Wednesday, June 30, 2010

Doctor appointments for the week...

We have completed most of our doctor appointments for the week!!!

On Tuesday both boys went in for round 2 of their ABRs (hearing tests). At least two ABRs need to be completed to make sure their was no mistake in the first one, regarding their hearing loss. The tests is a minimum of about an hour long and each boy needs to be asleep during the test. Both boys did very well. They slept at their appropriate time and were able to get the tests done quickly and easily. Owen's results were a little better this time around. He still has no hearing loss in his right ear. He still has hearing loss in his left ear but it looks like his hearing aid will not need quite as much amplification as they thought last time. His hearing looks pretty good, very close to passing, in the high tones and a little more of a loss in the low tones. Nathan's diagnosis is still exactly the same, profound hearing loss in both ears. Though we were hoping to get the boys fitted for hearing aids yesterday, we did not. We are now switching from the Sparks Clinic (where they have had all their ABRs so far) to the HEAR Center, so we are going to start the hearing aid process with the HEAR Center. Nothing at all against Sparks Clinic, we loved our audiologist there, but the HEAR Center is where Nathan needs to be for cochlear implants, so it just makes sense for Owen and Nathan to be there together.

There are a few prayer request I would like to mention with this process. First, we know God has an awesome journey for our boys and we want to travel the journey He has put in front of us. We also have seen him perform unbelievable miracles in the boys lives. We are praying that God would fully restore Nathan's hearing in His perfect way and timing. We are also praying this process would move a little more quickly than it appears to be right now. Every day Nathan does not hear is a day or more delay in his development, especially at this crucial learning time in his life. Here is a look at the process.
1) Failed ear screening right before leaving the hospital at the end of March
2) In April we went to the ENT and it was believed their was fluid on their ears. We were then told to wait until we went to the follow-up clinic at the end of May
3) We saw the audiologist at the newborn follow-up clinic who gave the boys their first ABR at the beginning of June and recommended we get into the ENT at Childrens
4) Late June we got in to the ENT at Childrens
5) Yesterday had our second ABR
6) Owen got an appointment at the HEAR Center for July 5th / Nathan has an appointment on August 3rd
7) Owen will probably have his hearing aids by August
7) Nathan will probably have his hearing aids by September
8) Nathan will have to wear hearing aids for 6 months though they may not work for him at all. We do pray these work well, though not likely, and they would fix Nathan's hearing loss.
9) In February /March Nathan may be able to get his surgery done, totally an educated guess there....leaving Nathan 15 to 16 months old before he will be able to start hearing.

Nathan had a follow-up appointment with his neurologist today. His doctor was so excited to see how well Nathan is doing!!! He is showing NO signs of any problems. Nathan's next appointment is in January. If Nathan is still looking as good as he is now, we are out of the woods in terms of developmental neurological issues. The neurologist is also going to check Owen at this time. He has not shown any signs but a preemie can suffer from problems, even if hey have not had a bad MRI.

The boys have an appointment with their in-home PT, Kristie, tomorrow. I am looking forward to the appointment because I feel the boys have grown in tremendous ways over the past couple of weeks. I can't wait for her to see them!!

No more doctor appointments this week!!! I will be sure to post on Owen's HEAR Center appointment on Monday. Also, we are asking people to pray for Nathan's hearing process specifically on Thursday evening, July 9th, at 7 p.m. We want a time where hundreds of people are lifting up Nathan's hearing to the Lord.

Thanks for all your love, support and prayers. We appreciate them more than you know. We are so blessed that God has chosen us to walk on this beautiful journey with our boys. We truly praise Him for this blessing.

Botanical Gardens

For something fun to do for my birthday we decided to take a trip to the botanical gardens. Logan had fun leading the way and we all enjoyed the beautiful surroundings. It was a great outing for Nathan and Owen since they got to get out of the house but did not have to be around people. We then stopped at Sonic for some yummy shakes and Preston grilled tilapia and corn for dinner. It was a great day.

Fun things to do while Daddy was in NY

Preston went to NY this past Thursday early morning through late Sunday night. Logan and I tried to find some fun things to do while Daddy was away. With Nathan and Owen still not getting out around people, we had to be creative and find some fun things to do at home. We did get a little time out for their photo session and Logan and I slipped off to the Homewood pool with Sarah and Gracie.

