Therapy Assessment and Laughing at Daddy

It has been another busy but wonderful week at home.

Last Saturday James and I had the opportunity to actually go out to have dinner and see a movie. Teryn's honorary third set of grandparents (Mimi and Poppy W) offered to give us the night off. Since Mimi is an RN and has certifications in infant emergency care it made it a little easier to agree. It was tough to leave the house. I hovered and procrastinated until they had to push us out the door. I knew she was in great hands. It was just tough to leave her since I have been with her 24 hours a day since we got home.

Teryn had a good time with Mimi and Poppy getting lots of hugs and kisses and Mommy and Daddy enjoyed our night out.

Earlier this week the therapy team came to do preliminary assessments. As I suspected, Teryn has delays to some degree in all areas. Some of them, however, are because of limitations while she was in the hospital. For example, she has a strong preference for the right side. I believe this is because she had to spend over a month laying on her side for the majority of the time because of complications with her gtube. She is also a little behind with her head control but again I believe this can be attributed to her mobility limitations in the hospital. She has already improved since being home. Focus and tracking have also been very difficult but she has really shown improvements this week. The therapist who came today said she was impressed with the difference she saw just since the beginning of the week. Over the past week she has also been making eye contact and smiling much more, things she did rarely before. Last night she was sitting with her Daddy and he was making silly noises. She was holding focus for a long time and even tried laughing!!!!! I was so excited when I saw her. I grabbed the camera and took several videos of it. I uploaded 2 of them below. This was such an amazing milestone for her. If you know me then you know that one of my coping mechanisms is to try to find the positive in situations. I was talking with my mom and I realized that if Teryn had reached some of her milestones on time then we may not have seen them. However, now she is home and we get to experience everything with her. I am so happy that she laughed at her silly Dad first and not one of the nurses. It may have been later than "normal" but at least we got to treasure that moment on our own terms.

Teryn is by far the most amazing little girl in the world. We are so proud of the progress she makes everyday which is much more now that she is at home. We cannot wait to see all of the odds she is going to defy. We give God all of the praise and all of the glory for his miracles in our family.

Here are videos of Teryn and her silly Daddy. In the second one you can also hear her secretions come up and then she swallows them!!!! Just another miracle from our girl.

4 Months Old Today

Teryn is 4 months old today!!!!

As is her nature she slept in late this morning. This is a trait that she gets from her mommy and daddy. Even though she sleeps late we are no longer afforded that luxury since we still have tasks to complete before she wakes up.

After many hours since her last diaper change I decided it was time to go in and at least give her a fresh one even if she slept through it. She woke up but was still drowsy and sporting her morning mowhawk.

We got dressed and waited on Aunt Lisa to come for her visit. When Aunt Lisa got here we were both sitting on the floor playing with Teryn when I looked down and noticed that she had one of her toys in her mouth. This is a first for her! I was so excited I had to grab the camera. This is one of the milestones we have been waiting for. She has also learned to turn from her back to her right side. Guess it is time to keep an even closer watchful eye on this moving and growing girl.

As always Xavier assumed that Aunt Lisa's only reason for visiting was to see him so he hogged her every minute he could.

At one of my baby showers my dear friends (Gloria, Jenn, and Lisa) gave me this shirt for Teryn. She finally got to wear it today for the visit. We will have to break it out again when the other 2 finally get to visit.

Aunt Lisa was so sweet to bring me lunch and kept me entertained with funny youtube videos while Teryn was taking a nap. Oh! She also brought me desert from one of our favorite restaurants. So glad we got to visit with you today Aunt Lisa!

On an additional note, Teryn has a new cousin as of today. Miss Karlianna was born this afternoon exactly 4 months after Teryn. Looking forward to some fun family gatherings in the future.

Teryn's Birthday

I just realized that I never posted any of Teryn's birth pictures. Here are a few that were taken minutes after she was born. Right before we knew how much our world was really going to be changed.

4 Month Well Baby Visit

Teryn is 4 months old today!!!!!! I am still waiting on her to wake up so I can get pictures to document the day. This is her first "birthday' outside of the hospital. We are looking forward to a visit from Aunt Lisa today.

