Congenital Diaphragmatic Hernia - Cecil Kobe Garbutt

         Cecil was very labile in the ending of July to beginning days of August, on HFOV (High Fregquency Ventilation) requiring high Fio2 and Delta P up to 48;weaned off NO (Nitric Oxide). Albuterol and pulmocort added were added to his IV medications. Respiratory status improved after starting low dose dopamine drip to keep systemic blood pressures above the pulmonary blood pressures, which significantly helped him to wean in his oxygen requirements from 70-80% to 25-35% which was great news, he was now requiring much less oxygen than before. the settings were changed from HFOV to SIMV. SIMV is still on the same machine but lower settings, therefore it is no longer doing the breathing but "assisting" with his breathing. He had less fluid in the area of his left lung.           He finally came off his sedation with versed drip , Fentanyl drip transitioned to Methadone PO meaning it is given orally, through his feeding tube. ...

       Cecil Kobe underwent Congenital Diaphragmatic Hernia repair on July 2, 2015. He did well for the first day but decompensated hemodynamically over the next 3 to 5 days and required ECMO. remember I explained that ECMO gives an infant a low chance of survival and recovery form CDH.      July 7, 2015 1:30 A.M sound asleep we received a phone call, Attending doctor for the night shift called to inform of the fight CK was putting up and they needed my consent to place him on ECMO. Waking out of your sleep to such terrible news is surely not a feeling I wish on anyone, being that I already knew what ECMO is and the effects of it on an infant made me anxious, mad and hurt all at the same time. I would not refuse for him to go on ECMO, without it he would die there and then, but with it there is a chance to make it. I had to take that chance and believe in God and his works. I gave them the go ahead for the procedure and neither his dad or myself could...

Hello Bloggers,          I must first excuse myself for my absence in posting. As his birthday passed and the hardest decisions and startling moments came closer in time of posting my heart was growing heavy and unable to simply express as I was doing before. Therefore, i decided to take a break and gather myself and to be reminded of the reason I blog and who is the focus in my postings. Cecil Kobe Garbutt! Day 3 in the life of CK Garbutt: July 2, 2015     Studies had proven to doctors and surgeons that repairing CDH immediately after birth lead to a very high percentage in the loss of infant lives. They now allow newborns to have stable vitals before any procedure is done. Day three 9:00 A.M I was released from the hospital. I had signed the papers for his surgery the day before so surgery had no specific time. Until after being released the surgeons were near his bed side when i passed by before heading to the apartment and expl...

  Cecil Kobe Garbutt June 29th 2015 Happy 1st Birthday In Heaven                                                             Auntie Jai, Cousin Kourtney & Mommy Glama, Ampa & Daddy                                                                                              Birthday Gifts, are being sent, on the ...

     Day 2 In the life of Cecil Kobe Garbutt was pretty much calm as he had continuous medication of sedation. Babies that are intubated cannot have a normal lifestyle of a young baby, they cannot move around, get hyper or excited and rarely even play. CK had a LOT of energy from when he was in my tummy, especially whenever I would take in my Caramel Frappe from McDonald, I craved McDonald Frappe Daily. Therefore, Sedation was a MUST. CDH babies have numerous tests and procedures that need to complete right after birth. Tests such as crays, blood tests, blood pressure, echocardiogram and other monitoring procedures which they were unable to do while in the womb. Inside the womb the ultrasound only shows CDH, generally, but does not show the severity, or how much work will need to be done when baby is born.        Remember I mentioned, he was born a little purple color and not crying, known as "Cyanotic" which some doctors do prefer they do not cry a...

