Home again

We are finally home again after a week stay in the hospital. We arrived last Saturday night around 9 pm and were discharged this Saturday night around 9 pm. Teryn has been feeling much better. Here is a picture of her smiling at Elmo yesterday:

We kept watching her oxygen saturation and it was doing very crazy things. For example the alarm would go off and it would say 65 (very low) but she would look okay and then it would immediately jump 10 points and then another 10. I have seen her when she truly stops breathing and her O2 goes low and it takes her much longer to recover. The nurse was great and very observant of what was going on. We were both concerned that we were treating the technology and not Teryn. One of her respiratory therapists from the NICU came over to do a treatment and decided to just leave the nasal cannula off. Her sats stayed in the exact same pattern as when she was on the cannula. Of course a lot with Teryn is positioning. For example, we know she needs to sleep on her belly for optimal breathing. Her pediatrician came in and was very happy with the way she looked and sounded. I could tell she was definitely getting back to herself again. She is soooooo happy to be home. It is absolutely amazing the difference in her temperament when she is home. It is like she is saying, "Oh thank you. I couldn't wait to get back here."

On a funny note I scared the pants off of the nurses yesterday. Teryn and I were in a private room with the crib for her and a bed for me. There was a curtain in the middle that I would pull across the room when I had to pump. Well, her nurse was telling me that they were getting a little low on her milk so I decided to go ahead and pump. After I was done I was holding the bottles in one hand and was closing the curtain with the other. I was trying to push it all the way against the wall and out of the way of her food pump and nebulizer. I then began walking toward the table to store her milk and all of a sudden several nurses came barging in the room. Teryn's nurse was first and saw me standing there with the milk and said "Oh, yeah, we are good." Confused I said, "yeah we have milk now." I was a little confused why so many nurses would be worried about not having milk. Well apparently when I was pushing the curtain back I pushed the emergency call button on the wall. (Not the regular nurse call but the emergency call.) I felt like such a dummy but it was still pretty funny having a bunch of nurses running in and then me standing in the middle of the room confused with my hands full of breast milk.

When we got home we were so excited about finally getting a good night sleep. Well that only lasted about an hour before the power went out!!!! It is waaaaayyyy too hot here to not have power. No AC and not even the option of a fan. The power was not restored until 10am. There wasn't a storm or anything but the power crews were working a few houses down all night. So needless to say I did not sleep between being hot and also worried about Teryn's equipment having enough battery life left since we hadn't been home charging it in a week. Thankfully the house is nice and cool now so we all took a long nap this afternoon.

It is great to be home. Now it is time to get in gear for preparing for the upcoming school year. So little time and so much to do. Teryn will be going up to my classroom with me a couple days this week and then we have 2 out of town doctors visits to see Neurology and Gastroenterology. Will let you all know how it goes.

Update on our current hospital stay

We are still here in the hospital. Tube feedings are still going very well. She is on full feeds and I have not seen any reflux at all. Praise the Lord!!!! We went down to radiology yesterday and they advanced the j portion of her tube a little more to be sure it is way in there where it needs to be. The surgeon also had them check her gtube placement because he thought that it may be sitting on her pylorus and causing some of the emptying problems. Sure enough it was. So he came by after we got upstairs and adjusted it some. We will get with him later on an outpatient basis to discuss and schedule when we want to redo the fundoplication surgery. From his standpoint we are clear for discharge but now we are still dealing with........the respiratory issue.....

