8 Months Old!!!!

Teryn is 8 months old today!!!!

Our amazing little girl has made so much progress and growth over the last 8 months. She continues to amaze us everyday.

I can't help but laugh every time I see this picture. Such a silly grin.

If you look closely you can see that she is getting a new tooth on the top. A new discovery we made today.

Reaching out to grab Elmo. She has begun reaching and grabbing things a lot lately. She will even reach out to grab our faces now. Just another sign of the huge progress she is making.

She had enough of her photo shoot and did not hesitate to let me know.

Breakfast and a nap

Every night when we get ready to give Teryn a bath I take her clothes off and lay them next to the couch. Every night Xavier goes over and lays on them. It is so cute. I think he is really getting used to Teryn and even a little attached. He is always checking on her and will go over and kiss her hands, toes, and head. He will go over and sniff her then give her one or two little kisses. Teryn just watches him.

Teryn has figured out how to roll from her back to side and back again. She is also soooo close to rolling from her stomach to her side. Here is a picture of her trying to get over.

This morning we had the pleasure of having breakfast with some family. Cousin Trista was hostessing at a local restaurant for a fundraiser for church. We decided it would be okay to go since it was not open to the general public and wouldn't be as crowded. We were very excited for a chance to see them since we have been so busy lately. Here is Trista with her adorable new haircut. She is ready to take us to our table.

Cousin Gavin growing so big.

Uncle Lee and Gaving talking to Teryn.

When we got home this afternoon Teryn was exhausted and ready for a nap. She cracks me up because she has begun taking on many of my sleeping habits. For example, she sleeps on her belly, one leg bent, one leg straight with the foot out of the covers, and one arm tucked under.

Sweet, sweet girl.

MRI

We got up VERY early to make the 3 hour drive for Teryn's MRI. She had slept in her Elmo pajamas that GG brought her in the hospital. She looks like such a big girl in them.

We were glad that we left as early as we did since we got into a lot of traffic once we got close and came upon the school zones. Then when we got to the hospital it was quite a challenge to navigate the hospital and find exactly where we needed to be. Finally we arrived in the "basement" of the hospital and the outpatient MRI department. They were doing some remodeling do at one point we had to literally lift the entire stroller just to get over the threshold and enter one of the doors. We arrived one hour before our appointment to check in as per our instructions. An hour and a half later we were called back to meet with the nurse. He asked us for more detailed information about Teryn's health history. He explained that she would receive general anesthesia through an IV and that she would also be intubated. I explained that finding a good vein on her is almost impossible now. We were also concerned that it may be a more difficult intubation since she had been intubated less than a week prior for her surgery. The anesthesiologist came in to speak with us. She was a very nice older lady who is actually retired but continues to work in the department because she loves it. We both discussed our concerns and she decided that we needed to take a few extra precautions. They ended up calling the anesthesiologist at our home hospital to fins out how she was intubated. The machine they used was a machine located only in the ER. So......they decided to have 2 more anesthesiologists come down as well as another nurse. The plan was to go up to the Operating Room and have her intubated there. (It had to be done there because the machine cannot be taken down by the magnets in the MRI) Then they would take her back down for the MRI and then back up to recover in the surgery recovery area. Their thoughts on having her recover in the surgery recovery was that there would be more doctors, nurses, and resources available if there were any complications. Scary thought that this would be needed.

We were led up to the OR by 2 of the nurses and when we got to the doors they said, "OK. We will take her from here." All of a sudden it became very difficult to just hand her over and be on the opposite side of the doors. James and I talked and I think that it is more difficult to not be in control after you have learned more. In the beginning I had no clue of anything that was going on and left every single decision to the doctors. Now that I have spent countless hours doing research myself and had numerous conversations with doctors and specialists in all areas I know that the doctors don't always have all the answers. They do their best but there is a reason it is called "practicing medicine." There is only one physician who truly knows all the answers and that is my Lord Jesus. So, I just prayed that he would hold Teryn during this procedure as he always does.

James and I decided to go downstairs and get some lunch since it would be about 2 hours before we would be able to see Teryn. We have been to many hospitals and no matter where you go, there is one thing that is constant, the food is not that great.

It was a beautiful day so we went for a stroll in the courtyard and took some pictures of Daddy with the statues.