Something Logan has enjoyed doing for years is watching short Sesame Street videos on-line. One of his favorites is Elmo's bus. I had a really big box from some diapers I had ordered and Logan asked if we could turn it into Elmo's bus. I cut out the windows and we painted the bus yellow. Logan then wrote his name, painted the headlights white, wrote the number 8, colored a grill on the front of the bus, lines around the windshield and then brake lights on the back. He is very proud of his bus and has spent lots of time playing in it.
Logan loves to put the marker tips on his figures to make them long. He wants to be like Milo in Max Lucado's Hermie and Friends.
A little later in the day, Nathan was laying on the couch, and Logan came and put his feet right next to his. I thought it was too cute.

Memommy comes for a visit

Preston's grandmother, aka, Memommy flew in from Nebraska last Monday afternoon. We all had a great time visiting with her. Logan has always been very fond of her and was very excited about the visit.

Friday, June 25, 2010

Photo Session

Yesterday we had our photo session with Karie Mitchell. Months ago I wanted to get the boys photographed. I wanted a really nice photo to keep forever. I set my appointment far in advance, hoping Owen would be off his oxygen. The big day finally came!!!! My Mom was able to cut out of work a little early to help me with the boys. Having an extra set of hands there made a huge difference!!!

Karie did a wonderful job with all three boys. She spent about 3 1/2 hours with us capturing the boys while they were looking at her, playing, happy, sad, etc. Her work is incredible. Owen is doing very well on his oxygen so I took it off him for every photo. We would take breaks in the mean time and I would give him some oxygen.

To check out the pictures go to Go to client proofing and Janelle Hite.

Monday, June 21, 2010

Fun Father's Day

Preston and Logan went to the Baron's games yesterday for Father's Day. They had a great time together!!! They were even able to run the bases after the game. They both got some ice cream, and Logan wore some on his shirt home!!

Father's Day visit from Oma and PaPa

Oma and PaPa, my parents, stopped by for a short visit yesterday. Logan was sleeping when they were here but they had a good time visiting with Nathan and Owen.

Awesome sprinkler

Logan got this really cool sprinkler from my sister and brother-in-law for his birthday. None of our air pumps fit, so Preston spent a little over an hour blowing this globe sprinkler up with his mouth.
Logan is anticipating his new sprinkler being turned on!!
Here it is!!!Logan is now enjoying his one minute of this awesome sprinkler. After one minute the hoses on the inside ripped out and filled with water. It no longer shot water out. Unfortunately we think there was something in our hose that clogged it. Moral of the story, if your hose sits for a while run lots of water through it first before hooking it up to such a fun toy. Logan was very sad his sprinkler stopped working.

Wednesday, June 16, 2010

Appointments for the day

There are some very tired boys at the Hite house tonight. We left our house at 10:00 am to start our day of appointments, okay only two but they lasted all day. We left the Children's parking deck at 4:00 this afternoon. We had to go downtown to pick up Nathan and Owen's ABR results, head to Brookwood for therapy at 11:00 and then back downtown to Children's for a 1:00 appointment. I packed Preston and I a lunch, so we ate in the car while driving between hospitals. I have to say I am SO THANKFUL Preston is able to go with me to all these appointments right now. I honestly don't know how it would make it to the door with both little guys, oxygen tank, 2 monitors and a diaper bag. I will say driving between Brookwood and Children's with both little guys in the car, having them with us at appointments is so much better than driving between hospitals to visit them in NICU. I will take a day of appointments any day.

Owen has his weekly appointment with Sally. He keeps his left hand in a fist a good bit. She worked on getting his hand loose. We really did notice a difference in his hand today. She showed us a few more stretches to do with him because his left side is feeling a little tight. We are so grateful or all the specialist who see the boys and know how to find and correct things with the boys that we did not even know existed.

We had our appointment at the ENT practice. The doctor was great and we learned some but still know there is a lot ahead of us and a lot we don't know, because we just don't know the questions to ask. No fluid on Owen's ears and probably no fluid on Nathan's. The doctor thinks he has more of a white substance. He worked hard on cleaning out both boys ears but was not able to get everything out of Nathan's right ear. Let's just say, neither boy was excited with what he was doing. The boys will continue with their scheduled ABR at the Sparks clinic at the end of the month, but are also getting appointments scheduled at the HEAR Center. After this next test at Sparks clinic, they will then transfer to the HEAR center. The HEAR Center is where Owen will get his hearing aids and therapy and Nathan will get all his cochlear implant therapy, mapping of the implant, etc. Nathan is also getting an appointment scheduled with Dr. Wooly, who does all the cochlear implant surgeries.

