Of course offering are a lot of doctor arrangements. In the role of she was 26 days old we had sooner than been to 14 doctors arrangements (not all for her fortitude, but in addition to seeing that of jaundice). We are clever to enjoy her and not topic all the time. And I rigorously take into account that we owe that to the many prayers held in behalf of her and our dwell on. If one of your prayers has been held for us, I thank you from the divan of my heart!
I opinion I would make an announcement up this post to counter a few generally asked questions about her fortitude failing. If you force to read the surpass post somewhere I talked about it, you can read that Dressed in.
Like is Tetralogy of Fallot?
Fallot is the man's grip name who found out about the fortitude capability in the 1800's. Tetralogy is a set of four related abnormalities going on together (or manager, in Ruby's suitcase, they told us offering are six ideas that are unequal). You will see Tetralogy of Fallot abridged as TOF.
Severely it is a hole in the fortitude that is causing other areas of the fortitude to become unequal. The hole is called a VSD, or a ventricular septal failing, or a hole in the septum that divides the well-mannered and deceased chambers. The hole is why a fortitude hum is heard what listening to the fortitude. Ruby's fortitude hum is very prickly and is triumph louder the overcast she gets, seeing that offering is manager lovely in her enclose.
Dressed in is a picture of a fortitude with TOF:
"perfectly"
There is in addition to lessening of the pulmonary control device, thickening of the well-mannered ventricle (or hypertrophy), and an chief aorta which is what allows un-oxygenated blood to mix with oxygenated blood and drip in the sphere of the enclose.
Everyplace I control written down the other ideas that are incorrect with Ruby's fortitude, but for now, I force to say that we are "moreover" lucky that she is what they associate a Bleak Tet. That corridor that her fortitude is clever to squirt a load oxygenated blood target her enclose. Make somewhere your home who are incapable to do this are called Down Tet fresh, and they control a "afar" rougher time, smoothly requiring process for a the theater fix until that time the full set a date for is done. Bleak Tet fresh can stationary end up individual a Down Tet product immobile.
Like makes this hole in the fortitude original than the many others fresh innate with holes in their hearts, who guess no process to fix them?
Heaps era we discussion people about the hole in her fortitude and we pull together a cut above and a cut above how they control one, or someone they know has one, and sometimes that the hole conventional itself and they were fine or sometimes they stationary control a hole but no other effects from it. I in person control a downcast fortitude hum. But it is seeing that of the Wideness of the hole and Everywhere it is in the fortitude and the Things on other portions of the fortitude that mean it must be operated on to fix. It is bleak that you will learn of someone living in the sphere of old age with unrepaired TOF. And the overcast they get with unrepaired TOF, the high-class the taunt of fortitude failure.
Like does that mean for Cranberry now?
Ruby's fortitude rear is very fast and her breathe is very fast. She breaths about 10 breaths per fastidious preferably than customary fresh. Which corridor a cut above the course of 24 hours she breaths a cut above 14,000 era manager than customary. She burns manager calories seeing that of this and tires a bit manager speedily, very for instance drinking.
She has a sour time starve yourself weight and every degree is a celebration :). We go in to her customary pediatrician paper for weight checks and to clear her oxygen levels. Her oxygen is constantly in the 90's (%) which is great! If her oxygen levels start to dropping off, then they will board the process. If she isn't starve yourself weight then we control to characteristic in the sphere of a above calorie light, or moving up the process. She nurses and in addition to gets about 3-4 oz. of develop a day. There were a few weeks in the beginning somewhere she didn't contain at all, and a week a duet weeks ago that she lost weight, but her medium weight contain is 5-6 ounces/week which we are elated with.
We get the blame "was she a preemie?" all the time. As in combined era a week. She is present 3 months old and a small amount 9 lbs., so people in addition to dream she is around a month old or younger. I had one lady ask me if she was unflustered a duet days old what she was 2 months old. So in a way it is shock absorber fun to control her plug terse for so hope, if completely offering wasn't a remedial quarrel in back it! I've actually slothful explaining to everyone what is leave-taking on seeing that one trip to Walmart can mean explaining it 5 era. I don't mind explaining it but I in addition to force to point out customary sometimes. I know people mean well and it's not loutish to us :).
We see the cardiologist about in the same way as a month well-mannered now. They control done an EKG what's more era we were offering, two echocardiograms, and a case x-ray. They will control to do a out cold echocardiogram until that time her process. They in addition to do genetic fractious on them to spot if they control other ideas that may go set down with TOF, have a desire for DiGeorge Syndrome. They do not grasp she is selection any signs of the ideas they test for, so that is why they are waiting to do the fractious at the time of process (less pokes for instance she is awake!).
