HOME!

We are coming home tomorrow!!!!!

A ground transport team from Blountstown is driving in tonight and we will leave around 7am in the morning.

Whoo Hoo!!!!

(I wonder if I will sleep even a wink tonight?!)

Still planning but almost there

Headband picture just for Grandaddy because we know he loves them.

Sorry I haven't posted in a few days. Internet access at the hospital has been very sketchy.

We have had quite a bit of drama trying to get transport plans arranged. Insurance will not cover it. We were able to get approval another way but only for about 10% of the cost. Now the hospital has agreed to pay for a nurse to travel on a commercial flight with us and all we have to pay for are the airline tickets. We are also waiting to see if we might possibly get approval for ground transportation in an ambulance.

I am honestly worried about the plane because we are supposed to be limiting her access to public because of germs. What place is worse than a crowded plane? Also, even though we can have a nurse with us, there is no way to get to a medical facility right away if something happens. In addition, she has 3 different medical devices that have to be with her all the time. This would be very tricky on a plane. I had to call TSA to make sure they would let us carry it all on and that we could continue to use it during flight. Because they are necessary medical devices, they are approved. Well, approved by TSA but probably not the other passengers because of the noise they make.

Another option is to take her in our own vehicle and stop for the night in Gainesville. That way we would be close to Shands if we needed the hospital.

We were having a very hard time earlier this week with securing all of the equipment Teryn needs. Apparently the company that used to provide apnea monitors to our area has decided not to do so anymore. The MCH social worker worked diligently and finally found a company that would provide and service equipment for us. They had the equipment overnighted to us and had a representative come right out and teach us how to use it all. We were very pleased with how well they got everything to us right away.

We got to the hospital extra early this morning to ask the doctors if we could go ahead and get any discharge things out of the way that we can. So, we have equipment fully charged and ready to go, supplies boxed and ready, prescriptions being filled in the pharmacy, appointment made with pediatrician, our luggage packed, and car seat ready for the car seat test. Now we just need to have a definite decision on transport so we can make any needed arrangements with that.

Here is an update on the leaky tube. As you know Teryn had a new feeding tube placed. It is a makeshift tube that the surgeons had to kind of create. I will have to get a picture of it instead of trying to explain. Even the nurses have a hard time trying to explain to each other what it is because it is quite unique (just like Teryn.) Because one of the ports will not close she has had stomach contents leaking out and hindering weight gain. After a week of having surgeons come and look at it everyday we finally had a surgeon with a solution yesterday. She had a tube of stoma-adhesive paste in her office. She put some in the port and it seems to be a good cork for now.

With all that we know, we should be able to leave maybe tomorrow!!!!! Unbelievable. Yesterday was the 100th day that Teryn and I spent in a hospital.

Tomorrow would be a special day to come home because many of Teryn's friends and family (her fans as we call them) are having a "Treasures for Teryn" garage sale at our church. So many people have been working so hard to get this event together. There has been amazing support from the community as well. We continue to be overwhelmed by the love we see and feel from everyone.

Discharge Plans are in motion!!!!!

Everything has continued to go well with Teryn;s new feeding tube. She is up to full feeds and is tolerating it well. The staff has begun teryn's discharge plans so we should be home some time THIS WEEK!!!!! We are so ready. She is 97 days old today. Maybe we can celebrate her 100th day at home.
The social worker here is working hard to get Teryn's transportation plans worked out. It looks like MCH will be able to fly her home but will have to take her to the hospital and then she will be discharged officially from there. Still waiting on all of the details but the most important thing is that we are going home.

James got here Friday not long after Teryn's surgery. She was still so sleepy from all of the medicine and was completely oblivious to all that was going on. When James got to the hospital we went to her bed and stood on either side. James said something and Teryn jumped awake, wide-eyed and looked at her Daddy and started cooing. It was the most precious thing. It was as if she had been waiting on him and was so excited when she heard his voice. Everyone else had been talking by her bed all day and she didn't react at all. Wish I had the video camera ready.