     June 29th 3:00 AM was the last time i was touched with any needle or medication, they were simply waiting and giving my cervix time to dilate. 7:00 PM i was on the phone with Ms Eunice Garbutt, a family member when suddenly i felt this warm water flow down (My water bag broke). I was in shock that i even felt it since the lower part of my body was numb, I immediately asked for the doctors to come in and check me out. At the time i had no idea it was my water bag (first time mom) I just felt this warm water flow down and I asked them to come in, upon checking the cervix, I was up and ready to go. Doctors came in, Pediatricians, Neonatologist, Anesthesiologist.. My delivery team of doctors were gathering and CK team of doctors were arriving into the room also. 7:30 and we were up and running!      I wont go in detail here to the pushing and all that, but I do remember saying; "I cant breathe" and the nurse responded; "But you're talking, how can you no...

June 26th 2015 Derick arrived in Miami, Dinner date was very much needed to catch up and socialize and prepare myself mentally and emotionally for what's to come, only two days away! Saturday June 27th was a relaxing day to do little run around and shopping of stuff I might need while in the hospital. Still I did not feel I was fully prepared but what could I do? Just gotta get in there and do what's best for CK, all about him and not about me. Sunday June 28th 2015 3:00 P.M we went to a church service with Mr Luis in Ft Lauderdale, Florida. Coming out of church at 6:00 P.M we drove to downtown Miami which was 1 hour away. My schedule was for 8:00 P.M to start the process to delivery. Jackson Memorial Hospital (Women's Clinic). Checked in at 7:45, dressed in my gown, first time mom; thinking what the pain will be like what will be the outcome of my little boy and his health. Being a big hospital doctors and nurses Run around A LOT attending to other patients but, the ...

This week posting includes pictures from the Journey of CKG before Birth leading up to delivery date June 29th 2015. ENJOY!

Throughout my time  from June 10th  onwards I had weekly checkups with the OB Doctors being such a big hospital and a big country there was no 'one' specific Doctor to attend a patient each visit was a different Doctor but they all study the patients case before attending. Weeks of doing stress tests,ultrasound and blood tests. CK expectancy date was July 4th 2015, yes he was to be a  4th of July  baby. However, due to the fact that he was a CDH baby his delivery date had to be scheduled so as to have the entire pediatric team, OB Doctor, gynecologist and every other Doctor necessary for his arrival. Holtz Children Hospital is a properly equipped and prepared hospital, not only for CDH babies but for children with rare birth defects in general. On my check up for Wednesday June 17th 2015 I did a stress test and decided and the attending decided that I will be delivering over the weekend, 'totally uncalled for'.  I had zero clothing with me, not p...

June 10th 2015 Meeting with my OB Doctor. It was surely a long wait... and expense? Whooy, don't even ask. We all know what it's like for non citizens in the US.  The OB Doctor was very nice and friendly, he asked for a brief explanation of what I know, what I have been told by previous doctors, and what I understand about the situation I am in. As an avid reader I googled CDH and Youtube CDH survivors every hour of the day I had free I was reading about CDH, the process and what to expect during delivery. Even thou I read a lot it is nothing like actually going through the process and having that skipping heart beat. He did a general check up to a pregnant woman, and later an ultra sound to see how CK's heart beat is doing and the flow of the blood between his heart and his lung this is done through an 'Echo'. Babies with CDH tend to suffer from high blood pressure 'pulmonary hypertension' and the main concern with the blood pressure is the pressure...

May 21, 2015 Leaving Belize hand in hand with my mother in law, leaving all that we know about, all we have lived for and been accustomed to behind; was one of the hardest thing to do. It was so much different than traveling on vacation and returning months or a couple years after.  It was very much complicated, The air pressure in the plane could have me in labor before Landing, immigration might not understand the importance of me needing to be in the US, there could be complications in the delivery room and I will never see my family again. The things running through my mind at the time had two parts; the emotional wreck that I am experiencing as a daughter, a sister, a niece, a granddaughter and a girlfriend stood in front of the decision that I had to make as a MOTHER and the unconditional love I had for my Prince. Trying not to stress myself and to focus on my mission to nurture a gift sent from above, come what may, I will make it through with God holding my hand. Unf...