Tuesday, February 26, 2013


We are currently staying at Gran and Poppy's for these upcoming doctor visits. This way little Miss Kennedy has a babysitter while Drake and I are gone to the doctor visits. Tomorrow is the neurologist and Thursday will be the cranial evaluation. By the end of this week, we will all be ready to reunite at home with Daddy.

Today I was able to get out for a lunch with some very special friends from Presby. They came by my parents house to visit with the babies and marveled at their development post discharge.

Both Drake and Kennedy's congestion has improved greatly! We are still doing breathing treatments on Drake, but I am just glad to see him improving. Boy does Kennedy act different away from home! She is so afraid she is going to miss something, that she is absolutely fighting every nap possible. This is going to make for quite a challenge for Gran the next two days as we are gone with Drake to appointments.

Oh, Mr Drake... We have been working with him on using his hands and grasping toys. He seems to have taken that and run with it...last night he disconnected his feeding tube. Luckily I woke up during the night and was able to reconnect it before he lost too many calories, but not before it made quite a mess on the floor.

Drake's dietitian through ECI came out this weekend. In the past three weeks since her last visit, he has grown a full inch and almost one pound! Way to go Drake! I hope and pray to have good news to report on Friday.

Friday, February 22, 2013

8 Months Old!

Tomorrow is February 23rd and that means our little angels will be 8 months old! Wow! The months seem to be flying by really quickly! Drake's nurse and I weighed them today and they were within a 1/2 ounce of each other...Kennedy was 12# 6oz and Drake was 12# 5.5oz. Both Drake and Kennedy are still battling congestion, but it does seem to be improving. Drake is still on breathing treatments every 4 hours and we will continue those until he is cleared by his pediatrician.

Due to severe weather on Thursday, I rescheduled Drake's cranial evaluation for next Thursday. I just did not feel comfortable driving to Dallas in a storm with such precious cargo. Next week will be a big week for Drake; he has an appointment with a neurologist on Wednesday and then his cranial evaluation on Thursday. After my last meeting with a neurologist, I am a bit apprehensive about meeting with another one. I am praying this meeting will go well and that this doctor will look at Drake "the patient" and not just Drake "the MRI scan."

My, oh my, Drake has had a great few days! Drake's nurse got him an exercise ball as the Occupational Therapist had suggested, and this has really helped with his head and neck control exercises. We also broke the rules (don't tell the developmental doctor) and let him try rice cereal with a spoon. He was only interested in a few bites, but it was amazing to see him open his mouth and actually take a few bites. It just didn't seem fair for Kennedy to have all of the fun. We started playing a game of "peek-a-boo" with Drake where we cover his face with a lovie or small blanket and we talk to him and encourage him to get it off. This was suggested by his Social Skills Therapist who comes to visit every other week. He isn't using his hands to remove it yet, but he has figured out that moving his head back and forth will remove it.

Kennedy has really been doing well with her sitting exercises. She still can't stay up for very long on her own, but she can stay up longer than last week and she is developing more control. Kennedy figured out the "Peek-a-boo" game really quickly and she enjoys playing. She pulls the lovie off of her face when we say, "Where's Kennedy?" and then she laughs and giggles. In the mornings when she wakes up, she is quite the talker. I told Brian she must be telling me all about her dreams during the night.

It's hard to believe we have 8 months behind us already and 3 of those months have actually been in our house. I can't wait to see what they learn and discover between now and month 9!

Tuesday, February 19, 2013

Cranial Evaluation

Saturday was a rough day for little Drake because he wasn't feeling very good. In order to keep his saturation level in the appropriate range, we had to turn up his oxygen. Obviously we have not been able to do any of our time without wearing the cannula :( I also increased his breathing treatments to every 3 hours). He spent most of the day sleeping which is what he needed. He is not back to 100% yet, but he is feeling a little bit better. Even while he has been under the weather, he has remained consistent with his bottle attempts. He has not run a fever and all of his nasal drainage has been clear. These are all good signs. We have also been able to ween him back down to breathing treatments every 4 hours.