We will need to take "germ" precautions for a while until Teryn is fully adjusted and has all of her vaccinations. We will be avoiding crowded/public places for a while. It will also be a while before anyone under the age of 12 will be able to visit. We are going to have gallons of antibacterial on hand. A very small price to pay to have our girl home.

We will let everyone know for sure when we have the exact day. We love and miss everyone and can't wait to be home.

Snuggling with Daddy shortly after he arrived.

Snuggling with mommy.

My long and beautiful eyelashes.

Successful Surgery

The surgery to place Teryn's new tube was a success!!!!! The doctor said it was a little tricky but they got it. I also made sure again that they were confident that it could be replaced at our home hospital if it happens to come out. The surgeon here said that Teryn's surgeon at home is one of the very best he has seen and he knows absolutely he would have no problem doing it.

She is back in the NICU and has been extubated (no more breathing tube down her throat.) The breathing tube was just for surgery in case of an emergency. She has woken up and looked at me a few times but she is still pretty "drunk" from the anesthesia. Once she fully wakes up she shouldn't really be in any pain. Maybe just some irritation around her gtube site. They are going to hold her feeds for today just so her tube can vent properly but she will be able to start getting food again tomorrow. However, they did say that if her IV happens to go bad then they can go ahead and start her feeds then.

Praise our Heavenly Father for keeping his hand on Teryn and the doctors. Also for His hand on me to keep me from falling apart in all of this. Thank you to everyone who has been praying. We still have lots of challenges in our future but nothing we can't handle with God's help and the support of all of you.

In Surgery

Getting ready for surgery this morning. She got to sit and talk to mommy for over an hour before we had to start getting ready. She said she is ready to eat!!!

She was exhausted from our long conversation this morning and fell asleep as soon as we were putting on her surgery gown.

All machines ready to go. Transferred to the warmer bed and ready to head to the OR.

Teryn just went back for surgery at 11:00. Please lift up prayers. James is on his way. Please also pray for his safe travels.
I will post later today when she is back in the NICU.

Teryn's first haircut

Last night before I went to bed I called the nurse to check on Teryn. Someone from the IV team had come but was unable to find a good vein to start a new IV. They did the xray to see if the ND was possibly in correct placement and it was not. She was getting pedialyte through her ND (even though it was technically and NG since it is in her stomach). By 7:00 this morning she was having a hard time tolerating the pedialyte and was refluxing it. They had to stop that and call the IV team again.
Luckily it was our favorite person from the IV team. She has been very successful so far when others were not. Well, she was unsuccessful as well this time. At this point we were desperate and decided to go with the central line in her head. So, Teryn got her first haircut. (There was a very sad mommy that this is how it happened.) She had to have 2 half dollar sized areas shaved in order for the line placement to be sterile. Unfortunately, the central line placement was unsuccessful as well. The IV nurse was able to get a regular peripheral line but not a central line. (So her hair was shaved for nothing.) So, we are really praying that this will last through her procedure tomorrow.
Since her method of medication delivery has changed so much, she had to be given her anti-seizure meds through her ND tube today. About 20 minutes after that she bgan refluxing it. We do not know how much she was actually able to ingest. They are doing a level to see if there is enough in her system.
She has been having a rough day respiratory-wise. She gets this way when she has been overstressed. She has had several desats and is obviously still having trouble with the pedialyte and meds in her tummy.
She will be going into surgery tomorrow around 9:00. The plan is to do it endoscopically with a scope down her nose and into her stomach. Please, please, please pray that this method works. If it does not then they will have to make an incision and go in.
I am trying to be patient and understanding but today is one of those times that it is very difficult. I just don't understand why Teryn has to keep enduring all of this pain. My mom and I were talking on the phone this morning about how Teryn must think this is what life is like, people giving food then taking it away and sticking you with needles on a daily basis. I desperately long for the time when we can take her home and cover her with love and comfort away from all of the stresses of the hospital.

I see little sleep in my future tonight

Teryn has been awake allllll day. frustrating because she is so tired and hungry and wants to rest. The good thing is that maybe she will sleep through the night and get her days and nights back in check.