She does have some type of mucus blockage on the upper portion of her left lung that is causing her to struggle to pull in enough oxygen. Her pediatrician has now put her on an IV steroid as well as a steroid through the nebulizer to help. She is still continuing the antibiotics from her ear infection that are doing double duty now for the respiratory infection as well.
Yesterday I noticed she was kind of warm but her axillary temp was 98.9 when it was checked. Then last night as we were about to give her a sponge bath I thought she still felt very warm so I mentioned it to the nurse. She went ahead and did a rectal temp and it was 102.9!!!!!!! Her heart rate had been staying on the high side as well and the nurse said this was common if there was a temperature. So the high temp explains the high heart rate as well as why she has just been wanting to sleep. We gave her a tepid bath and that brought the temp down quite a bit. She also got a dose of Tylenol and today her temp is fairly normal.
This morning we noticed that her IV was leaking some around the site so one of the nurses took it out. Hey, I am pretty pleased that we got it to last 4 1/2 days especially since at times she was moving and bending her arm quite a bit. We are hopefully going to be able to leave it out. She doesn't need the fluids anymore since she is up to full feeds. Also, any of the meds she was receiving through IV can be given another way. We are just waiting for a response from her ped to make sure it is ok and get the orders. He has already changed her seizure meds from the IV back to her g/j tube because the level kept dropping to the point that it almost wasn't therapeutic anymore. The therapeutic range is between 14 and 40. She normally sits around 25. Yesterday it was 16, I believe the lowest it has ever been. So her ped changed it back to g/j tube and ordered a double dose as a booster.
Hopefully today we will begin slowly backing her off of the oxygen again until she is able to hold her 02 saturation on her own. Pretty much when she can do that we can go home as long as the fever doesn't return.
Please continue to pray for strengthening of her body. She is certainly one tough cookie and an amazing little fighter. Everyday I am blessed to see more and more what a precious gift she is. No one can help but to fall in love with her. She is making new fans during her recent stay and we have been so happy to be able to see many of her NICU friends also.
God has such an amazing plan for Teryn and our family. She has already touched the lives of people she has never met. There have been people who do not consider themselves a "person of faith" who have contacted me in one way or another and said they do not pray, but they have been praying for Teryn. How amazing that she could be the inspiration to get someone to want to talk to the Lord. My prayer is that God will bless all who have spoken Teryn's name to him. And oh boy has He been hearing her name a lot. Not just from friends and family who know her but people who know someone who knows someone who knows someone who has heard about our amazing girl. I also just found out that she has been added to a prayer chain through our church that involves 400 other churches. That is 400 churches worth of prayer warriors speaking my baby's name to the Lord!!!!!!! I don't know about you but that speaks to my heart.
She is resting quietly right now and should be receiving a breathing treatment shortly. I will continue to keep updates coming as I can.

Pneumonia

Feedings went very well last night. Teryn was able to get back up to her full volume with no problem. They did have to stop them at 4am in preparation for another procedure in radiology today. They are going to work under special xray imaging so they can really see what they are working with. They are going to advance the j portion of her tube into her intestines a little more to be sure it is in good placement and will be less likely to come back out. Then they are going to pull the g portion back a little because her surgeon is thinking that maybe it is sitting down too far on her pylorus and could be causing some of the problems with her stomach not being able to empty properly. Her stomach is very small and unfortunately she has to have a larger tube in order for it to meet the functions she needs.

Her pediatrician came by yesterday and ordered a chest xray and breathing treatments based on our concern about the wheezing sounds she was making. He agreed that she sounded a bit congested. The xray results came back last night and it looks as though she probably has a bit of pneumonia. Not sure if it is caused by a viral infection or if it could have been a result of aspirating on the reflux she was having. She has been trying so hard to cough but can't seem to do it. She has been so miserable. She has been sleeping almost 24 hours straight. She barely even woke up when the tech came in to take blood for her med levels this morning.

They decided to put her on a nasal cannula for oxygen yesterday because her 02 kept dipping and wasn't climbing much higher than 85. One of her respiratory buddies from NICU came over last night and put her on some warm, humidified air. That seemed to help quite a bit. This morning she was still having some trouble with all of the congestion and was having difficulty keeping her 02 up. We propped her up on some pillows and it seems to be helping. Daddy ran home before work and brought some of her pillows from home to make her more comfy. Her 02 levels are staying in the 90's now but only with the nasal cannula. It has come out a couple of times when she moved and each time her 02 alarm went off because she had dropped.

We will see what the pediatrician says when he comes in later today and gets a close look at the xray. She is already on antibiotics for her ear infection but he mentioned he may give her another one to boost. So, we will see. Based on the surgeons point of view we should be able to go home as soon as they finish with her tube. Now, we just have to wait and see what happens with this breathing issue.

Here she is sleeping soundly on her pillow.

Her beautiful little face with the all too familiar nasal cannula.