Yesterday we had our 4 month well baby visit with the pediatrician. Teryn in 12 pounds 10 ounces and 24 inches long. The doctor is very pleased with how well she looks and is doing. One little hiccup.....she has a minor ear infection in her right ear. He said she would not have been showing any symptoms yet because it was minor and just beginning. We started a round of antibiotics for it last night. Ear infections are something we know are likely to be common for Teryn since her cleft palate makes her extremely susceptible to having fluid build up.
Teryn also received her 4 month immunizations yesterday and was a very brave little girl. My mom and I were both amazed at how well she handled the 4 shots. She puckered her pouty lip and whimpered a little each time but that was it. We were joking with the nurses and telling them Teryn is probably thinking, "You have no idea what I have been through. This is nothing. Is that all you've got?"
We will have to go back to the hospital next week to have lab work to check for the blood level of her anti-seizure medicine. Then we will be back to the pediatrician in 3 weeks to check her ear.
By the time we left we were very hungry. It was way past lunch time and the restaurant was practically empty so we decided to have lunch at Olive Garden. What a treat to be out of the house AND eat yummy food. Teryn was absolutely exhausted from having her nap times interrupted and slept the majority of the rest of the day.
Looking forward to a more relaxing day to day and working on a Father's day surprise for James.

Weekend, Update, and Tummy Time

We had a nice relaxing weekend at home. The best part was having James with us for two whole days. He has been working so much lately to make up for the time he missed while in Miami. We were sad to have to miss Granny's 80th birthday celebration with the rest of the family. It was 4 hours away and we just didn't feel comfortable with Teryn taking such a long trip yet, especially in light of last week's events. However, we hope to plan a visit with Teryn and her Great-Granny Judy sometime before the end of summer.

Teryn has been doing very well and we have not had any more episodes. Praise God!!!! We are still working on getting the Neurology referral taken care of so we can get in and see them before the end of the month. Teryn will need to have regular visits with them as part of managing her seizures. She also has to have regular CT scans and MRI's to make sure the hydrocephalus is stable. So far every one she has had has been stable and there hasn't been any increase in pressure or fluid.

We have a scheduled date for her therapy assessment and should begin therapy very soon. I am continuing to do things that the hospital therapists taught me so that she is at least getting something every day. We have been trying to do a lot of tummy time since she had to miss so much after her surgeries. For a while it was too painful to be on her tummy because of the incisions. Now she is healed we are trying to make up for some lost time. She is really getting good with head control and I am going to post a video of her practicing (with a little "help" from Xavier.)

James got to have a little more practice with caring for Teryn this weekend. He was changing her diaper and called me from the other room because he said he was "having a hard time with this one." When I came in I saw that he was putting it on backwards. I was laughing so much I had to take a picture.

A few snuggles with Mommy.

I just can't stop giving her kisses.

The ducks made their daily appearance in our yard with their new babies. We love it when they stop by for a snack.

Here are two videos of Teryn practicing her tummy time. The first one is very short as I had to rescue her from her big brother. He really wanted her to play with him and was trying to give her his toy. Once he started pushing it on her head I had to stop filming and give him a little attention.

Teryn's First Party

Teryn attended her first party on Saturday. It was the start of summer First Grade (and friends of first grade) Party. I was getting a little cabin fever and couldn't resist the opportunity to see my wonderful friends. I miss them all so much. Some of them I had not seen since Christmas so it was a loooong overdue reunion. We surprised them by stopping in for a few minutes to say hello. It was great that Teryn got to meet some of her biggest fans. So many women that have been praying for her as well as leading other efforts to help support us through our journey.

Here she is with Ms. Suzie.

With Ms. Dee

With Ms. Roxanne

With Ms. Jennifer (who, by the way, did an AMAZING job finishing up the school year with my class)

With Ms. Kelli

Talking to GG

With Ms.Leanne and Ms. Amber (Leanne was just a 'little" excited to see Teryn)

With Ms. Laura

We were so happy to see everyone. It was nice to have a little outing.

