March 31, 2009

Brothers Reunited

video
Charlie and Ambrose are together again for the first time in almost seven weeks! They spent most of the afternoon catching up and reminiscing about old times.


Since they can both maintain a normal body temperature in room air, they were moved to an open crib. Also, both were weaned from the caffeine today which had been helping to keep them from having apnea spells or dropping their heart rates; the doctor thinks they should do fine without it now.


Proud Big Brother

Charlie with his Daddy
Charlie has been taking all of his feedings from a bottle, but he still has the feeding tube in place for when he gets too tuckered out to finish all 36mL. His nasal canula has been removed and he may be ready to come home in a few weeks.

Ambrose with his Mommy
Ambrose has been taking his feedings from a bottle several times a day. He needs to take all his feeds and be weaned from the oxygen before he can come home.

March 28, 2009

John Paul spends the afternoon with his brothers

Charles in an open crib.



John Paul feeding Charles.

Both boys are doing well in Intermediate Care. Ambrose is able to bottle feed twice a day and has been tolerating it very well. Charles was moved to an open crib and can take a bottle at every feed. He is also closing in on 4 pounds in a few days!

John Paul went to visit his little brothers today and had a great time. He really wanted to hold Charles and we let him do one of the afternoon feedings. John Paul loved it! He spoke sweetly to Charles and told him about all the toys and fun things they would do when the boys came home. Charles was at peace the entire feeding and kept looking up at his big brother with wide eyes.

March 25, 2009

Intermediate Care

Daddy gives Ambrose a bath.

Charlie in cowboy horsey-feet jammies.

The twins have officially graduated from the NyICU!
They are now living in the Intermediate Care room down the hall, for "growers and feeders".

Both boys are pros taking milk from a bottle: Charlie 4 times a day, which is half of his feedings, and Ambrose did very well with his first attempt to bottle feed tonight, taking about 12mL in 20 minutes. Daddy was there to feed him and give him a bath tonight. Ryan was very excited to hold Ambrose for the first time. He tolerated it very well and seemed to like being out of his bed doing "big boy" things. Ambrose didn't seem to mind either ;)

Mommy returned to work today. I received a very warm welcome from everyone. All the attention was a little overwhelming after coming out of hiding, but the day went very well and I came home exhausted.

March 21, 2009

Charlie Takes His First Bottle

Charles wide-eyed and hungry!

Proud Daddy with Charlie - all tuckered out after his feeding.

Charlie after his diaper change.

Mommy washing his face and changing his diaper.

Ambrose resting without headgear.

The last four days or so have been huge for the boys. Last week, Ambrose had his vent removed and was placed on a CPAP. It soon became obvious that the CPAP nasal prongs bothered him and that he was uncomfortable. The doctor then decided to try Ambrose on a high-flow nasal cannula without any assistance from a vent or a CPAP. He would be breathing on his own. Once the change was made, Ambrose was placed on his stomach, which is less work for his little lungs, since gravity helps, and he remained at stable levels throughout the night and continues to do well on his own today. He is receiving 4 liters of oxygen per minute and his Fio2 is between 25%-38%. He is now up to 26ml of milk every three hours and currently he weighs 3lbs 2oz. There seems to be some interest on his part to start to bottle* feed, so he may do so fairly soon.

Charles is also on a high-flow nasal cannula and receiving 1 liter per minute, usually at 21% (room air). He still has his apneic episodes, but not as frequent as before. Yesterday we were told that Charles was ready to try and nipple feed. The nurse prepared a bottle of 32ml and gave it to Gina. Charles was so alert and happy when he was taken from his isolette. When the bottle was given to him he began to suck and drink milk and look around at all the onlookers. He drank about 16ml and fell asleep. It was cute to see his little throat moving up and down as he took sips from the bottle. It was enough milk to call the event a success!

Everyone is amazed at how far the boys have come, especially since they are 41 days old today and their due date isn't until May 1st! It helps to have such wonderful nurses attending to them. They become so familiar with the boys that they are able to suggest to the doctors that one or another therapy may or may not work. With Ambrose, one of his nurses felt confident that he would be able to breathe and be more content off the CPAP and on a nasal cannula (and the doctor agreed!).

Two friends of ours from Spain flew in to see the boys this past week. They were so excited to be in the NICU and see all the changes that have taken place over the last four days or so. It was a wonderful experience for all of us.

Thanks again for all the prayers and please keep praying. They still have many steps to take before they are ready to come home....so do we!

Gina and Ryan
*The boys can be taught to breastfeed later, but for now the bottle is necessary because they require preemie-size nipples and also for measuring the amount of breastmilk they are taking.

March 15, 2009

March 12, 2009

Ambrose is vent-free!


Today when I stopped by to see Ambrose after work a few nurses were gathered around his bed. They told me I came at a great time, because they were just getting ready to take his breathing tube out. The doctor said that Ambrose has been doing wonderful on his blood gas draws and they think he could be ready to have the tube removed. They let me know that he may not be able to tolerate not being on the vent and that this was only a trial run. The Respiratory Therapist took the tube out and told me I could take a picture of Ambrose, since we haven't seen him without any tubes in his mouth since the first few minutes after he was born. I only had by phone with me, so the picture isn't as great as it could have been. It was great to see him without any tubes in his mouth. He did have a piece of tape above his upper lip, but it was left in place, because he was then put on a CPAP*. He still requires some pressure, but once the CPAP mask was placed he did really well. One thing that was funny was that he didn't know what to do with his mouth! It had been open with tubes stuffed in it since the first day he was born. The nurse pushed his bottom lip up to close his mouth and he practiced opening and closing it on his own. It was really cute.

