nissen revision. She had this surgery done when she was 3 1/2 weeks old. They take a portion of her stomach and wrap it around the esophagus to create a tighter sphincter. It is possible that Teryn's has come undone over time and with other procedures she has had.


Her plastic surgeon has okayed the surgery but with very strict precautions as far as her intubation. She will have to have a breathing tube put in her mouth during the surgery and her PS wants to be sure that an attending (instead of a resident or fellow) is the one to do it to hopefully reduce any risk of disturbing her newly reconstructed palate .


We were given the option to have the surgery done at our home hospital but have made the decision to remain here for a couple reasons. We love the ped surgeon we have at home and he is very familiar with Teryn. But if there is a need for consultation with a pediatric specialist in any other area then Teryn will be sent back here anyway. Additionally the staff here is aware of her status post-op and the complications we have had so far. We are very much ready to go home and James having to miss another week of work is creating a whole new set of problems, but being with Teryn and getting her what she needs is the ultimate priority.
Surgery is planned for first thing Friday morning. Please pray with us that everything will go smoothly and without complications. Once surgery is complete we will stay a couple of days to get her back up to full feeds and make sure she is tolerating them well. I know God has a plan and trust that He will provide us with the perfect team to complete this procedure with success.
Below are a few snippets of the past couple days. Teryn has been feeling so much better and wanting to play, play, play!

Taking a nap after all of that playing.

She demanded that we make her a play area on the floor.

Snuggling with Daddy before bedtime.

Terrified Blessing

After Teryn's surgery everything was going well and we received good reports from plastic surgery as well as anesthesia. We were told we could most likely go home the next morning. Because of the 4 hour car ride I was in no hurry and told them we were okay with staying another day. As I noted in my previous post Teryn had quite a bleeding episode later on post-op day one. We definitely didn't want to go home yet until we knew this was under control. The next morning we were set for discharge and things were looking good. We began packing everything and dressing Teryn. Her nurse came in to give her morning meds before we got on the road. I have told each nurse that her meds have to be given VERY slowly and they always comply but our definition of slow is even slower than what most consider slow. I have learned through much trial and error that if there is not enough of a break between her meds and feeds or if she gets too much volume at one then she will vomit.

James and I were gathering everything while Teryn was getting her meds and I heard her make the sound that I know is her cue she is trying to keep something down but is about to vomit. I told the nurse what was about to happen. I sat Teryn up and sure enough, up came her meds. She was choking and retching and began turning gray. I told the nurse she couldn't breathe so she grabbed the oxygen to give her a little blow by. She wasn't improving any. Before the palate repair things would come out her nose if she vomited or refluxed but now that can't happen. I think because it was thick and she still isn't sure how to work this new mouth of hers she panicked because she didn't know how to clear her airway. I knew she was about to pass out and as soon as I said this to the nurse she did. Usually if she passes out from a breath holding spell (and once before from vomiting) voluntary mechanisms take over. This time a soon as she tried to come back she still couldn't breath and went limp. Another nurse had walked into the room and was trying to get the Ambu (oxygen) bag. We were stimulating her and couldn't get any response. Both nurses started yelling "code" and within a few seconds there were over 20 people in the room all yelling information at each other. At this point I finally stepped back into the corner of the room and watched this surreal event as I prayed and begged to God. I could only comprehend some of the things that were being said around me but one thing rang very clear. The doctor who took over her airway said "I still don't see any chest rise." If someone had stabbed me it couldn't have hurt worse than those words. She yelled for them to get the board under Teryn as they were about to begin CPR. A few seconds later she began taking breaths. She opened her eyes for a few seconds and then went to sleep.
About that time her plastic surgeon came running in and they all began talking about ways to keep her airway open without compromise of her palate repair. The "trumpet" you see in her nose in the pic below was the agreed upon solution. The doctors began asking me further questions about her history. James was standing in the doorway as he had moved when the rush of people came in. We had the same fear in our eyes and then the staff began checking on us.
They decided to move her up to ICU and consult pediatric surgery. I will explain why in a moment. But first I have to make sure you understand why this was a terrified blessing......we were less than 10 minutes from leaving the hospital. We were about to get in a car and make a long drive home. During this ordeal she stopped breathing approximately 2 minutes. I don't dare to think how long it may have been if we were not at the hospital.
The reason pediatric surgery was called in for a consult: When Teryn was 3 1/2 weeks old she had a procedure done called a Nissen Fundoplication. Essentially a flap of her stomach was wrapped around her esophagus to prevent reflux. Over time and other surgical revision surgeries she has had it may have come loose because her reflux is still so bad. The thought is that if the Nissen is loose she may be at a much higher risk of aspiration now that she has a full palate and things can't escape from her nose. *(I should note here that a chest xray was performed after yesterday's episode and her lungs are clear. Praise God!!!)
So the plan is to give her a couple days rest and on Monday morning she will go for testing to determine the integrity of the Nissen. If the tests do in fact show it is loose then we will either need to go back to the feeding tube that bypasses her stomach (g/j) or have a Nissen revision surgery. Another surgery is a scary thing right now but without it we still will not be able to begin feeding therapy anytime soon.
Please pray with us that the right decisions will be made and that all needed wisdom will be presented before the making of these decisions. No matter what, GOD is in control. I know He has an amazing purpose for Teryn's life. Part of that purpose is that you are reading these words right now. I hope you realize that God is in control in your circumstance as well.