Scary day

Yesterday we had a meeting with our therapy coordinator. She came over for me to fill out all of the paperwork and get input on what we would like for Teryn. I was sitting on the floor next to Teryn as she was taking a nap. As is my habit, I was constantly looking at her to make sure she was okay. I happened to look down at her and noticed that her lips were turning blue so I rubbed her chest which is usually enough stimulation to get her breathing again. She was not responding at all so I picked her up and my mom brought me the suction machine in case she was having trouble with thick secretions in her throat. I tried suctioning and did not get anything. I began giving her vigorous stimulation for about 30 seconds (which felt like 30 minutes). In the back of my mind I was thinking we were going to have to call 911. Finally she became responsive and started breathing again. Shortly after she fell asleep and took a 5 hour nap. It was extremely scary for my mom and me both. I was thinking that maybe she had let her tongue fall back and could not move it forward. In hindsight I realized maybe I should have checked her tongue.

James came home and I let him know about our scary afternoon. We had dinner and Teryn woke just as we were finishing up. We decided to go ahead and give her a bath and get her nightly meds ready. She was sitting very happy and alert with me on the couch while daddy was cleaning up. We got her undressed while she kicked and cooed and then took her to the tub. Within a minute of putting her in the tub I noticed she got very still. I turned her face toward me and noticed she was turning blue again. We immediately took her out and began giving vigorous stimulation again. I remembered my thoughts about her tongue from earlier in the day and tried to check her tongue but her jaw was clenched down tight. I then realized she was probably having a seizure. After about 30-45 seconds again this time, she began breathing and becoming more responsive. We decided to give up the bath and call the pediatrician. I spoke with the nurse and she agreed it was probably seizure activity. Teryn was due for her anti-seizure meds in 15 minutes so the nurse said to go ahead and give it to her and that more than likely she would be okay the rest of the night, if we saw anything else suspicious then to call EMS or go to the hospital.
Well needless to say it was a very sleepless night for me. Every time I fell asleep I would immediately wake and stare at her breathing patterns to make sure she was okay. Interestingly, her apnea monitor did not go off yesterday during her first episode. I think maybe I caught her before the 20 second delay on the monitor and then it picked up my moving her as breathing. The second time she was in the bath and disconnected from the monitor. So, I was not putting my trust in the monitor at all last night. I used the mommy monitor.
This morning I called the peds office as soon as it opened and they asked us to come in so the doctor could do a follow up and check her out. He said she was looking great. She is now 12 pounds 7 ounces. That is up a pound and a half in about a week and a half so we were thinking maybe her weight gain has caused the blood level of her meds to go down. He wrote us a prescription for an emergency suppository(very expensive) if she has a seizure lasting more than a minute and sent us to the hospital to have blood work done. He also said to feel free to call 911 if she has this type of seizure again just in case it lasts longer. Unfortunately now we know what her seizures look like.
The tech at the hospital was having a hard time finding a vein to get blood since all of her veins were used up from IVs. She sent us upstairs to the pediatrics unit and they were able to get what they needed after a loooong time. They ended up having to use a finger prick instead of a vein.
The pediatrician called me this afternoon and her anti-seizure meds were still technically in the therapeutic range but had room to increase. We will begin with an increased dosage tonight. We should have a completed referral to a neurologist soon. Of course, there are no ped neurologists here in town so we will have to travel, but oh well.
We are home and resting now. Please continue to pray for our Sweet T that issues will be resolved and she can overcome these types of episodes.

Aunt Lisa

Yay!!! Aunt Lisa was finally finished taking her antibiotic and got to come and visit. We had been missing her so much. Thankfully the summer is here and we are hoping to get to see her and Aunt Jenn a lot more. We have to make up for some lost time.

Thank you Aunt Lisa for taking such good care of Xavier while we were away. He loves visiting at your house, playing with Andrew and Tinsley, and of course becoming the King of the house.

Thank you also to our neighbors who took care of Xavier while Aunt Lisa was out of town. And of course thank you to Aunt Jenn and Uncle Johnny who let Xavier stay with them while Aunt Lisa was out of town again. (Aunt Lisa is having too much fun in her worldy travels : )

Visit to Grandma and Grandaddy's

In an effort to limit Teryn's exposure to crowds and germs, we have been getting a little cabin fever. Daddy has been working a lot to make up for time off and Teryn and I have been stuck in the house. So, yesterday grandma came and got us and took us to their house to hang out for the afternoon and have dinner. It was very nice to get out and have a change of scenery. I can't take her anywhere on my own since someone has to be in the back seat to monitor her. We were so glad Grandma rescued us for the day.