She is continuing to be on IV fluids and the IV from yesterday is still holding. Praise the Lord!!! The IV nurse came in to try and put in the central IV line that would last and hold better but could not find any veins in her arms, hands, legs, or feet that would hold it. So many of her veins have been used for past IVs. The last one she saw was in Teryn's head. I was walking into the room when I heard her say she was going to get the shaver. She saw me and was explaining that she had no luck with the other veins and showed me the one in her head. Teryn has had IVs in her head before but not a central line and not one where she needed to have part of her head shaved. I just couldn't give my okay for it. I asked the IV nurse if she saw any other veins that could possibly hold a peripheral IV if needed. She said she saw a couple of possibilities. She and I made a deal. She will be here tomorrow, so we will stay with the line in her foot that she has now. If the line goes bad and there is no success putting another peripheral line in, then I will consent to the central line through her scalp. She and I agreed that it seems like overkill to put a central line in her head when she will hopefully only need it for a couple days.

We didn't get to do occupational therapy today because little missy was very grumpy and quickly let us know she just wanted to rest today. I am STILL waiting on speech to come in and do a consult about her swallowing. I know the order was written but have not seen the therapist yet. Hopefully soon.

For some reason this week the homesickness has really set in. Of course I am terribly missing my family, friends, and puppy dog but now I am missing so many of the small things. I want to drive down 23rd street traffic and go to Cahall's for a chicken salad sandwich and broccoli salad and REAL sweet tea. I want to drive down my road and have to stop and wait on the ducks. I want to be able to go to a Bookstore and pick up a book quickly without having to pay a fortune to park in a garage and then walk several blocks. I want to stop living out of a suitcase and sleep in my own bed next to my wonderful husband (and of course Xavier at my feet.) There are many many other things that I think of on a daily basis.


***Okay, I had to stop typing for a couple hours to hold Teryn and try to get her back to sleep. I was just putting her in her bed and asking the night nurse to check other options if her IV went bad before they did the central line and as I was speaking to her the IV alarms started sounding. The IV line has gone bad. Uggghhh. The nurse is out to see of someone can get a line into her hand or leg. Please pray they get something so she doesn't have to get the line in her head and also so she can get her nutrients. I have also asked that if they can't get the line in to please check the placement of her ND tube again just in case in finally moved to the correct position.

Instead of leaving like I planned, looks like I will be hanging around here even longer to see what happens.

Surgery scheduled

Yesterday after many calls and much pestering we finally got Teryn down to radiology to have her ND put back in so she can eat. It was not a very easy procedure. I watched the screen as they spent over half an hour trying to get it in the correct place. Every time it got to the pyloric opening it would just curl back up into her stomach. They finally got it right on the cusp and decided that was the best they were going to be able to do.

She also lost her IV the previous night and they were unsuccessful in getting another one in. So, we had no way of giving her any type of fluids...again. They decided to go ahead and restart her feeds at half the amount in hopes that the flow and the contractions of her stomach muscles would move the tube into place.

This morning I came in and sweet girl was awake. I was talking to her and as I watched her eyes, mouth movements, and decreasing oxygen saturation I knew exactly what was about to happen. Seconds later she began refluxing her feeds. I found her nurse and asked if anyone had seen any reflux. They said no and I explained that she definitely was now. I wanted to reach over and turn the pump off myself because I knew that the drs would say to stop the feeds and I did not want her to keep choking and possibly aspirate. As soon as the doctor came in she turned off the feeds and hunted down one of the IV team. The sweet doctor, I know she is almost as frustrated as I am. She had tears in her eyes as she was apologizing to me that we were once again unsuccessful at being able to safely give Teryn food.

The IV tech who came was someone who has been very successful in the past. I was glad to see her. She was able to get a line in on the first stick with Teryn barely noticing. She and I agreed that if Teryn happens to need another peripheral line then we are hunting her down. We decided that we are going to attempt to get a central line in that can stay in place much much longer. This way we can give her the full amount of fluids she needs and she will already have a line for the surgery. Someone should be able to come and do the central line today.

The g/j tube surgery has been scheduled for Friday. We do not have a time yet but since she is so small, chances are she will be one of the first that morning. Please remember to keep Teryn and the doctors in your prayers. Once this procedure is done then we will be very close to coming home.