Here are a few ICU pictures. Teryn has been feeling a little better and wanting to sit up and roll. One of the nurses got her a chair so she could sit up on her own. The device you see in her nose is the "trumpet" I mentioned to help keep her tongue forward and her airway open.

Mommy finally got more than 3 hours sleep in one night. YAY! This morning we took some time to snuggle and look out the window.

Post Surgery Day One

Here are a few photos of Teryn right after her surgery.

She was still feeling a little groggy and receiving a little oxygen assistance.

Mommy getting to love on the sweet girl.

She just realized Daddy was sitting next to us.

Some love and snuggle time with Daddy.

We decided the blood smeared on both of her cheeks was her way of claiming that she truly is a Seminole....even in gator country ; )

Don't worry - the residual blood you see here is very typical of this surgery.

Finally chilling in her room to take a nap.

Pre-Surgery

Teryn being silly while mommy made preparations for the trip.

Working on getting that thumb in her mouth.


Sticking out her tongue and laughing at Xavier.

She finally helped me pack by supervising what went into the suitcase.

Shoe thought the blankets would be very comfy.

She wanted to take her singing bunny.

At the hotel spending time with Daddy the night before her palate repair surgery.

Getting tickled.

The morning of the surgery. Time to go!

She just wanted to stay in bed and play.

Post-Surgery Scare

This post is going to be a backwards post of sorts. I have pre-op pictures to post but I know several people have heard about our scare so I wanted to give those details first.

Teryn came out of surgery fine. There was no problem with anesthesia, intubation (temporary breathing tube), or the procedure itself. We went to see her in recovery and she seemed to be comfortable and resting fine. Because she was given pain killers that are a respiratory depressant we stayed a little longer than usual. Teryn was awake for part of the time and still seemed comfortable but sleepy. Eventually we were discharged from recovery and sent up to our room. On the way up Teryn was happy to look at all of the decorated color tiles and was even attempting to make some of her "talking" noises. Once we settled in the room she was happy to kick and play in her bed and continued to talk to the nurse. James went down to get us something to eat and while he was gone Teryn fell asleep again.