Elmo has a Boppy pillow too. He sits at the foot of her bed waiting for her to want to wake up and play.

She is a high tech baby once again. Lots of crazy beepy machines.

We are currently waiting on radiology to call us down. Will post updates when we have them.

My mom is doing well since being admitted to the same hospital yesterday. We should have some test results soon and hopefully she will be able to go home.

Getting food but now a new problem

We originally had a scheduled time of 10:00 to go down to radiology but as is the nature of hospitals we got pushed back to 11 and finally got to go down at 11:30. We stood around for about another half hour because there was some confusion and everyone thought someone else had the correct tube. The radiologist went ahead and decided to take a look. He injected contrast and what we found out was that there wasn't a break in her tube but rather it had worked its ways almost completely out and was hanging around in the external portion of her gtube. They sent us back upstairs and began the search for a tube that would work.

The nurse got on the phone with Miami Children's to have Teryn's records faxed over and try to find the correct tube info to have a new one overnighted. Meanwhile the surgeon came in with a tube in hand that he found in ICU. He took the old one out right at her bedside and began trying to work the new one in. Xray came up and the tube was coiled in her stomach. The surgeon took it out and pushed it back in again. This time the xray showed that it may be in place. So, we have begun trial feeds at about 1/3 her usual amount and will increase as she tolerates it through the night. Looks like we will be holding off on surgery for a little bit, especially since the surgeon is about to go out of town and be away for a while.

Throughout the day I was noticing that Teryn's breathing was quite a bit more labored and that she sounded like she was wheezing. She always sounds rattly from her secretions but this was different. We put her back on the 02 monitor and her sats were lower than we would like. She was taking breaths just fine but was having a hard time pulling in the air. She has also been trying desperately to cough up congestion in her chest but isn't quite sure how. So......long story short....she is on a nasal cannula to push humidified oxygen through and will be receiving breathing treatments every 3-4 hours until the wheezing stops. Her pediatrician has ordered a chest x ray to make sure her lungs are okay and she hasn't aspirated. So, we think we have the feeding issue mostly resolved but now we have a new challenge.

In addition, my mom was up visiting today and wasn't feeling very well. I knew there was something she wasn't telling me. She spoke to Teryn's nurse outside and the burse talked her into going downstairs just to have them hook her up to the machines and check her out. They decided to admit her and run some tests because of her recent heart attack. They wanted to put her in ICU but she refused so they have her in a room on the floor above us. I suppose at least now the family doesn't have far to go to visit.

Emergency room and MORE

Well, here we are again living our lives in the hospital. We had to take Teryn to the ER Saturday night and she had to be admitted. (Not because there is anything wrong with HER.) Let me go back a few days to give you the full story.

Last week I noticed that a couple of times when she spit up that there was a pink tinge to it. Usually her spit up is clear because NOTHING goes into her stomach except for the saliva she swallows. So to see pink was obviously puzzling. The next morning when I went to take her out of her bed she spit up and there was a lot of pink. This is when I got really suspicious. I immediately knew it was her anti-seizure meds because that is the only thing she gets that is pink. The million dollar question is how did it get to her stomach to be refluxed in the first place????? I took her out of the bed and put her on her changing table to begin changing her diaper, clothes, and gtube dressing. Then I received an even bugger surprise....the gauze all around her dressing was pink as well. So, the meds were definitely in her stomach somehow and were being forced out the opening in her stomach that holds her gtube. This was on Wednesday and at that point she had not had a bowel movement in 3 days so based on both of these concerns we got an appointment to go in and see her pediatrician.

Her pediatrician was also puzzled about where the pink could be coming from but wasn't too concerned about it at that point because we still assumed her g/j tube was in place because she wasn't refluxing any of her food. We began a referral for the gastroenterologist and he suggested giving her prune-apple juice for the constipation. (wow, there are fun topics on this blog aren't there). He also discovered that she had ANOTHER ear infection in her right ear and the beginnings of an infection in her left ear. So we got a prescription for a stronger antibiotic and headed home. The next morning the prune juice had done its job (I will leave it at that) but her gtube dressing was pink again and she began refluxing pink again. I called her doctor and asked if we could possibly get an xray to check for placement and also a blood level to make sure her seizure meds were still okay. We got the results of both of those things on Friday and they were fine. So we were left still being puzzled.