Teryn has been losing weight over the past few days and I can tell that she has been stressed. She gets hiccups a lot and has a very hard time resting. Today she has been desatting a lot when she is trying to fall asleep. This is something she does when she is too tired to fall asleep. I was a little aggravated that I had to ask the nurse more than once to turn her 02 up when her alarm kept sounding because her oxygen saturation was falling to the 50s and 60s and I had to keep stimulating her to breathe. She was in that state where she gets so tired she can't get over the hill to fall asleep without a little help with air. Luckily she finally fell asleep and has been resting a while. I was so worried when the infectious disease doctor came in and wanted to see her tube site. i was afraid she would wake up and we would have to start all over again. Thankfully she slept right through us moving her and even changing her diaper. The ID doctor said her site looks a little irritated from the leaking of her feeds and gastric juices but no infection.

So that is the news for now. James will be coming this weekend and the plan is for him to stay this time until we go home. Tomorrow marks 7 weeks for being at MCH and today Teryn is 13 weeks old. She had her 3 month birthday on Sunday. We are definitely ready for her to celebrate every other milestone at home.

Get ready to be blessed

The surgeons came in today and said they will do the procedure to have Teryn's tube advanced!!!! Praise the Lord. Regular jtubes are too large so they will be going with the method we had tried before which is having a thinner tube threaded through her current gtube to make a g/j tube. They will do it under general anesthesia. It will be sometime this week. There are a few risks involved such as the procedure possibly undoing her fundoplication that she had done, there is the risk from the anesthesia, and they will have to put air in her stomach which may cause it to be distended for a couple of days. I know God has Teryn under his protection so please continue to pray that He will guide the surgeons hands and the procedure will go beautifully.

One of my concerns was what could we do if the tube came out down the road when we get home. I explained where we were from and that we only have one surgeon who will do these types of procedures. This is the same surgeon who did Teryn's original procedure. The MCH surgeon knew him by name and spoke highly regarded remarks (as several people her have) about him. Go Doctor Taylor! He said that if his own child needed a surgery he would have no worries about Dr. Taylor doing it. So, that makes me feel better that if the tube comes out (which they sometimes do) then hopefully we will not need to travel to have a new one put in. I was also glad to know that Teryn may begin to eat as soon as she comes out of anesthesia as long as there isn't a lot of air distending her belly.

I spoke with the doctors during rounds this morning about Teryn having to remain on IV fluids until the procedure. It is so difficult to get a line in her and they do not last very long. The IV nurse yesterday said she was using the last possible one she saw. Teryn has extremely tiny veins like her mommy. So...the doctors have agreed to attempt to put the ND tube back in temporarily so she can eat. They will do it under a special type of xray so they can get it back in the correct place. The radiologist couldn't get it in on Thursday, but the method they are going to use today has worked for her in the past.

Thank you so much to everyone has has been fasting and praying with us. During my prayer time I have also been praying for each of you. I have prayed that God will also bless you. I am so touched at things I am hearing about how God has blessed so many of you through Teryn's struggle. God is so amazing and faithful. I have seen several people grow closer to Him and grow in their own faith all because of Teryn.

Last night one of my dearest and certainly 'oldest' friends sent me something wonderful. (I say oldest because we have been friends for 18 years now even though we only lived in the same state for 3 of those years.) She put a link of a song on my FB page. I believe I have heard it maybe one other time but only remembered it very vaguely. As I listened to the words I felt God speaking them directly to me. It was such a perfect message at an even more perfect time. I began to weep (in joy) and thank God for what an awesome God he is and how He has so many wonderful things planned for us and Teryn. Every word spoke to my heart but I believe the words that stuck the most were: "The pain that you've been feeling can't compare to the joy that's coming." I think it is going to be my motto!

Listen and be blessed:

http://www.youtube.com/watch?v=oZDQzR8LK-c&feature=related

After I listened to the song I began looking at some of the videos around it and saw one titled: "The story behind Before the Morning"

Yet another way God has confirmed His promise to us....look at how good my God is...this song was written by Josh Wilson for 2 friends of his whose son was born with several problems. This song was about a family going through a struggle so similar to ours. Can you believe it? I immediately texted my dear friend to ask her if she knew the story behind the song. She did not but God did.

