Happy Trails to you....

So we said good by to the NICU Friday. It was a happy day, but it was a little sad too. Gail- our daytime Primary was working so that was pretty much awesome and Jasmine came in to see Kennedy off and brought her husband Rick and their two kids. So even though we didn't really tell anyone we were going home until we were actually out of the hospital we still had pretty nice group of well wishers. We got to the hospital early and did a few things before we went to the NICU. We had to wait for quite some time because the person who mixes the compounds in the Pharmacy didn't get in till 2:30. By the time all the paperwork was signed and we did our victory lap around the NICU to say good bye it was about 5pm. Kennedy slept on the car ride home. We had her hooked to her monitor and she did well with it. I did put the oxygen on her for the last part of the drive, but I think it was more paranoia on my part. It was evening and the tint on the windows made it hard to tell if her lips were pink enough. Soon as we got out of the car I could see she was fine so I took the oxygen off and she has been ok since. We stopped next door at grandma and grandpa's house before coming home. My Dad got to hold her for the first time and she was smiling and flirting up a storm with him. When we got home we fed her and then just layed around and enjoyed having her home. She did have one episode of vomiting, but after we put her bed on an incline she was doing much better. Shawn and I both got about 6 hours of sleep that night. I took over all the feedings and diaper changes after we went to bed since that is how it will be when Shawn goes back to work.
Yesterday was the first full day home with Kennedy. She met our neighbors from across a fence and some distance between us. She had several trips outside as we were back and forth between our house and grandma's and grandpa's house. She liked her Baby Bejorn front pack and she LOVES her swing. Grandma and Grandpa watched her for about an hour while Shawn and I made a trip to the grocery store and to pick up some videos. I think she may have had a little too much stimulation yesterday. Towards the end of the day she started getting really fussy so we made up her bed just like it was at the hospital and gave her Monkey to look at and put some blanket rolls around her and that seemed to do the trick. Today we plan on taking things a little slower and trying to help her get more quality deep sleep instead of the shorter lighter naps she had yesterday. Oh I almost forgot- when we gave her a bath yesterday we did it in the kitchen and used the spray attachment on the sink to help keep her warm and rinse her off and she loved it!

Here are some pics from Friday and Saturday:

Gail, Allyson, Me, and Stephanie

Gail and Jasmine in the same room together. They are no longer like Superman and Clark Kent!

Kennedy in her going home outfit and magic bonnet from Aunt Christi. Gail said she looks like a little Amish baby.

Kennedy's first time outside

In the Car Seat on the way home

Grandpa's First time holding Kennedy

Kennedy's First bath at home

Kennedy and Monkey playing on the floor

"The Magic Bonnet"

I'm just a little hankie,as square as square can be;

but with a stitch or two,they've made a bonnet out of me.

I'll be worn home from the hospital,or on the christening day;

then I'll be neatly pressed,and carefully packed away.

Now on the wedding day,so I have been told;

every well dressed bride,must have something old.

so what would be more fitting,than to find little old me;

a few stitches snipped and a weddinghankie I'll be.

If by chance it is a boy,some day he'll wed;

so to his bride he can present,

the hankie once worn upon his head.

Kennedy Is Home!!!!!!!!

After 137 days in the NICU we finally got to take our baby home!

Now before you all come knocking on our door dying to meet her I would like to go over a few things. First- just because she is out of the NICU does not mean she is the equivalent of a healthy full term baby. She is a micro preemie and regardless of how old or how big she gets she will always be a micro preemie and have health problems related to it. One of those problems is Bronchopulmonary Dysplasia. Her lungs were not fully developed when she was born and they also were further damaged from being on a ventilator for an extended period of time. What this means is that she is highly sensitive to infection. She cannot be around smoke- even the lingering smell of smoke can hurt her sensitive lungs. We are also bringing her home at the beginning of RSV season. RSV is a common virus that causes cold symptoms in healthy full term infants, children, and adults. Babies who were born prematurely, at an extremely low birth weight, or who have a chronic lung condition are at an extreme risk for catching this virus and it can cause severe complications including being readmitted to the hospital and intubated and back on a ventilator. Because of this risk Kennedy will be given Synagis shots to help prevent infection and must be guarded carefully against sick people. She has to be kept away from crowds for the duration of RSV season. RSV season usually lasts from September/October to April depending on the area. Since we are not anxious to be back in the NICU we are going to be taking the following precautions:

No sick visitors- If your sick or you think you might be coming down with something or someone in your household is sick please stay home.
Masks- If Shawn or I feel your questionable or maybe you just have an allergy drip or a cold sore we may ask you to wear a mask.
Hand washing- No I probably won’t make you do the full three minute NICU scrub, but you will have to do a good scrub up to your elbows before you may touch her. Also we may have you use a hand sanitizer after washing.
Kids- School age children are big on getting colds and being exposed to them so during RSV season we really aren’t letting them touch or hold Kennedy.
Speaking of Holding- Preemies react very differently to stimulation and become over stimulated easily. Shawn and I will help you to know if she needs a break. She won’t be able to handle the passing around a typical newborn gets and we will probably limit the people who are allowed to hold her.

I am posting these guidelines so that everyone will know what to expect when they visit. Please don’t let the info scare you or keep you from visiting and please don’t take any of the precautions personally. We just spent 137 days in the hospital and like I said we are not anxious to go back.

So now that she is home is this the end of the blog? HECK NO! Its just the beginning. So here is something to keep in mind as you continue to follow the blog- Kennedy has two ages. Kennedy was born on May 11th which means her actual age is almost 20 weeks old. Her second age is called her adjusted age. It is how old she would be if she had been born on her due date. Her adjusted age is 10 weeks old. Her adjusted age is used when looking at developmental milestones. Kennedy will always be behind other kids born the same time as her. She will always be a little smaller and more petite but as she gets older (5 or 6 years and up) the differences will become less noticeable. Even though she is actually a little over four months old her development is closer to that of a two month old. It might take her a litter longer than average to rollover, crawl, eat and walk but she will catch up in her own time.

What’s will Kennedy’s life be like now that she is home? Well she still on most of the same medications she was on in the hospital. 8 to be exact. She also came home with oxygen since we are at a higher elevation than the hospital. They sent her home with the oxygen, but not on it. Shawn and I will be monitoring her breathing and deciding if she needs to go back on the oxygen for a while while she adjusts to the higher altitude. She will be followed closely by the High Risk clinic, BPD clinic, the eye clinic and the Gastroenterologists at the hospital as well as her local pediatrician. So other than her doctor’s appointments she will be on lockdown for the duration of the RSV season.

Eye Surgery Update

Just a quick update- Kennedy's eye surgery went well. It took two doses of Morphine and 1 1/2 doses of versed to sedate her, but she didn't have to be re-intubated. They did put her cannula back on as a precaution, but she was back off oxygen this afternoon and she even nippled all her feedings despite being ridiculously tired from the sedation. All is well and we are one more step closer to home. Check back soon to see if we get assigned a discharge date.

I <3 Primaries

I love our primaries! I have been wanting to blog about my primaries for a while now but life has been so busy I just haven't had a chance yet so here I go! For those who don't know a Primary Nurse is a nurse who signs up for your baby so that whenever they work they get your kid. At least that was how the program was described to us when we were admitted to the hospital and waiting for Kennedy to be born. It was almost an after thought that that followed the lengthy and scary description of what life in the NICU would be like for Kennedy. What they didn't say, but any NICU mom will be sure to tell you is that Primaries are angels. Guardian angels if you will. Sure they get your kid every time they work and the premise of the primary nurse program is so that the child and parents will have some continuity during their NICU stay. They are supposed to get to know your kid and provide a familiar face for you, but they do SOOOOOO much more than that. They care for your child 36 hours a week. They know what she likes and dislikes. They hold her and comfort her when you're not around. They know her favorite sleeping position, and how she reacts to certain meds. They know your child- how to comfort, how to heal, and how to make her happy. They go through the ups and the downs with you. When your stuck in this strange scary NICU world they are one of the few people who can relate to what your going through. They are a shoulder to cry on, and a cheerleader, and a friend. They grow to love your child and are more like an Aunt with extensive medical knowledge to your child than a nurse. Without them I would have been lost.

So here is a tribute to our Primary Nurses:

Meet our daytime Primary, Gail:

She has been there from the very beginning. She was the first nurse to sign up to primary Kennedy. We liked her right away and asked if she would, but she had already decided to sign her self up. See that adorable purple dress and socks Kennedy is wearing? Those are a gift from her. Gail loves her horse Amadeus (short for Rock Me Amadeus, his show name), her new motorcycle, and sudoku. Gail has been Kennedy's biggest advocate. Without her on Kennedy's side I don't think we would be as far as we have come today.

