Growing Up

Yesterday marked 32 gestational weeks and this last week has been a wondrous week of progress for each one of the babies.

All babies are now over 1kg, even Cienna, the littlest. The other three are over 3 pounds!

Thomas: 3 lb, 8 oz
Gracie: 3 lb, 3 oz
Cienna: 2 lb, 12 oz
William: 3 lb, 7 oz

All babies are currently on momma's milk only! In addition their PICC lines have been removed. They have also been growing. Here are their lengths at birth followed by their current length:

T: 14 inches, now 15.75
G: 13 inches, now 15.75
C: 11.75 inches, now 14.6
W:  13.25 inches, now 15.35

Most exciting is that Gracie and Thomas have been off the ventilator for about a week now! In fact, Gracie is on just 1 liter of oxygen from the wall. Cienna is still working on getting off the ventilator. Today they started her on a 5 day course of steroids (dexamethazone). On day three (tomorrow) they will try to take her off of the ventilator to see how she does. William is also getting weaned off his ventilator little by little as they lower the settings allowing him do more breathing on his own.

On Friday they each had an eye exam to check for Retinopathy of Prematurity (ROM, click here to read more about it). They are at high risk for this simply because of being born so young. So far the report is good but they will continue to monitor for this for a few more weeks. From my understanding, if a baby develops ROM it is quite treatable.

They also had their third brain ultrasound in which the doctors look for hemorrhaging. Again, a good report. Everyone is in the clear so far and they will not have another one until they are discharged. Speaking of discharge, one of the doctors thought that within 3 to 4 weeks the babies would be ready to go to a step down unit and possibly be ready to be transported back to Washington!

Here they are this week, wearing hats that were given to them by volunteers:

4 Weeks Old

Four weeks ago Thomas, Gracie, Cienna and William arrived! It has been amazing to watch them grow. As of last Saturday all of them have had their PDA surgery. Last Friday William finished his antibiotics and an echocardiogram revealed that his patent ductus was still wide open and his heart had enlarged in an effort to compensate so surgery was scheduled the next morning. This week he has been recovering and today he was able to be held for three hours, a great sign of him moving forward and doing well. When we provide kangaroo care (holding a baby skin to skin) we monitor the baby's vital signs to determine if it is a "good thing" or causing the baby stress. When it is stressful for the baby his/her oxygen saturation will drop and/or heart rate and respirations will increase. While holding William today his oxygen saturation shot right up and remained high! He looked so peaceful and happy.

Right now the babies are in the stage where they are learning to digest momma's milk. This is no easy task since they were born so early and the signal between the brain and bowels isn't firmly established. As a result, the babies each have a feeding tube and milk is carefully measured according to the ability of the particular baby to digest and process it. Thomas is in first place. Two-thirds of his nutrition now comes from milk and today he had TWO stools and both were no longer meconium but resulted from digested milk. By the end of the week it is possible that 100% of his nutrition will be from milk. Fifty percent of Gracie's nutrition is from milk and she is getting better at digestion. Cienna is getting about one-third and William is just starting up again since he had to be off all food due to surgery.

They are growing before our very eyes. This week...
Thomas grew 9 oz and is 2 lbs, 14 oz
Gracie grew 8 oz and is 2 lbs 13 oz
Cienna grew 8 oz and is 2 lbs 2 oz
William grew 6 oz and is 2 lbs 13 oz

Here are pictures of them taken the day after they were born followed by pictures taken this last week as well as a picture of me from what seems like a lifetime ago.

Thomas (top), Cienna (left), Gracie (right), William (bottom).
Thanks Josiah for the layout!

19 Days Old

There's nothing like walking into a NICU room and realizing that the four isolets that line one side of the room hold babies that all belong to you. When things are challenging and not going well, the staff will keep the mood light by saying, "Oh wait until they are teenagers and act up."

This last week we experienced lots of "acting up" from the little ones, as well as some good times. On New Year's eve Thomas and Cienna had their PDA's closed via surgery and Gracie had hers the following morning. This is a procedure that is done at the bedside. The NICU room is closed off and turned into a sort of operating room. (Click here to see a video of this type of surgery.) The surgery went smoothly for which we were very grateful. Closing the ductus enables more blood to go to their lungs and intestines and allow the babies to begin to grow and thrive. Post surgery the three had difficulty urinating. I've never prayed so hard for someone to pee. After a day and a half the good news finally came: Everyone had soaked their diapers and two had soaked their beds! We were relieved and proud! Even the doctor who had gone home had called in a couple times during the night to see if they had urinated and she was just as thrilled as we were. 

A couple days leading up to the PDA surgery we had been monitoring William. His white blood cell count was elevated to 50,000 and the secretions from his ventilator were yellow, indicating he was fighting a bug. In addition, the skin on his face began to blister in what seemed to be a reaction to the tape being used to keep the ventilator tubing in place. A blood culture was taken and he was put on antibiotics while we waited for the results. Eventually it was determined that William has staphylococal pneumonia. Thankfully he is responding well to the medication and today he was bright and chipper. In the meantime he remains on hold for the PDA surgery. "How on earth did he get the pneumonia?" is a question that is easy to agonize over since everybody goes above and beyond to be clean when coming in contact with each baby. At the end of the day I've come to the realization that we only get 99.9 of the germs and that the 0.1 percent that may not be cleaned off holds thousands of germs. 

Here are a few pictures from today:

Looking through the window into our NICU room while Cienna is getting her PDA ligation.

New Year, New Challenges

It is official: we are on the NICU roller coaster that most everyone who has had a baby in the NICU has probably had to ride. One moment everything is fine and the next moment it isn't. Over and over. Here is what it was like one day last week...

Thomas (who has been a champion breather) all of the sudden has trouble keeping his oxygen saturation up. Then his heart rate drops. The nurse uses all non-invasive measures to get him to perk up but nothing is working. I arrive at his bedside just as the doctor is preparing to intubate him so the ventilator will breath for him. This is a shock for me since he hasn't needed a ventilator up until now. Meanwhile, Gracie is chugging along and doing as well as ever. Cienna, small as she is, is on a ventilator but she is doing okay as well. Finally there is William. He seems to be trouble free at the moment.

By the time I check on the others, chest x-rays on Thomas reveal that his PICC line has perforated the vessel and the nutrition formula is now flowing freely into the tissue surrounding the lungs (called pleural effusion). According to both the doctor and the nurse this rarely happens, maybe 4 times a year. A needle is inserted into Thomas' side and 29 mL fluid is removed. In the meantime, William starts having trouble keeping up his oxygen and heart rate. An x-ray reveals snowy, collapsed-looking lungs (atelectasis) most likely from his patent ductus arteriosis coupled with his inability to inflate his lungs fully because of his prematurity. He now needs to be intubated as well. Before the day is over three of the four babies are on ventilators and only Gracie is well enough to be held.

This day was just a small window into what we had going on today, which is too complicated to describe right now. Thankfully Ben is here and we are able to process all the challenges together. Your prayers and thoughts are vital to us, thank you many times over.