Yesterday Ambrose switched from a Jet Ventilator to a conventional vent. We went to the hospital during the switch-over and great care was taken while the vents were swapped out. His pressure is still a little high, but he seems to be tolerating it. The team is monitoring him closely, in case it's too much for him. This is a great sign of progress for Ambrose. The morning nurse told us that he didn't have any breathing problems all night. She even mentioned that Gina may be able to hold him today!

He is up to 5cc of milk every 3 hours, with only a little residual and spit-up last night, so they skipped one of his feedings.

Charles is still doing very good. He had his PICC line removed a couple days ago. He is at full feeds with 24 cal fortifiers and caffeine.

Charles awake and with Gina


Today we were told that Ambrose's right lung was not functioning at all. There was no air and it had possibly collapsed. The nurse told us they were going to go ahead with the procedure (Selective Intubation) that was cancelled last week. They moved his breathing tube lower into his right main bronchial to reinflate the right lung. His left lung was then expected to collapse. After they did the procedure, we were able to view the x-ray. It appeared there was a small amount of air in the right lung, but the doctor still had to review it. The left still looked bad, but not like the right.

Charles had an evaluation today by a Physical Therapist and an Occupational Therapist. His right foot turns outward to the left and should be flexing straight up and down. It's just a small movement that he does and could have been caused by his position in the uterus. They are going to have him in a splint for two hours and then off for two hours throughout the day to see if that helps.

Gina was able to hold Charles a few times this weekend. Today he had his eyes open for her and even groaned as she went to put him back into his isolette. He was very cute.

We hope to find out more information on the plan of care for Ambrose's lungs.

God bless you.

Kangaroo Baby

I was able to hold little Charlie last night. The nurse helped me stuff him into my shirt, where he lounged happily for almost 3 hours. He would have stayed there forever, but I had to go home and go to bed. I'm going back for more today. By this time tomorrow he will be receiving full feeds (17mL) every 3 hours, so he won't need his PICC line anymore. They're going to cancel his fluids and IV nutrition and just add Human Milk Fortifier to the breast milk which are kinda like a Jamba Boost of calories and calcium and other supplements.

Ambrose suffers from chronic lung disease, which the doctors are trying to manage. They even phoned and spoke to Dr. Bunnell, who developed the Jet ventilator, to see if he had any suggestions for Ambrose's care. There are different things they can try as far as adjusting the settings and such, but there's really nothing else to be done for him; we'll just have to wait and see how well he works through it. Even though his lungs are in very poor condition, they do continue to develop and repair themselves every day. But on the other hand, the ventilator causes continual damage as well. Sort of a "damned if you do, damned if you don't" situation, to quote the nurse practitioner. So we just continue to pray and hope for the best, while preparing for the worst - same as we have been since December.

Procedure Cancelled

Today we were told that, after reviewing this morning's x-ray, the doctor has cancelled the Selective Intubation procedure, due to both lungs now appearing to have Chronic Lung Disease. The plan is for Ambrose to continue receiving nutrition and grow. The nutrition will add more calories, because his body uses more energy than normal to breathe and to fight infection. He will also receive diuretics to eliminate excess fluid from building up in his lungs. Another thing the doctor mentioned was that he will try to decrease the O2 and allow the CO2 to increase a little to make the blood more acidic.

Charles is now down to 1/2 liter of O2. He is done receiving TPN and Lipids and will progress to Dextrose. He is doing well with his feeding and is now up to 13cc every three hours. We will go to the hospital tonight and, hopefully, Gina will have the opportunity to hold him for the first time.

Ambrose is proving to be quite the little fighter. As bad as he's doing, he still continues to throw his arms into the air swinging left and right. Apparently, he's not done yet. He appears to have a few more rounds in him and is refusing to go down without a fight.

We continue praying...

Ambrose Procedure

On Thursday, Ambrose will undergo a procedure for his P.I.E. (Pulmonary Interstitial Emphysema). The doctor said today that the procedure is necessary, because Ambrose has small "air bubbles" in his lungs and his left lung is getting worse. The procedure is called Selective Main Bronchial Intubation. I was told it's more like a therapy. The doctor will move the breathing tube a few centimeters down from the center of the trachea into the right main bronchus, which will cause the left lung to collapse. The doctor is hoping that the pressure of the collapsed lung will force the air bubbles out. The amount of time the lung will be collapsed will be determined by the doctor and how well Ambrose is able to maintain breathing with only one lung. The doctor also mentioned that he's never performed this procedure before nor has it been done at this hospital.