Meet our night Primary, Jasmine: Jasmine signed up for Kennedy about 1 or 2 weeks after she was born. We liked her right away too and asked her the first night we met her if she would be Kennedy's primary. She LOVES LOVES LOVES the Dodgers and Jasmine can make a 12 hour shift go by in a flash! She always has the best stories to tell and is an AMAZING artist. Shawn has said her handwriting is so neat it could be a font. She made two of the signs on Kennedy's crib:

This one she cut everything out by hand- even the tiny banana! Kennedy did help with the foot prints, lol.

And this one she made to pick on Shawn since he is an Angels fan. (Yes the Angels and Dodgers are hand drawn. No stickers here!)

Friday she surprised us with a beautiful portrait of Kennedy. We especially love that she used Kennedy's ribbon to make the bow:

So I guess what I am trying to say is Primary Nurses are neat, but our Primaries are AMAZING!

Gail and Jasmine, thank you for all you have done for Kennedy and for us! You are amazing women and we are so happy to have you in our lives.

Katie & Shawn

TA DA!!!!!!

Notice Anything????

That's right folks! For the first time in our daughter's life and after 133 days of waiting we got to see Kennedy with nothing on her face today. No tubes, no tape, no cannula, nothing that doesn't belong there! She has been doing SO well they decided to try her with no oxygen. Now don't get too excited though. Since we live at a considerably higher elevation than the hospital chances are that she will still come home on oxygen, but for now she is getting a break and her poor little cheeks have a chance to air out. She is doing really well on her feeds and even though she is not taking as much as they would like she is still gaining weight and having an acceptable amount of wet and dirty diapers a day. They changed her formula and it is now mixed to be 30 calories instead of 27 calories. They have also lowered her bed so it lays flat now. Even though she has had a little more problems with the reflux she seems to be doing well with that change also. Since she has been lying flat her heart rate has started to get really low while sleeping (as low as 79). I spoke with the NP today about it and they are going to be watching her and may do a Ph Probe or Sleep study before she goes home to see if I can still have a monitor in case she does get sent home without oxygen. It could be a reflux thing or it could just be because she is getting bigger (7lbs 11oz).

We had a great time rooming in on Friday night. Here is my favorite pic form the night:

Some good news and some not so good news

Good news first- Wednesday when I got to the hospital Kennedy didn't have her NG tube! They pulled it and decided to try tough love. Basically she is ad lib on her feedings. She can eat what she wants when she wants but they will wake her if its been longer than 3-4 hours since the last feedings. They are going to watch her for a day or two and see if she takes most of her feedings- hopefully 90% or more.

Not so good news- Kennedys ROP has progressed to stage III in both eyes and she is going to need laser surgery to try to keep the retina from detaching. Yesterday we went and signed consents for the surgery and now they think it will take place next Tuesday. They will have to sedate her, but hopefully they won't have to give her so much that she has to be re-intubated. Also if she is doing well on her feedings she will have to wait for the eye doctor to ok her before she can be discharged.



Early this week Shawn and I decided I would return to the Ronald McDonald House on Monday if we didn't have a discharge date by the weekend. We thought it would be best for me to go in and feed her to see if she would do better with me than the nurses. Since she seems to be doing well on her feedings we are hoping she will continue in that direction, but our plans are still for me to return to the Ronald Mc Donald house next week. Hopefully they will be able to get me in before the surgery on Tuesday. We are still planning to room in tomorrow night.

Rooming In

Shawn and I were supposed to room in on Friday night, but there was some confusion and the wrong date was written down so we roomed in last night (Saturday) instead. It was so much fun! We even got a few hours of sleep. We got to the NICU at 8pm and by the time we got Kennedy transferred to the rooming in room and settled in it was 9pm and time for a feeding. The rooming in room was way different than Shawn and I expected. We were thinking it would be more sterile. Instead it was like a little hotel room. It had a nice size bathroom, a closet, a day bed with trundle, a glider, a TV and sink and counter space to fix up formula and organize her meds and supplies. After the feeding Kennedy fell asleep so we waited for her to wake up and then gave her bath. She promptly ripped off her nasal canula and pulled out her NG tube. I finished her bath as quickly as possible while Shawn held her canula in place. Soon as she was out of the bath and wrapped in a towel Shawn got some more tagaderm and we taped her canula back in place. She was hungry and crying so we decided to go ahead and feed her and deal with the NG tube later. Lucky for us she managed to take the whole bottle except one cc and even took her meds by mouth. After a couple hours our night primary Jasmine helped me place a new NG tube before her next feeding. She did well with that feeding also and we only had to gavage 5 ccs. I was glad we got the NG back in though since she had quite a few meds due with that feeding and I doubt I would have gotten her to take all of them by mouth. I think Kennedy was really enjoying having us there. She was up most of the night and gave us quiet a few smiles (a skill she has recently acquired and I have yet to catch on film). We were all having so much fun we really didn't even try to sleep until after the 3am feeding. Up to that point her med schedule only allowed for about 45 minutes to an hour of time between feedings and more medications. All in all we had a great time and other than all the meds and checking the monitor when it alarmed I think it went much like the first night with baby for any new parents. We are scheduled to room in again next Friday night if she can't come home before then.