We looked at our calendar and are so excited. No appointments until next Wednesday!!!

Monday, June 14, 2010

My two smallest men

All four men at the Hite house are doing well. Logan really enjoyed his afternoon at the pool yesterday. I am glad he is getting over his fear of the water.

The little guys turn 7 months today!! It is so hard to believe they are getting so old. It is exciting to see how far they have come. Nathan is really catching up to Owen in terms of size. They are also getting strong!!!
Owen had his pulmonologist appointment today. He will still remain on oxygen at least until his next appointment, September 13th. He is doing really well but they wanted to keep him on the oxygen a little longer, just at half the strength he is on now. He is now on 1/8 of a liter. I am pretty sure it can't get any lower than 1/8 liter. Owen will also be able to get off his medicine in 2 weeks!!!

Our next big appointment is the ENT on Wednesday. I will give an update after that appointment.

Friday, June 11, 2010

KidLife Week

Logan had the best time at Dawson's KidLife week. He was so excited every day when he returned home and was able to recall lots of the exciting things he did or saw. A few of his big exciting moments were when Jesus came to the Sanctuary and talked to his disciples, eating his snack every day, worship (I will get to that later), the dogs that could catch frisbees and that Ms Sarah was his teacher.

I think am pretty sure Logan now wants to be a worship leader. Multiple times every day he goes to his "stage" to lead worship. He gets the guitar he made at KidLife and gets Preston and I to come into his room, which he is now calling "the service". Since we go to the service in the sanctuary he thinks the name of the room is the service. He then tells us what hand motions we need to do and when. He then sings. Last night he did not want to be called Logan. He let us know his name was, Mr. Jeff.
Wednesday night was KidLife family night. We spent lots of time with our friends Kim, Ian and their daughter. Logan had a great time playing with CE and sitting by her in worship. Near the end of the service the preschool children went up to the front to do a little song. Logan went up there but was so interested in watching Mr. Jeff that he stared at him most of the time and did not turn around.Here is a picture of Logan and 3 of his friends in his class.

Thursday, June 10, 2010

Pray with Us

I would like to ask all of you to join us in prayer for Nathan's hearing. As you know we found out at the beginning of the week that Nathan has profound hearing loss. We know our God can do amazing miracles, as we have seen so many times in the boys lives. We also know He has a perfect plan with a perfect journey for Nathan. We would like you to pray for God to restore Nathan's hearing.

Tuesday, June 8, 2010

I wish I would have known...

I find myself saying often, "I wish I would have known". It occurred to me that if I blogged about some of the things I wish I had known about this entire process it might just help someone else out there deal with a similar situation. (Please feel free to forward this to any friends you think any of this knowledge may help).

I wish I would have known...
1) that medicine is not guaranteed to stop labor. I always thought if I went in to preterm labor the doctors would be able to stop it. It never crossed my mind they would not be able to. (We knew babies were born preterm, but we also thought doctors would be able to stop labor.)
2) not to just take the word of the insurance company that tells you that you will be covered over the phone, before you are able to review the policy. (The problem was not that I got pregnant before switching insurance, it was that we had to use fertility treatment to get pregnant.) Get EVERYTHING in writing before canceling an old policy. (Funny how they can pull recordings for their benefit but not the benefit of the customer.) Wow, this would have changed our life over the past several months. In our case, we were a couple months into our new insurance before it was ever mentioned that fertility treatment excluded the babies... so if you have Blue Cross, NEVER let it go.
3) It is EXTREMELY EXPENSIVE to bury a child. I would have preferred to have Mia and a new Lexus SUV, but unfortunately I have neither.
4) If your child is born under 2 1/2 pounds they automatically qualify for SSI. It is important to call immediately so your several million dollar hospital bill will be covered. There is nothing on the SSI website about underweight babies, so just ask the social worker in the NICU for the contact information. We did not find out about SSI until December and spent months and months getting the boys' SSI retroactive for their November bill, which was about 1 million dollars.
5) When you have a major hospitalization, bills come from LOTS of separate medical practices - not just the hospital. It is really confusing, and hard to keep track of who has been paid what. It seems wrong that the people dealing with the most emotional trauma also have to deal with the really confusing money and paper trail.
6) Follow-up appointments after a major hospitalization can take a very long time. It's not over when you get out of the hospital - not by a long shot.
7) When you're going through a prolonged period of challenge, sometimes your friends really want to move on, as if life is totally back to normal. It's easy to feel left behind.
8) This whole experience changes your perspective on what concerns really are important, and what things are really just petty in comparison. But, of course, not everyone has gone through the same changed perspective.
9) An entirely new vocabulary: necrotizing enterocolitis, creatinine, hyperal, PO, SPO2, Cafcit, bagging, periventricular leukomalacia, physiatrist, penrose drain, broncho pulmonary dysplasia, ductus arteriosus, retinopathy of prematurity and many more.
10) In your cell phone there will be more contacts for doctors, clinics and medical supply companies than friends and family.