If you want to be blessed right now, watch this story:

http://www.youtube.com/watch?v=0704_oGFX1w&feature=related

I have said so many times that God has such an amazing plan for Teryn's life, this was just another confirmation.

Thank you for your prayers and keep them coming. I pray that you will continue to be blessed by our Lord and Savior as you do.

Prayer and Fasting for Teryn

For the past couple of weeks the Lord has really been leading me to ask others to fast and pray for Teryn. Several times I began looking up scripture and getting together my words to send out to others but somehow the timing did not feel right.

Last night as I was leaving the hospital I drove by a church that was beginning their Wednesday evening service. I suddenly felt such a longing for being able to worship and learn with fellow Christians. Unfortunately this was a Spanish speaking church (as most here are) so I went on to my room. Lucky for me, my wonderful church family had sent me some CDs of recent services. I decided to begin listening to the one with the earliest date. It was a Wednesday night service so I figured it would be perfect. It was. The subject of the message was PRAYER and FASTING. I really shouldn't have been so shocked and amazed, I mean, of course that was the one God had the ladies copy and send to me. Of course that was the one he wanted me to hear at that exact moment.

AS I began listening to pastor and following along with the scriptures in his message I just had to laugh. It is so incredible the way God pieces things together in our lives. I am not one to underline and write very much in my Bible. It has always felt like I was ruining something sacred. I know, I know, I am getting better but still, my Bible has very few underlined passages in it. Well....2 of the main passages from Pastor's message were underlined in my Bible and one of them even has (gasp)....writing. I had written a couple of thoughts on fasting and the state of your heart during it.

Here is what was underlined in my Bible and my note under it:

The scripture says: "...nor will I give burnt offerings to the Lord my God with which costs me nothing."

My note says "An offering to Jesus that costs me nothing is a 'token commitment.' It means very little. If my sacrifice is truly a sacrifice then it will please the heart of God and He will bless me in return."

If you are not familiar with prayer and fasting and its importance, here is a link that will help.

http://www.cbn.com/spirituallife/prayerandcounseling/intercession/hickey_prayerfasting06a.aspx

Basically it is all about heart and as Pastor says, how badly you really want a breakthrough. I don't know if you can tell by how much we truly love Teryn but we REALLY want a breakthrough. Along with all of you we have been praying everyday for Teryn to be well enough to come home. I am ready to let the Lord see my heart and see how much I truly want this. The Lord will give what we ask if we ask with a pure heart and according to His will. I know it is His will for Teryn to be strong and to be able to come home and live a full life surrounded by so many people who love her.

I am asking you to join us in a prayer and fast for Teryn. God cannot help but hear us when we pray and fast. I am asking for you to fast and pray for at least one meal today or tomorrow. Now that does not mean skip your lunch hour and go run an errand. True prayer and fasting means that you will deny yourself by denying a meal and spending that time in fervent prayer. I am asking you as a mommy who desperately wants to see my baby get to come home. If you are not sure what to pray then put yourself in our shoes and think of what we would ask. If you are a parent then imagine spending 84 days so far in a hospital watching your child have to endure procedures and feeling helpless. Just ask God to place his hands on Teryn and make her stronger. Ask Him to guide the doctors hands and give them wisdom to make the right decisions. Ask Him for His will which is health for Teryn. When God hears our prayers and sees our hearts he WILL answer.

I will be waking up early tomorrow and spending my breakfast time in prayer. I have chosen tomorrow because that is when Teryn will be having the procedure that will hopefully be her ticket home. She will be having her gtube advanced. This procedure failed last time. However she is going to have her stomach dilated today so that they will have a better chance tomorrow.

I know that Teryn has so many people who love her and have not had the chance to meet her yet. I tell her that all the time. I thank you for your prayers all along our journey. If you choose to join me in this prayer and fast for Teryn, please know from the bottom of my heart how grateful I am. I will be praying that God will also bless you.