The Rooming In room

Shawn and Kennedy

Kennedy Playing

Big Steps

Yesterday was a good day. Since Kennedy was so early she had to take a car seat test before they can send her home, so our daytime primary nurse decided we should go ahead and do the test yesterday since there has been so much talk about going home lately. She passed with flying colors of course! She did have a little help from monkey. She liked her car seat and was having a really good time checking everything out, but she fall asleep towards the end. I also spoke with the discharge coordinator about setting up the oxygen delivery and it looks like the insurance company is going to give us a portable monitor to take her home on. AND the same company who will deliver her oxygen will also be delivering her feeding supplies- which includes her formula. Since it is high density formula is is covered by insurance which is fantastic because it is so much more expensive than regular formula. So now we are just waiting for Kennedy to tell us she is ready to come home. Hopefully she will be able to nipple all of her feedings by this weekend. If not I will be learning to place her corpak on Monday. That's that lovely yellow tube that goes up her nose and into her stomach. Oh yeah I almost forgot! The corpak is now a NG instead of an NJ. That means she is finally able to take an entire feeding in her stomach instead of part of it going directly to her small intestine.

I'm A Big Kid Now!

It's official- she is huge! 19 inches long and 7 pounds 4 ounces. Her preemie onesies are getting hard to button and she has already outgrown on of her sleepers. I am taking some newborn size clothing down today to see how if fits. She has been doing well on her feeds. They have dumped the increasing by 3 ccs process and have decided to offer her full feedings and allow her to eat as much as she wants. She did really well with it yesterday and only had 4 of her 8 feedings fall short of 60ccs. Shawn and I have something very exciting to look forward to on Friday. We will be rooming in! The NICU has a private room where we can spend the night with Kennedy. She will be hooked to all her monitors and the readings will be transmitted to a monitor outside for the nurse to keep an eye on her. Shawn and I will be responsible for all her cares- feedings, medications, oxygen levels ect... but the doctors and nurses are there in case we need them. Basically its a trial run before they send her home. Of course that doesn't mean she gets to go home after we room in. She still has to meet her feeding requirements but it is one huge step closer to going home and the very first time Shawn and I will be able to spend the night with our daughter and care for her on our own.

She has already learned how to do the pouty lip!

Update for the week

Kennedy's last eye exam didn't go so well. Her R.O.P has progressed to stage III in her right eye. ROP is a common eye problem for preemies for more info on it click here and here. So they are going to do another eye exam in a week or two and from there they will probably need to laser surgery to keep it from progressing and causing retinal detachment. Her nipple feedings were changed to increase by 3ccs every 12 hours. She is currently at 39ccs but has started to level out. Eating is hard work for a preemie and while her stomach is handling the increased volume well she just doesn't have the energy to eat all that in one sitting. She now needs to get to 63ccs to be considered on full feeds. Once she gets to full feeds they will keep her for another week or so and make sure she can nipple all her feedings and is gaining weight well before they will send her home.

Coke? They gave my kid coke?

So yesterday Kennedy had her first soda- a Coke. Her NJ tube was clogged and because it is such a hassle to change they attempted to unclog it before trying to replace it. Well in this age of modern medicine it never ceases to amaze me the tools that they use. Apparently the Coke eats through the enzymes in the formula and can help clear a clog. They gave her 3ccs to try to clear the clog, but we aren't sure how much actually got since the clog wasn't cleared. Apparently Mountain Dew works better but since its a Seventh Day Adventist and caffeine is off limits it was easier to find a certified nurse to replace the tube than a can of the Dew. So they got the tube replaced and confirmed placement around 4pm and were able to restart her continuous feeds. She is doing well on nippling and up to 24 ccs as of yesterday.