Wednesday, October 31, 2012

Managing Pain

Drake's four part surgery was a success and we could not be happier. Now the key is managing his pain, which is a little tricky. Since he was on pain medication during the time he was so very sick, he has a much higher tolerance to the pain meds than other babies his size. This was evident this evening when he was crying and his stats were all over the place. The night doctor increased the amount he is receiving through a constant drip. I am about to head back over and check on him again, and I will also be camping out in his nursery tonight. I just need to make sure if he shows the slightest sign of pain that someone is notified. Drake certainly should not have to endure any further pain.

Kennedy has been doing a great job! She always seems to know when Drake is in a serious situation, and she stays on her very best behavior. It is starting to sound like she could be released as early as tomorrow. Not exactly what I would prefer considering Drake is in the NICU, but we are thankful she is ready to leave.

Pictures:
1) Drake holding mommy's finger
2) Kennedy
3) Drake getting ready for surgery
4) Drake
5) Kennedy

Out of Surgery

Drake is out of surgery and everything went really well. He is currently on a ventilator for breathing and is receiving pain medication through an IV. Both of these will be weened down over the next couple of days and he will resume feeds soon.

Tuesday, October 30, 2012

Let's Do This

When our neonatologist got in touch with the surgeon today, we were all taken a bit off guard. They asked if we were ok with having his surgery tomorrow. Yes, we are ready to take away the discomfort he has been having due to the reflux and hernias; therefore, Drake's surgery is set and will take place tomorrow at 1:30pm.

He will have his last bottle tonight here in Special Care and then after midnight he will be transported back to the NICU to prep for surgery. I will be going with him to make sure he gets settled in, and then I will be back and forth between NICU with him and Special Care with Kennedy. They will be hooking him up to an IV since he will not be allowed to eat. I know what he gets like when he is hungry and he hasn't missed a meal so I am not looking forward to the next 12 hours. Right now he is asleep in his swing from home that we are able to have here in Special Care, and I think he will miss that most of all.

Kennedy is doing good. The doctors are monitoring her for consistent weight gains and feedings over the next few days before she is released.

Please keep this little guy in your thoughts and prayers tomorrow.

Monday, October 29, 2012

Inching Closer

Drake and Kennedy both had really good days today. Drake even took 4 whole bottles! Both babies have decided that they prefer being held over being anywhere else. I am quite thankful to have Gran here during the day along with our caring nurses to help out. As I am writing this with my left hand, I am snuggling a sleeping baby with my right and rocking the other with my foot. My multitasking skills have taken on a new meaning from one year ago.

Our surgeon was out of town today so our neonatologist will call back tomorrow to schedule Drake's surgery. We are anxious to find out when it will be taking place. Kennedy should be ready to head to Gran and Poppy's in just a few days.

Pictures:
1) Mommy & Drake
2) Mommy & Kennedy
3) Drake
4) Uncle Aaron & Kennedy

Sunday, October 28, 2012

The Decision

For weeks now, we have struggled with what would be best for Drake in terms of his up coming surgery. We have consulted with various doctors, nurses and medical personnel concerning Drake's case, and we have come to a decision about what will be best for him. This week he will be having his two inguinal hernias repaired, his circumcision, nissen fundoplication (to prevent reflux), and a gastrostomy tube (g-tube) placed to insure adequate nutrition. After his recovery back in the NICU, we will be able to take our baby boy home and continue working on his feeds. Everyone agrees that he will be much happier once he is able to go home, and I know we will.

Miss Kennedy is all set to go home (Gran & Poppy's) this week. They have assured me she will not be released on the same day as Drake's surgery, which I am very thankful about. After tomorrow we should have a better idea about when Drake's surgery will be and when Kennedy will be discharged.

We did have some fun today taking our 1st Halloween pictures while they are still together.

Saturday, October 27, 2012

What's All The Fuss About?

Wow! Today was a tough day for our little man and therefore a tough day for us. Thank goodness Brian and Aunt Gigi were here to help out. Poor little Drake was completely unsettled all day and nothing seemed to make him happy. Afraid that he was in pain from his hernias, we asked that he be given Tylenol. It breaks our hearts to see our little boy upset when we haven't the slightest idea what is wrong.

