Todo el mundo is wanting to know about my little nietas hemangioma story. Miren, I had much interest in the Sippy Cup post so I’m going to share more of Rachels experience, because it was definitely un besito de Dios, for my daughter in-law Denise also.
Rachel was born a few days before her due date, she weighed in at just over 6lbs. and 19 inches long. All was well when she went home from the hospital the next day.
On their first day home Denise noticed that Rachels bottom lip was tight,and red on the right side. She also felt excruciating pain when the baby couldn’t latch, this was just the beginning.
Protocol required that she take her baby for a followup within 2 days of birth and Denise was relieved, she needed to know what could be happening to her baby.
It was a routine check up. All was well, the doctor said, Rachel was fine, and she had been, no signs of pain or distress other than the issue with nursing which brought up the question of the tight, red and a little puffy skin on the area of her lip. The doctor re-examined her and concluded that her lip was simply chapped! Nothing to worry about, a little balm on it would heal it right up. Oh! And be sure to schedule Rachels 2 month appointment. Pero, algo estaba mal. Denise felt uneasy about the baby.
After the appointment Denise asked others about the red mark and soon discovered it was a ‘strawberry birthmark’. She began to research strawberry birthmarks. Everything she read said that they were harmless. She learned that it would grow and eventually after a few years it would most likely fade. This helped ease Denise’s anxiety.
Denise had her 6 week appointment and her gynecologist confirmed that it was “a strawberry birthmark” As the days progressed, Rachels birthmark had spread across to half her lip and down her chin and it had puffed up, but still she was ok.
Two Month Appointment
Rachel was 2 months old and her birthmark was dark red and puffed out. When the pediatrician saw her she was surprised at the size and rate it was growing, just a little concerned she said she would give her a referral for the dermatologist, there she could get a cream for it.
One look at lil Rachel and the specialist knew that it wasn’t just a strawberry birthmark. Rachel was dealing with a hemangioma which is common and more so in girls and caucasion children. Pero mira, What I didn’t tell you is that because of where the birthmark was situated, on her lip, it was probable that she could be dealing with a more severe and rare condition called PHACE syndrome. “the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries.” Ya se imaginan how my poor daughter in law must have felt. The doctor needed to find out immediatamente which, if any of Rachel’s organs were affected, her life depended on it. An MRI and several other major tests were requested. She would have to go under anesthesia to endure the testing. Luego! To make matters worse, her skin had stretched to such a degree that it had begun to ulcerate.
As the family waited for an opening for the testing, Rachels ulcers grew deeper and with it came pain. It was so difficult for the poor baby, whenever she nursed she yelped in pain, then she began to skip meals. Dios mio!, how difficult it was to watch our baby suffer.
The day of the testing fue un dia largissimo! A long and almost too hard to endure day. My dear 2 month old nietecita had to fast for 12 hours and be sedated for the tubes to go down her nose, a camera that would reveal her internal condition. Oh what immense relief it was to discover that her organs were fine. Now, the doctors could implement a plan to control the rapidly growing hemangioma with a strong medication called Propranolol Hijole! Such a strong medicine but now there was the issue of the open ulcer that was continually open and painful.
The medication was started immediately, but en realidad, the more urgent matter was the desperate pain lil Rachel almost constantly felt. The doctor had also prescribed a numbing gel that relieved her for about 45 min when applied. Things were getting desperate.
(Around this time, the sippy cup story took place.)
During all this time, Denise and Jonathan (mi hijo) were doing all they could to keep life as normal as possible. The older 2 girls were feeling the absence of their momma. Many evenings Denise sat in their dim lighted bedroom comforting Rachel. In the midst of all this, like a spring bouquet, the family was having a wedding. My nephew Emmanuel (aka Meño) was to be married to our unofficially adopted daughter, Sierra, Oh happy day! Meño is a loyal primo, he picked Jonathan to be his best man. Hemangioma or not! Jonathan would do all he could to help his cousin on his wedding day while helping Denise take care of Rachel.
Just days before the wedding, things hadn’t improved for Rachel, in fact, the hemangioma was quite large and the ulcer was constantly open. Laser treatments had only left a deeper gash on her lip and didn’t help. The doctor had pronounced that another level of treatment was needed. An infusion of the medication would be introduced the following week, the infusion would reach her heart quicker and thus hopefully affect the hemangioma and stop it from growing. ¡Qué desesperación! What a desperate feeling to see your baby in so much pain and growing disfiguration,
Denise was desperate, the doctor’s solution was not her only hope. She clung to God’s word and allowed the popular song Even If by MercyMe to comfort her. Through tears and desperate cries while the family prepared for the wedding, she held and comforted her baby and cried out to her God. “God I know you can, you are my hope, regardless of what doctors tell me. I’m gonna pray everytime she cries, I’m gonna beg until you do something Lord, because you’re my God.” The Wednesday after the wedding, plans for the treatment would be set.
Wedding Day Miracle
“Even if” tears came on the Sunday morning of the wedding, Denise knew there would also be tears of joy on Meño and Citas wedding day, she dressed her girls, then herself joyfully.
In Jesus People weddings everyone is invited to the ceremony. The bride is not necessarily the center of attention. although all eyes are on her. In that beautiful magical time while the bride and groom look into each other’s eyes and promise themselves one to another “til death do them part” Rachel rested, the numbing gel had not worn off yet, so Denise breathed easy, sighing as the groom kissed his bride. Mr. and Mrs. Zepeda were introduced and the cheer went up, Rachel stirred.
In the midst of hugs and kisses through joyful tears, someone bumped Rachel and we all froze. Seconds seemed to drop noisily as we waited. Que?! Where were the piercing cries? Denise took her quickly to nurse her. Since she still hadn’t cried out in pain she would wait for the numbing cream. Despite all the commotion of a wedding reception somehow both Rachel and Denise were at peace.
At home that evening Rachel still hadn’t needed the relief gel medication. She nursed and was quite content even though her ulcer was quite open and messy. The next day Rachel was still muy agusto, nursing and happy all day long. Denise was so relaxed herself that it wasn’t until she looked down at Rachel in her arms and saw a line across the ulcer of her lip. It was closing! That’s when reality hit her. Jesus had healed Rachel! Since the day before at the wedding she hadn’t had piercing painful cries and she was nursing without a struggle. Y ahora, she could see the wound beginning to heal.
The next day, Tuesday. Jonathan took his family to SeaWorld to celebrate.
Now they couldn’t wait to see the doctor the following day.
At the doctors office, Denise could not hold it in. The moment the doctor walked through the door into their examination room she blurted out “She has no more pain! Jesus has healed her” But of course the doctor must examine Rachel, after all the strawberry birthmark deformed by the ulcer was still very visible. The doctor speculated that perhaps the medication was taking effect? That couldn’t explain how the ulcer was closing and the pain was suddenly and completely gone.
While I am eternally grateful to doctors for their hard work, on this occasion God stepped in to help our little Rachel. It is our wedding day miracle.
Rachel Daniella’s first 3 months of life were incredibly difficult but as soon as God healed her, she got on with her living. She is no longer the baby, but a big sister and she’s well into her kindergarten year and absolutely loves it. Denise swears by Abeka Academy for her homeschooling needs. If you look closely at Rachel you’ll see the scars of the days gone by and I can only thank God for his goodness always.