Saturday I gave her seizure meds to her very slowly hoping that would help with it not coming back out. It seemed to be helping. We went up and did some work in my classroom and we were going to go grocery shopping but Teryn was a bit fussy and was spitting up more than usual so we decided to head home. Later that night I was giving her the antibiotic and I couldn't get it to flush through the tube. I did all the tricks we learned in our gtube class to get it cleared and was successful in getting the full volume to go through. Then I went to get her bath ready and James was holding her. He called me back into the room and said her clothes were all wet on the back. I checked her stoma site (where the gtube goes in her stomach - this area used to leak when she was receiving food in her tummy) it was dry. I checked to make sure I hadn't forgotten to close the port, checked to make sure it wasn't her diaper. It looked like water and the antibiotic I had just given her. At this point I knew there had to be a break in her tube somewhere. So I got some sterile water and flushed it through and sure enough it started squirting straight out.

Here is a picture of her tube so you can somewhat see what I am talking about. The white is the gtube part that goes straight into her stomach. The yellow is the j part that bypasses her stomach and goes straight into her intestines. There isn't a g/j small enough for Teryn so this is one that the surgeons created. You can see this port would usually close but since there is another tube going through, it can't. This is where her gastric contents were leaking from until they finally filled the open area with some stoma adhesive paste. It has been great since then. She still isn't leaking gastric contents, rather there is a break in the yellow j portion somewhere in this area and when I tried to flush the water through it squirted out of this port. So when I tried giving her meds it would leak out of the yellow(j) into the white(g) and flow into her stomach and ultimately be refluxed.

I knew we were going to have to go to the ER since we couldn't give food or meds and she might get dehydrated. I also knew that since it was Saturday night that we would probably be admitted so she could get fluid and meds. So I packed up what she would need and we headed to the hospital around 8:30 pm. As soon as we got here I asked if anyone had seen her surgeon in house but he wasn't around that night. I knew ultimately this would be a case for him. So we got situated in our new pediatric ER and waiting on the ER doctor to come and see us. Here is Teryn waking up from a short nap she was taking.

This is one of the new holding rooms in our new ER.

The doctor working that night was new to the area and this was only his 2nd night at our hospital so he wasn't familiar with our surgeon. I told him to mention the name to anyone in the hospital and they would know him. Sure enough, within 10 minutes they had spoken to him and Teryn's pediatrician and they decided to admit her for fluids and meds (saw that coming huh?). We knew if there was ever a problem then it would be a process to fix or replace this tube. So around 10:30 we headed up to her room. The nurses were getting her ready to go and have an IV put in. I warned them it was a tricky ordeal for her and that most of her veins had been used up and haven't recovered yet. So........2 HOURS later they come back and tell me they were unsuccessful with getting a line in. I was not surprised and knew it had nothing to do with their ability. They had even called over one of Teryn's previous NICU nurses to try. Ultimately they had to call in the anesthesiologist and thankfully her was able to get a line in. Whew!!!
Teryn was so sweet about the whole thing and didn't even fuss. Here is a picture of the sweet girl when she was finally able to get ready for sleep at 2am.

She was out in less that 5 minutes. The NICU nurse found out she was here and we have seen many of our old friends since being here. Teryn has her own little fan club and everyone was so excited to see her.

For a while after falling asleep the 02 monitor kept alarming because she was desatting. After watching what was going on we realized she was refluxing pretty bad and would hold her breath for a few seconds from the burn (remember she had to miss her med doses and didn't get her antacid.) She eventually leveled out and slept until 2pm Sunday afternoon. She is a 12 hour sleeper and she decided going to bed late was no reason not get get all of her sleep in. We will worry about getting her back on schedule when we get home.