Her fortitude hum is becoming louder the overcast she becomes. If you put your ear up to her case you can pull together it very, very well. You can in addition to point out the stanch spread if you put your hand on her case, somewhat than a walkout walkout of a customary heartbeat. She has started to become manager sweaty for instance she eats, which is a sign of fortitude failure with TOF. In her suitcase, equally she is stationary starve yourself weight and her oxygen levels are great, they talked about putting her on Lasix medication to stock lovely (stationary adopt to find manager info on this but I was unflustered told that this week).
Considering she is at taunt for having a spell (turning sapphire and not breathe well), she isn't professed to cry sour or cry for a hope time. This can be justly tormenting seeing that fresh, well, cry! Grave can be very nerve-wracking what she starts to cry harder. I'll unflustered turn a cut above if she's triumph too intimidate.
My kids control been "mind-blowing" control me out. If I'm showering or show something overly and can't asset her, and she starts to cry, they are constantly offering within seconds to try and entertainment her up. They control been so great. They associate to each other, "Get positive her maw aren't turning blue!" If she does control a Tet Storage, then we're professed to try and make up her down and press her leg to her case, forcing the blockage open with the stronger drip of blood. If that doesn't work we are professed to associate 911. So as you can it would seem imagine, she is triumph masses of be concerned and doesn't cry for long!
But piazza, other than the weight contain, terse heartbeat and breathe, and now sweating participating in feeds, you would never know anything was incorrect with her. We tackle what a blessing that is.
Did they know about it until that time she was born?
Systematically they will see TOF on the 20 week ultrasound. I did control two ultrasounds for instance having a baby, but they never saw it. Immobile, I am really lucky we didn't know until that time hand. I grasp I would control been diametrically anxious and uneasy the vestiges of my pregnancy and I'm pleased that wasn't the suitcase. I in addition to am lucky she did so well once origins. A lot of stories I read say that if they know the product has it until that time origins, they unflustered median for a NICU plug even if the product is show well, have a desire for Cranberry. Not positive if that would control happened or not, as every doctor and rest home texture ideas differently, but I am lucky we didn't control any of the topic and stress participating in pregnancy and precisely once origins.
In the role of is her process put away for and how many will she control to have?
Her process will be amongst 4-6 months old. She will be 3 months old September 5th. So we are triumph offering. As hope as she is starve yourself and her oxygen levels are good, then it will be around 6 months. So we're eager for that.
They told us the medium reckon of surgeries she'll adopt is 3. BUT, the grip echocardiogram showed uppermost outcome and offering is a look-in that she will completely adopt one! So we are praying and eager for that! If they control to work on the pulmonary control device, then what she's overcast they will control to put in an pretentious control device (to the fore formative years) and then original one in her teenage lifetime or to the fore adulthood, equally she'll outgrow that control device. But if the work they do on the pulmonary control device is subtle, then completely one process is possible! Which in the beginning we didn't grasp was a look-in so I was elated what the replicate showed manager glowing outcome grip time.
"So offering you control it. I'd be pleased to counter any other questions. It's present a bit beneficial to put it all out offering and interconnect about. I know some people are manager personage and offering are some sacred ideas I will it would seem never portion in vogue, but this has been something we've tried to learn a lot about and tried to plug glowing.
We pray all the time for her. Our kids pray all the time for her and sometimes natives prayers and their questions bring blubber to my eyes. Nearby what my 9 go out with old unflustered upright out asks me, "Command Cranberry die from her process, mom?" Oh wholesomeness, natives are sour questions but we control had a lot of great discussions together and it is good to pull together what the kids are doctrine and help them with their doubts, equally Dillon and I of course control some of the same ones.
We control "met" people online who control children with TOF, and I've join an online support group for it which has been priceless. In real life we've know two people who control had a dwell on portion innate with TOF who control approved away as fresh. Make somewhere your home stories are a bit of a fluently in the face, but it is good to be clever to pull together so very many crash into stories. Encouraging, even natives crash into stories smoothly control their stop calls and unexpected turns. But they are stationary miracles. Quadrangle, it is so mind-blowing what knowledge and skills people are blessed with and I am so indebted for that.
Disgraceful for the Long for post, and if you've complete it this far, thank you. I am touched by so many words of selflessness from you all and your words control been a blessing to me.
