April 29, 2009

Ambrose Moved to Open Crib

On the Scale

Two days ago Ambrose was moved to an open crib. He had been maintaining his body temperature in the isolette for some time and the P.A. felt he would do well outside of it. So far he's handling it very well. One of the best things about it is that it provides easy access to hold him. The nurses have all said that Ambrose likes to be held now. A miracle in itself! He used to be so sensitive to the touch, but now nurses are telling us that they sometimes hold him for hours at a time. A Respiratory Therapist even told us that she held him last night for over an hour! She's not even his primary nurse. Well, it's great news for us.

His weight is currently 2390 grams (5lbs 4oz). Just about a 1/2 pound less than Charles. Ambrose is taking 40cc of breast milk with human milk fortifier @28cal every 3 hours. He should start to bulk up any day now. Just wait. He started the week at 4 liters per minute of O2, but has now been weaned to 3lpm.

The home front has been very difficult these last few weeks. We haven't had one day without someone being sick. John Paul had pink eye in both eyes and a cold on top of that. The week before he had strep throat. Little Josef has had one thing after another. He's been to the doctor 3 times in the last three weeks and to the pediatric urgent care (where after paying $100 and not being adequately seen, he was given an Otter Pop as a solution to his ailments!). He had an ear infection in both ears a few weeks ago. Then he had it again, but in only one ear. Now he has white blisters all over his tongue and mouth. Really ugly looking, too. He cries every time he eats. It's heartbreaking. Now the worst part. My poor (cute) wife has now picked up some of Josef's symptoms. She's sick, too, with sores on her tongue like him. She's doing the best she can at home taking care of Josef, Charles, and herself, but sometimes she's completely spent just taking care of Josef. Once we can get clear of all these illnesses, I think everything will go much more smoothly. We've had Charles home for almost two weeks and we've basically had to quarantine him from the rest of the family. Poor guy. To make matters worse, in the last month or two we transitioned Josef to a toddler bed in John Paul's room. Well, he's having a hard time staying in his own bed and wants to come back to Mommy and Daddy's room. Unfortunately, with him being sick and the baby in our room, he's had a really hard time adjusting. Sometimes, in addition to the crying and screaming, it takes up to two hours to get him to bed at night, then he's up every half hour or so after that. You can imagine how hard it's been on us, especially going to work on two hours of sleep. Please pray for little Josef. He's such a cute boy and we hate to see him so sick and sad at night. And if you're wondering how Charles is doing at night, besides all the straining and grunting to poop, he's doing wonderful! He sleeps great and wakes every few hours to eat. Sounds a lot like Gina, huh?


Today our John Paul turned four! We no longer have four kids under the age of four! He requested waffles this morning and he received them with candles and a gummy bear vitamin. He's pretty easy to please. His entire school sang Happy Birthday to him at their assembly first thing this morning. Unfortunately, possibly because Daddy let him stay up too late the night before, he was shy and embarrassed and cried in front of the whole school and throughout his birthday song! It was secretly really cute though, but we didn't let him know it was.


Ryan

April 25, 2009

Ambrose off Vent


Yesterday, in a bout of rebelliousness, Ambrose extubated himself! The plan was to move him off the vent this morning, but since he pulled the tube out last night, he was placed on nasal CPAP. This morning, after a good blood gas, he was placed on high-flow nasal prongs at 4 liters per minute. He also managed to pull the IV out of his scalp. It has since been put into his arm, where he'll receive two more days of antibiotics. He seems to have recovered from pneumonia, which was apparantly the cause for his return to the ICU and the ventilator on Holy Saturday. There's been talk of moving him to an open crib again. So, hopefully, we're back on track towards taking the little guy home.

Ambrose's lungs are continually improving and will continue to for up to three years (that's how long it takes the alveoli to fully regenerate). However, his lungs are smaller than they should be and he will probably continue to have that deficiency lifelong. He also has a ridge from the endotracheal tube pressing against his palate, which may have orthodontic repercussions later.

We have already had a preliminary interview with AzEIP who will be evaluating both boys regularly for their first two years. Even though they are almost three months old, they are really just newborns; therefore they have a three-month developmental delay. AzEip will offer us support and services to help us to close the gap between the boys' chronological and adjusted ages by age two.

April 21, 2009

Charlie's lovin' home




The twins are ten weeks old and their due date is a few weeks away yet.