Kennedy has been back to her normal self today and tearing through the bottles with no problem. She even had a poopy diaper which is a big deal for her now that she is on 1/2 and 1/2. On straight breast milk she would go multiple times daily, but on 1/2 and 1/2 she has been requiring a glycerin suppository after three days with no stools. This time she did it all on her own!

Drake's hernias seem to be getting worse; therefore, we are thankful to have his surgery scheduled for this week. We will know an exact date on Monday once it is scheduled. Unfortunately, he had to get his feeding tube back today. He just wasn't able to complete the volume that he needs in order to grow. He loves eating and he shows signs of being hungry, but his reflux prevents him from completing his feeds. As I am writing this, he is finally quietly settled and sleeping in his swing.

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

Friday, October 26, 2012

Double Down

Both of our little angels were feeling down today following their 3rd round of immunizations. As a parent, it is difficult to see your child not feeling themselves. We did everything we could to make them feel more comfortable today as they recuperate from the shots.

I alternated with Gran and Aunt Gigi, taking turns holding each of them; both Drake and Kennedy altered states of fussiness and sleep as their medicines ran their course. After daddy had a long day of work, he came in and held Drake; it was almost immediate that Drake was no longer fussy and gazing into daddy's eyes as he consoled him. Those two need each other after they have a long day. Soon we will all be together.

Neither one of them has had much of an appetite today, and they have both thrown up. Kennedy has struggled again with running a fever throughout the day, and her normal go with the flow attitude has been somewhat temperamental. Due to their appetite being off, both of them have lost a tiny bit of weight as opposed to their consistent incremental gains.

Needless to say, today has not been an easy day here in Special Care. We are very much looking forward to tomorrow, when we hope both Drake and Kennedy will feel much better and be back to their normal selves.

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

Thursday, October 25, 2012

Playing With Our Emotions

Today has been a mixture of emotions beginning with disappointment and followed by unexpected delight. Brian called early this morning as he was beginning his work day, and I informed him that both Drake and Kennedy were doing well and it had been a calm night. Shortly after our conversation, Kennedy had a Brady. Our nurse rushed in to assist her and it wasn't long before Kennedy's heart rate resumed normal range. This was her only episode of the day, but the effects trickle into the days to come. Our very much anticipated trip home with her will now be postponed. The rules are 5 days Brady free in order to be released. Assuming she does not have any future incidents over the weekend, she will now be released on Tuesday. This was heartbreaking for us because we have been eagerly awaiting taking her home this weekend. Now her discharge will fall during the work week and Brian will not be able to join us. These 4 month shots have been difficult on our baby girl. Not only did they cause her Brady, but she has spiked a fever twice today. I am thankful to be here in the hospital where the shots are spaced out over 3 days, and we have immediate medical assistance should it be needed.

Our afternoon faired much better in the news department. The hearing screener arrived back to do Drake's test. We had been warned by the neonatologist not to be surprised if he didn't pass the screening. She said they would perform the hearing screening three separate times here at the hospital and then they would send us to an auditory specialist. As you know, we have already been told by the neurologist that his hearing, vision and motor skills will all be effected from the stroke he suffered. We also went into this knowing that the diuretics used restart his kidney function can cause hearing loss, too. As I held my sweet sleeping boy in my arms, the screener performed the test. With each minute that passed, I prepared myself for the results. To my delight, she informed me that we were finished and he passed in both ears. I actually had her repeat the results. Hooray! I scurried to my phone so that I could share my enthusiasm with Brian. Another 1st down for Team Drake!

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

Wednesday, October 24, 2012

Round One

Drake started his day early again with having blood drawn. This is protocol to check all of his levels prior to surgery next week. The nurse had warned me that he would be going into a treatment room for this in case I got up during the night and he was gone. I am very glad that she warned me about this because I got up about 5am and sure enough he was missing. Knowing where he was, I looked over to check on Kennedy. Panic set in for a second when she wasn't in her crib or Rock 'n Play Sleeper...then I spotted her snug as a bug in her carseat. One more thing to cross off of her list...carseat test complete.