While we were waiting the nurse called to say that the intubation went very well Praise God. She also said that it was very difficult to get a vein for the IV. I figured as much. They put her to sleep with gas and then used ultrasound to get the IV. I am so glad I didn't count the sticks until I got home. Between her hospital stay and this procedure, I counted over 35 sticks! She had bruises on several. I just wanted to cry. I know that everything being done is for her good but it is still SO hard as a mommy to sign consent for something to be done that you know will hurt your baby even if the pain is only for a few minutes.
When the MRI was done they called us again and said that she did so well they would keep her downstairs for the extubation instead of having to go back to the OR. A few minutes later they let us go back and sit with her. We sat for about 30 minutes and talked with the 2 nurses and the anesthesiologist. They were very sweet and had already become smitten with Teryn.
She began waking up a little so they let us go ahead and go home.
Aside from the crazy details of getting things started, it went well. We should have the results when we meet with the neurologist again on the 27th. Please continue praying for good results. We are hoping to not have to go the neurosurgery route. Praying that things are stable and even improved.

Home Again

Teryn got up to her full feeds again this morning around 2am. She is still on continuous feeds 24 hours a day but she is finally getting food in her stomach!!!!!!!

We will remain on continuous feeds for a couple of weeks for her stomach to learn to expand again. We will eventually talk about some bolus feeding trials. This means giving her a larger amount all at once. An example of a bolus feed would be giving a larger amount over a shorter period of time. Instead of giving her 35mls per hour every hour, she may get 9o mls/hour every 3 hours. We will be seeing her surgeon and pediatrician within the next ten days. We will evaluate how she is handling things and talk about options then.

So far she has been handling it very well. We have learned that we have to giver her meds very slowly so that she doesn't spit them back up. She was still spitting up a little when we got home. we decided to try a thicker anti-regurgitation formula. So far, it has been working very well. Hopefully her stomach will be able to adjust to it easily.

I am really loving the new feeding system with the Mic-Key button. I was laughing with one of her nurses. It is very funny the things that you get excited about. I am so excited that I can now prime her feeding pump and giver her meds without having to wake her and take her tubing out of her clothing. Her new tube also has a port where I can insert a syringe and put meds directly into her stomach if I need to. However, for a while we will probably give them slowly through the tube. Anyway, it makes a couple things a little easier in our daily routine.

She still has a little congestion from the cold she acquired in the hospital. She is learning to cough a little to clear it. But most of the time it sounds like a horrible gag. Still, she was in much better spirits tonight. This girl really likes being at home. She was also very glad to be able to get a "real" bath tonight. We were having to do sponge baths in the hospital so she was very happy to splash in the water tonight. She has been laughing and smiling since dinner. She is so precious. She is incredibly brave and strong. I am so proud to her her mommy.

Here are a few shots from the hospital and at home tonight.

She was getting very bored with laying in the hospital bed. Sitting up helped with her reflux so we put her car seat in her crib and brought her mobile from home. She LOVED having the mobile so close to her face. She kept reaching out to the animals going by and even grabbed them a couple of times. This is an amazing milestone for her. We have been so excited and proud. I had to call Grandma and brag right after she grabbed the parrot for the first time.

That was a lot of work. She decided it was time for a rest.

Mommy and Teryn lounging. She loves to look at herself and the patterns on this mirror. It gave us a break since all she wanted for 2 whole days was to lay on my shoulder. She would not let me move. If I even turned my head to talk to someone she would get upset. Poor baby, she was so sore from her surgery. I am so glad she is feeling better now.

Home, Home, Home! She is showing off her skills again. She is so happy she can reach and touch things now. She gets so excited when she is able to do it. This success is in a huge way due to all of the stimulation, love, and therapy she is receiving during the day with Grandma and Grandaddy. We are so lucky for the tremendous blessing they have given us by keeping Teryn during the weekdays.

Almost there....

She does it again!

So we have now crossed one of our hugest hurdles by getting her back to feeds into her stomach. Stay tuned to see what our amazing girl is going to accomplish next.

Another Surgery and a New Tube

Wednesday morning Teryn went into surgery. The plan was to do an endoscopy for the surgeon to go in and get a good look around inside. He also planned to put in a new feeding tube. This time we wanted to do what is called a "button." This one would sit almost flush against her skin instead of always having a long extender hanging from it.

Anesthesia and intubation went very well. The surgeon said once he got in he saw that her original tract (hole) was definitely lower than he would like and could possibly have caused her previous tube to sit on her pylorus and cause some blockage. He decided to go ahead and create a new tract and inserted the new button tube.