He may or may not remain off the vent. There are a few factors involved. He will need to have low CO2 levels in his blood and be able to keep his oxygen saturation levels high. His O2 concentration was at 37% when I left and if he needed to go to 50%, then they would take another blood gas and see if he should go back on the vent. Breathing on his own will take a lot of effort for him and he will tire much easier than before. Overall, though, he looked really good for the hour I was there after he was extubated.

Gina will put up more pictures as soon as we have some. Right now he is wearing a soft mask around his head with straps in the front to hold the prongs in his nose.

-Ryan
***When infants are disconnected from a mechanical ventilator, they often require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own. (http://kidshealth.org/parent/medical/lungs/aop.html)

March 11, 2009

Kangarooing Ambrose



The boys are one month old and doing very well. It is really amazing how things have progressed over the last three months. So many people have described our ordeal as miraculous. One nurse told me that when she heard that Ambrose had ruptured at 20 weeks and wasn't born until 28 and then survived to 32 without any brain bleeds, she was amazed.

I was finally able to kangaroo Ambrose on Tuesday for the first time and he tolerated it very well. He is taking 24 mL of breast milk 8 times a day, and weighs 2 lbs 12 oz. Charlie is taking 26 mL and is 3 lbs now. They both take their feedings through tubes, but soon Charlie will start to learn to use a bottle. Hopefully Ambrose will come off the ventilator soon and then he can start to learn to use a bottle as well. They don't develop the skill to suck, swallow, and breathe until about 34 week’s gestation.
------------------------------------------------------------------------------------------------
Evening Update:

Today the boys had an eye examination and it sounds like everything looked good. They will be tested every two weeks from here forward. The nurse said that it's almost unbearable for them to watch the eye examination, because, after numbing the eyeball, the doctor uses a metal tool to "grab" the eye. She said the boys did really well throughout the exam and didn't need much O2 assistance.

Gina received an email today from her mother in Jerusalem, where she has recently been on pilgrimage visiting many sites of the Holy Land. She let us know that she went to the Western Wall or "Wailing Wall" and placed pictures of the twins and prayers into one of the cracks in the wall. Now their intentions have been placed near to where our beloved Pope John Paul II prayed in 2000. Which reminds me...let's not forget to keep Pope Benedict in our prayers as he will travel to the Holy Land in May.

So many people have told us that they are praying for the boys and that they often check the blog to find out how the boys are doing. We've heard there are lots out there: prayer groups, prayer chains, parishes, co-workers, Gina's students, friends and family all over the country, the city of New Haven, CT apparently!, friends in Germany, Switzerland, Spain, Italy, Canada, Turkey, and so many people we've never met, all hoping for these little boys to pull through and make it home. We are greatly humbled and our hearts have been forever transformed by the love and concern that we have received for our little babies.

If anyone wishes to come visit the boys, just email us and let us know. Gina will return to work on March 25.

Congratulations to Jalen and Irene on their recent engagement!

March 06, 2009

Booties!

Ambrose got new booties!


Charlie's awake!

March 05, 2009

Doing Well







These pictures are all of Ambrose today.

Sorry we haven't written anything for almost a week. The boys seemed to plateau and not do anything exciting for quite a few days. But, finally, there was a little action to write about! Overall, both boys are doing pretty well.

Charlie weighs 2 lbs 13 oz today. He is taking 23 mL of breast milk with 24 calorie fortifier every three hours. He is still battling apnea and likes to hold his breath for long periods of time, scaring all those around him. He had a pretty significant spell a few days ago when he stopped breathing for a full 35 seconds. They have raised the head of his bed because they think reflux may be aggravating his apnea. Ryan was able to hold him for a little while yesterday and lately he has showed interest in the pacifier (Charlie has, not Ryan).

Ambrose is 2 lbs 9 oz today. He is taking 20 mL breast milk with the 24 calorie fortifier every three hours. He is much happier on his new ventilator, which allows him to take some breaths on his own. It helps him breathe while not doing all the work for him. Every 6 hours they massage his little back with a hand-held vibrator to help loosen up and suction out the secretions that build up and collect in his airways.

Two days ago, Ambrose decided to make his day nurse work a little harder in the last two hours of her shift. Somehow, he managed to extubate himself. He either lifted his chin real high or pulled the breathing tube out with his hand. It caused quite a commotion in his little pod. Especially, since the only free bed available was about to be filled by a newly born (pink!) baby. The staff were running about getting things ready for the new one, then Ambrose decided to add to the excitement. He may have actually been jealous and wanted to shift some of the attention back on him! The nurses had to intubate him again and, after that, he rested peacefully the rest of the night. He did so well, in fact, that last night I was able to hold him for the first time. He opened his eyes for me and looked up at his mommy. He sure is a sweet little guy.

We try to visit the twins each afternoon and one of us, if not both, returns to see them in the evening. The day shift is a lot more hectic, with more doctors, surgeons, nurses, and parents running around. The evening is very different and allows us to spend more quality time with the boys. Sometimes during the afternoon visits we almost feel like we're in the way. We never feel that way in the evening. It's interesting.

Thanks again to all of you who are still praying for our family. And thank you to the brave ones who have kept John Paul and Josef for us, so we can go visit the little ones. You are all in our prayers. We have a great appreciation for your interest in the amazing journey of Charles and Ambrose. It's humbling to know so many people care about them and want to know their status each day. Don't forget...this Sunday the boys will be one month old! Whoa!

-Gina