Fun With Fam

We were fortunate to spend today with family here in our home. Papa, Aunt Gigi, Uncle Matt & Uncle Chuck have all been in town to visit. Brian and Papa have been working on much needed chores around our home which have been neglected while we've been in the hospital. Thank goodness Aunt Gigi has been here to help me take care of Drake & Kennedy. Both babies enjoy spending time with her as much as she adores them.

Drake's nurse is with us during the days Monday - Friday and she will be greatly missed over the weekend. I am so very busy dealing with insurance companies and additional disability offices; I am able to spend hours on the phone needed to follow up and keep my advocation efforts moving forward.

Drake seems to be adjusting well to his new G-button for his feeding tube, and yes it is much easier on us as well to connect his feeding tube. We can tell he is feeling less pain as he is less fussy when we are hooking feeds up. We have been working with him daily on his supplemental oxygen needs. Unfortunately, he is still requiring his oxygen support because his saturation levels are just not high enough yet to remove it completely.

Pictures:
1) Kennedy & Papa
2) D&K
3) D&K helping cook dinner
4) Drake

Tylenol

Today we are thankful to the makers of Children's Tylenol. Following his switch from the G-Tube to the Mickey Button, Drake has required Tylenol every 4 hours for 24 hours. We were pleased to find out that Drake really likes Tylenol and is willing to take it by mouth for each dose.

I got out for a much needed mommy outing today while Drake's nurse was here with him and Brian was taking care of Kennedy. I wasn't gone for very long but I did get my hair cut and I had peace of mind knowing that both babies were in good hands.

Kennedy did a much better job taking her whole bottle for daddy today! She also enjoyed some snuggle time with her Papa as well.

Pictures:

1) Drake looking outside
2) Kennedy with Papa

Mickey

Not the mouse this time...Drake was able to get his G-Button today which is also known as a Mickey Button. This is going to be a huge improvement from the tube he has had in place. The button is much less cumbersome and easily hidden under his clothes when it is not being used for his feeds. Our goal is for this to be a helpful device for the short term and help him as he works to reach full feeds.

Today was a long day for all of us. Drake's nurse arrived early and we packed the car with all of the supplies we gathered last night. We probably had way too many items in tow for one little baby boy, but it's better to have extra than be short on anything. We headed to Dallas at 8am which put us at the surgeon's office early. After he examined Drake, he scheduled his Mickey Button for a couple of hours later to prevent us from having to come back on another day. Drake, his nurse & I headed down the road to check in at Medical City. Drake was awesome the entire time! For the next 24 hours he will need Tylenol every 4 hours and the area around his button will need to be cleaned as well as the button rotated. He is tolerating everything well and he is resting from his long day.

Kennedy seems to have demanded attention all day which prevented daddy from working on projects around the house. Luckily, he was able to get things accomplished once we returned home around 4 this afternoon. Apparently she did not do a stellar job with her bottles for her dad today, but she has completed them nicely since Drake and I returned. I think she missed us.

Pictures:
1) Kennedy
2) Drake
3) Drake
4) Kennedy

Preparation

Tomorrow is Drake's 1st appointment in Dallas at 11am; therefore, tonight involves the preparation. We will need: his 8:00 feeding and is 12:00 feeding with bottles and feeding bags, diapers, wipes, a cooler with cold packs for the 12:00 feeding, his kangaroo pump, portable oxygen tank and backup, blankets, a bottle warmer, and his paperwork. His nurse will be arriving early so that she can accompany us on our voyage, and we plan to head out at 8am to give us plenty of time.

Tomorrow will be a big day for Kennedy, too. She will have her 1st daddy/daughter day and her Papa will be here to help as well. I know she will have a wonderful day and she is going to eat up all of the extra attention.

Pictures:
1) Drake
2) Drake
3) Kennedy
4) Kennedy

Dinner

What an unexpected surprise! One of our sweet neighbors brought by a dinner for us tonight. It was a nice treat for us not to have to prepare a meal and the best part was the clean up.

We have a busy week ahead. Brian's dad will be in town tomorrow and he will be staying with us through the weekend. His sister, her husband and Brian's brother will be in town joining the party on Thursday. We should hear back any day now about when their synagis shots will be in which are due. Drake has a follow up with his surgeon in Dallas on Wednesday and he may be ready for his g-button (fingers crossed!).