****revised addition:
We went down to have her stomach dilated for the gtube advancement and the radiologist said he was going to go ahead and do the whole thing today because he had the right size tube. He explained everythign to me and had me wait in the hall. After about 45 minutes their attempts failed. He said he does not want to try again. The shape of her stomach makes it difficult to pass it through without forcing and causing harm. He suggested that surgery may be able to pass it laproscopically. On top of this he was unable to get her ND tube back in place. Remember this is how she has been being fed. He had to remove it to do the procedure and was unable to get it back in place. The tube is now in her stomach and as we now know she cannot tolerate food in her stomach. So, yep, she had to get an IV again in order to keep her hydrated. Luckily this was successful on the first attempt but she did have a desat in the 40's and had to be placed back on the oxygen cannula. The resident is waiting to hear back from the attending and surgery to come up with another plan of action because as things stand at this moment we have no way of feeding her.
Needless to say I am frustrated beyond words but I will not allow this to get my faith down. God is still in control. Now even more than before I am begging you to join with me in prayer and fasting for Teryn. We don't just want a breakthrough....we NEED one.

Getting ready for the new tube

We are waiting to hear back from radiology. They will be placing her new tube either this afternoon or tomorrow. Since it is already after 3 here, I am assuming it will be tomorrow. Then they will try the advancement on Friday. Hopefully this plan of action will work a little better than doing it all at the same time as before.

The infections doctor has monitored her site infection daily and says it is looking good. We have been putting some duoderm tape snugly around her stoma and the hole is closing up much better. We are hoping this will help prevent future infections.

I am being optimistic and trying to get a few things in order in respects to going home. Baby girl is doing so great. Desats have been very minimal. Each head ultrasound has come back stable. We just need to get this tube issue taken car of.

Her physical therapist continues to be very pleased with how she is doing developmentally. She is getting so strong with her head control. We still have not seen a speech pathologist even though I have asked numerous times. The OT has only been in maybe 3 times over 6 weeks. I am concerned because we really need to be working with her on oral stimulation to get her swallowing. This is a huge hurdle that in hindering many areas right now. For one, we cannot even attempt bottle feeds because of the high risk for aspiration. It also impedes her airway when she gets too much saliva in her mouth and she cannot swallow it. She LOVES her paci but the more she sucks, the more saliva she creates. Then she just gets a pool of liquid sitting in her mouth that either comes out of her nose (because of the cleft palate) or she starts choking on it which makes her upset which makes her want her paci which starts the cycle all over again. Needless to say...we must have a suction machine when we go home. A bulb syringe is not going to cut it for her.

First Mother's Day

My first Mother's Day was a little different than I expected in many ways. For one, I never planned being in a NICU 700 miles away from home. Also, I didn't expect to have a migraine that kept me in bed until 6:00 in the evening. However, I did not let it get me down. I rested until I was better and finally came to see my beautiful little one around 10:00 at night. When I got here I saw that she had made me a card. Notice how loooooong her fingers are. (Her toes are just as long.)



I gave her a bath and got her settled and snuggled in before I left.

She has gotten to where she moves so much in bed. We have to put up a bumper or else she is hanging out the rails waving to everyone walking by.

I haven't updated in a few days mainly because there hasn't been much change. On some accounts that is very good. Let's see, she is 11 pounds now. Last night after we weighed her I went over to the conversion chart to see what her weight is in pounds and she isn't even on there because it only goes to 11 pounds. She has cute little rolls on her legs and arms now. Her breathing has been really great lately. She has gone from having several desats an hour in the beginning to having maybe one a day now.

Her infection around her gtube is getting much better. She will finish this round of antibiotics on Friday and the plan is to attempt the gtube advancement into a g/j tube then. Please pray that it works this time. Once it is in place, then we will just need to monitor a few days to make sure all is well and then we can start planning discharge.

Everything else has been really good lately. No noticed seizure activity, as I said respiratrion has been good, no more reflux or vomiting. Just a gassy little girl who has her days and night mixed up. I will be working on trying to get that turned around before we go home.

