Trache and New Crib !

As we knew might happen, Milagros was returned to the Ventilator after two days. She worked so hard those days to breathe more on her own but we could also see that she was really struggling. As parents we always hope for the best so it's no surprise that we took the news with heavy hearts.  She is such a fighter and I believe she really wanted to succeed but her lungs wouldn't let her.  At her last echocardiogram there was some improvement in the pulmonary hypertension,  it had dropped slightly, but for Milagros to be extubated she has a long way to go.  There are two other big updates : 1) Milagros has a spiffy new crib,  its a Pediatric crib and feels alot more like a real crib, it also allows us alot more room to interact with her !:2) the pulmonoligists have set up a tracheal surgery for next Friday,  this is a big deal and would replace the annoying tube in her mouth.  The tracheal tube would deliver oxygen through her trachea and allow full use of her mouth. This is also significant because if she can show improvement on the trache there is a good possibility she can come home in the next couple of months. 

Ventilator vs. Nasal Cannula

Milagros with her new Nasal Cannula 

The NICU jungle

With Milagros, we've learned to moderate our excitement during any milestone because with CDH and omphalocele babies there are always steps forward and often steps backwards. But today we couldn't help but wear our excitement on our sleeves when Milagros was removed from the ventilator. Since the day Milagros was born she has had a large, invasive, hard plastic tube run from her mouth to the top of her lungs. Milagros clearly hated this tube and her tongue was never able to fully extend out of her mouth because the tube was always blocking it. Today, she hasn't stop spitting her tongue in and out like a lizard and relishing her new found freedom of all of her mouth functions. The doctors, nurses and RTs have inserted a Nasal Cannula which is a supplemental form of oxygen support that is far less invasive and is inserted into her nose. Nurse after nurse came by to celebrate this milestone with Milagros as word quickly spread throughout the NICU. Milagros has a long road ahead, and the doctor was quick to remind us that babies often have a tough time with the transition and are forced to go back on the ventilator. Milagros has been breathing with the support of a ventilator since the day she was born, today at 10am when the vent was removed she took a big gasp, wasn't quite sure what to do and instinctually started breathing, again surpassing the expectation of her doctor. Mom and Dad's motto in the NICU is day by day ! We will pray for Milagros tonight that she be able to handle this big transition

Weekend from Hell

Milagros after a horrible weekend

This weekend was by far the most difficult Milagros has had. We almost lost Milagros 3 different times. We had no idea why she was checking out, but it was scary as hell. She would start to cry and lose oxygen and turn a dark purple, then her body would go limp. Respiratory Therapists and Nurses had to resuscitate her 3 separate times with a bagging technique where they manually deliver oxygen flow through a bag squeezed by hand. On Monday, Milagros's regular doctor came in and thought immediately to stop feeding breast milk and formula, apparently that is routine when a baby is in respiratory distress. God only knows why the doctors for the entire weekend did not stop feeding. On Monday morning we had a conversation with doctors that included removing oxygen support for her given that she appeared to be in so much pain and suffering over the weekend. We had hit rock bottom and everything seemed like a horrible option, we mentally and physically crashed and were exhausted. For each resuscitation we had been by Milagros's side signing and sometimes screaming for her not to leave us, while holding her hand and legs, caressing her head, it was a horrible experience that no parent should ever have to go through. It seemed as soon as breast milk and formula feeding was stopped on Monday and replaced by liquid electrolytes her situation really flipped on a dime. Yesterday and Today, her oxygenation is above 90% and she looks healthier. She is exhausted after this weekend and has been sleeping for what seems like the past two days. In order to avoid feeding into her stomach, nurses have placed a feeding tube through her nose directly into her intestine in order to prevent any major acid reflux event. For now we pray, count our blessings that Milagros is still with us. Pulmonary Hypertension and the affect all this activity has had on her heart are of serious concern. The strategy now is to try to stabilize and it feels like we are starting all over again. No baby should have to fight so hard, but Milagros is a fighter. Today her priest, her parents, brother and sister, cousins, grandparents, aunts, uncles and friends came to visit her by her bedside and continue to pray for her. we are blessed to have so much support for our angel. From the day she was born she has brought people together and maybe that is her message to us, that we have to stick together to get through difficult times, only Milagros knows what she is doing, the rest of us can just guess and cherish every moment :)

Milagros is currently on the following regimen of medications:

iNO - 20 PPM
Albuterol, every 6 hours
Biotene Oralbalance, as needed
Breast Milk / Formula, currently stopped
fentaNYL, constant drip and IV (every 8 hours)
LASIX (every 12 hours)
Heparin Porcine through PICC, continuous
ATIVAN IV, every 4 hours
Methadone, every 12 hours
PheNobarbital IV, every 12 hours
Ranitidine IV, every 12 hours
Sildenafil 7.75mg, admin dose, 4 times a day
TPN, continuos