This crazy Texas weather is starting to effect Kennedy as well. She has been battling nasal congestion for the past two days. Hers is not as severe as Drake's, but it is definitely present. She absolutely hates the blue bulb syringe! It is one of those necessary evils. I did not anticipate her fighting me so much on it, because Drake tolerates it pretty well.

Thursday we will head back to Dallas with Drake to have a cranial evaluation for plagiocephaly. This is due mostly from the extremely long period of time he spent flat on his back in the hospital. The nurses rotate the babies regularly to prevent this; however, when Drake was so very ill, this was not possible. Also, he spent an extended period of time on C-PAP which also prevented these rotations. We keep him propped on his side as much as possible to help correct his head shape, and we will see what the craniofacial doctor has to say on Thursday. From what I have read online, neither private insurance nor his Medicaid will pay for a cranial band or helmet, but we will cross that bridge when and if we it presents itself.

Friday, February 15, 2013


We're very excited to be back home as a family of 4 again! We had fun visiting with family in McKinney and Brian had a successful business trip in Chicago, but it sure does feel good to be home. It was fun to see Drake and Kennedy recognize that we were back home too.

We had a wonderful visit on Wednesday evening from one of our favorite NICU nurses. It was SO good to sit and visit with her outside of a hospital setting. She was Kennedy's primary day nurse from day one; therefore, she has been with us through everything. What an amazing journey her profession has allowed her to be a part of with our family. As I said before, we made some lifelong friends in the NICU.

Little Miss Kennedy was given the ok from our developmental doctor to begin rice cereal with a spoon. She took to it like a fish to water! Gran and Poppy were very impressed for her first time. I was hoping she would eat a few spoonfuls, but our little rockstar finished the entire bowl. Brian was able to see her eating when he arrived home tonight, and he was quite impressed as well. He is looking forward to feeding her this weekend.

Poor little Drake is dealing with another bout of congestion and cough. We have once again begun breathing treatments every 4 hours. It seems to be helping because he and I both got more sleep last night than we got the night before. It absolutely breaks my heart to see him feeling crummy. We are praying this is resolved with breathing treatments and does not get any worse. I hope to have a good report on his recovery on Tuesday.

Tuesday, February 12, 2013

Slow and Steady

Since Daddy is in Chicago with work all week, the babies and I decided to take a little trip of our own. We are visiting my parents (Gran & Poppy) for the week. Lucky for us Drake's wonderful nurse has family in the area; therefore she is able to stay with her family at night and still be with us during the days. Having more helpers has been really nice, but Drake and Kennedy are so afraid they will miss something that they have not been napping at their usual rate.

Tonight I went out to dinner with my sister, brother-in-law, brother & his girlfriend. We left all 3 babies (Drake, Kennedy & their cousin Jacob) with Gran and Poppy. It was a real treat to get out of the house and have some conversations with adults! On our way home my sister received an S.O.S. text message from Gran. When we arrived back at their house, Jacob was quite upset (overly tired) and Drake and Kennedy were good. Great job, little ones!

Kennedy is a giggle box from the moment she wakes up each morning. As soon as she sees me coming in to get her up, she begins smiling and laughing. She continues to be full of joy throughout the day. We have been working with her on sitting up, and she is really showing progress. The developmental doctor also said that Kennedy is ready to be introduced to rice cereal, and I'm looking forward to trying that this week. She is already trying to hold her bottles, so it will be interesting to see what she thinks about a spoon. Today I was using her favorite toy while I was playing with Drake. She completely lost interest in her play gym and everything Gran was using to distract her; she was fixated on her toy that Drake was using. She is learning about sharing at an early age...never too early to start.

After our feedback from the developmental doctor, we have been working with Drake on his neck and trunk control. He is not a huge fan of tummy time, so we generally have to trick him into thinking it was his idea. I guess this makes him a typical guy :) He has really done well with tracking, and we are hoping to see this continue to improve. The developmental doctor said he may need further testing for a cortex impairment, meaning he may only be seeing intermittently. We will continue to work with him and pray that this is not the case. Over the past few days he has taken an interest in his little mirror, and we have been excited to see this. Slow and steady...one day at a time.