Teryn and Mommy hanging out in Grandaddy's "man room."

Grandma and Teryn. I am surprised Teryn is awake here since she usually falls asleep when grandma holds her. I didn't get a picture but grandma and grandaddy's neighbor, Mrs. Cathy came over to see Teryn. She along with her friends and family have been prating for Teryn. It was very nice to visit with her.

In her bouncy seat.

Relaxing with all of her equipment nearby. We figured out a fairly easy way to manage everything. We just put everything in her car seat and hung her feeding bag from the handle. Worked pretty well and was easily transportable.

Getting some love from Grandaddy before we had to go home.

Talking with Grandma.

The cutest chipmunk cheeks ever.

Crazy hair. No matter what, her hair always sticks up in the back. Guess it is time to put a "Bam-Bam" bow in it. Those of you who watched the Flintstones know what I mean.

It was a wonderful visit and we were so glad to get out. We are hoping to get some limited exposure to the outside soon.

HOME sweet HOME

Whew!!!! What an incredibly busy week. There has barely been a free moment but that is okay. We are more than willing to take on the tasks. We made it home last Saturday evening. Of course our arrival could not be completely uneventful. About an hour away from home I received a call from my dad saying that our air conditioner was not working. After a small moment of panic at the thought of taking our baby girl into a 90 degree house, we had a repairman on the way. Thank God for this company willing to come out Saturday night of Memorial Day weekend.

I have uploaded a few pictures of the events throughout the week.

Teryn dressed in her 'going-home outfit.' She slept right through me changing her. We arrived at the hospital at 6am to prepare everything, sign paperwork, and meet the transport team.

Buckled into her car seat in the ambulance. She did sooooo great considering it was an 11+ hour drive. The only time she got really fussy was when the vibration stopped because we were stuck in stand still traffic for 45 minutes.

I got out her seahorse and she was pretty happy again.

We made it home around 5:45. Even though daddy left after us, he made it home before us. Daddy, Grandma, and Grandaddy were there waiting on us. Teryn got to snuggle with Grandma after over 2 months away.

We are SO happy to be home together. We got her apnea monitor, feeding pump, and suction machine set up and then took a few minutes to relax as we waited on the house to cool back down.

The next morning we had her first bath at home. She loved it as always.

Watching Daddy put together one of her toys. She is a good supervisor.

Visiting with Roxanne.

Hanging out with Daddy and Xavier.

First car ride. Heading to the pediatrician's office. He said that she looks great. We will be back in 2 weeks for her 4 month well baby appointment. We were concerned about the germs from the sick kiddos in the waiting room so we stayed in the car and had them call and tell us when the room was ready.

Teryn and Grandma must have planned their outfits for the day because they matched.

Guard dog on duty.

Beautiful flowers from our church family.

After bath time.

Aunt Ilire and Ms. Suni came to visit.

Uncle Lee and Aunt Cheryl also came for a visit. Cousin Trista can't wait to come and visit. Hopefully next week we can have her over. We have to introduce Teryn to germs slowly, so we have had to delay any visits from anyone under 12.

Guard dog again.

Sleeping soundly. She has been sleeping so well since being at home. She sleeps almost 12 hours at night. I change her diaper when I change her food and she usually doesn't even wake up. Sometimes she will wake up and fuss for about 20 minutes but other than that she gets a full night sleep. Mommy and Daddy are getting a little more sleep now as well.

Even though we can't go to church yet, we decided to wear a church dress on Sunday anyway. Here she is looking so pretty with a blanket from her Great Granny Judy.

With the special afghan that Great Grandma (Nanny) made her.

Xavier takes his watch time seriously. He looks a little better since I gave him a little grooming. The haircut is a little choppy but he needed some serious work after me being gone for 8 weeks.

We are so thankful to be home. We are so appreciative to everyone for all that has been done for us through our rough days. We still have some challenges ahead of us but we have seen how strong our family is and that we have an abundance of support. Most importantly we have our Lord with us every step in the blessed life he has given us.