Roller coaster

,

Milagros had a really bad night. Her oxygen levels dropped so low that she had to be resucitated; doctors, nurses and emergency personel filled the room. She was successfully brought back and has maintained stable oxygen levels for the last 8 hours or so. She has these bad episodes every few hours and they appear to be getting worse. On the other hand, when she is awake her eyes are wide open and she is the most playful she has ever been, what a roller coaster ! We spent the night in the hospital in a small room on the floor to be near her given that the episodes started to happen more frequently. We are still here at the hospital and the kids went back to ronald mcdonald houseclate last night. The charge nurse was kind enough to let Emiliano (baby brother) meet Milagros for the first time, he was so quiet and concerned, he looked at all of her tubes and into her eyes. Milagros was
wide awake and made direct eye contact with her brother for several seconds. The nurses said most babies cry when they enter because they can feel the pain in the room. Emiliano didn't make a peep, he blew a kiss to Milagros and waved to the nurses when he left, it was really a terrific moment for both of them. Milagros follows mom and dad with her eyes and enjoys us singing to her, she also is good at trying to conversate, even with all those tubes in her mouth. Today we will be at the hospital all day with Milagros singing, talking and praying with her ! She is such a beautiful fighter, her eyes and mind say yes and her pulmonary hypertension tries to make her miserable

Milagros had a rough weekend. Her right lung collapsed slightly and the nurses and respiratory therapists worked hard to get her lung up and running. Dr. Suki also has been trying to wean her off of the Nitric Oxide but Milagros did not respond well to that so they have since gone back up on the Nitric. Her oxygen requirement has also been very high the last couple of days, between 80-100% oxygen support from her ventilator. There was a time last week when she had gone down to about 50% oxygen support and his since required more help breathing. This has been a frustrating week, but a real BRIGHT spot has been that Milagros is really increasing the amount of breast milk she is taking, by tomorrow she will be at the maximum daily amount of breast milk she can take ! Baby Milagros has also been weaned from her sedatives so she is awake and a lot more active. She has the most beautiful eyes, they are curious and alert and she often laughs in her sleep. Her oxygen tube blocks her vocal chords so we have never been able hear her cry or laugh yet but she has plenty of facial expressions to keep everyone entertained. Milagros now weights 8lbs 10 ounces and has a lot more hair :) Mom continues to pump every three hours but Milagros will quickly take more breast milk than Mom can give so we have the option to use donated breast milk or formula, we haven't decided on either yet. Meanwhile, back at the Ronald McDonald house the whole family continues to enjoy free meals by local organizations and most importantly, connect with other families that have sick children. The Ronald McDonald house has been a god send, families with sick children can stay here while their children are cared for at local hospitals. Generally, families pay between $1-$25 a day for a fully furnished apartment. Their website can be found here : http://www.rmhc.com/

a picture of all the medications Milagros was once receiving after surgery

This past Saturday Milagros achieved another major milestone. Breast milk, la leche ! Milagros was administered through her stomach feeding tube a small dose of the breast milk that Chayo has been diligently pumping and saving at the Ronald McDonald house freezer for the past 45 days. Interestingly enough the doctors have started to use the milk in chronological order, so the milk from the first day Chayo pumped has been given to Milagros first. The colostrum is apparently so much stronger on the first few days and very important to Milagros's first experiences with breast milk. The power of a woman's body are amazing ! Milagros now has been on an increasing dosage of breast milk the last 4 days and has consistent stools and has been gaining weight. The Doctors strategy is to very slowly wean Milagros off of all of her sedatives, pain killers, oxygen support, lung medications and IV fluids, while increasing the breast milk. The doctors attempted to do this aggressively after the surgery and she did not respond well, so they had to start all over again, it has been quite the roller coaster ride.  Milagros is currently on about 60% oxygen support on the ventilator which means she is still receiving a lot of oxygen support and is not near being able to breathe on her own. They have however been able to wean her off one pain killer, half of her nitric oxide dosage, sedatives, and ventilator pressure and rate, she has been showing slow but steady progress.

 

Milagros recovering from CDH Surgery Repair

This Monday marks two weeks since the Pediatric team at Kaiser Sunset repaired Milagros's diaphragmatic hernia through open chest surgery. The anticipation and anxiety before and after the surgery was tremendous. The Surgeons were able to bring her intestine that had passed through the diaphragm and was suffocating her lungs down into her abdomen, were it belongs. They patched the hole in the diaphragm with a Gortex patch. Milagros took the surgery very well !! The surgeons also found a few big suprises : first a negative, that the liver had also slipped through the diaphragm and was putting pressure on her heart, the surgery also fixed this, the surgeons brought her liver back into her omphalocele and her abdomen. Secondly, nothing short of a MIRACLE, that Milagros had a full left lung that literally popped open as soon as the intestine was removed ! For those that remember, doctors had mentioned before Milagros was born that they could not visibly see a left lung on the MRIs, therefore her chances of surviving birth were so low. Well sure enough Milagros had been fighting this whole time to grow a full left lung even with the intestine smothering it's development, truly a miracle in the doctors opinion. The recovery after Milagros's surgery has been slow but steady, with bumps in the road. She is still heavily sedated, with high oxygen support on a ventilator and her pulmonary hypertension has not lessened significantly. She has some good days and some bad days, but she is fighting so hard to get better.........below is a simple picture of Milagros's CDH condition that I found helpful as a visual. I have also attached a photo of Milagros immediately following her surgery, you can see the gauze on the left side of her chest where the incision was made for the surgery