Her surgeon came in around 7:30 Sunday morning and said he was working with radiology to try and replace just the j portion of her tube. He also said that ultimately he thinks she needs to have her original surgery revised because he thinks it may have loosened. Theoretically she should not be able to reflux because she had the fundoplication done. I told him I still feel like her stomach is not emptying properly because she cannot hold even a teaspoon (this is the amount of meds she gets) without it being forced back out. He agreed that there could possibly be an issue with her pyloric valve even though the ultrasound in Miami was normal. Ultimately he believes she needs these two surgical procedures so here is the plan for today (Monday)........We are waiting on radiology and they will attempt to replace her tube under x ray. If they are successful then she will resume feeds right away and we can go home within 24 hours. Then we will schedule a time with the surgeon that we want to do the surgery. If, however, radiology is not successful then we will schedule the surgery for tomorrow and skip trying to get the existing tube back in.

Of course I am heartbroken about another surgery and absolutely do not want for her to have to go through that again. However, if the surgery fixes what we need it to fix then there are some great advantages

1)no more reflux which will mean less need for suction and hopefully fewer ear infections

2) she will be able to receive food in her stomach and can go to feedings every 2-3 hours instead of having to be hooked up to the feeding pump 24 hours a day

3) we will have overcome the largest hurdle standing in the way to her learning how to feed by mouth

So we are just praying that God will direct this path for us. (Prov 3:6) "In ALL thy ways acknowledge him and he will direct your paths."

I know God is in control. He has Teryn is his hands always. He works all things together for the good for those who love Him. My Aunt carol who is a wonderful godly woman posted something on her FB today that was just perfect..."Because God is with us we need not fear what lies ahead." Thank you Aunt Carol for following the leading of the Lord so that I could receive this word today.

I am so thankful that my God is with me everyday including today when we are faced with some tough decisions. I will not fear what lies ahead because God has already seen tomorrow.

I will keep everyone posted as we find out for sure what the plan of action will be.

Here is mommy and Sweet T hanging out in our room yesterday.

Teryn loves Elmo and has an Elmo balloon that she loves to track. GG came by yesterday and brought her two talking Elmos and an elephant since elephants always made Daddy feel better when he was little. Teryn loves to look at the Elmos but isn't so sure about the noises yet. She also brought mommy an elephant necklace to wear for Teryn.

She has been in a pretty good mood except last night she cried from 9:30 until 12:30 because she was hungry. Today she is still sleeping pretty late.

*****Update.....radiology is unable to get her in today so we will have to wait another day.

5 Months

Our sweet baby girl is 5 months old!!!! So hard to believe. Here are a couple of pictures to mark this occasion.

On Saturday I decided that time was running out to get my furniture put back in place in my classroom. I enlisted James' help and we packed up all of Teryn's equipment and headed up there. Of course I was a little distracted and had to keep taking breaks to love on my girl.

Teryn finally took a good nap. We made a very cushy and comfy nap area for her on my classroom floor.

My hubby is so sweet. He cleaned on top of the cabinet shelves because he knows I can't reach up there very well to do it myself being that I am vertically challenged : )

Here are a few snapshots of Teryn the past week.

Hanging out in her swing and tracking her toys.

Trying so hard to get her thumb in her mouth just the way she wants it.

Working on that thumb again. Every now and then she will get it in just right.

Looking so cute after her bath.

Teryn meets Granny Judy

A few weeks ago there was a celebration for my grandmother's 80th birthday. We were so sad that we weren't able to be there. We weren't quite ready for a road trip yet and we were still keeping our public exposure pretty limited. As I will be returning to work in just a few weeks we knew that it would be harder to make time to make the trip to see Granny Judy. It is difficult for her to travel now since she is on breathing treatments and has much more trouble getting around. This is so hard for me to see because she was always so spunky and active when I was growing up. She would drive my brother and I everywhere, get on the floor and play, and was always ready to go somewhere. She has really been wanting to see Teryn and sleeps with a picture of her every night. James and I made the decision to attempt the trip. We wanted Granny to get to see Teryn before she got any bigger since she is growing so fast.

We decided to stay in a hotel this trip since we wanted to stay in one place and have everyone come to us. We figured this would be better as to not overstimulate Teryn too much. We chose a brand new hotel that had excellent accommodations. James and I wanted to stay another night just for the comfy bed. Teryn's porta-crib even matched the linens, drapes, and carpet in the room.

We got up very early and left the house around 8am to take Xavier to board at the vet. Since we couldn't check in to the hotel until 3, we went straight to Granny's house when we got in town. She has called us several times that morning wanting to know how close we were. She was so excited to see Teryn. (I am sure she was glad to see James and me also.)