The beauty that comes from an intense experience:
1) Despite everything that seems to be so out of control… God is still perfect and He provides His peace in ways that surpass all understanding.
2) Long lasting friendships are built with people who never would have crossed your path (NICU families, staff, therapists, doctors, etc).
3) We have been immensely blessed with such wonderful children.

Monday, June 7, 2010

Just another manic Monday...

Today our cd from Lindsey Culver came so I am posting some more photos of the boys. Preston and I really enjoyed looking through all of them. We are so blessed with such wonderful boys.

A special thanks to my husband for being so wonderful. Last night I got really sick and he put in a lot of extra effort taking care of the boys. Thankfully I am already feeling much better and hope to be 100% tomorrow.

Today Nathan had his ABR, hearing screening. Since I was sick I was not able to go with Preston. We really appreciate his Mom taking the morning to go with him to the appointment. Owen also went to the appointment because we thought he was going to get fit for his hearing aid. It turns out he needs to have one more ABR before they can fit him. So, he will have another one scheduled in the next week or two. Okay, back to Nathan. The audiologist discovered that Nathan has profound hearing loss in his ears. He too will have another ABR and will be followed by several ENT appointments. Nathan will also have cochlear implants put in this winter / spring. We are thankful for such wonderful technology that will correct his hearing on so many levels.

Sunday, June 6, 2010

Our week in review

Nathan and Owen are now wearing 0-3 month clothing and are quickly outgrowing this size too. I haven't weighed them much lately but I would guess Nathan is about to tip the scales on 10 pounds and Owen at 11 pounds. The boys have outgrown their newborn diapers and are now in size 1. That is a huge progression from 1/2 cotton ball, cotton ball, preemie x-small, preemie small, newborn and now size 1!! Both little guys are smiling a lot and are talking too. They love it when we talk and read to them. They are getting better playing with their hands and not just batting at things.

Logan had a good week. Thursday morning his friends, John and Maddie came over and brought their Mom, Miss Margaret. We went on a nice walk around the neighborhood and Logan was able to see all the garage doors. Also, on Thursday he was able to go to McWane Center and see Mr. Potato Head. He had a great time playing.

Yesterday, Saturday, Preston was able to go to his cousin, Hannah's wedding in Selma. He had a great time with family.

Tuesday, June 1, 2010

Summer is here...

We are starting to settle in our summer routine, though every week is going to be a little different.

Logan got a sandbox and he loves playing in it. We have it on our deck so if it rains he can still play in it.

We hit the pool for the first time with Russ and plan on many more return trips, including a few at the end of the week of the weather allows. Logan is not a big fan of the water but he is starting to like it a little more. I hope after his swimming lessons, the first week of July, that he will really take off.

Our friends, Jennifer and Michael, came to visit for memorial day. We had a great cook-out and some fun times walking on the trail. Logan loves Jennifer and Michael and was really sad to see them go.

We are in the midst of several appointments. This morning our PT, Kristie, came to work with the boys. She was very pleased with their progress and gave us several more exercises to do with them. We are so glad the boys are able to see her. We can already see the difference it is making in them. Owen had a hearing test today. He has great hearing in his right ear but has a slight hearing loss in his left ear. Nathan's hearing test is next Monday. The boys will see their developmental therapist, Sally, in her office tomorrow at Brookwood. She is focusing more on Owen's hips and other leg muscle stretching.