It Takes Time

Kekoa's real success is with his lungs. On his very first day of life Kekoa had a pulmonary hemorrhage which, I just found out, almost took his life. Since then he has had many many difficulties with his lung development. Other than his lungs, he is doing well and progressing each day. He hovers around 5 lbs, some days he is an ounce or two under and other days he is an ounce or two over. He is also 16.5" long which is three inches longer than he was at birth.

The NPCPAP makes him a very cranky baby and in turn makes a very cranky mommy. It is hard to see your baby in pain and screaming and it is even harder to not be able to do anything about it. Soon enough I'll be able to give him all the love and comfort he can handle. P.S. I would be cranky too if I had a huge stiff tube shoved up my nose and changed out on a daily basis. I think he has every right to be angry, it's just hard for me to be a helpless bystander.

So here is a summary of all of Kekoa's ventilator support. The Jet Ventilator would provide him with 480 breaths per minute. This helped to keep his lungs from collapsing on a daily basis. It then would give him 10-20 regular breaths per minute. He was on this ventilator for close to two months. He then was converted to the conventional ventilator which no longer gave him the high frequency breaths but instead gave him 10-35 breaths per minute. The number of breaths per minute that he received depended on how well he was doing with breathing on his own. Once he conquered the conventional ventilator he was converted to NPCPAP which is a constant pressure (flow) of oxygen through a tube that is inserted into his nose. The tube is inserted into the nose all the way until it essentially reaches the back of his throat. This allows the oxygen to enter into his lungs and keep them expanded while he is required to do all of the breathing on his own.

Considering the severity of his lung disease he has progressed really well over the past couple of weeks. Initially the doctors thought he would have to be on the Jet Ventilator for another two months but he went from Jet to NPCPAP in about one week. He is doing great and we hope and pray that it continues so that he can make it to the nasal cannula just like Makaio (hopefully this will happen within the next couple of weeks) with the hope of being transferred to Minnesota soon and having our entire family together again.

Jet Ventilator

Conventional Ventilator

NPCPAP

Getting Big

Makaio is now doing well enough that he gets to be in a crib. He is getting so big and seems to change a little bit every day. He is now 18.25" long which is four inches longer than he was at birth. He is a whopping 6 lbs 4 oz now and gets to breastfeed twice a day. As he learns to suck, swallow and breathe all at the same time he will get to attempt feeding by mouth more often. This is not something that comes natural to preterm babies. There have been many times that he has stopped breathing or that his heart rate and come very close to zero just because it is so difficult to do all three things at once.

This is the progress he has made as shown by the different beds that he is in. The warmer bed was used when he was first born. It gives heat at all times and is regulated by his own body temperature. If he is cold the bed turns on and provides heat and if he gets too warm the bed turns off. In the isolette he was still provided with heat but they could control the temperature of the air inside the isolette. As his ability to keep his temperature improved the temperature within the isolette was turned down until he was finally at room temperature and then he was transferred to a crib. He still needs to be wrapped up and kept warm while in his crib as any baby would, but if he gets too cold and has to focus too much on keeping his temperature regulated he begins to lose weight because he is spending too many calories on staying warm and not enough calories on growing. Just remember, I should still be pregnant he would still be growing in a warm and safe environment instead of in a loud and often times chilly hospital room.

Warmer Bed

Isolette

Crib

Birthday Excitement

Today was my birthday and let me tell you, we really know how to party. Since Sterling and I are currently living in two different states the birthday celebration was pretty boring, even the boys agree.

The boys and I celebrated my birthday with the following activities. They slept and I watched them sleep. When they're that cute, the activity is never as important as the time spent doing it! We wish that our daddy could be here with us but we know that tomorrow will come soon enough.

Sometimes Change is a Good Thing

Two months have come and gone since the boys were born. The following is a list of changes that have taken place since their one month birthday.

Makaio

1. I grew a double chin - I gained two pounds this month - weighing in at 5 lbs 5.3 oz.

2. I learned to love eating! I went from eating 3 oz/day to eating over 9 oz/day.

3. I graduated from Preemie XS diapers to Preemie S diapers.

4. Daddy held me for the first time (July 3, 2010).

5. I got extubated (July 5, 2010) which means that they removed the breathing tube from my throat and put it in my nose. My nose was sore and bled all the time but mom and dad heard me cry for the first time.

6. They removed my PICC line (July 8, 2010) which means that I get all of my nutrition from breastmilk.

7. I wore clothing for the first time (July 20, 2010).

8. I moved from a warmer bed to an isolet (July 21, 2010).

9. I am using nasal cannula to breathe now (July 28, 2010). If you look at the picture mom posted, you will see that the nasal cannula is just like what my Great Grandma Bina uses.

10. I got my two month immunizations (July 31, 2010).

Kekoa

1. I am an under-paid and under-appreciated comedian. I make Daddy, Mommy and the nurses laugh all the time and what do I get...breastmilk.

2. I have a buddha belly - I gained 1.5 lbs this month - weighing in at 4 lbs 14 oz.

3. I graduated from Preemie XS diapers to Preemie S diapers.

4. Mom held me for the first time and I had my eyes open the entire time (July 3, 2010).

5. I'm an eater! I went from eating 1 oz/day to eating over 10 oz/day.

6. They removed my PICC line (July 16, 2010) which means that I get all of my nutrition from breastmilk.

7. Daddy held me for the first time (July 23, 2010).

8. I finally got off of the Jet Ventilator (July 27, 2010) and I am doing great on the conventional ventilator. They are thinking that I will be extubated in the beginning of August.

9. I wore clothing for the first time (July 31, 2010).

Please keep us in your prayers as we try to make some big changes in preparation for our move to Minnesota. It probably won't be for a couple of months but we are going to work really hard on growing so that we can be with our daddy again! Mommy will keep you posted on our progress and probably even list our progress again next month.

Love,

Makaio and Kekoa

Blessings of Joy

On July 18, 2010 Sterling gave the boys a name and a blessing. We tried to include as many people as possible by utilizing a wonderful thing called Skype. A big thank you to Dad, Mom and Waleryan for travelling so far to share this special day with us and to all of you that put up with our lack of knowledge regarding Skype. It was a wonderful day for our family and we are grateful to everyone for your love and support.

Here are some pictures from that day.

Dad and Kekoa

Dad and Makaio

Dad, Mom and Kekoa

Dad, Mom and Makaio