The jury is still out on one new development....a couple of her nurses have mentioned they think her hair is getting a redish highlight to it. I say it is definitely getting lighter. In some light it does look a little redish. I guess she gets that and her height from her Uncle Lee. We will have to wait and see if she turns into a silly ham like him and cousin Trista.

Teryn's friend Paige gave her a swing to use while she is in the hospital. Paige didn't like it and Teryn is still trying to make up her mind as you will see from the video:

One new toy that she does seem to like is her mobile. She likes watching it until she catches sight of mommy off to the side: (Her hair looks a little redish here?????)

Ultrasound normal

Teryn had another infection at her gtube site. Her nurse and I were very suspicious Monday when we noticed a smell and discharge again. The culture came back positive for staph. Yup....this is the same one she has already been treated for once. Somehow it came back. She has begun another round of antibiotics. Good news is that they are using a different one now that does not have to be given through IV.

She is IV free right now since she was able to resume full feeds again. This is especially great since her IV was having to be replaced everyday and they were running out of veins to use.

I pressed the issue about getting an ultrasound of her pylorus this morning during rounds. They agreed and put in the order. As we were doing her touch time (changing diaper, temp, measurements, assessments) we heard a gurgle sound and she had a very large amount of mucus and saliva looking liquid come out of her mouth forcefully. She did this twice. Her nurse said that she believed it was her vomiting. Since her food does not go to her belly, she just vomited what was in there. We cleaned her up and watched her closely for a while. So far it hasn't happened again today thank goodness. Good news is that she really seemed to feel better and be less fussy afterwards.

The ultrasound tech came in during all of the commotion and was sweet enough to wait until we got Teryn clean and settled. She was having a very hard time getting clear pictures of what she needed because the gtube was in the way. She went ahead and took the pictures to the radiologist but they were inconclusive. Therefore, we had to stop her feeds for an hour and then try again. The second time was a little better. We received the results and everything there is normal. YAY! this is great news because that means we have avoided a surgery. Now we still don;t know why she cannot tolerate food in her stomach if she is not refluxing. (so the tests say.) Yeah, not sure if I have posted this yet, but we have now had 2 reflux tests come back saying there isn't any.

Her physical therapist said he was pleased with how she is doing. She even showed off how well she can hold her head up for tummy time.

So, now we are still waiting to hopefully get the gtube advanced. They will monitor her for a couple days after this is done and make sure she is tolerating her feeds this way. As long as there aren't any other issues coming up at that time then we can start talking about discharge plans. This is going to be a challenge itself. Chances are insurance will not pay for her to be transported home unless she is on oxygen. We are quite apprehensive about taking her for a car trip that will take 9 hours not including stops. This is challenge enough for any baby, but we are especially anxious considering she has never been away from the hospital yet. We have a couple options to consider and things to try to work out. We are definitely ready for that challenge if it means we get to come home.

GERD test today

Teryn went down for the GERD study this morning and we are awaiting the results. They are going to try and have her ND put in again today so that she can eat again. They will attempt to do it under xray so they know for sure it is in place.

Her gtube site looks very red again so they have sent off for a culture and gram stain to make sure there is not another infection. Presently they think it is just because her tube leaks some and she has extremely sensitive skin. Hopefully this is the case so she won't have to receive more antibiotics.

I mentioned to the attending this morning my thoughts on the pyloric valve and he said he was wondering the same thing so we will look at the results from the GERD test and if there is trouble again with the ND tube then they may do an ultrasound to check and see if there is a concern with her pyloric valve.

She is receiving yet another IV today because as we have seen....her's will only last a couple days. We are ready to get her back on food so the IVs can go!

Another reflux study

James made it in to Miami safe and sound a little after midnight. As soon as we woke up this morning we got ready to come and see our little girl.

The doctors still had no success with getting the ND tube in place. After my discussion with the surgeon yesterday they have decided to go ahead and do another reflux study. This one will be a GERD study and unlike the upper GI this one will be over a longer amount of time. The plan is still to try the g/j tube advancement at the end of next week. However if the test definitely still shows reflux then we have a possible backup plan with surgery.