Charles is happy to be home and eats and sleeps like a champ (like his mom). He weighed 5lbs 4oz on Friday and will weigh again on Thursday when he goes in for his circumcision. He is just so tiny, especially now that he's out in the world among normal-sized things. He hid from Dad the other day: "Gina, where's the baby?" "In his crib." "No he's not. . . oh, here he is" (he had slithered into one of the corners). The big brothers haven't destroyed him yet, which is good. I think they forget he's even there, until he emerges for a meal. Then suddenly everybody needs Mommy. So they're having to adjust and take turns. I need one of those take-a-number spools like you see at the meat counter.

Ambrose has a long road home and still needs your fervent prayers. He is just worn out and taking a break until he can muster his strength to start fighting again. He weighs 4lb 12oz today.

April 16, 2009

DAY 67: CHARLES IS HOME!




Thursday, Easter Octave: After watching all the discharge videos and reading line-by-line of the discharge papers, Charles has finally been released to come home! 67 days in the hospital! It's been quite a stay for this little boy. He hung in there when his brother's sac ruptured, recovered each time he would hold his breath, held strong when he was separated from his brother, and even managed to look manly when given the occasional pink blanket.

We're really happy to have Charles home and are looking forward to the day we receive his brother. Ambrose still has a lot of ground that he needs to cover. Last night was a rough one for him and for the nurse. He weighs 4lbs 8oz. He's still on the vent and receiving 40 assisted breaths per minute. Occasionally, he'll take some breaths over the vent, but, most of the time, he's resting. He had been receiving antibiotics when it was thought he had an infection, but all the test results and cultures have returned negative, so they have been discontinued. Initially, when he returned to the NICU from Intermediate Care, we felt very discouraged. It meant having to go through the first 6 weeks all over again. We understand that him returning to the NICU means that he still needs to rest and to go slow. We don't want to rush him into breathing completely on his own if he is not ready. We'll continue to pray for his recovery and we'll patiently follow him until he's ready to come home.

April 12, 2009

First Easter

Ambrose has had a harder time breathing over the last week than the previous few. His lungs are still looking pretty bad on the x-ray, they seem to be carrying a lot of fluid. The doctors are treating for infection with antibiotics, even though infection has not yet been confirmed. He is also sedated so that he can rest and not fight with his ventilator. It is very discouraging for us to see him take a sudden dive like this, after all the progress he has made. He may just be weary and fatigued from fighting so hard for so long. Or it may be side effects from his immunizations. Whatever it is, he is very sick and our hearts are breaking for him.

Josef with his Easter basket.


John Paul splashing.
video

April 11, 2009

Ambrose back in ICU

Ambrose was moved into the NyICU today and placed on the ventilator once again. His arterial blood CO2 level is very high and his lungs don't look too great in the x-ray.

Charlie has been having apnea and bradycardia spells pretty regularly so he won't be discharged this weekend.

April 07, 2009

2 Months Old!

Ambrose and Charlie with Grandma Iker


Charlie with Grandma Randall

Charlie with Aunt Regan

video

Josef gives Ambrose his binky

Charlie is getting his vaccines this week and may soon be ready to come home. Monday they said maybe on Wednesday; Tuesday they say maybe on Friday. One nurse told me not to count on him coming home until he's actually in our car and we're driving away. Either way, it means he's doing well, like my mom said, "almost like a real baby." He's taking 60mL breastmilk every 4 hours and is allowed to breastfeed, "when mom is available" is what it says in his chart - sorry, Ryan. His first attempt went very well, he latched easily and nursed for longer than I expected. He is weighing 4lbs 9oz now and is 16.5" long.

Ambrose takes 35mL breastmilk every 3 hours by tube, weighs 4lbs 5oz and is 15.5 in long. He had been taking two steps forward until this weekend when he took one step back. His breathing was labored so his O2 and liter flow were increased. That didn't seem to help much so he's been receiving breathing treatments of albuterol every 6 hours. An echocardiogram was performed Monday which showed that the PDA has closed and the pressure in his heart is normal. Better that the problem be respiratory and not metabolic because the lungs recover more easily than the heart. He was also given another blood transfusion so that the additional red blood cells could help him to circulate the O2 more effeciently. That seemed to help and he is doing a little better Tuesday. He will receive his vaccines starting Wednesday.

Their Great-Grandparents Towry are driving in this week from Alabama to visit and spend Easter with them.

Have a blessed Holy Week and a wonderful Easter!
-Gina