We had our lunch and after cleaning up I walked into the restroom. As I was coming out I heard that Teryn was awake and fussing a little. I walked over to her bed and saw that she was trying to roll onto her belly. Not such and easy task with double arm splints. (Placed so she can' t get her hands in her mouth and disrupt the sutures.) ***Another side note you need to know about our smart girl is that she has figured out that if she is refluxing she should roll on her belly so she doesn't choke. ** So....she was trying to roll over and as I got to her I realized that she was bleeding a little from her nose. In recovery she had slight bleeding from her nose but this seemed to be much more and fresh blood at that. As I began to move her blood began just pouring from her left nostril. She was very upset. I immediately called for a nurse and James came over to help. It was quite a struggle between trying to keep her up to clot the blood and also to keep her from choking. All of a sudden four nurses come in and all of them attempted to help me get the bleeding to stop. After a very short time and seeing how upset she was they paged for her surgeon to come in. ( She had left campus briefly during this time to pick up her car- but was on her way.)
Teryn was extremely upset and thrashing her head like she does when she gets tired or mad. The nurses kept trading off as they saturated cloth after cloth. It wasn't just bleeding, it was pouring. Now as you know, I have been through lots of scares with this little girl's medical history but I have to tell you this episode is at the top of the list.
As minutes pass by Teryn gets more mad and the bleeding gets worse. Eventually it begins coming out of her ears and then her tear ducts. Now, let's talk about terrified. The surgeon comes running in having illegally parked and broken traffic laws to get there. She plugged Teryn's nose with gauze and tried to clean out what she could from her mouth. Praise God none of the sutures from her cleft repair had been disturbed like I feared. She was yelling and thrashing so hard I was sure she had torn something loose.
In an effort to get her to calm down I did what I always do at home which is sing her this silly song I made up with very few words that repeat. I began singing it and then so did one of the nurses, and then another, and then another. Guess what? Teryn calmed down. However, the surgeon was still very concerned about airway and possible aspiration of all the blood. They immediately moved us to the intermediate care unit with the nurses' station right out our door and a big window to see in.
Once things calmed we started discussing what could have happened. That means the doctor and I because James was sent to sit at a nurses' station. After the third time someone made a comment about his queeziness we kicked him out, poor guy. We had all already informed him several times that if he hits the floor it will be a while before anyone can come to his rescue. Okay so possible theories 1) A bleeding disorder that has never shown up before 2) A clot that broke loose 3) A combination of meds wearing out, pain coming back, and vascular system dilating back to normal. The surgeon ordered blood work stat and the results show no sign of disorder or need for a transfusion. Praise God!!! She is pretty convinced on theory 3. It would have been perfect timing for her anesthesia to have worn completely off, there may have been a trickle of blood in the back of her throat which she would normally have pushed up immediately into her nose but because she can't now that she has a full palate, it pooled until it was forced up. By then Teryn was upset from the pain, the foreign feeling in her mouth and the more upset she got the more she bled.
The surgeon was honest with me as all this was going on and admitted that this was highly unusual. Not what you want to hear when you see your baby like that, but I appreciate her honesty in the situation.
Teryn has gotten her Tylenol, morphine and will get an antibiotic and ear drops soon. I asked if the blood could cause problems for her new ear tubes so they agreed it would be best to go ahead and do drops. She is now sleeping but still with a bloody face, bloody clothes, and partly bloody bed. As much as I hate to see her sleeping and not clean, none of us can bare to agitate her more when she is finally resting after such a traumatic event. We cleaned up what we could and let her rest.
So what have I learned about this....ahhhh...always a lesson. Satan has been trying to flood my mind with fear for the past several weeks. Horrible fears about this surgery. I rebuked him daily and claimed the truths instead. I know fear does not come from GOD. I am sure that Satan wasn't happy that I called his bluff. As soon as I thought we were in the clear he came at me again with a new situation. I would like to say I was calm and collected and felt God was in control during this scary event but to be honest all I felt was horrible fear as I pleaded to God in my heart and my mind. Once things calmed I was reminded that God really IS in control. I wish I had remembered in those scary moments. Later the nurses commented on how well I handled it and how calm I was. I admitted to them that I was definitely not calm inside. I was terrified. But, then again on second thought I guess that peace you have all been praying for me really was there after all. I mean hey, I didn't run from the room crying like I wanted to.