Pyloric stenosis had been mentioned to us by family a while back. This is a condition where the valve at the bottom of the stomach does not function properly to empty food. This usually results in projectile vomiting, dehydration, and failure to gain weight. Teryn has not shown any of these symptoms. But over the past couple days I have been thinking....she wouldn't show dehydration because she is receiving IV fluids, she is gaining weight because food was being diverted past her pyloric valve and she is receiving supplement powder in her milk to help her grow. She may not show much projectile vomiting because of the previous Nissen fundoplication to tighten her esophageal sphincter (sometimes people who have had this procedure can no longer vomit.) I was just wondering if maybe there could possibly be a problem with her pyloric valve because they have trouble getting the feeding tube through it and also because yesterday the reflux that came out was fairly forceful. I mentioned this to the resident this morning and he said it is something to keep in mind.

I am thinking maybe we should have an ultrasound to check and see just to rule it out.

False alarm call to surgery

Here is an update on the doctors' attempt to try feeding through her gtube again. After about 3 hours she was still sleeping on her belly and I heard some wet breathing noises. I stood up and looked and she had refluxed milk all over her blanket. It was coming from her mouth and her nose. I called the nurse over and it was coming from her gtube site a little as well. The nurse initially thought that her tube was coming out so they immediately called surgery. The surgeon came in and said it was fine but that the wafer had moved and needed to be tightened down. I mentioned this to a couple of nurses over the past couple weeks and they both said no it wasn't supposed to be moved. The surgeon tightened it up and was bidding his farewells when I told him he wasn't going anywhere so fast because I had been asking to speak to surgery all week.

I asked him about the reason surgery said they did not want to revise her fundo. He said of course one reason is because of the risks involved but mainly because on the upper GI study they did when she arrived a month ago, there was no evidence of reflux. I remember that day and I remember her refluxing later that day. I stared at him with a look that I know said much worse things than the words coming from my mouth. My reply was, "Her nurse and I just suctioned a large amount of partially digested milk from her nose and mouth. No one can tell me she is not refluxing regardless of what a very short test says." I then pulled back a blanket and showed him some of the evidence on her bedding. He replied, "Yes, but the test does not show reflux."

Frustration does not even come close to what I was feeling at that moment. I will not offend you with the things going through my mind at that point and what I really wanted to say to him. Instead I was as polite as I could muster so I did not let my flesh get the best of me. I discussed a little further what my concerns were and asked for a little more information. Basically they want another reflux study before they would consider doing anything. Of course we stopped the feeds AGAIN. Her ND tube had already been taken out so they are going to let her rest and then attempt to insert it again later. It is a possibility that since the gtube was too loose that could be one reason the ND would not go in the correct place.

Even though I was so frustrated, as soon as the surgeon left I changed Teryn and sat rocking her and said "Lord, I praise you anyway. This did not turn out as I hoped it would but I know that you are still in control. I love you anyway and know that you still have your hand on Teryn"

I am not going to lie and say that is easy but in my heart I still know it is true.

Snoring and Gtube Feeds

I came in this morning and Teryn was "soundly' snoozing on her belly with her face planted in the sheets. She gets that luxury for now since she is on such high tech monitors. Her nurse and I were cracking up at her snoring so I grabbed a quick video of it. Sorry you can't see her, I was trying to get close enough to get good sound. Hilarious.

I saw that the nurse was getting her milk ready so I assumed that the recent xray showed her ND tube to be in place....nope. During rounds they decided to take the ND out and try gtube feeds again. On Wednesday she was refluxing with food in her belly. However, we know our God is the God of miracles so let's see. They have started her at a very low rate, 10mls an hour continuous. She eventually needs to be at 27 an hour for full feeds. If this works, then there is a possibility she may not have to stay on continuous feeds which means she would not have to be on the pump 24 hours a day.

The doctors are hoping this will work while we wait the 10 days to retry the other tube procedure. However...if this works then we won't need the other procedure. Also, if they can get the ND tube out of her nose then it may help with her breathing as well.

Great news!!!! James is on his way to visit us today. We can't wait to see him. Teryn has grown so much since his last visit. I can't wait for him to see her on her tummy lifting up and looking around and especially to see her smile!