Today began round one of their 4 month immunizations. They both got their first shot today, and tomorrow will be round two. Along with round two, they will also be receiving their first synagis shot (protection against RSV). The synagis shots will be administered once a month for the duration of RSV season. Friday will complete their 4 month shots with round three. As you may imagine, they were not in the best of spirits today. I am hopeful that they will be feeling more like themselves tomorrow.

Pictures:
1)Drake
2) Kennedy

Tuesday, October 23, 2012

4 Months Old!

It's hard to believe Drake and Kennedy are 4 months old! Hopefully when we celebrate 5 months we will all be at home together. The progress our little angels have made since the day they were born is absolutely amazing.

Our day began early this morning with Drake's neuro-sonogram at 5:30am. When his doctor came in to go over the results, she said that she wished we had only seen the neuro-sonogram and not the MRI. The sonogram does not look as scary as the MRI. The good news is that he does not have excessive fluid on his brain and he will not be needing a shunt. The hearing screener came in this afternoon but it was during his feeding so she will come back another day this week. The hearing screening is meant to be performed while the babies are sleeping to get the most accurate results.

Tonight we had bath night...which Drake and Kennedy love! Below are pictures from our photo session yesterday. I'm so glad to finally have pictures of them together!

Monday, October 22, 2012

Say Cheese!

What an experience we had today! Our first baby photo session. We had the hospital photographer come take pictures of Drake and Kennedy. The photographer was used to taking pictures of newborns, so we all learned that photographing 4 month old preemies is harder than it sounds. Luckily she was able to get some good shots and I should be able to post some tomorrow.

Kennedy is still all set for going home this weekend as long as her carseat test and shots don't have any complications. We're not going to know what to think when she doesn't have leads on anymore. Just the thought of picking her up without being tethered to a monitor is hard to fathom.

Drake's surgery has been rescheduled for next week, and we will consult with the doctors over the weekend about the best plan of action for him. Right now we are giving Drake time to show us what he can do and what he needs. Tomorrow is a big day for him. He has a neuro-sonogram and a hearing screening scheduled. To be honest, I am nervous about both of these. The neuro-sonogram is looking for fluid on his brain that the doctors could help correct. Regardless of how the hearing screening comes out, we know that Drake can hear. He loves his music and he responds to our voices. Please keep Drake in your prayers tomorrow.

Pictures:
1) Drake
2) Drake watching the mobile on his swing
3) Kennedy
4) Kennedy

Sunday, October 21, 2012

Do You Hear What I Hear?

I love the weekends when we are able to start off our days as a complete family. Sunday's are bittersweet because the beginning of a new week means Brian has to head out, but at least we made the most of our morning. Brian and I completed our CPR training and then he got some snuggle time in with Drake and Kennedy before he had to leave.

Brian was even able to be here when they came to do Kennedy's hearing screening. They explained that while she was sleeping the machine would play a series of soft noises and it would monitor her brain activity. Once she was hooked up to all of the monitors, the screener told us it could take about 20 minutes. We prepared ourselves to wait, but within less than a few minutes she was finished with 100% in both ears. We even have a certificate!

After meeting with their doctor today, we have a plan for both Drake and Kennedy. Drake is borderline with getting the G-Tube. We are not against him getting it, but if he does not have to have it, we would rather him not. Because of this, they are pushing his surgery back a week. This will give us more time to see if he can handle full feeds. If after this week the doctors advise us to get the G-Tube, then we will get it. He is already having his hernias repaired along with his circumcision so if we need to add in a G-Tube, this would be the time to do it. Since his surgery is being postponed, both he and Kennedy will receive their 4 month vaccinations this week. They will be spread out over 3 days beginning on Wednesday.

Aunt Meredith and Uncle Aaron brought Kennedy's carseat up today for her carseat test. After she completes the carseat test and vaccinations, she will be ready to go home this weekend (at least to Gran & Poppy's). Wow! After 4 months in the hospital, she will finally be ready to leave with us. Then we will really be counting down the days for Drake to join us.

Pictures:
1) Kennedy
2) Kennedy
3) Drake
4) Drake & Daddy
5) Kennedy
6) Kennedy
7) Drake
8) Kennedy
9) Drake