Pictures:
1) Kennedy
2) Kennedy
3) Drake
4) Drake

Nursery Transition

As many times as we have switched nurseries (E to B to F to Special Care 6 to Special Care 19 to H), you would expect us to be old pros by now. How could we have known the most difficult transition would be to their own nursery? Since they came home from the hospital, they have spent their nights sleeping in their rock 'n play sleepers next to our bed. Of course, we jump up at every little noise and squeak which are usually just the result of a little baby stretching. I'm told these are simply "normal" baby noises. It's hard to believe we are finally experiencing anything that is normal.

Last night, while fully equipped with a baby video monitor, Drake's hospital monitor and Kennedy's apnea monitor that we purchased (yes, we are that paranoid), they slept in their own room. It helps that their room is only about 4 feet from our bedroom. I had Brian check and double check the video monitor because I thought it wasn't working, but both Drake and Kennedy were soundly sleeping and the monitor was fine. We both kept getting up and rushing into their room to check on them throughout the night. This adjustment will take some time, but I feel like our first night was a success.

Their bedding and room has come together perfectly! Since I was on full bed rest beginning at 19 weeks, I did my shopping online. I was able to find girl bedding that I liked and boy bedding that I liked, but nothing that would go together. That's when I developed plan B. I searched the Internet for fabrics that I liked and then shared my vision with my dear friends mother who brought it all to life. Everything turned out absolutely perfect, just as I had imagined it all those months ago.

Pictures:
1) Drake
2) Kennedy's crib
3) Drake's blanket
4) Glider
5) Nursery
6) Kennedy's blanket
7) Kennedy
8) Drake's crib
9) Changing table/dresser

5 Months Old!

Yesterday, November 23rd, our sweet babies turned 5 months old! We're still wearing newborn clothes, but in time we will be ready to move up to the next size. My, oh my, how they have grown over these past 5 months!

Thursday night after my mom left with the family, both babies decided to fuss at the same time and Brian said, "Can your mom come back tonight?" We seriously do miss Gran around here and we are looking forward to her next visit. She also provides me with a dose of sanity to prevent cabin fever when she watches the babies so that I can go for a walk in the fresh air or run to the grocery store.

Since it is the weekend, it is just our little family of four here at the house. Drake's nurse is here Monday - Friday from 9-5. I am thankful Brian has been here to help take care of Drake and Kennedy.

Pictures:
1) Kennedy 5 months ago
2) Kennedy today
3) A diaper from 5 months ago and one from now
4) Drake 5 months ago
5) Drake with Daddy today

Auntie's Visit

Brian's sister, Teresa, was able to come visit today. This was her first time to see her niece and nephew since July! She said that she is amazed at how far they have come, but she said they are smaller than she thought they would be. It was wonderful being able to visit with her and we look forward to when they are able to meet their cousin, Hannah, who will turn 9 next week. As badly as she would like to meet her new baby cousins, she has shown understanding beyond her years as to the fact that it is not safe at this time. Due to fact their immune system is almost non existent, non family members and those that are under the age of 16 are unfortunately highly advised not to be allowed to be around them during RSV season.

Drake has really improved on his bottle intake! His average has increased from the teens to the twenties! A steady climb is what we are looking for, and that is exactly what our little man is achieving. Kennedy has let us know that she would like to increase her feeds now; she is doing a fantastic job with her new slightly increased volume. Both Drake and Kennedy are getting stronger every day, and even though they don't like raising their heads during tummy time, they are really good at it.

Pictures:
1) Daddy & Kennedy
2) Drake
3) Mommy & Kennedy
4) Daddy & Kennedy
5) Auntie & Kennedy
6) Auntie & Drake

Thankful

Brian and I have so many things to give thanks for on this Thanksgiving day! First, we are thankful for our two miracle babies and we are thankful they are home from the hospital. We are thankful for our family, friends and strangers who have provided support for Drake and Kennedy since their early entry into this world. We are thankful to have loved ones to share our holidays and memories with each year, and we are thankful that our friends and family understand that Drake and Kennedy can not be around people just yet. We are thankful for our good friend who called this morning to let us know that our dog, Harlee, had wondered down to the marina. We were worried sick and while Gran was watching the babies we were out searching when we received the call.