Here is a picture of the type of tube she has had up until now (actually hers was a little longer because she had another smaller tube fed through it to go straight to her intestines):

Here is the type of tube she has now. It is called a Mic-Key button.

Here is what it looks like against the skin. This is not a picture of Teryn, but it is essentially the same. Teryn's site is still pretty sore and still has sutures. The surgeon wanted to give it a day for the site to heal. Yesterday around lunchtime we attempted a feeding dosage. We started with pedialyte since it would be less irritating if she refluxed it. Two hours later we began seeing a very small amount of leakage from her old site (hole). So, we stopped the feed immediately. Later in the day she did need quite a bit of suctioning but it was hard to tell if it was because she was refluxing the pedialyte or if it was from the chest congestion she has developed since surgery.

The respiratory therapist came and saw her last night and gave her a breathing treatment to break up some of the congestion. They also did an xray to make sure there was no pneumonia. It was clear Praise the Lord! The doctors also ordered several blood tests to check white cell counts, check for RSV, and also general electrolytes. Everything came back great. The hardest part was trying to get the blood for the tests. Teryn has so much scar tissue over her veins from having so many IVs in her little life. It has always been difficult, now even more so. A couple of our old friends from the NICU came over to help. Thank you Noni for being the hero once again! Thanks Cassie for also coming to help out.

This morning the surgeon came in and said we could try feeds again. Teryn's normal amount is 35 mls per hour. We decided to start slow with 10mls per hour. Today we also decided to do formula instead of pedialyte so we could definitely tell if she was refluxing. So far there has been very minimal leakage around her site. She has had small amounts of reflux. The upper GI study we did Tuesday does show that she has mild reflux. I am just hoping that it does not continue to increase. It is 9pm and we are currently up to 20mls. We will continue to increase the amount as we she she is tolerating.

Her biggest discomfort today has been trying to cough. Her pediatrician thinks that this is just what a cold is going to be like for her. Luckily she hasn't been sick before. The only two times she has been sick has been when she is in the hospital. We come in healthy and she gets sick.

Her pediatrician has given his okay for discharge tomorrow if the surgeon clears it. It will all depend on how much food she is able to tolerate without reflux and checking the leakage around her tube.

When we go for our follow up in a couple weeks we will be able to discuss options for trying different kinds of feeds and possibly even a little water by mouth!!!!!

In an effort to find the silver lining in an unwanted, long hospital stay....at least we got to see many of our wonderful NICU friends who came to visit while we were here. Everyone is so amazed at how big Teryn is getting. They are loving her chunky legs and her lovely long lashes.

We are really hoping to be discharged soon. Mainly because we are just ready to go home. The only time I have made one step out of this hospital room was for her GI study and surgery. Also because she has an out of town MRI scheduled for Monday. It took 3 months to get this appointment. She has to have a sedation nurse with her for the procedure so it is tricky to get the appointment we need. I scheduled for Monday since it is a school holiday and I wouldn't have to take yet another day without pay.

She is sleeping soundly now. We will bump her feeding dose up again at 4am and keep observing and praying.

Thank you Lord for the progress we are seeing.

Hospital Sleepover

Here I am once again sitting on a hospital bed listening to my little girl sleep. The great news is she is not sick.

I have noticed recently that the j portion of her feeding tube has become worn in the spot where it has to be clamped between each medicine dosage. Last night as I was trying to give her the first med I noticed it was a little difficult to pass through. I wouldn't force it because I didn't want it to bust if there was a clog. Then all of a sudden it went very freely. Yeah....very freely all over Teryn and me!!!! We had sticky phenobarb all over us. I cleaned us both up and then hoped that maybe I would be able to patch the hole just enough to give her meds and feeds until the morning. No such luck. So I knew this meant a night in the hospital. I called James and began getting mine and Teryn's overnight things together.

Luckily we went straight back at the ER and they took my advice and called Teryn's surgeon immediately. As I predicted, all would have to wait until morning when the radiolologist could be here to check her new tube placement.