Here are the first pictures ever of Granny and Teryn:

We had lunch with Uncle Freddy and Aunt Martha. It was delicious home cooking with the best fried pickles and sweet tea I have ever had. Granny didn't think she would like the fried pickles but had her first one after 80 years and loved it. Teryn thought her Great-Aunt Martha was hilarious. She just smiled and laughed at her. Here are some pictures of her big smile:

Teryn and Great-Aunt Debbie meet for the first time. Aunt Debbie worked for days and made Teryn a beautiful scrapbook. I can't wait to print some pictures and fill it.

Sabrina and Aunt Debbie at dinner.

Teryn and Ms. Kristy.

Kristy getting sweet baby snuggles.

Rick, Kristy, and Teryn.

Teryn snoozing through dinner.

Teryn and her Great-Aunt Mary.

Terry convinced James to go swimming. (It didn't take too much persuasion.)

Sabrina waited ALL day for her turn to hold Teryn.

Teryn laying on the huge comfy hotel bed.

I am so glad we made the trip and a lot of family got to see Teryn for the first time. Teryn did so well with the traveling. The only time she got really fussy was when her diaper was dirty and we were on a very long bridge and couldn't stop to change her. Other than that she was a happy camper and enjoyed her naps in the car. It is so nice to be getting out a little and doing things now. We are still extremely cautious about germs and only go places during off peak times when we are about the only ones there. Going anywhere with all of the needed equipment is also a little tricky but as she gets bigger we want her to have experiences to expand her world and learning. She needs a variety of experiences for her development. It is just going to be a balancing act with providing experiences and avoiding things that may set her back. She is teaching us and we are listening to what is best for her.

Our Week

Here is a quick snapshot of our week. There is so much more that I didn't have pictures of. For example, Teryn is smiling so much more on a regular basis now. We have been working very hard with tracking and head and trunk control. By bedtime she is exhausted. We have gotten into a bathtime routine and I believe Teryn is showing excitement when she starts anticipating the bath. When she hears her bathtime music and we start taking her clothes off she starts kicking and waving her arms in excitement. This is great since anticipitory action was an area where she scored very low. Our bathtime takes a while since we also have to clean around her gtube and change the dressing. Then I also give her a massage to help her relax and stimulate her muscles. One night this week she was so relaxed she fell asleep in the few seconds it took me to go to her room to get something I forgot.

Daddy didn't mind letting her nap on him while they waited.

We got to get out and have lunch for Aunt Cheryl's birthday. This was also a special day because it was the first time cousin Trista was able to meet Teryn. We have been waiting and limiting exposure to young children and Trista has been wanting to see Teryn so badly. This was also a great day for me because I had been missing my Trista and cousin Gavin is growing so fast we had to see him.

Trista was so excited to show off her little brother and couldn't wait to show me how she can hold him.

Uncle Lee wasn't able to join us because he has been so busy with work. We will see him soon.
Here is Aunt Cheryl with Trista and Gavin.

Teryn showing off one of her cute outfits from friend Paige.

I had been playing with Teryn on the floor. Xavier was wanting me to play with him also. I picked Teryn up to change her and when I looked down this is what I saw:

He stole Teryn's pillow.

Play Date with Paige

We were very fortunate to have a play date with our friend Paige. Ms. Roxanne had been over to visit previously but Paige wasn't able to come before as we were waiting a while before Teryn was exposed to other small children. I just realized I didn't get a picture of Roxanne and Paige together. They will just have to come over again so we can get one. Ms. Toya had not been able to visit yet so were very glad that she got to come for the visit also.

Roxanne brought over some delicious chicken casserole and potatoes. I had some guacamole from last night so we got that out and through in some sweet tea and had a feast.

Paige was having a blast watching Xavier and letting him give her kisses. Teryn was very sleepy and took a short nap with Ms. Toya.

Teryn and Ms .Toya

Here are the two girls meeting each other for the first time. Paige was very curious about all of the baby sounds Teryn made.

I love this one. It looks like they are talking to each other.

It was a wonderful visit and we can't wait to do it again.