We are thankful for the days ahead that we will be able to watch Drake and Kennedy grow and discover new things.

Pictures:
1) Brian & Uncle Mikey after Duck Hunting
2) Drake & Uncle Aaron
3) Kennedy & Poppy

Full Time

Being a mom to two micro-preemies is indeed a full time job. Actually, it is a full time job with overtime but without the pay; however, the rewards far exceed the work load.

Today started out packing things up to transport Drake to the pediatrician, but luckily the doctor decided he did not need to come into the office. We were scheduled to go because Drake had not gone to the bathroom (pooped) in 5 days, but he finally did! This little boy makes me more happy for normal bodily functions than I ever thought possible.

I spent the entire afternoon on various phone calls advocating for both of our babies. Drake's birthday has been entered incorrectly which is causing a domino effect of other problems along the way. Eventually they will get tired of hearing from me daily and correct the typo. The extremely expensive synagis shots that are crucial for these tiny preemies have to be approved and administered every 30 days throughout RSV season (Oct-Mar). We just found out that our portion, after insurance, is over $600 per shot per baby per month. Through my calls today, I found out that Drake's is being processed and Kennedy's was not received. Two phone calls later, I remained on the line while her paperwork was re-faxed. They are both due for these shots on the 25th so we need them as close to that date as possible to help protect their fragile immune systems.

Tomorrow Drake's nurse has the day off so that she can celebrate Thanksgiving with her family while we celebrate with ours. We will miss her and be happy to see her on Friday when she returns.

Pictures:
1) Kennedy's bath time
2) Drake's bath time
3) Harlee watching Drake
4) Daddy & Kennedy

Old Wounds

Today was an emotionally draining day. The state nurse and social worker from MDCP (Medically Disabled Children's Program) came today for their evaluation of Drake. As you can imagine, anyone who has not witnessed Drake in action and simply reads his medical history does not have high hopes for him coming into our home. It began much like the neurologist visit where I was reliving his grim prognosis. With tears welling up in my eyes that began cascading down my cheeks, I explained how very far Drake has come and how he has already beaten the odds. Our little fighter has overcome every obstacle in his path and we are not about to stop now. Once the nurse began evaluating Drake, she was astonished by his abilities. The fact that he wants to drink from the bottle and attempts part of each feed is remarkable. She said that he should be blind but clearly he is not. He should not respond to sensory touch but he does. By the time these ladies left, we had a wonderful visit and they too were clearly rooting for Team Drake!

Picture:
Drake

Extra Hands

We began a new chapter today, the start of Drake's At-Home Nurse. I've thought many times that I could get more accomplished if I simply had more hands, and today I did. Having an extra pair of hands around for 8 hours a day was such a nice treat. Now if I could only figure out how to make more hours in the day. Drake's nurse is very kind and eager to learn what works best for Drake and how we prefer to do things here at home. My mom arrived today too, so for part of the day the adults in the house actually out numbered the babies.

Another special treat this afternoon was a sweet friend brought over a yummy dinner. It was so nice to see a friendly face and visit even if it was for just a short amount of time on the front porch. She completely understood how very fragile Drake and Kennedy's immune systems are which prevents them from having visitors for a while.

We are looking forward to another great day tomorrow and being one day closer to Brian being back home.

Pictures:
1) Drake snuggled up with Gran
2) Kennedy

Papa's Visit

Brian's dad, Papa, came to visit today and spend some time with his grandchildren. Drake and Kennedy loved spending time with him & I know he was glad to finally see them out of a hospital setting. It was a rather nice day with very little fussiness; they have saved the fussiness for us tonight.

This week begins with a new challenge. Brian has been getting packed and ready for another work week in Houston. Tomorrow will be my first day at home with the babies without Brian here to help. In addition, it will also be the start of Drake's home nurse. I have high hopes that this will help alleviate some stress by having her here to help me with some of the things Brian was helping me with. It is more than a full time job keeping up with two premature infants, and adding Drakes special medical needs into the mix, it is all we can do to stay caught up.

Here's hoping for a successful week!

Pictures:
1) Kennedy & Papa
2) Drake