This morning the surgeon came in bright and early ( Oh....did I mention we were already supposed to have an appointment at his office this afternoon!) He sits down and tells me he has been thinking again. He and I have gone around in circles with the same conversation for 3 months now. Not in disagreement, but just trying to work out the best thing for Teryn. So he comes in this morning and says he thinks maybe with the reoccurring issues we keep having with her tube that maybe it is time to do something definitive. We have discussed several times about him going back in and doing a revision on her fundoplication (reflux surgery) as well as a pyloroplasty (will open up the opening at the bottom of her stomach so things will empty better.) Here is where our circle conversation begins......."What if it is gastroparesis?" (stomach not contracting properly) "Will we be doing an unnecessary surgery?" "But if it works then she can learn to feed by mouth." "There is a higher risk with this repeated surgery."
So what we decided this morning since the present tube was going to have to come out anyway, was that we could redo one of the gastro studies while the tube was out. Previously the tube being in the way led to the studies being inconclusive. We decided to do an upper GI to watch and see what the barium does in her digestive tract.
So he prepares his materials and as he is grabbing something else Teryn's hand hits the exposed tube and she pulls it almost all of the way out. Guess it was ready to come out anyway. He put some gauze dressings around the hole to keep pressure on and keep from contents leaking out. The original plan was that I was going to have to keep my finger over the hole during the GI study to keep things from coming out. Close your mouth. I know it is gaping open in shock and disgust. Luckily I was able to dodge that bullet.
We took her downstairs and I began rattling off my usual requests/demands. She needs to have suction nearby, you can not give her anything through a bottle, we are going to have to go slow so she doesn't aspirate. They were very sweet and understanding and met all of my requests with patience. We used a catheter tip syringe and I veeeerrrry slowly gave her the barium in her mouth. At first she was enjoying it and SWALLOWING. Eventually she got frustrated because some of it was coming out her nose. Then she wasn't as cooperative about swallowing. Eventually we got enough in her stomach that the doctor was satisfied he would be able to have valid results.
We then went upstairs to await the results. The surgeon called and said for someone to reinsert Teryn's tube as soon as possible as a placeholder to keep the hole from closing up. The nurse was going to wait until she woke up from her nap. For some reason I didn't want to wait so I convinced her that we should go ahead and do it. In the amount of time it took us to go to radiology, come back up, and get the adhesive bandages off, the hole had almost completely closed!! The nurse tried several times but could not get the tube back in. She called the surgeon and he advised to insert a very thin tube just to keep the track open. That worked.
In the meantime she is still having stomach contents leak out around the site which is causing skin breakdown. The wound care nurse came and put some protective cream and dressing on it.

A few hours later the surgeon comes into the room grinning from ear to ear. He said that everything in the study looked beautiful. The original fundoplication appears to still be intact and the contents are emptying from the bottom of her stomach. In his opinion he thinks she should be able to tolerate food in her stomach. So here is the plan for tomorrow. She will be placed under anesthesia and he will go in with a scope to look at the physiology and get a better assessment and make sure there isn't something we are missing. He will then place a new tube in. He has one ordered that will take up less room in her stomach. Then we will hopefully be able to begin feeds through her stomach again very slowly and then eventually up to full feeds.



I am praying that this works. If so, then I believe we will be able to begin teaching her how to eat soon. I was so proud of how well she was handling the barium in her mouth today. We have been praying for guidance in making a decision about all of this. Maybe this was the Lord's way of guiding us to the right one.



Please say your prayers for Teryn. Please pray with us for some solutions.

September Updates

It has been an entire month since I have been able to take enough time to post new pictures and updates. I apologize that it has been that long. I know several people have been asking me to update so here we go. Here is a very brief review of what September has held for us.



First of all, every single day is a huge blessing. Teryn brings so much joy to every minute. She is by far the most amazing little girl. I know I am biased, but I truly believe that she is. She is growing and getting stronger every day.



Here is the September medical review:



Gastro: The number one question people always ask is..."Is she still feeding through the tube?" Yes, she is. She still receives 24 hour a day feeds through her g/j tube. Everything still goes straight to her intestines. We completed a barium swallow study as well as a gastric emptying study. This was a 2 day testing process. Our hope was to find out why she still refluxes anything in her stomach and why she still has episodes of refluxing swallowed saliva even. We were very discouraged to find out 2 weeks later that the results were inconclusive. The barium swallow was inconclusive because some barium came out around her mouth and also went up into her nasal cavity because of her cleft. The gastric emptying was inconclusive because of a few things 1)Teryn's stomach is very small from the fundoplication wrap to reduce reflux 2)the large tube takes up a lot of space in her stomach 3)the j portion of her feeding tube goes through her pylorus which makes it more difficult to see what is emptying. So, we go back to see the surgeon this week and talk about the possibility of redoing the study. We will also travel to see the gastroenterologist at the end of the month.
We will continue to monitor things. When the gastroenterologist and her pediatrician think that she may be able to attempt something in her stomach then we will do a trial feed of pedialyte into her stomach. This will be the first step to transitioning back to stomach feeds. We aren't sure on a time frame for that yet.