As you can imagine, this brings a lot of stress and worry to us. We're still hopeful that he will pull through and keep growing---getting stronger every day.

Charlie is doing well, is up to 12mL of expressed breast milk four times a day and had "two giant poops" today according to his nurse.

Today our 3 year old, John Paul, had his first experience with snow. His Grandpa took him up to Flagstaff to go skiing! He was so happy when he came home. Mostly he was excited that he went FAST down the hill and that he rode the swing (ski lift)!

Gina is doing well at home. She's been able to spend lots of time with Josef. She's patiently waiting for her doctor's appointment next week to see if she'll be cleared to drive again. If so, then she'll be able to spend more time at the hospital with the boys.

Please try to say a little prayer for Ambrose. I'm not sure what time the procedure will be, but any prayer at any time will be beneficial. Thanks!

Ryan

St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our son and ask Him to restore our child to health if such be His holy will. This favor, we beg of you through your love for all children and mothers.
Amen.

Daddy Holds Charles

At tonight's visit, Ryan had the opportunity to hold Charlie for about 40 minutes. He's super tiny and feels like nothing in your arms. He opened his eyes and looked up at his Daddy, who gave him a goodnight kiss.

The nurse called us at home today to get our permission for a blood transfusion for Ambrose. Premature infants often develop anemia for several reasons: they don't make many new red blood cells in the first few weeks after birth; their red blood cells have a shorter life than an adult's; and the frequent blood samples which must be taken for laboratory testing, makes it difficult for red blood cells to replenish (A Primer on Preemies).

One type of care St. Joseph's encourages is Kangaroo Care. Similar to "wearing" the babies in a sling, Kangaroo Care provides skin-to-skin contact between preemie and parent. Although it was offered to Ryan tonight, he decided not to expose his man-chest to the night nurses. Actually, he wanted to save that first experience for me.

Please continue to pray for Ambrose. He is still really sick and struggling. The poor little guy was in bad shape tonight, but the nurses were working hard to stabilize him.

1 Week Old!

Gina feeding Ambrose.

Well, the boys have made it through one week of life! We were very excited to see the boys today and to be bedside as the clock hit 5:01 and 5:02pm.

This weekend they celebrated St. Valentine's Day with decorative blankets and Charles even had a red cap! They've dealt with so much this past week. The ups and downs are still hard for us to get used to. As soon as things begin to look good, then one of the boys takes a small step backwards.

In the last few days, Charles has been receiving milk every three hours. He started at 1cc and was increased every 12 hours. Today he was going up to 6cc per feeding. There was some concern that his stomach was distended and some thought he had Necrotizing Enterocolitis (NEC) with bowel loops. After an x-ray was performed, it was determined that he was quite backed-up with stool and gas. The plan was to give him a glycerine suppository today to "free" him up. Also, he had his central line removed and now has a PICC line, through which he receives all his meds.

A couple days ago, Ambrose was taken off the Oscillator and placed on a standard vent. He tolerated it for a small amount of time, but the decision was made to move him to a Jet Vent. He is currently receiving 420 breaths per minute. The doctor also told us that he has Pulmonary Interstitial Emphysema (PIE), which is a leakage of air from alveoli into the pulmonary interstitium, lymphatics, or subpleural space, that occurs in infants who are being treated with mechanical ventilation. Today we were told that the PIE is getting a little better, due to some positioning of Ambrose's body and some changes to his ventillation, but it is still a concern. If this wasn't enough to deal with in itself, we were next told that he also may have a Patent Ductus Arteriosus (PDA). Simply, he has a blood vessel in his heart that has failed to close after birth and is sending blood from the aorta to the pulmonary artery.

On the bright side, Ambrose is no longer on the Nitric and had his chest tube removed the other day. His O2 fluctuates throughout the day, but he is most comfortable at around 30-35%. He has been receiving 1cc of milk since yesterday and seems to be tolerating it. He is still receiving Lipids, TPN, and antibiotics. Gina was able to change him today and give him his 1cc of milk. He had good bowels and even had consistent stools, which, given all the excitement over it, must be a very good thing!

Thanks again for all the prayers, especially all those from around the world. This afternoon we heard a wonderful story of school children in Granada, Spain praying for Gina and the babies. How beautiful is the power of prayer! Also, there have been numerous Masses offered for the boys. Today at Mass they were mentioned in the Prayers of the Faithful and brought tears to Gina's eyes. We continue to pray for each of you and your families.