Neuro: NO SEIZURES this month. That in and of itself is a huge blessing. Any seizure activity can set progress in development backwards. We are still on the same does of antiseizure meds. We have an MRI toward the middle of the month. This is to monitor the hydrocephalus and the size of her ventricles. The neurologist has mentioned he may want us to consult with a neurosurgeon again to talk about the possibility of inserting a shunt to drain the fluid. This will reduce the possibility of future seizures. We meet with the neuro at the end of the month. We will also be discussing with him an observation we have made from watching Teryn. She tends to "zone out" quite a bit. I call it sleeping with her eyes open. We want to check with him and make sure they aren't a type of seizure called absence seizures. We will be praying for a good report on that.

Opthamolgy: We saw the opthamologist this week and structurally everything with her eyes looks good. Another point of good news is that there is no fluid pressure behind her eyes. An ongoing concern is the strabismus (eyes turning inward). This has certainly improved since birth and she can coordinate both eyes when she really focuses on someone. The doctor believes it is more of a neurological concern as opposed to weak eye muscles. (Remember the part of her brain that is thin is the corpus callosum which helps both sides of the brain communicate. This would make it difficult to coordinate both eyes on one subject. I believe the progress she has shown just proves how strong she is at making accommodations.) If it is still a problem when she is 2 years then we will discuss plans for correction.

Physical Therapy: She is getting so strong and learning to use both sides of her body equally. She can now bring her hands together at midline. She has much more torso and head control and I believe she will be ready to sit independently soon. She is SOOOO close to rolling from her back to her tummy. She can pretty much roll from her back to her right side. She will get half way and get aggravated. It is pretty funny. She is excellent at tummy time now which you will see in the photos below. She is learning to put weight on her legs. She does it much more when she is mad. So we tell her if she is going to get mad then she has to exercise during her mad time. She has also begun pushing on her feet now when she is excited as well.

Speech Therapy: Most of her speech therapy is in a holding pattern until we can begin oral feeds. In the meantime we are working with other types of oral stimulation. She loves putting her fingers in her mouth. We are practicing with a paci in her mouth just for her to practice making a seal and knowing how to move her tongue around. She does very well with it.

Development Therapy: She has not reached out to grab anything purposefully yet but for the first time this weekend she did make a purposeful connection with her hand and toy this weekend. (Pic below) Mommy was very excited of course! She will stare for so long at the toy and work on moving her hand. It seems to be the depth perception that it holding her back. Along with a little bit of smooth muscle control. I am so proud of the progress she has made though. She can now track VERY well. She tracks up and down, left to right, and even sometimes in circles. She is increasingly able to focus on smaller objects. She is turning more to sounds and voices.

Craniofacial: We go to Shands this month to meet with the craniofacial team about Teryn's cleft repair. I will update after the visit.

General: She continues to gain weight and grow at an appropriate rate. She has received her flu vaccine since she is at high risk of complications from any illness. She continues to have constant fluid behind her ears so we know that tubes are going to happen an some point.

Here are some non-medical things that have been going on:

Becoming a PRO at tummy time. She has gotten so good at pulling her head up and back that now we have to help her keep from overextending backwards when she is sitting up. Here she is looking at who else but Elmo.

Close up of that adorable face.


Aunt Lee-Anne came to visit all the way from Seattle.

Teryn got to meet Nanny for the first time. Teryn was spoiled for a whole week as Nanny would sit next to her at nap time at pat her bottom until she fell asleep.

Teryn was snug as a bug with a blanket made for her by a special friend from Panama.

(She truly has prayer warriors all over the world.)

Teryn's favorite spot at Grandma's house. Sitting on Grandma's shoulder and staring at the lamp.

Teryn and Aunt Bobbie laughing together. Aunt Bobbie declares it only takes one smile for her to steal your heart.

Here is my amazing little girl reaching to touch a toy.

Hand is almost there.......

She did it!!!!!!!

Just thought she looked precious and funny as she was sleeping this morning. Love the hiney in the air.

We are getting some beautiful weather so we decided to get a few photos outside today.

Love this one of Teryn and Daddy.

With the recent cool mornings, Teryn was able to wear a sweater for the first time. SO cute!

Laughing at one of her new toys.

Video of her laughing at her new toy.

Video of Sweet T just being silly this morning: